Let it snow let it snow let it snow!!!
Winter is here. The temperatures are expected to start dropping tonight and we are to have highs only in the 20's low thirtys with lows in the teens with snow showers over the next few days and into this coming week. To some of you this may not seem bad but for here in Washington this is really cold. I am looking forward to the snow it will be fun to see how Jessica likes it this year as last year she was not walking yet and was not really interested with it.
Well Jessica is doing well. We do have some things that have come up and we are just trying to work through those. Here is a brief outline of Jessica's Cardiologist appointment and Optimology Appointment.
Mondays Cardiology:
I was very disappointed with this appointment. For one they asked that we come in a little early which was more than ok with me since I had a lot to get done that day. Once we got there and got vitals and everything done we went and sat in the room for Jessica's cardiologist to come in for over an hour. Mind you she is two and this is a small room she was not very happy but we managed to get through it. Her Cardiologist finally walked in spent maybe 15 minutes with us just to say that her heart sounds the same and that she looks good. I told her that we had some concerns especially with last chest x-ray that was done during her bronchiolitis back in November she said that she never saw the x-ray and that it needed to be reviewed by Children's x-ray department not to take the radiologist report from the other hospital as it may not be accurate. UGH... This to me made me more irritated. So I agreed that I would go back to the local hospital where the x-ray was done at and get yet another copy of the x-ray and take it with me when I went to her optimology appointment and then take that copy to the cardiology department and drop it off again. And that was that. So I have a couple of calls in and have talked with the cardiology nurse and she said that she is going to talk with a few other doctors and get back to me because what happened and the fact that our questions really were not addressed at the appointment was not right. All that her doctor told me over and over again is that Jessica is complex and that her hands and feet turning purple and also the spell of turning purple around the lips and her lips themselves being purple while laughing really hard the other day is no way related to her heart but does believe that it is related to a vascular condition. Ok then if that is the case could we figure that out or at least try to figure out what is going on. Also Jessica did have an EKG which still shows that Jessica's right side of her heart is still enlarged which we knew and then also she still continues to have her partial heart block and bradycardia with a heart rate as low as 67 beats per minute while wide awake. No echo this appointment so nothing to report there. Next appointment to be schedule for a year but when talking with the cardiac nurse she said that she was not comfortable with that and with Jessica still having her EKG irregularities that she needs to come in sooner which I am more comfortable with.

Optimology:
This appointment was one of those that we were very hopeful for and knew that things were better but afraid that we would here the words eye surgery again and that is just what we heard. Jessica's eyes are 100% better than what they were before her surgery but there are more repairs that need to be done. Evidently the eye doctor thinks that her needing another surgery may have something to do with a neurologic condition. The scary part is that this surgery that her eye doctor is proposing is a lot more invasive, more painful, and a lot longer recovery which none of us our to thrilled about after the long hard recovery that Jessica had with the last least invasive procedure. The plan for the moment is that Jessica is to be in glasses for the next 2 months we are to also do eye exercises with her daily and then return to clinic and schedule her eye surgery for sometime in March if there is not a significant improvement because the longer we wait the concern is more vision loss or impairment.
So there was good and bad with this appointment. The last surgery was success and it did what it was suppose to do and is healing nicely she still has inflammation which is a little unusual but not unheard of especially with Jessica who almost always takes longer to recover. The bad news is that she is still going to require another surgery and her eye doctor thinks that this may be neurologically driven so even doing a surgery may not fix everything if that is the case.

So things are going ok. The ups and downs that we have learn to accept and expect with Jessica. We are now waiting to hear back from cardiology for more answers about the pulmonary hypertension finding on her x-ray yet as one thing that her heart doctor did say is there may be some other lung issue that we have not looked at yet and that she may have to see a pulmonologist and then of course we are waiting to hear back from the neurologist about the latest conversations that we have had with various providers concerned about Jessica's un equal muscle tone and then this new eye stuff. I am hoping this week that we will be able to get some answers and start the new year off with a little more organization wit her medical care and with more communication between her providers.

All in all Jessica is doing good even with her big sister having a horrible cough all week. So that is really good.

We send many prayers out to everyone with lots of love to.
God Bless,

Jeremy, Stephanie, Emily, Jacob and Jessica

Tonight in closing I would also like to ask you all not only for continued prayers for Jessica but also for a friend of mine and her daughter. Her daughters name is Kristen she is 21 and for almost all of her life has had a lot of unexplained conditions some very serious and life threatning others not so serious but have complicated her care a lot. She has not been doing to well this last year in particular but most recently has taken a turn for the worse. The doctors have found multiple markers for autoimmune conditions all of which will only get worse as time goes on there is no cure. My friend in particular is having a really hard time with this trying to balance work family and taking care of Kristen and the family is struggling, hurting for there daughter and really needing many many prayers not only for health but also for clarity and direction not only for them but the doctors taking care of Kristen. So I ask that when you pray for Jessica that you also send up an extra prayer for Kristen and her family too. Thank You....

Time for a quick update.

Jessica is doing well. We all had a good Thanksgiving busy but good. Jessica got her flu and pneumonia shot yesterday and so far is doing well with those. So for the moment we are in cruise control. Jessica does have a cardio appointment this next Monday and then on wednesday it is another trip to Seattle for her 5 week follow up from her eye surgery. I will post more after those appointments. But for now there is not much to report. Have a good week.

Thank you all for your continued prayers and support.

Sending Many Many Thanksgiving wishes to everyone. May this Thanksgiving be filled with many special moments and memories with family and friends.

May we all take a few extra moments this Thanksgiving to say Thanks give someone a call that maybe you have been waiting to call or just tell someone I am thinking about you.

To all of you who have and are following Jessica's and our family's journey thanks is just not enough to say for all of the thoughts, love, support, friendship and prayers. Thank You is just not enough. We love you all and may God bless you and keep you this thanksgiving and always.

I know that I have been horrible at replying to each and everyone of your emails and comments but really truly we are blessed and touched by each and every email and comment left. Thank you.

Love,

Jeremy, Stephanie,Emily, Jacob and Jessica

Wow! What a week that it has been. Time has just gotten away from me these last few weeks. Jessica still has bronchitis but her lungs are slowly but surely getting better. I took her to her pediatrician yesterday to have a follow up and have her ears checked out before the holidays due to some concerns that we had on Saturday. Jessica is still having a lot of tiredness some of this could be from her new seizure medication and some of this could also be from her cold still. I know that she is still having a lot of nights that she is waking up coughing but her Dr. thinks that it may not only be her cold causing it but that she has a little asthma and the cold and the irritation from the cold is just causing the asthma to flare up. Over all Jessica is doing pretty good even her labs for the most part were at her baseline which is excellent news. There is a couple of results that we are going to have to watch a little more closely specifically her albumin, magnesium and potassium levels but for now even though the trend is going down we are still ok just something to watch. Her calcium is again on the rise and we are still waiting for the PTH result to come back and that will help get us a better idea if there is a change that we need to make with her calcitriol medicine but for now we are just waiting.
I have not heard from nephrology this week despite several attempts to contact them so hopefully we will hear something next week into any changes that we may have to make.
Also after several attempted calls and messages left I finally got a call back from Jessica's neurologist office from the nurse and she says that her Dr. is still catching up on messages and that he is aware that Jessica is possible having more neuro problems and that she will call me back on Friday but for now they have moved up our appointment for the next available which is now Jan 2 rather than in February. And if she gets worse then I am to call the on call neurologist and have her evaluated sooner.
I think that she will be ok but there is concern especially after this weekend and her struggles on Saturday with constantly falling and just not having good balance and coordination. I was thinking some fluid or an ear infection possibly but when her Dr. looked at her yesterday he said there is nothing wrong with her ears so it wasn't that. Also Jessica has been so irritable and seems really agitated more I am not sure if this is a side affect from the medication or not but the nurse said that it wouldn't be a common side affect if that is what it is. But then again we are talking about Jessica here. Also since the issues with balance and coordination we noticed that her eyes have gotten worse I am beginning to wonder if her eyes may have some neurologic connection going on with them and not just muscular issues the nurse said she will mention this to her neurologist too she said it could be possible.

A big ooops I almost forgot a couple important things. Jessica has speech therapy again. Thats right her speech therapist called and agreed to take the secondary insurance that doesn't pay much of anything but she felt led to. It is only 30 minute sessions a week rather than the hour but it is 30 minutes more than she was going to have. 30 minutes a week that we are very very blessed and grateful to have. Thank you for your prayers they have been answered. On not such a good note though I received a call yesterday from Jessica's physical therapist and she said that she will see Jessica for another 1 or 2 visits to make sure that her orthotics for her feet are fitting and doing ok and then she will be in essence discharging Jessica from therapy not because she is ready to be discharged but because we have called and canceled one to many times do to Jessica being sick. I have tried so so hard not to cancel her PT or any other appointments unless it is necessary so I feel like I have somehow failed Jessica from trying to protect her and others when she is sick. I am taking this really personally. Her therapist has known her since she was just a couple of months old and has always known that Jessica is medically fragile and how she doesn't do very well with extra things when she is sick. Actually there has been occasions that i have called her therapist ahead of time and even asked her about bringing Jessica in or not and she has told me to keep her home and let her get well. So I don't understand all of this. We are suppose to talk more about it on Monday at her physical therapy appointment. I will let you know how things go.

Over all with all things considered Jessica is doing well. What is going on is I guess to be expected. Little bumps in the road.

We have so much to be Thankful for. We have been so blessed.

God Bless

Night three of her seizure medication and all seems to be going well in that department but on another note Jessica is once again sick with a cold. I am not sure what is going on but I have many phone calls and emails into differant people to see if there is anything that we can do. It has only been one week at best since she has been done with the last cold. This is just crazy. I was going to take her in for her flu shot today but yet again had to call and cancel as she had a temp this morning when she got up.
I am just really stressed tonight. She seems to be catching everything. Everyone else in the house is healthy and doing good. Jessica barely leaves the house unless it is to go to therapy or doctors appointments maybe once a week to the store and we all take off our shoes and wash our hands soon as we come in the house.And we should have stock in hand sanitizer we use it non stop.

I am sorry for not sounding up beat but tonight but I feel beaten. I feel horrible for Jessica. I just wish that I could take it all away from her. It is hard to watch her trying to sleep but cant because she is coughing so much, wanting to go outside and play but gets tired really easily and just lays around the house and now she is bringing tissues to me to wipe her nose rather than me coming to her. UGH.... Cold and flu season cannot be over soon enough.

Ok there is one other thing tonight. For all of you that are comfortable could you please send me your email and home address directly to me email account or email me here I cannot promise but I am trying to do a little something.

Thank you all so much.

A quick update!

Jessica has been doing really good the last few days and has had a good weekend. The first in a long while. Her cold for the most part is done even though I thought that it was coming back I was wrong. She only has some cough from time to time so that is good. This week should be a pretty quite week other than her therapy on Thurday and Friday and possibly sometime this week a flu shot. We will see.

So Jessica is doing really good. It is for the most part smoothe sailing for the time being. I will be starting her seizure medication tonight which has me a little worried as it is a new medicine and all and my gosh the directions could not be anymore confusing the pharmacist was even shaking his head. It took 2 pharmacist and 1 hour to figure it all out.
Prayers please that she will do ok with this medicine and that I will be able to understand these very confusing instructions. The doses change from morning to night and day to day so yes prayers please....

We will let you know how things go. Prayers also that this medicine does not affect her kidney and that we don't irritate her liver which has been happy but not knowing what caused it to be unhappy a while back always makes us worry...

Thanks to all of you for all your support and prayers it means the world to us and really helps to lift us up and sustain us. God Bless

Wow! Where has the last 5 days gone? It has been a bit strange here. First off we got a call Friday evening that Jessica's UA is ok possibly got contaminated with just normal bacteria that is on everyones skin so that was really good news. second I took Jessica back in to see her doctor on Thursday and he said that she still is really junky sounding but better than the last time he listened to her air was moving and things were broke up so that was good. He heart sounded a little better to so I must say I am a able to breathe a little easier now. I am still worried and we have to monitor everything really close but for now things are ok.

Jessica over the weekend seemed to be coming down with another cold but today I think that it may be the same cold but just cycling over again at least it seems that way. Her cough is not really any better and she has been so so tired. But tonight she seems to have a little more energy so that is good. Her appetite has been really good for her so that makes us very happy.

On the down side we have run into a road block with Jessica receiving speech therapy. I got a call Friday evening from her speech therapist and she let me know that our insurance has denied coverage for Jessica to receive speech therapy. The insurance reason was because Jessica does not have an injury but is delayed. I called the insurance company today and told them it is not that I am electing to have speech services for my child so she can speak 200 words at 2 years old but so she will actually speak even 5 words would be nice. I explained to them that Jessica has multiple medical conditions and that she does have a brain injury she has brain damage and we dont know exactly how this is going to affect her as the doctors have not been able to identify where or how much there is. So the lady that I spoke with says that they need a copy of her medical records stating this but they still dont know if they will approve of Jessica getting speech therapy it will take 3-4 weeks before we may know anything.

So I ask that you please pray about Jessica's speech therapy and the insurance approving her for these services. We have a wonderful new speech therapist and Jessica has really done well with her from the begining I am not sure what we are going to do if Jessica cannot get speech therapy but we do know that this is in Gods hands and his plans are perfect I just wish I knew what his plans were right now.

Thank you all for your thoughts and prayers.

A long and very delayed update. I am sorry.....

Our trip to Seattle was long. Jessica slept all the way up there woke up for her appointment was pretty active while there but before we were even out of the parking lot she was asleep again and slept all the way down to her appointment in Federal Way and then again was awake some for her appointment just to fall asleep again for the long 3 hour drive home. The normal 40 minute drive from Federal Way to our house took 3 hours. The traffic was horrible:( Jessica was awake for maybe an hour after we got home and fell right to sleep in daddy's arms. Needless to say she was very very tired yesterday and continues that way today. Lucky for us especially for Jessica she has no appointments today so she is able to sleep without being woke up. Although I don't think that is in her brothers plans...
Below is a little outline on how the appointments in nephrology and orthopedics went.
Nephrology: Went well. The sad thing was that her main doctor that we see only every 3 months was called for a major procedure so the visit was very short and I was not able to ask all the questions or begin to ask her the questions that I had nor did we talk about what we were suppose to. The nurse practitioner that we normally see every month was there also and spent a lot of time with us but still things that needed to be talked about were not all talked about. But it is a work in progress. I spoke with them about having Jessica's appointments moved to every other month and they were ok with appointment every 6 weeks so that is nice. They said from the kidney stand point Jessica's kidney function is staying pretty much the same and not really much that can be done at the moment. Jessica still has to get labs every 4 weeks to make sure things are doing ok and we are suppose to have a contact call from nephrology at least once a month. They told me though that things can change and at some point we know that they will and when they do we will have to go in for more frequent visits when that happens. I am ok with this.
They decided not to have labs drawn yesterday but did run a UA and those results were not back when we left but since then have found out that they are sending it out for culture as it had white cells, red cells, protein, and gram positive stains. This may not be good at all. I am praying that there is not an infection but like the nurse said there is a good possibility. We will just have to wait to find out hopefully we will know something as early as tomorrow.

We also have some what of a plan typed out for when medical stuff comes up with Jessica. I am very relieved to have this it will hopefully make things easier as far as getting stuff done when it is needed and her normal doctors are not there. Because what would normally be done sometimes others don't see a need for it and want to wait and that does not always work well with Jessica as we know Jessica likes to do things that are not by the book. Also with this there are orders put in for others to see and for me to make sure that they are done for an example when she is lethargic to have labs drawn or when she has fever and no explanation to it to have a UA done ect ect..... We are all hoping that this will make Jessica's medical care a little bit easier for all involved and another good thing that they put in there is that her potassium MUST BE MONITORED ALWAYS especially if they are wanting to or if she is receiving potassium. Yeah maybe this will give us some insurance so what we went through with her eye surgery won't happen again.
Orthopedic: This appointment was very quick. They took a quick look at Jessica's leg and foot an noticed that things were not any better but maybe worse so they want to send her to a neuro doctor that specializes in orthopedic neurologic conditions so we are now being referred to the neuromuscular clinic. I am not sure when she is going to be seen by them as the doctors and staff are out this week for a conference and wont review the request for referral in till sometime next week. The orthopedics department believes that what is going on may be neurologic and also gave us three possible diagnosis canvus foot, claw toes, and charcot marie tooth.

So a lot of information again and Jessica continues to keep us busy in every way. Jessica is still really sick with this cold and today seems worse than yesterday. UGH... I am planing on having her seen again before the weekend just to make sure things are not settling in her chest more. She will be taking her last dose of Zithromax tomorrow so praying hard that things will get better soon.

Well sorry for the long and maybe confusing update. It has been a long week already and not much sleep I am running on fumes tonight.
I will update more when I get her UA results.

Sending much love and prayers God Bless

Just a quick update. Jessica is sleeping for the moment but not very well as she keeps getting woke up from coughing. In just a couple of hours we will headed up to seattle for her nephrology appointment and orthopedic appointment.
I am again asking for prayers tonight. I took Jessica into her pedi today and he noticed that her murmor didnt sound right and was much differant and louder than it has been. This concerned him enough that he called her cardiologist right then and there and would not let us leave intill he heard back from her. Anyways she called him back pretty quickly and the plan is for now to limit her nebulizer treatments to almost none and to watch her and then today while at childrens they will listen to her again. Her doctor doesnt think that it is the nebulizer treatments but maybe a valve or something that is maybe leaking more or just stress on her heart from being sick. It is concerning but for the moment other than her cold she looks good and is NOT in heart failure or anything like that so we watch and wait and see if this goes away or if we will have to go in for testing with her cardiologist before December's appointment. So many things went through my mind today and I couldnt get past her doctor saying that her heart didnt sound right the last time that I heard that is when we found out that she was in heart failure. It was scary today but like her doctor said maybe Jessica is just doing one of her weird things again and who knows maybe next time when we listen it will be gone. He did listen to her several times today when we were there and in several differant positions but he still heard the noise not in the front at all only in the back another strange thing he said.

Ok Jessica's is coughing again so I must go I will update when i get back from Seattle. Thank you all and have a wonderful day. God Bless.....

Hi everyone,

It has been a fairly quite weekend around here. I hope that everyone had a good halloween and that there weekend went well. Jessica is pretty sick and her pediatrition had me go pick up some antibiotics again. He will see her in the next day or two depending on how things go. Things are not too good as far as her cold goes her eyes are healing slowly but with this cold I am sure it may slw the healing down but other wise she is ok. Please pray that this cold is short lived and that it doesnt turn into anything more than just a cold. She has been coughing almost non stop today so that does concern me as did it concern her doctor.

more later

We just recieved a phone call about Jessica's ultrasound today. I guess there is good news and not so good news. I am confused. The radiologist report states that her kidney has grown aprox. 1/2 centimeter give or take in 6 months. I am thrilled that it has grown but to me this doesnt seem like much in 6 months. Good thing is that there are no cyst or hydronophrosis. The meat of the kidney they say looks no better and is worse. They also explained to me that Jessica's kidney is about 25% the size of what a normal person who has two kidneys would be. This is about 10% worse than it was 6 months ago when it was at about 36% the size of what a normal kidney would be. If a person had only one kidney they said they would expect a kidney to be larger than normal so in comparison to that Jessica's kidney is very very small. We all would have liked her kidney to looked better and grown more but we are thankful things are not horrible.

Optimology appointment
This appointment went well. Her eye doctor apologized over and over again for our experiance on Monday that I really don't want to get into it other than it was one of the worst experiances that we have ever had with childrens and I hope that Jessica or anyone else will not have to go through what we did. Things happen and we are forgiving people and we have forgiven them and things are ok.
Jessica's eyes are looking really good but we still have another 5 weeks before we will know the final results as things could still change. They are going to keep her on the antibiotic eye drops for a few extra days because there is still a little bit more irritation, inflamation and slight infection not to mention her stitches have not disolved yet and it will help to lubercate her eyes so the stitches are not so scratchy and help so they will not get irritated.

Not so good news is Jessica is once again coming down with a cold. On our way back from Childrens today she was sneezing and had has a runny nose. That would explain why she was not really herself yesterday and would explain why after just being up for an hour today that she fell back to sleep. UGH.. I cant wait for cold and flu season to be over with.

I hope that you all have a wonderful Halloween. May God Bless you all. Our thoughts and prayers are with you always. Thank you for your continued support and prayers. We love you all....

Wednesday! Jessica is doing ok. I am concerned that she maybe getting an infection in her right eye but when I talked to optimology and told them about her eyes swelling more today than yesterday and the redness and warmth the optimology tech said that we are to give it another day or two. This concerns me but we do see her pediatrition tomorrow so I am sure that he will take a look at them to and if he is concerned about them I am sure that he will call the optimologist at Childrens. Another issue that has happened today is she has had a little bit more pain today hopefully it is just because she has been up and a little more active which is good to some degree but I would like to have had her resting a little longer.

Other than that Jessica seems other wise to be doing good. Her appetite is horrible but I expected that. I posted a couple of pictures of her eyes from yesterday which look better than they do today but still the pictures do no justice on how her eyes really do look.

Have a good evening! I am not stating any names at the time because I do not have person but I ask that you please pray for a little boy that had to be taken by ambulance to another hospital today for emergency surgery because of some kidney complications. If you are reading this our thoughts and prayers are with you.

Ok real quick, the doctors office called back and said that we are just to give things time and Jessica maybe having side affects from the medications that she had yesterday. Also we had issues with keeping her warm last night as her temp was at 95 most of the night and now is goes up and down from 95 to almost 101. Doctors just said to watch it they seemed more concerned about her being so cool than her temp going up. Her eyes are still really sore and now we are dealing with sensory issues with her face anything around her face she panics gets upset and screams it doesnt seem that she is dong it because her eyes hurt but more like it is terrifying to her. She has never acted like this before after surgery so I am not sure maybe its her being two maybe something else. She will be ok though. Now the trick is to get a cloth on her face to help reduce the swelling in her eyes but she wont let me.

Over all Jessica seems to be doing ok recovering which seems to be a little slower than what is expected but that is just Jessica. Please continue to pray for a good quick recovery.

Morning update..

Jessica is not feeling to well and there may be a problem with her left eye I am waiting for the doctor to call me back. She was able to get just a small amount of sleep last night so that was good.

I will post again when I hear something back from her doctor. Thank you for your continued support and prayers

We are home... i not sure for how long though as she is not doing very well annd having a lot of pain issues. Her pedi just called in some stronger pain meds in hopes that it will help. please continue to pray. I have alot more to update but I will have to when things settle down.

Thank you

Jessica is out of surgery and safe. Had to get extra labs done but so far ok the anesthesiologist stopped potassium after she got a call from the neph. Got to get back to Jessica more when time allows

thank you so much for all your prayers and support.

Jessica just went back for surgery at 11:06. please please keep Jessica in your prayers. I am not comfertable with Jessica anthesiologist sp? at all she didnt want to listen to any of my concerns and is going ahead also with a iv that has potassium in it amongst other things that other docs now better not to do. This could be big trouble for Jessica as her potassium always runs on the high side. I told her that she cannot have potassium unless it is monitored and she did not listen to me and says that she is going ahead with her original plan. Yikes.. I am scared The last time they gave her potassium through her iv when her potassium was normal it went through the roof. Her kidney just does not process potassium well at all and the person just didnt seem to understand that.

I am sorry but I am scared and worried. scared of the complications that can happen with high potassium and the worried about the complications that it could have on her kidney function.

Please pray and I will update again when I can..

Thanks,

Stephanie

Just a quick update. I just got a phone call from the surgery center Jessica's eye surgery will be at 11:00 am on Monday October 27th. Many prayers please that this surgery will go well and that there will be no complications and that Jessica will be ok and have a good quick recovery.I will try and post updates on Monday when time allows.

Thank you,

Cross family

Wow where did this last week go. It has been an ok week for Jessica. She has had some very tired not so good days but she has also had a few good days mixed in there as well.

Jessica met her new OT on the 9th so we have had 2 sessions with her already and I am also impressed with her. She is very good and Jessica is taking to her well.

On Friday Jeremy and I went up to Seattle Childrens for Jessica's neuro appointment and that went ok. The neurologist thinks there is a chance that Jessica is having seizures that we are not aware of but he is not sure but thinks that more than likely the episode that Jessica did have a while back was a seizure and because of the concerns of her having possible seizures topped off by her having her tremors still he is wanting to put her on an anti seizure medication and see if this will help with anything. (Waiting on the nephrology doctor to make a decision as to if she can take this medication or not). Also another reason for this is he stated that Jessica's MRI and CT scan was looking ok but there is brain damage somewhere to what degree and how much he doesnt know but the way that she is presenting and continues to present to him he said that there is no doubt that there is damage somewhere.

Ok brain damage this really knocked Jeremy and I back for a moment because they have always given Jessica the term developmentally delayed and told us that her Mri and CT looked ok so we thought to that she didn't have brain damage but the truth is she does have brain damage and the seizure medication is not going to take the damage away but if she is in fact having seizures it will help from more damage occuring. I called the neurodevelopmental doctor and left a message with his nurse about this appointment with the neuro and he called me right back yesterday evening on our way home and explained things to me a little more. He stated that Jessica has had and continues to have so so much going on and with knowing that her brain structures are intact he to agrees that there is damage to her brain causing some of the conditions that she has. ( tremors,possible seizures, and all of her delays.) I asked him about cerebral palsey since it has been mentioned to me from others and also in my readings Jessica does fit in the catagory some and he said yes. Although she does not so much have all of the outward features she does have a lot of the other signs but this too could be from her microcepahly or a combination of the two. Oh and the brain not growing as we might expect is from the brain damage too which can also cause all of her symtoms or at least most of them. The neurodevelopmetal doctor is typing up a note this week for me to give to the therapist in regards to all of this and says that the therapy that Jessica needs is one that a cerebral palsey kid would recieve. He told me that all of what is going on now is that we are putting more labels to everything thats all nothing is new just putting names to it other than developmentally delayed.

Jeremy and I are somewhat relieved in one since with having more names and explanations to what is wrong other than developmentally delayed but are heart broken to hear the words brain damage and also a little scared about putting Jessica on seizure medication if in fact the nephrology doctor allows it. But we know that God has all of this in his hands and under control. Doctors are working so hard to figure out Jessica and to help her and although they say that she will not be like others her age that is ok we are all differant and God knows and God has plans. And knowone except for God knows what Jessica will be like and whatever happens we love her more than anything and wouldnt change it for the world.

Have a wonderful weekend.

Wow it was a packed day of appointments. We left our house this morning about 5 and just got home at 4:30. Jessica had appointments with nephrology, optimology, and anesthesia for her pass appointment for her up coming eye surgery on the 27th.

Here is an outline of Jessica's appointments

Nephrology: Everything for the most part here was ok. Jessica did have some slight edema. Her creatine level was the same so that was good her BUN was elevated her potassium is on the upper limits of normal again and her calcium level was high again also. So we are to watch her sodium, potassium and calcium intake and then next month they will redraw her labs with a PTH ect.. to see what is going on we may be having to adjust some meds. Jessica has gained a lot of weight this week so we have to watch that some of this weight maybe a little water weight time will tell.

Optimology: Not such a great appointment. Jessica's eye sight is getting really bad. Her strabismus/ exotropia is still very present and actually worse than it was at the last appointment so surgery for sure. The plan is to have her surgery done on October 27th. After the surgery Jessica will have to wear arm splints for 2 weeks to keep her from rubbing her eyes as this could cause serious problems and possibly emergency surgery and then also to prevent infection. After her eyes are recovered enough Jessica will have to wear eye patches for a while then possibly glasses. As explained to me today by her eye doctor this surgery will help but there will be more surgeries in the future to keep her eyes corrected and to help her vision. As her vision from what I understand at the moment she is seeing about 20/225 in her left eye and anout 20/135 in her right. I think that I understood this right but I may be wrong. Either way her vision needs some help and that is what we are going to be working on.

Pass Clinic: This went well. Anesthesia is considering having Jessica stay the night of her eye surgery just to be on the safe side and make sure that she is doing ok. I guess that I am ok with this but asked if she is doing really well that we are able to come home after recovery the same day. The nurse told me that she will talk to the anesthesiologist and the doctor and see what they think. As is at the moment she is scheduled for short day procedure.

Over all the day was long but ok. Jessica did really well for the most part she was more than worn out and ready to go by the last appointment. I don't blame her mommy was ready to head home to. So we will be making some diet changes to hopefully help her potassium and calcium but other wise everything remains the same.

Thank you for all your support and prayers.
God Bless the Cross Family.

Oh and one more thing Jessica's cold is much better and despite her cough her lungs sounded very clear today. wonderful news we are more than ready for this cold to be gone....

Good Monday Morning!

Well for the most part we have had a good weekend. Jessica continues to be sick with her cold and had a little more trouble yesterday and yet again today with it so we are headed back to the pediatrition early this afternoon and have her re checked as she started to run another low grade temp this morning. She still sounds pretty horrible and the nights seem to be the worst. Despite Jessica being sick with this cold and still not feeling well she ate amazingly well on Sunday. Probley the best she has ever ate in one day. We were just taken back that she wanted to eat so much. Today though it is not so. But she is also having some more tummy trouble but this time I think that it is from her antibiotics but then again maybe her stomach is in shock with all the food that she ate. Only time will tell.
Thank you for your continued support and prayers. I will update possibly again this afternoon. As for now Jessica is not any worse but not any better. We just hope with this low grade temp that it is not something more going on

Good Morning!!!!
Jessica had yet another rough night last night and is sounding horrible this morning. But mainly wanted to post and let you know that her eye surgery for the 13th of October has been postponed due to her being sick. The new date is Monday October 27th. Please pray that she will be well and will be able to have her surgery on this new date.

Have a wonderful weekend. God Bless

Well this day comes with some good and some not so good news... Jessica continues to have her horrible cough and it seems a little more today than yesterday and she is having less and less energy. Today will be day three of her antibiotics so hopefully they will kick in soon. I feel as Jessica is starting to get tired of being sick. She keeps looking at me from time to time today with such a look like mommy make me better.
Her final results of her chest x-ray is that she has very bad bronchitis no pneumonia. Thank you Lord. Jessica's heart size is inlarged but cardiology assured me today that we really don't need to worry about it unless she is showing more signs that something is wrong. They also stated that while her pulmonary hypertension is very prominent and she has some pulmonary edema some of this could be because she is sick while some of it could be residual from her heart conditions. Jessica has a cardiology appointment in November so they said that they will check into it more at that time unless things warrant for it to be checked out sooner.

So over all things are looking better we just need to get Jessica well. This may take some time but we are doing everything that we can to get her feeling better. I am trying to get in touch with the eye doctors to see if we will have to postpone her eye surgery that is scheduled for October 13th but have yet to hear back from them. Please pray that Jessica will be well enough to get her surgery done and that they will give her a little more time to get well before cancelling her surgery.
More updates to come in the next couple of days. Thank you for all your prayers. God Bless

Also no results are back yet on the Whooping cough.

Ok it has been a long day today. I took Jessica to the pedi this morning at 10 and was not home till 3:30 or so. The on call pedi says her lower lungs sound pretty good but her upper lungs sound a little congested. She sent us over for a chest x-ray and whooping cough test and so far we dont have any results in for the whooping cough but the chest x-ray is a little concerning. Jessica's pulmonary hypertension is very present, her heart is showing signs of being slighly enlarged, and there is some congestion in her lungs. these are the prelimenary results. I have a call into cardiology and they are just waiting for the report to be faxed to them and said i should here back from them in the morning. They said not to worry to much and that we will have to see what her cardiologist has to say. As far as the congestion her upper airways she is covered with antibiotics and now a 2 day course of steroids and then also more nebulizer treatments so there is really not much more that any body can do at the moment we just have to wait and see if things get better or not. So we are a little concerned with these findings but not too worried just yet. It is in Gods hands and we trust in him that everything will be ok. Things may be a little rocky right now and for a while but we are just going to take this one thing and one day at a time. More Later,

Continue praying please. Pray for answers from doctors tomorrow and that this finding with her heart will turn out to be nothing to worry about or run more test for and that she will get over this cold and soon.

Change of plans. Pedi called me on my way to hospital and said to wait a little longer and try another nebulizer treatment if that doesnt work and she gets worse to take her in then. If we can get through the night then they want her seen in the Pedi office in the morning and they are going to run more test including checking to see if she has whooping cough which they are highly suspicious of right now. I am so scared. This last coughing spell that Jessica had she started to turn blue around her lips and was gasping so hard for air. Please pray that she gets better soon and that maybe we can get some more answers tomorrow.
She coughing again got to go.
Thank you so much

Headed to ER

Ok we are back from Jessica's doctors and he thinks that she has Bronchtis. He has started her on a course of Zithromax for 5 days so we will see. Hopefully this helps and things dont get any worse. She seems to be doing a bit better this afternoon energy wise that is but is still very cranky and miserable. Thank you for your prayers.

Just another really quick update

Jessica has gotten worse through the night and woke up pretty raspy and croupy. We are headed back to her doctors office at 1:40. She also has been crying all morning and is not at all feeling well and is very tired. I will update after her appointment. Prayers please that this hasnt turned into more than just a bad cold.

Well it is around 11pm and we are still home. Just talked to the on call pedi and let her know that things were not going very well. She said to continue with nebulizer treatments every 4 hours through the night and if things got any worse to take her right in. Jessica is not doing to well. She responded pretty good to her first breathing treatment today but the ones there after have not helped much. Pedi's concern is that this is more than just a cold. I am still holding onto that this may just be a cold but also know that Jessica is not doing very well and that she is having a really tough time tonight. I still may need to take her in but for now we are home. I am to take her to pedi first thing in the morning if we are not already at the hospital. Another point that the pedi mentioned is that maybe somehow Jessica has a little fluid over load and a cold on top of it. She was not sure though. I don't know what to think about that.
Well while she is not coughing at the moment I think that I am going to go to bed and get some rest while I can. Keep praying please that this is only a cold and that she will be able to recover from this quickly with no complications.
Thank you for all your prayers and thoughts.

Good Morning,

Just a really quick post. Jessica had been doing really well. She developed just a slight cough on Friday night but no signs of anything else and no fevers she was also running around playing as usual on Saturday so we didnt think to much of it. Well last night whatever the cough was from hit her hard. She has had a really tough night. Still no fevers but has been up much of the night coughing and crying. I am waiting to here back from the doctor but we may have to take her in today and have her checked out. Please please pray that this does not turn into anything serious. I am just really worried. She sounds horrible.

I will update when I know something more.

God is so good. Thank you all for reading all of our post and following our journey for those who did not read my last post I was having a very difficult day. Not saying that the last day or two has changed much but your prayers are helping. I have had some more peace and a lot of things are starting to fall in place with Jessica's therapies. Ok I must back up I think that I may not have mentioned that we were having trouble with Jessica's therapies and trying to find new ones. For those of you that were aware of these issues and those of you that were not well today we had a really nice meeting with one of Jessica's birth to three therapist and she suggested that I call a person that works with both OT, Speech, and feeding therapy. I talked with her on the phone today and I so far fill like this may be a perfect fit for Jessica. This woman sounds so sweet and so willing to work with us with whatever and however it all works best for Jessica. Her schedule is a lot more flexable than what her other therapist can offer and when Jessica is sick I shouldnt have to worry about her time slot being taken and she also takes both of our insurances. Thank you God for allowing all of this to fall into place and thank you all for your prayers. We meet with Jessica's new OT/speech/feeding therapist next Thursday at 2 I am so excited. I will keep you posted.
Thank you all again so much. God Bless

Hi,

Jessica is doing good. Continues to be a bit more emotional and tired these last few days but is ok. It is Jeremy and I that are not doing as good let me explain.

I have not been conmpletely honset with all of you on how Jeremy and I are doing with everything.. Jeremy and I have some really good days but we do have some really horrible days and today and this last week has been that for me really kinda in the dumps days. It is not that God is not giving us everything that we need it is just that I am starting to learn to be honest with myself. And to do that I have to start and be honest with everyone else around us to. I think that for a long while now except for every now and then I have been numb to my own feeling hiding them and not letting them out. Trying to be super woman/ mom/wife you name it. Its like I know what all is going on and I hurt but not the sadness and hurt that I have been feeling this week. Things for some reason have become more of a reality and not dream like reality. I hurt. Jeremy hurts. We are not angry at God but what the enemy has done. And im the other hand I feel so blessed so fortunite to be trusted and given Jessica for us to take care of. Our 3 kids our the best gifts that anyone could ever receive. Jeremy and I are both very confused at times and also feel alone at times. Almost knowone not even close family and friends seems to understand what we are going through and we know that it is hard for others to understand it but a little more understanding from others would be nice from time to time because we do struggle we are not perfect and it is not as easy on us as I have made it sound. Don't get me wrong here. I dont want all of you to think that we are ungrateful for all of your thoughts, prayers, and messages it's what keeps us going.So please keep sending them. THANK YOU THANK YOU THANK YOU..... We love you all and send our love and prayers your way as well.

I guess what I am trying to say is I just want to be honest with you that we are struggling, worried, scared, sad, hurt, I think every emotion that is out there even grief for what we dreamed for Jessica is not what is happening. But we know that God is bigger than all of this and that He Is In Control and that this is his plan for us. Please just pray for answers, for us to have peace, and more understanding , and above all for Jessica to live a long long life. we fear so often that we could loose her especially with all the unknowns or all the not understood things about her.We often get reminded everyday even today at therapy how medically complex that she is.

Thank you all so much for taking time to read this and following Jessica's and our journey. Really truly it means the world to us. We love you all...

Hi Everyone,

Well we just got back from our vacation to Yellowstone, Wyoming.... The weather was wonderful a little chilly at night but could not have asked for better weather. Jessica as well as her brother and sister all did very good on the trip and enjoyed some time away from home. It was so nice having a trip and coming back with Jessica healthy so far. The last few times that we have done anything this year Jessica always seemed to get sick on the last day where we were at and then came home sick. Not this time. Thank you Lord.

We are just 3 weeks away from Jessica's eye surgery but intill then things should be fairly quite other than her normal appointments with physical therapy, eating/speech therapy and then her bi weekly check up with her pedi and I think in there somewhere we have a kidney appointment and then of course her pre op appointments but this to me is fairly typical and actually not very much to do. Now on that note I do have a lot to get done around the house and then whenever the rain decides to stop even for a day we have lawn work that needs to be done. There is always something to do but we fill blessed in many ways and also feel very renewed it was a much needed break.

On the down side we got back from our trip with a medical transcription of Jessica's neurodevelopmental appointment that we had right before we left and as I know what he said to me during that appointment having it in black in white typed on a sheet a paper makes all that much harder for us. It is also confirmed that Jessica has MICROCEPHALY. For more information on this here is a link. http://www.ninds.nih.gov/disorders/microcephaly/microcephaly.htm

This is what is typed.

"While it is reassuring that there are no abvious structural abnormalities in the brain, I am sure that there are some differances in how her brain manages and processes information. I do not think that we can make specific predictions about what Jessica will or will not be able to do over time. I expect that she will always require some level of additional care and support. I do not know if we will ever see the "catch up" in her development that her parents have hoped for. I would hope that there would be additional intervention services for this child. It would be very important for us to develop other methods of communication for this child to try and address some of the emerging and evolving behavioral problems for this child. "

So Jessica enjoyed the trip a lot she did amazingly well for so much time in the van but suprised all of us as to how much she enjoyed all of the trip and she loved loved loved the animals in yellowstone. She takes in so much and studies things it really amazes us.

We had hope that Jessica would not been diagnosed with Microcepahly but continue to trust in God and know that Jessica is doing well and continues to prove the doctors wrong from time to time not always for the good but the good is what we are holding onto.

More to come later this week. And possibly some new pictures of our trip.
Thank you and God Bless

Good Morning!
Sorry about the delay on up dating how Jessica's Nephrology and Neuro developmental Appointments went on Tuesday. Everything went fairly well. Jessica is doing good. Her kidney stuff is all stable and they are happy with how she is doing now that she is over whatever that she had just a few weeks ago one area that they want us to watch though is her weight. She is still down about 2 pounds and they want to see her gaining again. As many of you know gaining weight for Jessica is difficult to say the least so they are going to give her till her next appointment and if she is still having a hard time regaining her weight back then they will change her calorie intake to help her out for a while. They are holding off for now and giving her body a little more time to get on track and start gaining again not to mention what change to Jessica's diet does to her system. Yeah I much rather weight and see if she will start to gain again without making any other changes. No kidney labs this appointment they wanted to give a break since she has had so many labs this last few weeks not to mention all the blood that immunology needed last week for there test. I was happy that she didn't have to get labs and if Jessica was older to understand I bet she would have done a happy dance.

Neurodevelopmental appointment also went very good. Some concerns but it is just things that we are already working on or things that we have to do more therapy for. This doctor that we saw was one of the doctors that was on the floor on Jessica's third hospital admission when she was just weeks old. Other than her pediatrition he was the only other doctor that took time to listen to me and understand my concerns rather than just have things but cut and dry and he to believed as our pedi did that there was more going on with Jessica than failure to thrive. He was wonderful again on Tuesday and was so prepared to see us. He has done his research and rather than me taking a long time to explain Jessica's history he was telling me all about her. What a nice change that was. I have always like this doctor but after Tuesday I even have more respect for him and I am very greatful to say the least. He understands, he listens, he is concerned, all the things us a parents want in a doctor he is other than Jessica's pediatrition he is the only other doctor that has been as understanding and as on our level as parents but yet professional it was nice. Now I am not trying to say in anyway that Jessica doesnt have good doctors because she does she has great doctors and a great team that takes care of her and we are more than greatful it just doesnt seem that they understand our concerns as he does.

Ok enough of that. The appointment went well he wants Jessica to be evaluated by speech there at childrens and see if there is anymore that they could do to help us and help Jessica. We also now have the concern that Jessica has a very small head under the 3% of normal so her brain is very small to she may possibly have Microcephaly which in a lot of ways could explain Jessica's global delays that she has especially with her speech and motor balance and coordination also these kids can have seizures we are waiting to get more information and see if this is going to be confirmed or not. Her doctor says that Jessica is at about a 11-12 months in her speech and motor skills and about 14-15 months at best with comprehension. This was discouraging to us. He says the first couple of years are the most important for brain growth and development and there may always be developmental delays with her and she may need service for a long time. I was hurt when he said this as everyone else has always told us and we have always known that Jessica is globally delayed but we thought that it was do to all that she has been through not because her brain is small. We are still confused and trying to sort all this out. One blessing and the doctor said himself is God has given Jessica all the structures in her brain that she is suppose to have it is just getting all of it to work. He also noticed that Jessica was having a lot of tremor activity again and that it was worse when she was in the process of doing things such as taking a lid off of the container ect when she concentrates on something it makes it worse now the tremor we knew was there but not anyone has told us that it was worsened by activity. I am waiting for the neurologist to talk to us about this. As this may be a change that Jeremy and I may not have noticed he said since we are with her everyday.

Over all the neurodevelopmental doctor says we have to give things time to see what outcomes that we are going to have but wants to really push her with therapy's.

Speaking of therapy I better rap this up as Jessica does have physical therapy is just a little while.

I will close with this. Jessica is doing well and we are headed out tomorrow for a trip to Yellowstone and possibly the north rim of the Grand Canyon. We were suppose to take this trip in June but of course it got postponed intill now. We are very excited and happy that we are able to go. Please pray for safe travels for us and I will post pictures when we get back next week.

We love you all and thank you for all your support and prayers. May God Bless each and every one of you. And may all of us also remember those affected or ones that have lost loved ones on this day 7 years ago and for all those service men and woman and families that have lost there lives or there family members and those that are still serving . May God Bless you all.

Well Jessica turned 2 on Saturday September 6th. Jessica had a very good day at the zoo and enjoyed all the animals especially seeing all the fish in the aquarium. She just loves fish and water.

It is amazing to me that she is now two. My little baby is growing up. She is a toddler now. It seems like a switched has turned on in her the last week or so. She is exploring things more, trying new things and really really trying hard to talk to us. I know that it will all come with time. We are so proud of her and she continues to amaze us each and everyday with her courage, strength, bravery, determination and so so much more.

God has been so amazing and to watch everything that he has and continues to do in Jessica and in our lives and the lives around us has just been a bleesing and it makes me in ah.

Thank You all for your continued support and prayers you all have helped us very very much to get through all of this too.

Keep posted this week for another update after Jessica's kidney and neuro developmental appointments on Tuesday.

Love the Cross Family

Hi everything is going well here. Jessica is fighting getting yet another cold as I am but tonight is excellant. Jessica said baba tonight so now she says mama da for daddy ah for yes and baba. We know she should be speaking much more than 4 words for being 2 this coming Saturday but she is slowly but surely working on it. We are so proud of her.

I just wanted to let everyone know that Jessica said a new word tonight. Yeah!!!! Things have seemed to be getting a little more quite around here. Jessica's older sister Emily started 5th grade and it is amazing how quite the house gets during the day even with an almost 2 year and 5 year old running around it is nice. Both Jacob and Jessica are adjusting to big sister not being home much of the day but it all is ok. Oh and yes I almost forgot to update on Jessica immunology appointment. Her appointment went ok. The lab draw that followed it was by far the worst in a long time. it took 3 people and 5 pokes and 7 or 8 large vials of blood and an hour and a half later they finally were done. Jessica was a trooper with it all and did as could be expected after being a pin cushin. The results should be back in a couple of weeks.

During the appointment the doctor said that she does have possible functional asplenia, polysplenia. Her doctor thinks that Jessica does have somewhat of an ok immune system but whether or not it will decline over time is yet to be seen. The reason for this is we dont know yet what kind of function that the splenules are doing thus all of these test to see what her immune system is doing and to find out how much if at all that her immunizations have taken affect. They are very pleased with how healthy that she has been in the larger picture but has reminded us that Jessica is still high risk for infections and that we must take extra percautions to keep her healthy and when she does get sick to take her right in to see the doctor especially if she has a fever.

Jessica is doing good though and we are just trying to think positive and have faith and trust that everything is going to work out we know it will we just have to remind ourselves of this.

Have a wonderful evening and I will update more later. Thank you for all of your prayers and support. I posted a couple of new pictures in the picture gallery.

Jessica continues to do better. She had labs drawn again today because they were concerned about her tiredness but the labs look good. So now everyone thinks that she is still really tired out from whatever she had. She goes in to see the immunologist a week early so this coming Tuesday she has that appointment. Please pray for that appointment to go well and that we can get some answers that we really need.

So over all things continue to get better just a long slow recovery but much better than she was two weeks ago.

Have a wonderful Labor Day weekend and I will update sometime after her appointment on Tuesday.

Just quick update...

Jessica is doing a little bit better every day. She is still on the road to recovery. Still very tired and not doing a whole lot but over all is much better than last week. I am giving her another day or so and see if her sinuses clear up and if not I will have to take her back into the pedi and they will put her on antibiotics. they said on friday when I talked with them that we should give it till wednesday for her sinuses to clear up unless she ran another fever. They are really not wanting to put her on antibiotics because of her kidney and her kidney numbers getting worse in the last couple of weeks. Not to mention they are really hoping that they can wait till her next clinic appointments on the 9th before they draw more labs since she has had so many lab draws lately and if Jessica is on antibiotics they may run more frequent labs.

So over all things are going better slowly but surely she is getting back to herself. Thank you for all your prayers and support.

I am happy to report that Jessica will not have to admitted to the hospital. Jessica's labs are a tad better not as much improvement as we wanted but they are headed in the right direction. Kidney labs are still the same no worse. I was really hoping that her creatinine number would have come down but I am very greatful that it is no worse. When Jessica's Neph nurse practitioner called with the results she said that her number was the same if it had been worse then there would be a little more concern. Ok so hopefully it doesnt get any worse.

Jessica is doing much better although far from being back to herself but compared to what she was like earlier in the week to what she is like now she is much better. She is still very tired and emotional and not wanting anything by mouth to drink or eat but showing interest. she is showing more signs of sinus cold but we are just to watch her. The docs said that it will take a while for her to get back to herself as sick as she was but the fact that she is showing good signs of improvement we are all happy.

Thank You Thank You Thank You for all your prayers. It was a tough week but things are looking much better. Thank You for all your support and prayers.

I am happy to report that Jessica has been fever free since about 4am this morning... YEAH!!!!! Jessica is still very very tired but she no longer has a fever. So after many conversations today with her doctors they are going to let her stay home tonight and see how her labs look tomorrow. (saturday). The reason we are not out of the woods yet is because Jessica had some more irregularities in her labs with her electrolytes. Her kidney labs are up a touch again, sodium, chloride,glucose are all a little low.. So tonight we are to give her some propel water and have labs drawn in the morning. If still low or lower then she will have to have IV's and possibly more test. So we have made it across one hurdle with her fevers but now we have what is hopefully the last hurdle with her labs to get over and hopefully and prayerfuly it will happen soon.
Thank you again for all of your suport and prayers. I will post another update when I know something tomorrow.

Ok we are back from the pedi office and he has ordered more labs. Some repeats some new but are basic labs. CBC, electrolytes, segs, and another complete UA... He is happy with Jessica showing progress in the energy department but is still concerned that the fever remains. We are to continue to watch her and let him no if things do not improve. Her doctor is on vacation next week so hopefully things will get better by then. If not he wants us to call the other provider in his office and let her know what is going on at that time. So far I am still not sure if she will have to go into the hospital tomorrow if she still has her fevers. I think that her doctor is feeling a little better about the situation but her kidney doctors on the other hand are not and want her in the hospital if the fever is still on going throughout tonight and or if something has change and not for the best in Jessica's labs.

So we sit here and wait. Wait to see if this fever will go away. Wait for these new lab results to come back. Wait for a decision from the docs as to what we are going to do if we have to go up to the hospital or if we are going to be able to stay home. Let me tell you my patience is being tested. It has been a tough week but I am encouraged that my little girl has a little bit more spunk to her today. She is still very tired and tiring easy but at least she is showing signs of improvement and for that we are grateful very greatful. We are also very greatful for all of your prayers and kind words of support and encouragement. Please keep the prayers coming. Jessica is still sick but showing signs of improvement.

I will update again when we hear about Jessica's labs. We should hear something tonight or tomorrow.

Posted Aug 21, 2008 12:59

Just a quick update. I just got off of the phone with Jessica's nephrology nurse practitioner and she wants me take Jessica to see her pedi and have her evaluated again and if Jessica's fever continues even if it is low grade they said they are going to admitt her on Friday unless something changes. Everyone is concerned that her fevers have been persistant for as long as they have been and with the weekend approaching it is more reason for her to be admitted on Friday. At least this gives us a little more time for things to turn the corner for the better here. I am not sure if really anything is going to be done over the weekend but they mainly want to monitor more closely and have her on iv fluids I am assuming.

This morning Jessica did have a little more spunk to her which quickly went away and now she has horrible chills again and is very very tired.

So I will be taking Jessica into see her pedi today at 3:20 and we should have some of her blood culture and UA cultures results back if even the slightest infection shows up she will be treated.

Please pray that Jessica does not have to be admitted and that she gets over what ever has been casues these fevers for so long. She is exhausted, emotional, and just not herself at all.

I will update after pedi appointment.

Well today again Jessica's fever's continue. All of her labs are coming back ok. Other than her lymphocytes count is low. But her doctor doesnt think that this is the problem or even related and is not worried about it. The UA today showed slight bacteria but not enough to say that there is an infection but they are sending it for culture anyway. The results should be back by Friday. I spoke in length today with her pedi and he says that if these fevers are still present on Friday that they will have to send her up to Childrens and have her looked at by the infectious disease docs. He is concerned that the fevers are continuing and we have not found the cause. It is still possible that it is viral but still the fevers should not continue this long if it is.

I will update again sometime tomorrow.

Were back from Jessica's doctor appointment. Jessica's doctor doesn't think that she has an infection at this point but does have a very bad sinus cold and also is having a allergic reaction to the mosquito bites that she got this weekend while we were out camping. He wants me to keep a close eye on her and call if anything gets worse and then he will start an antibiotic. And if things are still not better on Friday she will need to be seen again.

So this afternoon Jessica is still doing about the same. Still has her fever and still all of her cold symptoms. Hopefully tonight she will be able to rest and then hopefully tomorrow she will be feeling better. One can only hope.

Thank You for your support and prayers. Jessica is still not out of the risk of infection but at least she does not have one as of right now.

Well it is just after 2:30 am pacific time and I cannot fall asleep so I thought that I would do another quick update on Jessica. I think that it is pretty safe to say that we are going to be able to stay at home tonight and not have to go to the hospital. Jessica is not doing any better but she is not doing any worse. Still has her fever and all of her cold symptoms along with her bug bites that welted up. I spoke with Jessica's pediatrition earlier this evening and he told me to call first thing in the morning and make an appointment to have her seen. He is concerned to that maybe she has an infection. We will have to wait and see but for now she is sleeping and that is the best thing that she could be doing her body needs it.

I will update in the morning after I talk with the doctors office about getting Jessica's appointment. Thank you all for your thoughts and prayers.

We have had a good weekend for the most part out camping but had to cut our camping trip short by one night. We had a wonderful hike on Saturday up at Mount Rainier it was beautiful and about 80 out.(I will post pics soon) The only bad side to the hike was the horrible mesquitoes. They were everywhere and despite lathering ourselves in repellent we still got bit everyone but my husband he just must not be sweet enough.. Sorry honey. I love you.... and by the end of the hike we realized that Jessica was not feeling to well and was sneezing and had watery eyes. We thought that there was something in the air but by time we got back to camp Jessica started coughing and running a fever. UGH...

So today Jessica is not doing to well. She has had a temp of 102 much of the day. Has had a reaction to mesquitoe bites that is causing her to get welts where the bites were including one on her foot that has spread and is very red and also has had a bad cough, sneezing , watery eyes, and fever. It is not even cold season yet. Where oh where did this come from? I am hoping that Jessica does not get any worse or I will have no choice but to take her up to Seattle Childrens ER tonight. I hope that everything will be ok and I can just take her to her doctor in the Morning.

Please pray that whatever Jessica has clears up quickly and that she doesnt get any worse. I will update more when I can.

Jessica is doing very well despite getting 3 immunizations on Monday and having a long nephrology appointment with labs today.

I am very pleased with how things went today but am a little saddened over the reality of what her nephrology doctor had to say today. I guess that I should'nt be but today reality of things were tugging at my heart. Jessica's nephrology doctor is very happy with the way that Jessica looked today even after getting her shots yesterday and having a hard lab draw today. Jessica is between the 15-25th% on the growth charts for both height and weight but her head circumference is still around the 10th% on the growth chart. Jessica is following a growth curve for her but since last appointment has leveled off on her growth so they are going to give her 2 months to see if she starts to show improvement and if not they are going to restart Jessica on the growth hormone injections that I or Jeremy would have to give to her each night which we had to stop a couple of months ago when we had the cancer/neuroblastoma scare. Jessica now hit the 24 pound mark. YEAH!!! Jessica's nephrology doctor said today that as long as we can keep Jessica very healthy no infections ect that at best Jessica may have 1-2 years with this kidney before needing a transplant. I know the talk about transplant we have had before but it seems like the more her head doc talks about it the more it sets in and becomes more of a reality. Jessica's labs today were still up a tad since the last draw so they think that it is going to stay this way and what her labs were today is a new base line for Jessica. So her current kidney status is stage 3 renal failure at stage 5 transplant and or dialysis need to be done. Stage 4 is when the transplant process starts and we start meetings with the transplant team and start the testing that needs to be done for the transplant process. Jeremy and I have a lot to learn but we will but for now we are just going to try and better equip ourselves with knowledge and get our finances and everything as prepared as we can for when the time does come.

So tonight we want to to say thank you even though thank you does not seem like nearly enough to say to you all but you all have been so much support and help to us. Thank you for your on going prayers and support. We Love you all God Bless,

Jeremy, Stephanie and Family

Well it has been almost a couple of weeks since the last post and then I was able to say that Jessica was doing awesome. Since then Jessica has had some minor things come up but seems to be getting back to herself again.

Jessica has been in to see the allergist, orthopedic doctor and her regular as well as on call doctor for her pedi office. Jessica had a hard week last week really really tired and not herself at all. I took her into the pedi office and we saw the on call pedi and she said that Jessica was really not herself so she was concerned that maybe she was starting to get sick or have an infection of some sort so she ran a lot of test and everything came back ok other than her kidney labs the BUN and Creatinine numbers were up a touch. So Jessica was like this for about 5 days then on Friday she was back to herself and Saturday she had an awesome day at my husbands her dads work company picnic but Sunday night she gave us a scare that we still have not gotten over yet.

Jessica was not really acting like she was feeling well again on Sunday but that night she started to act as if she was going to get sick but as Jessica stood in front of her daddy he yelled at me to come and that something was wrong with Jessica. Jessica had an event of some sort not sure if it was a seizure or exactly what happened but during the minute or so of time Jessica was not responsive and had a look to her that I dont soon think that we will forget. Jessica eyes were glazed over and greyish looking and just really looked like her life was sucked out of her she didnt look at us matter of fact she didnt look at anything she was off in space somewhere is the best way to describe it. This again went on for about a minute but it took about 30 minutes for Jessica to really be responsive and up and moving around again. Her neurologist is not sure what to think as this is not her normal tremor activity although she was having a little tremor. He said that we need to keep track of this and watch her for further signs that things neurologically are changing with her and if things get worse or more frequent she will have to have more test done and possibly be put on seizure medication. Please pray that this is the one and only event that we have to go through like this. if only we knew what happened but we may never know. Many do think that it was a seizure of some sort but others are not sure.

Allergy appointment that was scheduled for September was rescheduled for this last Wednesday and that went really well. He does not think that Jessica has any major allergy's and that what has been going on with her hands is possibly raynaulds. Not good either but maybe a step closer to finding out what has been causing the redness and swelling of her hands. We also talk some about her polysplenia and he wants Jessica to have several blood work ups done and see where she is at as far as her immune system and some other factors but he said the blood work could be done after she see's the immunologist in September as they will have more to add to the lab test that needs to be done.

Orthopedics. This appointment could have gone better. Jessica has a condition that involves the ligaments in her foot as well as her bone in her leg has not completely straightened out as it should have by now. So the plan is to give Jessica's foot and leg 3 more months to see if it will correct itself on its own and if not because of Jessica having more muscle tone on one side of her body compaired to the other the orthopedist thought that seeing a differant neurologist maybe needed as he thinks that there is more neurological involvement that what has been first thought and also then at the next appointment we will talk about a possible surgery to correct her foot condtion which involves removing her ligaments in her foot switching the ligaments opposite of what they are now and reconstructing and putting the ligaments back together again. OUCH very complicated as well as there is a long recovery. Not what we want her to have to go through.

So really things have been busy but yet Jessica is doing better despite these little bumps from time to time that she has. Please pray that Jessica never has another event like the one she had on Sunday and please pray that her foot and leg corrects itself without surgery. Jessica has some immunizations this coming Monday and then an appointment with her head Nephrologist as well as more lab work. I will keep you posted and let you know how things go.

Thank you for your continued support and prayers.

Love the Cross Family

Good Morning!

I was thinking that it has been almost 2 weeks since I posted an update so I thought today would be a good day to do so.

Jessica is doing awesome. Things for the most part are in cruise control for the moment. There are little bumps here and there but nothing bad. Jessica has had an awesome week. For the first time in 4 or so months of horrible diahrrea she is now actually having stools that have consistancy to them. It has taken some time and playing around to see what works but I think we figured it out and just in the nick of time for the dietician was just about to change Jessica's diet. Jessica has also eaten the best that she has ever eaten. Instead of one or two tablespoons in one day if we were lucky we are up to a variety of foods that equal about 1/4 cup of food in a whole day. I am thrilled. I know that we have a long way to go but the progress that she has made this last week is awesome.

Jessica has had another couple of episodes with her hands turning super red and swelling. After talking more with the Nephrology dept because her pedi is out of town they thought that it would be in Jessica's best interest to see an allergist. So now she has an appointment with them in September. The nephrology doctor is thinking that Jessica's body maybe releasing to much natural histamine I am not sure what to think but if this is the case
then is she allergic to cold air? I am confused by this and waiting to talk with Jessica's pedi when he is back and get his thoughts.

So overall Jessica is doing really well. She is such a fighter and she has such an amazing spirit about her it is awesome to watch her and we are amazed each day by how she carries herself and how she just does not let anything bring her down. Jessica does have speech therapy on Tuesday and then she is going to see an orthopedic doctor on Thursday to take a look at her foot that she keeps walking on the outer edge of as well as turing it in. This has been a minor thing that now is becoming of concern now that the physical therapist believes that she is using her hip to compensate as well as she does not think that it is just a muscular condition but maybe her joint in her ankle that is causing the concern. I will let you know when we find something out.

Thank you all so much for your prayers, love, support. We treasure you all and love you all. Have a wonderful week.

Wednesday's Medical Conference

Hi,

Well the conference came and went. I think that it could have gone better. Nothing really got accomplished. Jessica's head kidney doc got called away to an emergency before the conference even began her urologist was suppose to join us but was not able to make it.The neuro doc joined us for about 5 minutes then had to go and everyone else said that we know things are going on with Jessica but we don't know what. UGH I was so mad. I had looked so forward to the conference and was really hoping to get more answers and information. Jessica's GI and pedi were there and we talked with them some more after the meeting since we had an appointment with GI. Weve been told that we will have huge things to overcome with Jessica down the road and especially with transplant because of her polysplenia and her immune system being compromised but for right now all we have to worry about is keeping her healthy and away from infections. Any infections can be devastating. Viral illnesses are of concern but it is really bacterial infections that we have to watch for and that will put her at most risk. So her doctors think that Jessica's immune system is compromised now not because of her heart and kidney but because Jessica has no spleen just splenic tissues. Her immune system will even be more compromised after transplant. The protocla now is that of someone that has had a transplant any fevers or illness has to be told to her docs right away. No waiting to see if it will just go away not that we have done this anyway but usually I give things some time before I call the docs now they say I cant do that. It is too risky. Jessica will also have to start getting immunizations that are not normally given to children because of it. UGH again. I have to keep even more detailed logs of Jessica's blood pressures as they are really trying to find a pattern. Then as far as transplant we didn't get to talk about it because her head doc was not there.

We didn't find out when Jessica will have eye surgery her eye doc was not there. So there is a lot still up in the air at many different levels.
We are hoping to have more answers later this week or next week but I am not sure if that will happen. We see her kidney doc on August 11th and then we will discuss more about the next steps with her kidney and get yet more liver labs and then her normal kidney labs.
Over all Jessica is doing well this week. Jessica still continues to have her diahrrea but all her doctors think it is related to her kidney failure progression and this is going to be her new normal and as long as her electrolytes stay stable the docs are not really going to do anything.
Thanks for being here for us and supporting us it means more than you know. Thank You!!!!

Good Monday Morning!

I just wanted to post a real quick update to let everyone know that Jessica is doing very well. She has not had any concerns this week. She is tired and emotional but I am not too concerned with this. Jessica's medical conference is still on for this coming Wednesday and I hope to post a good update after that.
Please if you can pray about this medical conference and that we have the time to discuss everything that we need to and that everyone that really needs to be there will be there. There are a few docs that have mentioned that they will try to be there but they are not sure if they will make it.

Part 2 of 2

HAPPY 4TH OF JULY!!!!

So really a lot has happened. We also got a call back from Jessica's Neurologist last night and he stated that Jessica's lab work that he ordered came back way out of whack and all over the place and really he is confused about the findings and that he has to talk with a bio chemist and see if they can help to make some since of the results. two of the test he had ordered before which were the HVA and MVA both of these helps to see if there is a neuroblastoma one of these test levels went down but the other is now 5X the normal limits and this is where the neurologist is really confused and then also she has some urine organic acid test done that came back really weird.
One possibly good thing that we did find out about these HVA and MVA test is that it doesnt just point to neuroblastoma but can also mean many other possibilities two if which the doctors are really starting to look more into is involvement with her body excreting to much adrenalin sp? or epinepherine sp? both of which could possibly explain her erractic blood pressures.
Nothing really to point to any kind of diagnosis just enough to leave to doctors scratching there heads more and having more of a concern that there is a disease process going on that we have not yet found. So now we wait for a consult with a bio chemist and get there in put.

Oh and speaking of others getting involved with Jessica's care her nephrologist dept is now going to send us for a consult with a immunologist about her polysplenia.

Ok again there is a lot of information that we got this last week and I am sure that I left stuff out but if you have hung in there with me and read all of this I hope that you can understand some of it.

Jeremy and I have much faith that if even we do not have a diagnosis that at least we have been able to eliminate some possibilites and scary ones at that one of which has not been completly ruled out but looks as though it could be very soon is any form of cancer. We have a long road ahead of yet but we know that we are not alone.

Thank you all so much for following our journey with Jessica and our family and for all of your prayers and support. We love you all.

God Bless have a wonderful 4th....

Part 1 of 2
HAPPY 4TH OF JULY!!!!!!

It has been such a busy last week in a half and I have had so much to do I have not had the time to update Jessica's page till now.

A lot has happened in the last week in a half. Jessica has had some good times but she has also had some horrible times. It has been a time that she has been getting hurt a lot because she has been falling so much. It scares me.

Jessica has had a GI appointment, neurology appointment,nephrology and urology appointment.... The following is what was said and results of test..

GI: Jessica's GI appointment on Wednesday the 25th of June was long. So much to talk about then her Gi doc got called away for an emergency so we didnt get to finish but were able to talk with her enough to get her thoughts and figure out a plan that just 48 hours later was turned upside down. Jessica doctor explained to me that Jessica does in fact have polysplenia we are not sure exactly how this is going to affect her yet but know that it can cause some complications some of which we may have already experienced but blamed it on other things. Jessica's liver from what we thought was still unhappy at this appointment and this is where things got upside down just 48 hours later with her latest lab results. Here we had a plan and everything set up and then Jessica surprises us all with her liver showing signs of improvement. Her liver is still unhappy but much better than it has been in months. As the nurse that left a message last Friday on our answering machine she stated that we need to be guarded and not to excited yet. And that the improvement is good to see we still have a lot of unknowns and we have no idea as to what caused it to be so unhappy to begin with so because of that Jessica will have to have a lab draw in a month to see the trend and make sure that her liver labs continue to trend down and if they do then she will just have to have liver labs drawn with her kidney labs each month and then if they go back up then she will have a biopsy and closer monitoring.
GI is concerned about her diarrhea but still will not put her on anything for it because we have not found the cause. All the test C-Diff, rota ect. has all came back negative.
Jessica will see her GI again on the 16th when we have the medical conference.

Neurology. Jessica was seen by her neurologist on Thursday June 26th and he was very pleased with the way that Jessica looked and was encouraged that she was not having horrible tremors on this visit. He said that he wanted more labs done and that he will call with the results and see us back in 4 months unless Jessica regresses or if something of concern comes up with her labs. He is too concerned that Jessica is having multiple issues going on that we cannot explain.

Urology .. Jessica's urologist is very happy with the way that Jessica looks on the outside but is concerned with the way her kidney ultrasound pictures look. He says that even though her numbers have been holding steady her kidney is starting to look more sick and that it seems like there is some swelling. Not fluid but tissue swelling. He said that this is concerning and that he will see us again in about 12-18 months unless something comes up in the mean time but he added that when he sees us next time that we would probably start talking about the transplant process and get all of that started. UGH..

Nephrology We met with the nurse practitioner at this appointment that always sees Jessica when we don't see her nephrologist and she is happy that Jessica's kidney did well for the CT scan and that over all she is doing well. I mentioned to her about what the urologist said and she agreed and actually said that we would start talking with the transplant coordinator sometime this fall or winter. At this appointment we also talked about the upcoming conference that they scheduled and said that there will be more of a plan set up for the upcoming months

Great News!!!!!

Jessica kidney labs were drawn on Friday and we got back the results on Sunday when the pedi called. All her kidney labs are stable. So far so good. I am beyond greatful. A major since of relief for Jeremy and I we were so concerned about her kidney and the contrast last week but now can relax. Jessica continues with her horrible diarrhea so after calling her GI doc on Sunday due to her diarrhea and having bright red blood coming out of her mickey button site she said that we need to get stool samples into the lab. They are now checking Jessica for C-diff and then also rotavirus. Jessica's GI doc said that her bleeding is not related to her diarrhea and that more than likely Jessica did something to her button that broke a blood vessel and caused it to bleed. That has now stopped and now we are waiting for her stool results to come back so we know what is causing all of this diarrhea her bottom just looks horrible.

Other than what is mentioned above Jessica is doing good. And we see the GI doc on Wednesday and Neurologist on Thursday. I will update after the Neurology appointment unless we find out things sooner than that.

Have a great week.

Hi Everyone,

Well we were suppose to be at Childrens for a pass appointment for Jessica to have her eye surgery on Monday but the surgery has been canceled until we can get all of this stuff with her liver sorted out. I also got a call from the GI clinic and instead of having Jessica's liver appointment on the 16th of July her GI doctor wants to see her this coming Wednesday. This is a good thing. I hope that we can get some questions answered.

Jessica has been doing ok. Tires really easy this week and had issues with watery stools yesterday seems ok today but she is not back to herself yet.
Oh and a conferance with all of her Dr's is still on for July 16th.

Well Jessica is letting me know that it is nap time. Have a good weekend.

Another quick update

Hi everyone,

Jessica was admitted to childrens hospital Sunday evening for her hydration and medication prior to her CT scan on Monday and we were released from the hospital at about 9:30 last night. Jessica did well for the test and ok for the extra hydration although she did have some edema.

We still have not been able to talk with her GI doc about her abnormal MIBG test from last week that led to the CT yesterday and we really have not got any answers from her CT scan other than there was another abnormal finding that deals with her spleen but there were no masses or tumors seen. No masses or tumors seen is a really good thing and we feel a lot of relief but now the challenge is to find why Jessica had the abnormal MIBG and still try to figure out what is going on with her liver. No one is really willing to sit down with us and go over all of her test and give us any answers they all said that her regular GI doc needs to do that since she knows Jessica and has more understanding of what has been going on with her since she is so medically complex.

Now we also talked with her cardiologist in regards to Jessica's low heart rate and also her low blood pressures as many times as they were taken in the hospital they were in the range on 70/20's and 80/30's. and heart rate at times in the 50's so they want to investigate more and make sure that there is not a rhythem issue going on.
So now we wait for the Dr's to call us back with what is next and more explanation to the abnormal findings on these latest test. I will let everyone know when we find anything out.

Thank you and have a wonderful day. God Bless.

The Plan:

Ok I have not been able to talk with Dr.'s but nurses and they have been in contact with Jessica's doctors. Jessica is going to be admitted to Childrens Hospital on Sunday evening to prepare her to have a CT scan of her liver done and to recieve medications and extra fluids. Everyone is concerned with Jessica's kidney and says that it will take a hit from this test but there is no way around it. We are trying to be positive that there will not be too many complications on Jessica's kidney function but the reality is that there will be at least some temporary impact. We know that God is bigger than the complications that can come up and we have faith and believe that he has all of this in his control. Again we are concerned ok scared and worried not only about the impact that this test can have on her kidney function but what the results could be.

Jeremy and I are looking at Jessica how bright beautiful and energetic she is and just amazed at how well she is doing on the outside. We are also hoping and praying that everything will turn out better than what is thought at this time.

I will post updates as time allows. Have a wonderful weekend.

Jessica's MRI and MIBG

Ok I know I said that I would post updates yesterday during Jessica's test but things just did not work out so I could so I am posting this update now.

Jessica did alright for the test other than having a low heart rate and low blood pressures. We headed home sooner than we expected to with no information. I did recieve a call from the neurologist stating that there were good test results and some abnormal results. Jessica's MRI came back normal so the neurologist is suggesting that we need to do more metabolic testing as there is more than likely a metabolic condition that is causing her tremors. So that was the good news. The bad news is that her MIBG test to check for a neuroblastoma or the a like came back abnormal. In this test they found that there were consentrated amounts of the injection medication taken up by the liver. What all does this mean other than being abnormal we do not have the answers to that yet we are still waiting for the doctor to say what her opinion is and what we do from this point knowing that this is not normal and then having the other information about her liver enzymes being elevated and then the HVA test coming back also elevated it just all to much for us not to feel very comfortable that there is not something more going on with her liver than what has been thought about. Jeremy and I are really concerned about the possibility of her having cancer as some of the test results have pointed to.

So Jessica did do well for the tests but now we are waiting for the doctor to call us and let us know what is next. The radiologist report suggest that a cat scan be done so that may be the next thing or even maybe the liver biopsy we are unsure at this point but I will post an update when we find out.

Have a wonderful afternoon. And thank you for your support and prayers.

Good Morning!

I just wanted to post a quick update and let you all know that Jesssica's MRI and Body scan is going to be done today. We have to be at the hospital and register about 1pm so we will be leaving our house shortly. I ask that you please keep Jessica in your prayers today that there will not be any complications and that there may be some answers from these test.. The nurses yesterday had a difficult time placing an IV for Jessica's injection so I ask that you also pray that they can get an IV started today without difficulties. Jessica's veins have been so used with getting blood drawn and then previous IV's that it really makes it difficult sometime and then we they think they get a good vein it just blows. It was really hard on Jessica yesterday to go through this so I hope that today they will put her asleep before placing the IV.

I will update throughout the day if possible as to how things are going. They have told us to expect the testing to take up to 5 hours with the first test to start at 1:30pm

Thank you again for all your prayers and support.

We are on such a roller coaster ride. On Tuesday we met with nephrology and they are really pleased with her kidney for the most part. Jessica is having a lot of urination and dilute urine so we are to watch that but her blood levels remain stable. On Wednesday we met with the GI doctor to follow up on Jessica's lab and ultrasound results that did not go as well as I had planned. Her doctor confirmed that there is in fact a liver condition of some sort and that it is not muscular or skeletal as we had hoped due to it being easier to sort out although we are not able to rule those possibilities out. Her liver labs continue to elevate so they have ordered more labs in one last effort to figure out what is causing her liver to have issues before they schedule Jessica for a liver biopsy. Jessica's liver function remains ok but the cause of her liver being un happy needs to be figured out before it does start to affect her liver function. The doctor also confirmed the radiology report about Jessica's spleen being small and says we are going to make sure that we take extra per cautions with illnesses because a small spleen can affect her immunity level and ability to fight off major illnesses. I am not sure how all that is going to affect her kidney and her kidney transplant when it comes time for that but I feel as we have enough concerns right now that I don't need to worry about too much down the road and most importantly we are giving it to GOD and putting those with all of our others concerns in his hands. Not that we wont worry or be scared from time to time but we have peace that it is in his hands and he has everything in his control.
The plan for now is to follow through with Jessica's MRI and MIBG next Wednesday the 11th of June then onto her eye surgery on the 23rd and then follow up with GI next month and if the further testing for her liver does not come back with any answers or with enough answers they are going to schedule Jessica for a liver biopsy.
So alot of waiting for more results to come in and then having patience while we are waiting. Jessica's ear infection is still present but not enough anymore to postpone her testing next week. We have pass clinic on Tuesday so hopefully they will agree that she is over her ear infection and cold enough to proceed.
As I finish this post I ask for continued prayers for Jessica but also for a few others. There is a litte girl that the parents have decided to go to heaven for the doctors said there is no more that they can do I ask that you pray for peace for them in this time and that they will find comfort in our Heavenly Father I also ask for prayers for the Christian music artist Steven Curtis Chapman and his family as they suffered a great loss of there youngest daughter 2 weeks ago. I ask also that they can have the peace that passes all understanding and for there son who was involved in the accident to find peace that it was an accident and that his sister is in our Fathers Arms. And that God has all of this under control. For more information I encourage you to go to his web site at www.stevencurtischapman.com ....
May God Bless you all and thank you all so much. With love the Cross Family.

Just a quick update

I want to let everyone know that I took Jessica into her regular doctor on Tuesday and he put her on some antibiotics for a double ear infection and also to hopefully help her cold from turning into something more. He said that so far her lungs sound pretty good I sure wish that her cough would sound better.

I talked with the radiology nurse today in regards to Jessica's test on Friday and she said that with Jessica already being high risk that with the cold they were not comfortable with her under anesthesia and having the increased risks with her being sick so we had to reschedule her MRI and MBIG for June 19th. They want to give her 2 weeks to get over this junk and get her a little stronger.
Jeremy and I are not happy that this test has to be put off again and also that there is only going to be about 4 days in between putting her under anethesia for these test then for her eye surgery but we understand and we dont want her to be at increased risk anymore than she has to be.

Other than that I think that is all for the moment. Jessica for the most part is doing good although she has been super tired today.
Have a good evening...

Hi everyone!!!

We just got back from Alaska. It was an awesome week and such beauty there that in some ways it was hard to come home. Jessica was wonderful she didnt even cry at all on the plane ride until the ride home but thats another story.

Jessica did really well and enjoyed the long journey. It was really nice for Jeremy and I to get a break away and get a new outlook on things. Much needed. We did have some difficulty getting through the security check point and after about an hour of them going through our bags and trying to refuse us taking all of Jessica's medical supplies on the plane they finally let us through after some serious prayer.

We were so blessed with awesome weather and with the time away. Like I said Jessica did wonderful the only bad thing was that Jessica did end up comming down with a horrible cold on our last night in Alaska. She seems to be doing ok not any better but not any worse. I think that this is why that she got so fussy for about a half hour on the trip home. I am hoping that this cold will pass rather quickly because Jessica is still scheduled for her MRI and body scan on this coming Friday the 30th.

We still have not heard to much information back from the GI doc about the rest of her test results and what is going to happen next so my plan this week is to attempt to get some sort of information and then also see if after Jessica has these test that we can try to have some sort of conferance with her docs as to what the plan of Jessica's care is going to be if anything differant. We are really hoping that we can get some helpful information here soon as to what all is going on with Jessica.

Thank You all so much for your prayers and support through all the good and the bad. God keeps trying to remind me of Jeremiah 29:11 so I am trying to rest my fears and concerns on him and trust him for he does have everything under his control and his plans are perfect.

We love you all have a wonderful memorial day weekend. And thank you to all that have served and continue to serve. And for the familys of those who have served and continue to serve. May God Bless you all....

Jessica is doing good. She has had her throwing up episodes again like she gets from time to time but other than that has done very well.

The ultrasound of her liver and kidneys was done on Tuesday and she did really well. We are still waiting for the GI doctor to call and let us know where we go from here but so far her liver looks good on the report. There is an enlarged vein and her spleen is small for her size and what they would expect not sure what all this is going to mean if anything but there were no other comments on the report other than it states that there is a normal looking liver with no masses and of normal size. This is all really good. Now her kidney on the other hand is still not growing very much and is thinning out more and becomimg more echogenic all of what we have been told to expect. I was hoping for good growth but thankful that it is still hanging in there and not any worse than what we expect from what her kidney condition is.

Jeremy and I are packing and will be leaving for Alaska with Jessica on Friday. I will still be checking emails from time to time so feel free to drop a line or to if you want.
Thank you all again for all of your continued support prayers and thoughts. God has been so amazing with walking along by our side and having such wonderful people in our lives to love and support us thru the tough times and good times. We love you all and send our love thoughts and prayers to all of you.

Good Morning!

Well Jessica has had her cardiology appointment on Monday and her GI appointment yesterday. We are really no closer to answers with what is going on yet. There are many more test that are being ran and then the wait game to see what results come out of those test. No one can rule out any of the following possibilities.
Neuroblastoma, phoechromocytoma (tumor), Cerebral palsy, liver diesease, autoimmune disease. There are many other possibilities but those are the ones that they are looking into the most.

The cardiologist has ordered an event monitor for the next 30-60 days so when Jessica has these white spells and we can try to capture that to see if her heart is causing it and if not her heart causing it what is her heart doing during. This is because the last time Jessica had a white spell her blood pressure shot up to 147/95 and her heart rate was only 49. Jessica's slight heart block from her open heart surgery to repair her ASD and VSD remains but over all the cardiologist thinks that her heart is ok and also thinks that there is a possible pheochrolocytoma.

The GI doc really is not sure what to make of everything but is really concerned. She has ordered a battery of test both blood and ultrasound. She is not convinced that it is all her liver but maybe a muscle or bone problem. The labs that Jessica's GI ordered are hopefully going to help rule out and also point us to the direction of what is going on and what department needs to be more involved or if in fact it is a liver problem that they may have to do a biopsy to find out what exactly is causing her liver to be un happy.

So again we are not clear as to what is going on yet but are awaiting test results. Some of the test are hopefully going to be in on Friday maybe sooner. Jessica's ultrasound has been scheduled for this coming Tuesday and maybe even tomorrow if there is a cancelation today.

I can officially say that there is a possibility that Jeremy and I along with Jessica maybe leaving for Alaska this next Friday May 16th for a week. We have not wanted to say anything yet as everything has been so unclear with Jessica. We have been told that we can take this trip as long as Jessica does not get any worse and that nothing major shows up on her lab work or ultrasound. The doctors that we have discussed this with says that it will be good for us to be able to take a short break and then come back and get started down the uncertain road. They also have stated that we should travel while we can as Jessica may not be able to travel again anytime soon if she does have a neuroblastoma or anything else of the sort.
Jeremy and I have mixed feelings about going on this trip but have planned this way back when Jessica was doing well knowing that we may have to cancel but with talking with the doctors and all this week they have encouraged us to go. As far as if it is 100% or not that we are going we wont know till we are actually past the recent lab test ultrasound and her pediatrician looking over her with a fine tooth comb on next Thursday and saying that it is ok or not.
We are looking forward to the break but I dont think that we are going to relax too much with so many unknowns.

I will keep you all posted to her results and if in fact we are able to go on our trip or not. Thank you all.

Test Results!!!

Ok again Jessica has the doctors puzzled and left them scratching their heads... Jessica's Neuroblastoma and tumor marked test did come back elevated and out of limits. As of right now the level that it is at does not say that she for sure has a neuroblastoma but does say that there is yet another problem. These results could mean many differant things anything from a neuroblastoma, to a metabolic disorder or even something that they might not be able to find the cause.

After I want to say about 6 hours on the phone today with doctors, nurses, radiology department and cant forget those answering machines that i had to talk to and leave messages on. This is the following plan as of right now.

1. Jessica will have a MRI, MRS, and Nuclear body scan done on May 30th. All would like to have it done sooner but it is not possible at this time to schedule all of it together and we want to run as many test together as possible so less anesthesia and less stress on her body.
2. Meet with Genetics soon. We dont have an appointment with them yet as there clinic was closed today because they were at a conferance.
3. Run more metabolic test some new and some that had been done in the past but they want to recheck them anyway.
4. Watch Jessica closely for any other problems and also if her current issues get worse they would seperate some of the test and just get the mri done sooner.
5. Try to stay calm relax and focus on God and that he has this all under his control and that he will see us through this and provide the doctors with the information that they need to help our Jessica.

Jeremy and I are in one hand relieved that it is not a clear yes she does have a tumor or neuroblastoma but in the other hand are still very scared and frustrated that we dont have the answers yet and that this test did not completley rule those possibilities out when in fact it could have.
We are very unclear as to what is going on and a lot has not really sunken in yet. We are trying to process so much info and understand all of the upcoming test and what affects if any it is going to have on her kidney function and on her in general. WE know that we will get through these trials one step and day at a time.

Please continue to pray that we will get some answers and that Jessica will continue to be strong and continue to fight what ever this is.

Saying thank you to you all is just not enough. But really we love you all and thank you and thank God for you each day. Thank You!

I am sorry about the delay in posting Jessica's hearing results. It has been rather confusing and worry some around here with everything that is going on with Jessica.
I have had many conversations with her pedi and we talked in depth about her nephrology appointment and the conversation that I had with cardiology. After talking with both nephrology and cardiology neither one of the departments think that Jessica's blood pressure is related to them but cardiology did say that they could not rule that out till they see her in clinic on Monday. So I spoke with our pedi about this and told him that I am really getting tired of jumping from one specialty to the other and everyone saying that there is a possible problem but it is not related to there specialty. Pedi agreed that we need to figure something out and also is more convinced that maybe some of this stuff is related to her nervious system some how especially with her blood pressures all over the place. He called Jessica's neurologist and talked with him and he said that the neurologist did more listening than talking so I am not sure what to think about that. Like I told pedi I am getting more concerned as time goes by and he agreed that everyone is concerned including himself.
I really love our pediatrition and he is trying so hard to help us figure this mystery out. And I can say that he has always been there for us as a family and for Jessica as his patient and has always gone above and beyond the normal call of duty. Thank you just cannot begin to say how much we appreciate him and his office staff.

Ok onto the hearing results.. Jessica hearing test went ok. She hated it but from what they can tell she has NO hearing loss at this time. I was thrilled to hear this.

We are still awaiting Jessica's results to her neuroblastoma and tumor marker test the results are in but the neuro nurse said that Jessica's neurologist needed to go over them before she could give us the results. That in it self is a whole story that really frustrated Jeremy and myself last night. But she did say that we should have the results today. So when we do get them I will post them when I can.

Jessica is doing good this week but continues to be very tired. Jessica has done a good job this week with trying to show us things more by pointing. It helps.
Ok will update again when we have the test results. Have a blessed day.

Good Morning!

Tuesday was a long day and ended with not really more info than what we already had. Jessica's nephrology doctor was so nice and just as confused about everything as Jeremy and I are. She said from the renal stand point everything seems to be looking good and stable. She also lowered her dose for her calcitriol (calcium) in hopes that it will lower her calcium level as it continues to be high. The only problem when we have done this in the past is that her PTH level rises so she said that we will have to watch that. If in fact that does happen we may have to switch to a different med. Blood work today confirmed my suspicions about the other lab work not be correct. Her creatinine and Bun remain about the same. But her potassium is back on the rise again. Her hemocrit and hemoglobin still high but a little improvement and the her liver labs were also repeated today and continue to elevate. I was more than frustrated today finding that they continue to go up and finding out how much they went up in just a week.

Another discusion that I had with the Neph is about her blood pressures which have gone from being high to being low especially at night she was not to concerned but said that cardiology needed to know so I told her that I have since Monday been trying to reach them anyway. I ended up running into the doctor that has done all of Jessica's heart caths and went over things with him for a few and he agrees that Jessica's bp's are on the low side and that it needed to be looked into this thought and feeling seemed to be the same with everyone that I have talked with. I sure hope that there is nothing new that is going on with her heart but everyone has suspicions now that with her bp's and her liver labs the way that they are that there maybe something going on and it may involve her heart. Not really what I wanted to hear but if that is the case at least we have an explanation as to why her liver labs are not looking good rather than still not having any answers at all. Only giving things time doing a little more research and meeting with cardiology and the GI doc will we know for sure if that is in fact the case.

Over all Jessica has had a good day today. Tired but did well. We have a hearing test later today so please pray that it goes well and that she does not have a hearing impairment which everyone is suspicious of.

I will update later today as I have more info and get the results of Jessica's hearing test. Have a good day.

It's Saturday!

The weekend could not get here soon enough. Jessica continues to be about the same. Slept for 14 hours last night. And is still laying around the house this morning. I am watching her close as we are just not sure what is going on with her. As much as I wanted the weekend to be here I am looking forward to going to see her head Nephrology doc on Tuesday. I am hoping that we can get some info from her and her opinion on everything.

The GI nurse called me back yesterday and told me that Jessica needs to be seen and that the GI doctor wanted to talk to me about Jessica's lab results more and make a plan the nurse says that there are going to be much more test that may need to be ran in the coming weeks. So I was able to get an appointment with her GI for May 9th not soon enough for me but it will have to work. The other test for the neuroblastoma and tumor marker test will not be back till sometime after Wednesday because they were send out test.

Jeremy and I are trying to take everything a day at a time and put it in Gods hands but it sure is testing our patience. We are very concerned and not sure what all to think. We are wanting answers and just not getting any or at least none that we can see. More and more seems to keep coming up with our precious daughter and it is hard not to be able to have the answers it scares us too. We just want things to be better and to help her and have her feel good and not be a pen cushion from all of these test.

Daddy went fishing today so its just mom and the kids. It is suppose to be very nice weather today so we may take a walk down to the park and to the beach and do some much needed weeding and plant some flowers. It will be nice to get out and enjoy some fresh air.

Have a wonderful weekend. We love you all.

Stephanie

Recent Lab Results

Well we got back the lab test results from Jessica's labs that were done last night and her kidney levels are still stable and her liver results were slightly higher than her last set but I am not sure if this is because we had to go to a different lab or it just is that way. So again we are still unsure as to why her liver enzymes are still elevated and are waiting for the GI doc who is handling this to let us know if we are still going to wait and give things more time or if we need to run more test hopefully we will find out in the next day or so. Also Jessica's hemocrit and other related labs were elevated so I am not sure what that means.

Just thought that I would post her most recent lab results. Have a good evening. Thank you all for your continued prayers and support.

Another note.. Jessica had PT today and her PT thinks that Jessica is having more difficulties in some areas and may also have sensory disfunction disorder. I have to talk to her Pedi and other specialist and get there input but Jessica's PT is really considering this as a possibility for Jessica. She is really struggling in some areas. I have faith that we will get some answers here soon as to what is going on with Jessica at least from a neurological standpoint.

Hi,

Well it has been a few days so I thought that I would post a quick update. This week is not too busy for us as all we have is just Jessica's therapies which is probley for the better. Jessica has had a rough few days with a lot of tremors again and a couple this weekend that were quite strong. Jessica is also getting yet I think another cold and has been exhausted. Yesterday was better than over the weekend and Monday but not a whole lot. But then she went to bed early last night and slept for 13 hours has been up for almost 2 hours and is ready for her morning nap. She is really tired and cranky. I made an appointment to see her pedi on Friday if she is not any better. I figure i better just have her checked out really good before the weekend.

Other than Jessica having an increase in her tremors and the fact that she has been so tired and may be getting another cold she is doing good. And even has been calling everything mum as in mom I think. Jeremy said last night when I was gone to a meeting that Jessica went to the front door and started to cry mum mum mum. He said that she was looking all over the house for me. I felt horrible but it was really nice to get together with the moms group. It is a great group of women. Thank you all. I really enjoyed being a part of your group and plan on attending as many as the meetings and get togethers as I can.

I will post again in a few unless other things come up before then. Have a good day.

Good Morning!

Another quick update. Jessica is doing good. Have some more watery stools and being tired but seems to be doing ok otherwise and pedi agreed.

I talked with the GI nurse yesterday and the plan for now is that we are just going to re run her liver labs when we run her kidney labs on or a couple of days before April 29th. The nurse said that they will look at those labs and see what those show and go from there. No plan or ideas as to what is going to happen after that if they are still elevated. More of the waiting game. Our patience is really being tested.
April 29th Jessica has an appointment with her nephrologist to see how her kidney is doing and to go over everything that has been going on. I am looking forward to this appointment. I sure hope that her kidney keeps doing as good as it is. I always get a little nervous that her kidney function will decline rapidly which is always a possibility especially with this kidney and its history.

It has been so nice of all of you to email me with all your prayers thoughts and support for us while we have been going through all of this. Thank You is just not enough.

We love you all. God Bless,
The Cross Family

Just a quick note

Jessica's CMV and EBV test all came back negative... I called just to see if they were in and they were.yeah nurse is baffled and was lost for words. You should have heard her on the other line but then again she didnt say much but uh oh uh i better show dr. these and find out what now. Yeah it was pretty odd but yet serious. I am now waiting for the nurse to call back and see what is next. I think that this nurse and the doc was so sure of themselves that these test were going to come back positive. Well Jessica is proving them wrong again what a surprise. They should know better by now that Jessica is not that easy and instead of looking for and starting with the most common stuff that could cause this problem with her liver they should start with the less common since that is the way that it usually is with her. Not that testing for the simple stuff is wrong but while we aredoing that I think that we should do the other test as well as long as it is not to invasive especially if they are already drawing blood why not run other test too it would save her from having to get poked so many times.

I am now waiting for the nurse or the doctor to call me back and let me know what we need to do now. Hopefully either her liver will be happy again or they will find the cause and they can help to make it happy.

Ok I will update again when I know more.

Good Morning!
We have been up for hours now but I wanted to report that Jessica seems to be doing much better today and she did wonderful with her feeding pump last night. I did not have to turn it down or off. I am excited this morning. Jessica is still kinda tired but she also got up early really early something like 4:30am I normally get up around 6 if I have not been up all night studying and she usually gets up close to that time but this morning she was bright eyes and wanting to start her day. It is so good to have her acting more like herself today so far. I really think now she was just really wiped out from the day at Childrens.

Jeremy the kids and I are all possibly going to Eastern Washington sometime this weekend if Jessica continues to do this well. Jeremy and I have our anniversary on Sunday also so we are looking forward to getting away some even if it is with the kids and only for the day. It is suppose to be really nice weather.

We are just so greatful to God each day for all the blessings that he gives us and even though things get really tough at times we continue to be amazed by how He takes care of everything and takes care of all our needs without us having to worry even though we do worry we know deep down in side that he is carrying us through and giving us what we need each and every moment and in his timing rather than ours which can be rough but looking back and having the faith we know that he is in control and he has the perfect plan.

We thank all of you for following our journey with Jessica and for all your support and prayers and we send our prayers out to all of you and think of you each day.

Oh we have not heard about her CMV or EBV test yet but when I know the results I will pass update and let you know.

Have a wonderful day and a wonderful weekend.

Wednesdays appointments!
Well this is the third time that I have tried to post this update but every time that I tried to post I got side tracked.
Jessica is having a very rough day today. I am sure that some of it is from her having her day at Children's yesterday. It has always worn her out and me too. On the other hand Jessica has absolutely no color to her at all and vomited some of her morning feed and had a very rough night last night with her stomach bothering her. I thought a few times that she was going to get sick so I turned her pump off hoping that she wouldn't get sick it helped till I fed her this morning. She is sleeping really soundly at the moment so I am going to wait and feed her when she wakes up. Hopefully she will be able to keep that feeding down and not get sick again. All morning though she has been laying around the house she will walk around a bit then put her head down or lay down on the floor so I know that she is wiped out and not feeling well.
Yesterday Jessica had appointments with her eye doc and then also with nephrology. All went well. The eye doctor was a bit upset when she found out that Jessica has not had an MRI yet. She was really wanting that to be done.She is too thinks that there is a possible brain defect or possible tumor. She has scheduled a date for Jessica's eye surgery to correct the extropia and hypotropia but she said if Jessica's liver enzymes keep coming back elevated or get worse between now and her scheduled surgery on June 23rd she will cancel surgery in till things are figured out. Not only will she cancel surgery for that but she also said that if anything odd shows up in her MRI the morning of surgery she will not proceed and will cancel her surgery right then and there. We still have a long road ahead of us and a lot of pass appointments to go to between now and then so hopefully everything will go well. I am sure it will. There is just a lot of additional appointments that need to be made on top of her already busy schedule of appointments and therapy.
Kidney appointment went rather well other than Jessica's Bi-carb seems to be all over the place. So they are wanting to monitor that a little more closely so we don't have a crises like we had last year with that. But the lab results yesterday showed that her bi carb came back up to normal so for the moment we dont need to add any other meds or anything yet. Her kidney nurse practitioner is a bit concerned about her liver and hopes that things will improve in that regards but says so far it is not affecting her kidney. Thats a really good thing and a blessing but due to them both being a filter system for the body it will be something to keep a close eye on.
When Jessica had her labs drawn yesterday they took blood for those CMV and EBV test and we should know something possibly on Friday if not then next week. The nurse practitioner does not think but is not going to rule it out as a possibility that she has either one of these but right now she said that she looked great and was not showing any signs of either one. GI is not wanting to talk yet about what is going to be done next whether the test come back either positive or negative they said we will discuss all of that when they have the results. So we wait as patiently as possible in hopes that we will get some answers soon.
I will update more when I get the results and also update you all as to how Jessica is doing when I can. I kept her home from therapy today I just felt that she did not have the energy or felt well enough. Hopefully we will be able to start again next week.
Have a wonderful afternoon.
Stephanie

Just a quick update

Talked with the GI doctors nurse and she said that we need to run some more blood work. they are going to do a EBV and CMV test to see if Jessica has either one of these and if this could be what is causing her elevated liver enzymes. More waiting. I just hope what ever is going on will not be for long term or effect her kidney function.

I will update more later as I find out things. Thank you..

Lab Results

Well I got a call from the pediatrician late last night stating that her liver enzymes are still elevated and that the levels had gone up some since the last lab work. UGH.. I am lost confused and scared at the moment. I was really hoping that her levels would have been back to normal if not normal at least the same or a little better.

Pedi said that there is something going on and that there is irritation and that her liver is still showing that it is unhappy. There could be so many things causing this so I am trying not to get to upset about it all but we are concerned and want some answers we dont want Jessica to have anything else going on especially with her liver. I am not sure what her other specialties are going to say today if I can even get in contact with them all. I think everyone was thinking that maybe it was do to a left over virus or that she was getting sick but so far she is doing good even though I thought that maybe she was getting another cold the last time I posted but the more I think about it she is teething too so I am thinking that maybe the cold like symptoms could be related to that because other wise she is acting great and no fevers. And fevers is one thing that she always gets when she is truly sick and then also her cbc came back totally normal last night.
I am rambling again but I thought that I would let everyone know what I found out about her labs. I will update when I here something back from the docs later today.

Thank you all for your prayers and support. Also a little update on the little boy that I was talking about. He as of yesterday afternoon was stable but still very very ill and on the vent. All test on his lungs and everything have come back ok so they are still trying to figure everything out. The family is hoping that he will get stable enough so he can get a medical flight down to florida where his parents have family and there is a good intestinal program down there. Both of his parents are in the service and the military has not been that supportive of there son being so sick and in fact have given his mom leave to be at the hospital but have from time time to time make her report and stay at work and that is what they are making her do later this week despite that there little boy is still in ICU. To me this is just not right and they should allow for his parents to be with him. So I ask if you all can to continue to pray for this little boy and his parents getting him back to florida where all there family is as well as for allowing at least his mom to be at the hospital with him.

Thank you all so much have a really good day.

Hi everyone,

Things are going well here. Jessica is acting like she may be getting yet another cold but so far is doing really good and the cold has not really hit yet hopefully it does not. She has been acting very good nad has found many ways to get into things she knows to stay out of so we have been mighty busy and she has more than kept us on our toes.

This up coming week is going to be busy. Labs on Monday to recheck her liver levels hopefully they are ok this time and not still elevated. Tuesday feeding/ speech therapy Wednesday is all day trip to Seattle for her monthly nephrology appointment and an appointment with her eye doc to schedule her eye surgery Thursday is physical therapy if her therapist is is back from being out sick and then friday is home physical therapy and pedi appointment. Although there are going to be appointments everyday this coming week hopefuly it wont end up being a week that is to eventful and hopefuly Jessica can stay well all week and not come down with this darn cold. Cold and flu season cannot end soon enough for us.

I hope that everyone has a wonderful week. As time allows this week I will update and more than likely will update when we get lab results in and also after the appoinments on Wednesday.

I want to add one other thing in. I have not been in contact with the mom yet so I am not going to use any names. But I ask for everyone to pray for a little boy and his family that we have come to know some from Childrens. He has had such a rough road his entire life. He had an intestinal, liver, and pancreas transplant this last August. He is not doing very well at all right now and is in the ICU at Childrens Hospital. He has many medical issues that are going on right now that is making his care very difficult and as a matter of fact he almost lost his life last week.He has vary many life threatning issues continuing to threaten his life. Including many infections and now CMV diesease from his transplant that is not responding to treatment and now rejection. This little boy has become near and dear to my heart and I ask that you please lift him and his family up in Prayer. I will update on him and give more info when I get in contact with his mom.

Thank you all so much,

Stephanie

Well I get to report some good information for once this week.

Jessica is doing ok. She has had some rough times in the last few days but really is doing good.

Friday was a much better day than the entire week. I went in for my appointment on Friday to find out my biopsy results and those all came back perfect. There is no cause for concern at this time and I dont have to go back to see my doctor till October. Yeah!!! Also more good news I got a call from the medical supply place that I have been working with to get Jessica her blood pressure monitor and they told me to come pick it up. I was very suprised by this call but very excited and relieved that we finally got everything to go through the insurance and another bonus I wont have to go into get her BP done 2x a week which is huge time saver to us... I was suppose to be taking her in to have her bp checked twice a week I guess but I must have been confused with my last bp conversation with them because I had thought that I was not really to worry about it because we were in the doctors office so much lately. Oppps... I feel bad now about it because maybe getting those numbers could have given us good information that could be of help. Everything works out and I cant go back and change the mistake I made I can just get them good data now with doing her bp's as they want. 2x a week and on those days they want a morning reading and and evening reading. The doctors are really hoping by doing this we can get some valuable information as to what is going on with her bp's and help us to decide if she really needs meds are not.

Over all Friday and Saturday were really good days and things are doing really well. Oh I almost forgot to mention that Jeremy and I went in and met with the local school district on Friday and found out that Jessica does qualify for services so that will start this coming Friday. On most of her evaluation scores she was estimated to be on an low to average level of a 13 month old. So she is not horribly behind but does need services and Jeremy and I are excited to have them start.

Thank you all again for supporting us so much it really means more to us than you know. Our thoughts and prayers are being sent your way as well. Thanks again and sometime later this week I will try to post another update.

Hi all!

I dont have a whole lot of new information that I have not already shared with everyone yesterday. I have spent almost the entire day so far on the phone with many differant doctors trying to figure out what needs to be done and the plan is this thus far. We are going to hold off on doing labs for 2 weeks unless there is anything new that comes up. There are a few reasons for this. 1. They want to give her veins some time to rest because they are having a really tough time and they have gotten blown a lot in the last couple of weeks doing all of these labs. 2. They want to give things a chance to see if she may have some sort of virus or infection starting that could be contributing to the elevated levels. Everyone says that there is reason to be concerned because her labs are showing that her liver is showing signs that it is unhappy and that it has irritation from something or the worse possible case is that there could very well be a disease or damage to some part.

We are still waiting for her nephrologist and cardiologist to call and put there input into all of this but so far have not heard back from them so I am not sure if we will here from them later today or not. If I do I will let you know what I hear..

Jeremy and I are having faith and believing for miracles and that there is truley nothing more going on with Jessica but we know that whatever the test results end up with we will get through and that God is not going to get us more than what we can handle and everything that we do go through he is holding our hand and walking with us.
Thanks to all of you for your thoughts and prayers it means more to us than we know.

Good Evening! Well I am typing this tonight and having a hard time doing so. We received a call this morning from her neurologist office about her lab work that he ordered yesterday and we didnt get very good news. There may be a new problem and the new problem could be related to her liver. Yes I said a new problem with her liver. This has completely blown us away but I didnt want to worry to much as they wanted to run more test and a liver panel to get more info. So late this morning I took Jessica into the lab and after not an easy lab draw I got a call tonight from the on call pedi stating that Jessica's labs do not look good at all. Her creatinine and Bun are withen Jessica's norm but some of Jessica's liver test were out of the normal some even quite elevated. We are not all sure what this means yet as we have not been able to talk with her other specialties yet but I dont think that it is going to be good. Also Jessica's white and leukocytes were slightly elevated.

Jeremy and I are really worried and scared about this new information I am not sure even if everything has completely sunk in yet. I am assuming that what is going on has not been going on all this time but is more recent. The reason I say this is the ALT test that came back elevated at 82 yesterday is now 124. The normal for our lab is 6-36. The other test that came back elevated today were not done yesterday so we are unable to compare those. I am not sure what the doctors are going to say tomorrow or what the next steps will be.

So as Jeremy and I try to hold strong and pray that there is not anything more going on with Jessica especially with her liver we ask that you please join with us in prayers for the doctors to have knowledge of what maybe going on and that we can find answers to this soon and that there will not be any major problem or even liver disease or failure starting to happen.
We thank you all for your continued faith prayers and support always.

It has been a long week already and it's not half over yet.. It will sure be nice when Friday comes.

Jessica had her neurology appointment in Everett on Monday. The appointment came with some good news but also with some sad news. Her neurologist is pretty sure what is going on with Jessica is not seizures but we can never rule that possibility out. Thats the good news. The bad news that we got is in fact that she is having tremors and he is concerned that they are happening more often and even though they are not always as long lasting as others some can be very long and strong. She still has very good days though to where they are not very noticable unless we are watching for them. But they do occur everyday. The Neurologist is pretty sure that the MRI will confirm this and also sure that it will show that Jessica has a brain defect. He is certain that she has some sort of neuro and brain condition he just is not exactly sure what and where the damage or defect is at. He thinks that she is also predispositioned to having these tremors. He also thought that this also could be helping to contribute to Jessica's speech and and eating problems. Up to this point everyone thought that her feeding issues were do to her kidney diesease and her reflux now we have found out that may have not been the case only part of the cause and we may have missed some early signs that something more was going on.
The neurologist also mentioned that these tremors may go away but it is unlikely. They could also stay the same or get worse to. If they get to bad he said that there is medication that he could put her on to help control them or reduce the effects of them. He also stated that she has more than likey been born with the tremors it is just that there is some possible issues with her electrolytes or system that could be making her tremors flare up at times. But this is all just thinking at this point more than anything he is not sure but he said that we are going to have to monitor things more closely..

Jessica had lab work done today that was ordered by the neurologist we have not got the results back yet. Also today Jessica had an evaluation to see if there is any services that she could qualify for with the school district we will have that information of Friday.

Other than all of this appointment stuff and hearing the information that we heard we are doing ok other than being saddened and still trying to process it all. Jessica is doing pretty good. Very tired but she has had a lot going on so hopefully that is what is causing her to be tired. She is very Happy and I am happy to report that she has reached 21 pounds some of this weight I still think may be some water weight but I dont think to much of it.

We hope that everyone had a good Easter and we hope to hear from everyone soon. Take Care and all of our thoughts are with you all.... We love you and thank you for all your prayers and thoughts.

HAPPY EASTER!!!

Well Jessica has had for the most part a good week a little tough at times but ok.. Eating this week for Jessica continues to be a struggle. She has had strong adversions again so I am not sure what has been happening there. Also this week in physical therapy Jessica struggled quite a bit and the physical therapist is a little bit more concerned that she did not make any progress not even the slow progress that Jessica normally makes. Along with that Jessica was really shaky again at therapy on Thursday so Ann the pt said that we are really going to have to even work harder with her and she also asked me to call Jessica's Neurologist again and mention to him what is going on. Well I was able to finally get a phone call back from the nurse at the neuro clinic and told her what has been going on and she said let me email the doctor and I will give you a call back withen a week I said ok what should I do in the mean time and she said just to continue documenting everything and if anything of more significance comes up to call right away.

Little did I know that I would receive a call back in less than one hour saying that the neurologist wants to see Jessica Monday during his lunch. I am really concerned about this and hope that there is not something that he knows that I dont already know unless of course he has good news for us. It is strange how her first appointment took 4 months to get into but this appointment took less than an hour to get and he is canceling his lunch to be able to see Jessica. That is why I am worried. How often do doctors cancel there lunch to see a child without having some concern themselves?

I am sure that everything will be fine just a little nervious thats all. I will try to update when we get back from our appointment but it will be a really long day so it may not be till Tuesday.

Thank you for all of your thoughts and prayers. Have a wonderful Day and a Happy Easter.

Hi everyone! Just a quick update...

Jessica did awesome this morning for her EEG. She started to get cranky while they were hooking her up but all in all I was impressed with how well that she did. Also she did awesome yesterday while I had my procedure done which also went well. Still pretty sore but I am getting through it. I should have answers on the biopsy in two weeks when I go in for my follow up appointment.

Ok back to Jessica. Again like I said I was very impressed with her and how good she was today. Thank You all so much for all of your prayers and kind thoughts. Things went much smoother this time around no screaming fits and no throwing up. I was releaved that it all went so well. So again Thank You!!!!

The tests results for Jessica's EEG should also be back in a couple of weeks. So of course I will let you know what they are when I find them out.

I will update more later.

Hi everyone!

Well Jessica had her nephrology appointment last week and that went really well nothing major to report. Labs are still pretty stable other than her potassium which seems to be climbing again so we will have to watch that and see what it decides to do. Other than that they were happy with the way that she looked and how she was interacting with the everyone. One thing that was brought up at the appointment was about her recent bouts with edema. Kidney doctors at this point and time think that it may be more related to her lymphatic system than her kidney. Me I still think that it has something to do with her kidney. there are just many things that make me feel as the kidney has something to do with it. And the strange thing is it all started when I increased her feeding volumes.

Jessica also had a physical therapy appointment last week for a new evaluation to see where she is at and how her delays are coming along. Her physical therapist seemed really happy that Jessica is starting to take a lot more steps but with this comes some concern. She mentioned that Jessica seems to be more rigid and does not seems to have the range of motion that she should have. So she wants to start working more with Jessica again in hopes that this may help. So now we have a speech appointment, feeding appointment and physical therapy appointment that we must go to each week all of which are on different days and if her potassium does not get better we will be back to doing labs at least once a week again if not two or more times a week. I am not trying to complain here it just seems as when life seems to slow down for a moment things take off again like a jet. Whatever must be done we will do and we know that we will be given the strength and the energy to accomplish each thing. It just gets so hard for me sometimes because I really do enjoy sitting at home with her and just playing with her and having quite moments a lot of which we loose when there is so many appointments. I just know that we cannot get this time back and I am missing her being a baby and she seems like now she is growing up so quick. I cherish all the moments that we do have with her even if some of then are at the doctors.

On the very up note Jessica has had very good times this week and has been so happy. She has also done awesome at eating. It may be only a few bites here and there but this is a huge improvement from just a couple of weeks ago and the fact not only is she interested in the foods she has been trying them. A lot of the stuff she is really not suppose to be having but at this point I am just watching the amounts very closely. I am just really excited. Also this week Jessica seems to be happy almost all of the time laughing a lot and boy have we seen some of her personality come out. It has been great.

Wednesday I go in for my procedure and then Thursday morning Jessica goes in for her EEG. So I ask for prayers that my procedure will go well but more importantly that Jessica wont have such a rough time this go around and that she wont get so angry and not being able to go asleep that she ends up sick. I felt so bad for her last time it broke my heart all the more reason that I dont want to put her through it again but the doctors think that it is really something that needs to be done again.

Thank you all so much

Stephanie

Good Morning!

I have woke up and cannot go back to sleep so I thought that I would type an update even though it is the wee hours of Tuesday morning.
Jessica has her nephrology appointment today in Seattle with her big neph doc. I am a little bit nervious about this appointment due to some of the changes that Jessica has had this last month. And with her blood pressures still being a little evelated I am not sure what her doctor is going to decided to do. In one since I want them just to wait and see if we can still try to get things down on there own by adjusting some more and then in another since I just want them to go ahead and put her on the meds and control her blood pressures before it creates more issues. We will have to see.

Jessica has been having an ok week or so one day she is having a good day the next day she has a bad day. She has been doing a little bit better with taking her bottle or milk from a sippy cup but there is room for improvement still and she is still not taking as much by mouth as she was before she got sick. I am sure with time she will get back to eating better again.

Jessica had to go into her pedi this last week because on Wednesday she had a lot of swelling and on Tuesday night she soaked the bed with sweat and no fever. Doctors think that it was due to fluid over load so we are having to watch her fluids more closely and not go up on her volume as we were working on so we could get her off of night feeds. We are to try again but more slowly on increasing her volume to see how she tolerates it but for now intill she can stop being so puffy in the mornings and at night I am waiting on changing anything and also waiting to see what her doctor has to say about all of it today.

Also on Friday Jessica was at her pedi appointment and had a pretty bad tremor that lasted the length on her appointment and then some. Talked with pedi more about it today and he is not sure what would be causing it but at least he saw it and how bad that it was. It is concerning to both him and myself that they are not getting any better but only worse and at times now Jessica is not able to move around well when she is having them as she showed everyone on Friday at the pedi office when she was trying to walk aroung all she was doing is stumbling and falling over. Mentally Jessica is ok during these but physically she has a hard time. I will be talking with the neurologist hopefully later today while I am at Childrens.

I have been doing a lot of reflecting on the last 17 months and being so very thankful for the many blessings that we have had. Although things at times are very tough and hard to understand why she or even our family have gone through what we have I try to remind myself that things could always be worse. And I am trying to take everything as it comes as good as I can. Jeremy and I both are for that matter. We know that we have a long road yet ahead of us but I belive that our faith and the support from all of are friends and family we will be able to get through and do just fine. I was on the phone earlier this evening with my sister in law and trying to explain to her like I have to so many others when they say I am sorry. We dont want people to feel sorry for us we just want them to understand to the best of their ability what we are going through and how some things are just not the same in taking care of Jessica as it is for taking care of a normal child with no health issues.
This is the road that we are on and God has everything in his control. He has chosen us to be parents to Jessica and he has chosen this road for us and I know that he has a plan and a purpose. Already we have gained so much from going through what we have and have a better understanding of how precious life is and it is not to be taken for granted. I think so often we get cought up in the little things in life and dont focus on the big picture. Everyday needs to be cherished.

Thank you

Hi All!!!

I have some better news today and then some mixed news.

Jessica has a think finally turned the corner and seems to be doing better as far as her cold is concerned. I am thrilled that she is doing better with this and that she is not any worse. Jessica had to go in for her synagis shots and also a check up on Friday with her pediatrition before we went to Seattle Childrens for her Neurology appointment. At her pedi's office her weight was down some from earlier in the week but I expected this so I was ok with it. Her doctor said that we are going to have to see if this cough at night gets better or if it is possibly also a little asthma related. He is thinking that she may very well have some asthma so he said we will watch and see and keep a close eye on her for this possibility too.

Ok so now onto Childrens and the neurology appointment. I thought for sure that the neurologist would tell us that he didnt think that she was having seizures and that it was something else. Well I was wrong. The doctor thinks that there is a large possibility that she is in fact having possible seizures and that she is also has a lot of contributing factors that make her at higher risks for seizures and to add to our already tired minds at this point he stated that she diffenently has some sort of neurological problem even if she did not have seizures and at this point he does not know what it is and that he will have to run more tests and also run another eeg.

So we just wait for more test to be done and watch her. There is a chance that he may put Jessica on medication down the road and see if it changes anything with these shaking spells that she is having but for now he is going to hold off on any medications right now because they all have side affects and effect the kidney. And know one wants to bother the kidney if it can be avoided. There is just to many risks. And then as far as her other test which is an MRI of her brain that will be done when she has her eye surgery since she has to be under anesthesia for both they will just do them at the same time and hope to minimize any possible side affects from her going under anesthesia more than once. Eye surgery is not scheduled yet but she has another eye appointment in April to go over the surgery and set the date.

I think that is it for now. A lot of information and we are still trying to process it all. It is so hard at times for us to keep adding to her list of stuff that is not right and not being able to eliminate anything but in time that will change. We believe that.

The really good thing is Jessica seems to be doing much better and is doing much better with this cold than she was just a couple of days ago. We are so greatful for that and all of your thoughts and prayers.

Have a wonderful weekend.... I think if it warms up a bit we may try and go outside for a little while. It is beautiful out....

Well it has been a really long and hard last 24 hours.

I would love to type this update and say that Jessica is doing better. But really she is not. She is struggling a lot and today we had to start yet another medicine to go into a nebulizer to hopefully help with her cough. Last night was a really rough night. She spent much of her night up coughing, choking, gasping, and crying. She did not do well at all. This morning was much of the same. She was so tired she tried to go back to sleep shortly after getting up this morning but that did not go well. She kept on having coughing episodes and then with the coughing episodes if they went on long enough and were bad enough she would throw up. not good. So first thing this morning when her pediatricians office opened up I called and they agreed that we have to try and do something to help these coughing spells. I got a call back shortly before lunch and the nurse told me that her doc wants to start treating her with the nebulizer treatments and hopes that this will help. So far I have not noticed a difference so we will see I am not giving up yet.

Much of the day she has spent in someone’s arms not feeling well and tired. She did try to spend a little time with brother and sister but got too worn out. Even tonight when I gave her groth hormone shot she just barely moved let out a little whimper and went right back to sleep.

I sure hope that I can post a better update tomorrow. Sorry this one is not really upbeat but we are all very tired and getting more concerned as the days go by and Jessica is not feeling better only getting worse.

My thoughts hugs and prayers are being sent to all of you. Thank you all so much for your continued support and prayers.

Hi Everyone! Just another quick update.

Jessica still has her cold and we took her into her pediatritions today and he started her on antibiotics. He says that we need to get aggresive with this in hopes that it will go away. The problem is most of the stuff that he has seen has been viral but he said even if this is viral maybe it will help to prevent her from getting a full blown infection. She has had this stuff for 3 weeks now and only seems to be getting worse. Totally refusing feedings, really tired and cranky, and not sleeping well at all and she also continues to have her really bad bouts of coughing choking and gaging.

On the up side when she feels up to it she is walking all over the house now and of course she still falls but it is encouraging to see her walking.

I will update more as I have to opportunity to. Thanks for all your thoughts and prayers.

Good Morning!

Just a quick update on Jessica. Jessica has been really trying hard to walk this last week and taking more and more steps on her own. I think that once she is well that she will be doing even better and she will have more strength and energy to play and walk around.

Jessica is still having a very hard time with her cold that does not want to go away. i think for sure that she will have to see her pediatrician again later this morning. Jessica really has had some bouts of coughing , choking, and having a hard time catching her breath especially with an episode earlier tonight. I sure hope that this visit by this cold will be over soon and Jessica will be back to her self and feeling better. She still through everything will smile and even laugh but I know that she does not feel well.

So I ask in my closing this morning that you just say an extra prayer that her body will have the strength to fight this cold and that she will feel better soon and that things will not get any worse.

Thank you! Have a wonderful week and if time allows I will try to post more pictures of Jessica. I was going to on Sunday but just was not able to get around to it.

HAPPY VALENTINES DAY!!!!

Just a quick update. Jessica is doing pretty well other than a stubburn cold that she has had this week. Jessica had a GI appointment yesterday and that went pretty. They are not going to make any changes at this time and we dont have to go back to there clinic for 3 whole months. WOW!! Thats the first. I am not holding my breath we will see. Also Jessica's blood pressure at the appointment was down to 98/56 a little bit better than what she has been at. I am just very thankful that it was not in the 1??/??
range like it has been. I also took her in to her pediatrician for her cold and that went well. He just thinks that it is a virus at this point and we are not going to start antibiotics but I am to call him right away if she gets any worse. If not he will see us next week when she goes in for her synagis shots.

So over all things are still going well for Jessica. I do have a little side note that is not related to Jessica and that is me. I have had to have a few extra appointments over that last couple of months since I went in for my annual exam and old OBGYN has detected a growth called a polyp ( which rarely are cancer but it is possible) on my uterus just over three months ago. Well I went in for a follow up yesterday and got a call this morning that it has grown and that my doctor that my doctor wants to see me back in his office next week to decide what we need to do. I am not too worried at this point but am concerned because my mom had to get a complete hysterectomy when she was in her twenty's do to cancer cells and ovarian cysts all the time. Another concern that I have is with is something is wrong with me and having Jessica with kidney problems it is just a lot to handle.
So I just ask that people can keep this in your prayers as well and that everything will turn out to be fine and that I will not need any surgery that is going to keep me down for any period of time for I just dont have the time or way that I can be down.

Again thanks for everything. And have a wonderful Valentines Day...

What a wonderful surprise today!!!!

We have spent all day and I mean all day at Children’s and on the road going to and from Children’s. But today we heard good news from Nephrology. But I will get to that in a minute once I say what happened with the Genetics appointment which was a little more frustrating and depressing.

The genetics appointment which was first thing this morning did not start off as I had hoped that it would. New residents means taking so much time to go over Jessica's very long history. But to my amazement they must have done some research on her ahead of time and prepared themselves which was very nice and the first time that we have had that. After just repeating some of her history her genetics doctor walked in and we talked for almost an hour and went over everything that has been going on since we had last seen him along with this he did another evaluation and went on to tell me that Jessica is showing more and more signs of a syndrome or syndromes but still cannot tell me what. Akkkk Now it has gone from syndrome to possible syndromes with still no answers and yet more and more signs of something more going on. He also stated that Jessica's color condition if it is not related to her heart is some sort of capillary condition probably tied in with the still unknown syndrome(s). We also had to get some x-rays of her hands today as this he said may give us another piece to the very puzzling puzzle of Jessica. We will not have the results back for a little while. And while we wait for those results we are also waiting to have a newer more sophisticated genetics test done which is the same that she had done months ago but now they have updated it. They don’t think that this will lead to any answers but they said that we better just be sure. Why hand x-rays you might ask. Well since birth Jessica has had clynodactly of her pinkies and also very very loose joints in her thumbs which they are believing that is part of this syndrome(s)... It all is rather confusing but hopefully you can understand some of this. To sum it all up and make it as simple as I can the genetics doctor see's possibly more signs of a syndrome or syndromes which have yet to be identified and that we are going to see possibly more things come up and as time goes on and as she develops more.

Ok onto the Nephrology appointment. For once in I don’t know how long Jessica's labs are very stable. Her iron panel today was really good actually her iron level was a little high but with the iron stores and iron saturation percentage her level is good. They explained to me that when her saturation is at 10% or below is when she needs further treatments with injections. Her iron saturation was at 21% so we are good for now. The greatest thing today is that she is very stable once again and doing well.

From this point on like before we are going to take one day at a time and continue to believe in Gods miracles and be so grateful that things for right now are doing so well. And grateful for all the good yet to come. We know that we are going to have our bumps in the road and by no means are we away from Jessica having to have a transplant down the road but for right now her progression of her kidney disease is stable and not rapid. If that makes any since.

Thank you all so much for your continued faithfulness and your support love and prayers. They mean so much. We love you all. Thank You!!!

What a wonderful week that it has been. Jessica also took 4 steps this week on her own.

Although it has been busy Jessica has had for the most part a very good week and has been feeling pretty good. Jessica from time to time still battles with some diarrhea and has been having increase in her reflux symptoms but over all is doing well. Her stomach issues are going to be her new norm as her kidney disease progresses so as long as we can manage to get food in her and keep almost all of it down and have her still gain weight and grow that is the main thing at this point. The diarrhea we really don’t have any understanding as to why it continues but it is not bad enough to torture her with yet more test. So we will wait and see if that is something that will improve with more time.
This week actually tomorrow Jessica has her 6 month genetics follow-up appointment and then we have another nephrology appointment with tons of labs. They are going to do more of a extensive workup and then also test some stuff that they have never tested for before or stuff that they did test for at one time but I cant remember so we will see. I am a little nervous as too what the results may be but having faith and praying that if they are not any better that they will not be any worse.

So I will update you all tomorrow after our long day in Seattle as to have things went and as to what we find out. I ask that you please pray for healing and for good lab results tomorrow. Thank all so much for your thoughts and prayers.

Just a quick note.

We got Jessica's ultrasound results back and they are not bad but not really all that good either. Since last months ultrasound and the ultrasound that she had on Wednesday it shows that there is no kidney growth and the kidney itself looks more diseased. Something which the nurse told me today that we should expect that but it is hard for us that each ultrasound only a month apart from eachother is showing more and more deterioration. I was really hoping if not any better that the results would have shown the same as last ultrasound but it didnt. I just pray that the progress of her kidney disease slows down and allows her to grow. The nurse also stated that she does not think that this change would be causing her issues with her blood pressures. But then again we are talking about Jessica here and sometimes ok a lot of times when things dont normally effect other kids it does effect Jessica. Thats just the way that she is and we are used to that now. I am planning on talking with the doctor sometime next week one way or another about this because it does concern me if it is not her kidney or heart that is causing the increase in her blood pressures then we need to find the cause so maybe we can find a way to treat it if at all possible.

Ok I think that is it for now I just wanted to let everyone know what we just found out.
Have a wonderful weekend.

Hi all,

It has been a very busy few days. Jessica is doing very well despite all of the doctor appointments. We have traveled just about 250 miles in 2 days running to and from doctor appointments.

Jessica has been much improved from her illness that she had for almost 2 weeks. Her blood pressures are still high but at least this week we have had one normal blood pressure although the rest of hers were still high.
We went to her nephrology appointment on Wednesday and Jessica also had her ultrasound. We had a long appointment talking with the nephrology nurse practitioner and she liked how Jessica was looking other than her face which is still broken out so she gave her some medication for that so hopefully it will clear up soon because it is becoming raw. At this appointment we discussed more about what her kidney may do and that is it is either going to swell up and fill with fluid or it will shrink down to really almost nothing. we are not sure at this point what it is going to do. Other things that were discussed were her labs are going to be done again in two weeks at her next appointment instead of one month, we still have to get a blood pressure machine for the home. And last but not least I had training on and gave Jessica her first growth hormone shot. It is so hard for me to in a since hurt her but I keep trying to remind myself it is for her good and to help her. I hope it only gets easier from this point with this because I am still very confused and a little emotional over it.
Jessica also had an unexpected cardiologist appointment today that Nephrology scheduled for her because they were a little concerned about her color and they also wanted to rule out her heart having anything to do with her blood pressures being high. Jessica from time to time throughout the day has times where her color in her hands and feet are pretty purple this has happened both when they were warm and cold so it was a concern at yesterdays appointment especially when we were in clinic and she was very warm and her hands were a light purple and feet a deep purple. At the cardio appointment today they did a very through evaluation with an echocardiogram. The echocardiogram showed that her left ventrical is enlarging some and that there is some shunting and a little extra blood flow to her lungs due to her VSD and then there is also some leakage around her ASD patch all of which the cardiologist is not all that concerned about and does not think that it is causing her current color concerns or blood pressure issues and is not something that they will operate on to fix do to the location and the possible complications associated with the repair all of which could do more harm than good. He says all in all it looks like Jessica's heart is looking very good and strong. This was good to hear.

So all in all Jessica is doing very good from what I can see and from the medical stand point she is as stable as she can be at this point in her kidney failure and with her current blood pressure issues. We are still awaiting for her ultrasound results so when we find out what those are we will let you know.

We send or love, thoughts, prayers, many thanks and hugs to all of you.

Good Morning!
It is early but a good day so far. I am happy to report that Jessica although is not completely back to herself and is still having bouts as if her stomach is bothering her she is doing much better. I am so happy that she is starting to tolerate her feedings again and actually is showing some interest in food. She is still at times acting as if she is going to get sick but manages not to. I am relieved that she is not continuing to throw everything up for the last 24 hours although she did have a few bouts of diahrea on Saturday everything else seems to be getting back to normal.

Jessica still is having issues with her blood pressures being high and so we will get the ultrasound on Wednesday as well meet with the nephrolgy doctors and see what we need to do from that point. I am hoping that there are no new things that show up on her ultrasound unless of course it is good information.

So tonight I say thank you and as I prayed tonight I asked for continued healing and health for Jessica and also good outcomes with her kidney ultrasound on Wednesday and also with her blood pressures this week. Oh and one other thing that we have had to deal with this week and that i ask that you can join in with me in prayer this week is a blood pressure machine for at home. The doctors have oredered it but it is the insurance that does not want to pay for it. We have appealed the insurance and should here back this week. But even if we get the ok we still have to find a place that carries the machine that takes our insurance. There are many different factors with this I am able to find the blood pressure machine and then we find out they dont take our insurance or we find places that take our insurance but dont carry the machine that they are wanting for her at home. It has been a very tiring battle but one I know one way or another that we will win. We have to. The machine cost up to 3,000. Ouch...

Thank you all and I hope that all of you have a wonderful week and I will update you all more than likely after the appointments on Wednesday unless things arise before then.

Thanks to all of you. We also want to send you our love, hugs and prayers to all of you and your family.

Hi Everyone!

Well Jessica is hanging in there not much better but not any worse other than being more tired and worn out. We are on day 8 now with her getting sick either with the diahrea or the vomiting. And still we dont really have any clear answers. I am so frustrated with not having any answers and having her go from one extreme to the other.One day she is throwing up all her feeds and then the next she is having explosive diahrea. I dont understand it.

She goes in for another blood pressure check tomorrow. I sure hope that her numbers are ok or at least better.
After speaking with her doctors yesterday they still feel as if there is a combination of stuff going on and all of it is just making her as sick as she is. One other thing that they are having me do is PH test on her stomach acids to make sure that they are ok and so far so good. We do have a lab slip here also to take a stool sample in and have her tested for the Rota virus just to be on the safe side. Now Jessica had the Rota virus last March and this is nothing like that so I dont think that is what is going on but hey i am willing at this point in time to check anything if it could give us some answers.
Oh and some good news after talking with the Gi doctor we are at this point in time are not going to put back in her GJ tube they are going to stick with what she has now. That is a blessing in itself.

Ok I dont think that I have much else to update right now. But if things change I will post an update again. Thank you again and for checking back to see how Jessica is doing.

Part 2

Jessica's lab results came back in this evening and I was rather shocked as to how good they were. They are very similar to her base line numbers. I was really expecting them to be way out of whack with how sick she has been and not being able to keep much of anything down. So having her labs be about the same as her base line is encouraging to me. I am interested to see what the nephrology doctors are going to say about them.

Jessica tonight is doing rather well with her pump. I have it set just a little bit above half the rate she would normally get to see how that goes and so far so good. I figured that I could run it at that rate for the night if she did not tolerate it then I would just have to turn it down but I have got to try and push whatever I can as long as she is tolerating it. I know that she is not really fully hydrated and I think that played a huge roll into the lab ladies not being able to draw her blood easily today. I mean she is a hard draw anyways especially for lab people who do not know her but I have got to give credit to the two lab ladies who always draws her blood they are great and I love them so much and I feel so bad for them when they have to draw her labs and especially on days like today when it is so difficult.

well I think that I am going to close for now. I will possibly update again tomorrow as to how things are going.

Thank you again for all your support, love, prayers, and following our journey with Jessica.

Good Morning!
We are still at home....
Tuesday was a very long day for Jessica and myself. Jessica spent much of the day still getting sick every time that she ate but in between feedings was acting very normal besides being a little more on the tired side in the morning but I think that much of that was because she was up sick much of the night last night.

I spent much of my day making phone calls and trying to get a good plan in action for all of this and to see if we could find something out and get this throwing up under control. After speaking with the nurse practitioner in Nephrology in the morning she to herself said that we had to get something figured out and that there was really more concern after she reviewed more of her blood pressures. She stated that on Monday when she had talked with me that she was not looking at the right numbers and that she made a mistake and that I was right that there was a increase in her numbers and that her numbers were too high. This was not reassuring to me this morning when I was talking with her. The nurse practitioner stated that she was going to talk to the head nephrology doctor again once she was out of her morning meeting and call me back later this afternoon.
Well she called me back later this afternoon and filled me in on the plan and what the doctor had said and all of it was not very encouraging rather I wouldn’t say depressing but just not what I wanted to hear. She stated that the vomiting is something that we just rather get used to and that this is common amongst children that have renal failure and that it will only get worse and there is really nothing that we can do to change that but that it should go away and that she will fill better once she has a transplant. Ok that I guess maybe the truth but I was not expecting to hear that today. I know it was something that we were going to have to face at one point or another but I also had no idea that it was going to be like this or even worse.. There is also no medication that they could put her on to help that would not have its own side effects.
There is also something’s to consider with the Gi docs and Cardio department all of which she is going to be getting in contact with on Wednesday. One of the possibilities that the nurse mentioned is maybe there is a way that for right now we can change her tube and put in a tube that will by-pass her stomach again. OK I want her to stop throwing up and she has to get the nourishment but I cannot see her having a GJ tube in again and actually leaving it alone. I really do not want to go down that road at this point. I want to give it a little more time and see if things don’t get better on there own. I really do hope that our pediatrician is right and that maybe it is just a weird stomach bug and that it is like what he has been seeing a lot of and everything is just aggravated by her reflux and kidney disease.
So that is my prayer tonight that this stomach stuff that is going on is really only a stomach bug that is only aggravated more due to her already bad reflux and her kidney disease.
So the rest of the plan is for the nephrology doctors and myself to talk to cardiology and rule out that there is not anything new going on with Jessica's heart that could be contributing to her elevated and high blood pressures, also to talk to GI docs again and get there input as to how to get food in her without throwing everything up and also to rule any other contributing factor to her throwing up and last but not least Jessica is scheduled next Wednesday at Children’s for an ultrasound just to rule out any possible hydronphrosis or other condition that could be contributing to her elevated blood pressures.

Please see part two for the rest of the plan , Jessica’s lab results and how Jessica is doing tonight.

Good Morning! It again is the wee hours of the morning that I am typing this but for the moment Jessica is asleep and I have a few moments to update you all on what has been going on with Jessica before I try to get some shut eye myself.

Ok really quick. Jessica has not yet been admited to the hospital but I am not sure how long that is going to last. Sunday she had a good day and was not getting sick so that was a huge blessing but again today she started to get sick. Not only sick again but now she had a really bad very loose stools after we left her pediatritions office so no more than anything I do think that maybe she does have some sort of weird stomach bug or something all though she is not acting sick other than the one very loose stool today and then the throwing up friday night into saturday and now again today.
Another thing to is I took Jessica in for another blood pressure check today and her blood pressure went back up again and is about where it was at the other day when we relized that there was a problem. Yikes!!! Jessica's nurse practitioner that I talked with today is going to go ahead and order a blood pressure cuff and home equipment for us now that we know that this is not going away as soon as we had hoped and unlikely that it will go away on its own.

Jeremy and I are hanging in there. One day and one step at a time and having faith and trusting God that he is working everything out. Yes we are worried ok we are scared but we also have comfort and peace that everything will work out....

I have put Jessica back on her pump at a very slow rate. My goal for the rest of the night is to keep some fluids going in her even a slight amount to help prevent her from getting dehydrated so far so good. I would very much like to stay home and not take her to the hospital anytime soon.

So in closing this morning as I type this I just ask for continued prayers for Jessica and that what ever is causing all of this confusion for the doctors and for her sickness that it will clear up and that Jessica will remain strong and her kidney not damaged from all of the high blood pressures.

Thank you again.

Hey Everyone. Its the wee hours of Sunday morning and I am typing this to let you all know how Jessica is doing and to let you know that there is a good possibility that she may have to get admitted to the hospital later today if she does not do any better and cannot tolerate her feedings.
Jessica for the most part has been acting herself and not acting really like she is sick with anything other than right after she throws up. I had a good talk with the on call GI doctor and he is worried that there maybe something going on other than just a simple stomach bug. Jessica is able to tolerate a very slow continious feed on her pump but anything other than that she throws right up and sometimes even before we can get the bolus feeding done. From time to time over the last month she has gotten sick and not tolerating her feeds but nothing like this and for this long. I am really worried and hope that we can find some answers soon to what is causing this. I have tried to give her the bolus feeds even over a longer period of time than her normal and that did not seem to change anything she still got sick.

I am not sure what later today is going to bring I just ask if you can to continue to say a little prayer for Jessica not only for her kidney and her blood pressures but for her over all health as we have no idea what is causing the latest and we are concerned. I myself am wondering that maybe there is some kind of a connection with it all.

Thank You again for all of your continued support and prayers it means more to us than you know.
God Bless

Stephanie, Jeremy and Family

Just a quick update before we all leave to go out for dinner. Its Friday night and we have decided that it has been a long week so we are treating ourselves and going out for dinner. Jeremy and I are taking Emily and Jacob to grandma and grandpa's and then Jeremy, Jessica and I are going out to dinner. It should be nice.

Jessica had another blood pressure check today with no improvement from yesterdays. So her blood pressure is still high. I was really hoping that there would be an improvement but there was not. I am greatful that it was not any worse though. I talked with the nurse in the pediatricians office and they are all concerned to. As far as talking with the nurse practitioner from nephrology today she was not in the office so I talked with the on call fellow and she is going to talk more to her team and see if we need to change her PTH medication. due to after much research we found out that in slight incidances it can cause blood pressures to increase. It is not a common side affect but then again when does Jessica react in a common way to medications and such..... The reason this was discussed today is I talked with the fellow and asked her about the rapid change in her blood pressure since they increased her medication 2 weeks ago. To me it makes since that this may very well be the cause to her increased blood pressure. I guess we will have to wait and see. It would be really nice if this was the cause. there still will not be an easy fix to it all but at least it is better than the alternative. Another thing that was mentioned and the fellow is also going to talk to the team about is seeing if Jessica is old enough to do a 24 blood pressure monitoring. That should be interesting.

Ok Everyone is ready to head out the door so I best be going myself. Have a good weekend. We love you all. God Bless...

Hello,

Well I am only have a moment to post an update before I have to get meds and food done for the night. Todays Blood Pressure check went a little bit better than yesterday but then again she was so sound asleep that I dont know how accurate that it was. Tomorrow I have to take her back in and they want to get a pressure while she is awake to see what the difference is. Her pressure being on the high side while asleep concerns me as to what it is like when she is awake. We will have to wait and see what it is like tomorrow and pray that it is not any worse. But for now we just pray and have faith that everything will be ok.

I will again update you tomorrow as to how those readings are. Thank you all for your continued support and prayers they are apprechiated more than you know.

Hi Everyone,

This last week has been a week with many ups and downs for Jessica. Jessica has been having some really good days and then she will have a bad day. But for the most part she is very happy and thriving. Her weight is not down but not up either so I am happy with that at this point. Jessica is getting around like you would not believe. She is always on the go when she is having her good days.

Lets see. Jessica's reflux has still been really bad so I called and left a message for her Gi doctors office yesterday and got a call back today and they had me bring her in to see her GI doc today and that appointment was very long. We are all trying to put our heads together and try to figure out why Jessica's reflux is getting worse and not better and why she is throwing up more and more and cant handle larger volumes of her milk. All we are able to come up with is lets feed her more often and smaller amounts of her milk throughout the day and then turn down her feeding pump during the night and then also try and feed her more pureed foods through her feeding tube into her mickey and then there is the battery of test that they drew blood for today and we are hoping that the results will be back in 1-2 weeks. Most of these test are more metabolic test and then there are some others that I am not sure about what they are for.

During the GI appointment Jessica had her blood pressure taken not once but 4 times with two different machines while she was almost asleep and it was all done over a period of about 3 hours while we were there and all of her numbers were extremely high. This is something very frustrating and worrisome. Just a little over a week ago her blood pressure was good. I wrote the numbers down and after I left the GI clinic called her kidney docs and the nurse practioner is indeed concerned and stated that this is something that we need to get a handle on and watch very close for this is more in likely caused by her kidney failure but having high numbers like Jessica's could cause more kidney damage that Jessica just cannot afford to have. Jessica's blood pressures have almost always been on the low side or in the normal range but her numbers today were very high and if they stay in this range the nurse said that she will be diagnosed with hypertension. And we will have to start blood pressure meds. We are to get blood pressures daily during business hours for a week and see what her pressures do even if her numbers are good when we take her pressure tomorrow. The nurse said this is not an emergency at this point but it is something that we have to pay very close attention to and if her pressures do not improve on there own then we will have to start medication to get them lower. And the medications themselves can have some draw backs.

I ask that you please pray for her blood pressures to go back to normal and that she will not have any kidney damage done while they are so high. I don’t think that kidney damage will happen really quick but if for some reason that we cannot get control of this really soon and we are having to play the balancing act with everything that in that time her kidney will be ok.

Thank you and I will update tomorrow as to what her numbers are like.

Happy New Year!!!! News Years day update that did not get posted till now.

Christmas was my last post and not to much has happened other than Jessica having an eye appt at Children's and also a nephrology appt to check on her weight loss and her blood pressure.

The appointment although long went very well and yes there is a possible surgery in her future but for now we are waiting to see if things get better on there own. In three months she will go back and at that point we are to discuss the option of surgery if things are not better. She will need glasses but we are also going to wait on that for at least another 3 months and in the mean time hope that things will improve.
On the other hand the unscheduled nephrology appointment went ok. Jessica's blood pressure is great. But her weight is a thing that we are going to have to work on. It is still down but not as much as it was on Christmas eve. I have really been trying to add an extra ounce here and there with her feedings to get even more calories in her in hopes that it will help with her weight gain but it is hard with her reflux that has been so bad lately. On another note with her appt we got back her PTH test and found out that her level has more than doubled in a little over a month so we have to adjust her calcitriol again in hopes that it will bring her level back down. The only problem with doing this is usually it makes her calcium level jump and that is not good either. Instead of running her PTH test in three months we have to run it again in a month. UGH....

Jessica on another note has again had a rough few days with even a choking episode on mucus i think I almost had to call the medics. She kept on retching and choking it scared me so much but after a few hard blows to her back she threw up and seemed to be ok for a little bit and again she did this and I know that she had nothing her in mouth this time. Again a few blows to her back and she threw up and seemed fine this happened a couple of times and that was that. Scared the daylights out of me but my main thing is that she is ok. I would just like to know what caused it. She has been really attached to my hip for the most part of this last week and not looking like she feels that well and tonight right before bed I realized that she has a little runny nose. I am hoping that the crankyness and runny nose is from teething and not from a cold. I am sure time will tell.

Happy New year. May this year of 2008 be a year of many miracles and blessings.

MERRY CHRISTMAS!!!!!

Merry Christmas to everyone from our home to yours.

I meant to do a post on Jessica's appointments yesterday but by the time that I got home we had to leave out the door to Jeremy's parents and then onto Christmas eve services at Church.

Jessica's EEG appointment went really well despite her getting very mad and very sick on our way to Seattle. Jessica spent much of the morning on the way to Seattle throwing up. What a mess that it was. We are not sure what caused her to be so sick but I do know that the night before she was not feeling very well and was up much of the night. By the time that we left Seattle Jessica was feeling much better and not getting sick anymore and other than being very tired she was acting like herself. What a relief that she did not continue to be sick.

After leaving Seattle we headed home and got a phone call from Jessica's pediatrician that if we could make it to his office before they left they would like for her to get her synagis shot that she didn't get on Friday due to FED-Ex not delivering it in time. So Jessica was able to get her synagis shot and also another weight check which ended up being a big concern for all of us. Jessica's weight was up last Friday but despite that when they weighed her yesterday Jessica was found to have lost 10 ounces almost a pound in just 3 days. This is a huge dissapointment and a huge thing for Jessica that everyone is concerned about. We checked double checked and even tripled checked to see if the weight was right and each and every time we rechecked her weight we got the same results withen an ounce or less of eachother. I talked with her pedi more about it and asked him if he thought that it could be from her getting sick all the way to Seattle and he did not think that it would make that large of a difference and the fact that she had feedings after getting sick it makes him believe that the large weight loss is not from her getting sick all morning.

Despite all of this information we did get good news with the lab results that are back so far. No really large changes since her last labs so nothing has gotten worse since her last lab draw. It is not better but the fact that it is not worse is fine by us. It is a relief from the last set of labs which were done and having the changes not for the good. The rest of her lab results should be back on Friday and then we will talk more to her kidney doctors at that time.

Thank you all so very much for your continued support and prayers. Again I say we love you all and may all of you have a very good Christmas and a new year filled with many blessings both big and small.

Hello Everyone,

Well with Christmas just right around the corner things have been really busy here not only just getting ready for the holidays but also with many appointments with Jessica's doctors.

Jessica has been doing really good other than being tired the last few days but at this point it is hard to tell if she is just worn out and tired from all the doctors appointments or if she is coming down with something. Jessica has really enjoyed the Christmas tree and all the lights this year it has been hard to keep all the ornaments on the tree but the last few days have been better but then again we have not been home much for her to try and take everything off.

This last week she has had an appointment with speech therapy on Tuesday to evaluate and help her both with speech and eating, Occupational Therapy on Thursday, an appointment with her pediatrician on Friday for her weekly weight check and synagis shot, and finally also on Friday we had to go to Seattle Children’s to see an ENT doctor to rule out sleep apnea.

Speech/Eating therapy on Tuesday went well and gave me more ideas and things to work on with Jessica to help her to eat she did well but there is much work that needs to be done but with time the speech therapist says that Jessica should be doing good.

Occupational Therapy on Thursday went ok much of the appointment we spent talking about Jessica history and doing an evaluation to see where Jessica is on the standardized testing sheet that they use to evaluate children and what is expected or in the normal range for the childs age group and they give them a score according to what they can or cannot do. We are still awaiting the results but from the words of the therapist that Jessica does have some delays and some areas there are greater delays than in other areas.

Jessica's pediatrician appointment and ENT appointment at Children’s.

At Jessica's pediatrician appointment she was weighed and found to have gained 4 ounces in around 1 or so weeks time. This is really good but Jeremy and I know that the dietician is going to want more weight gain. The goal for her is to gain 1 - 1 1/2 ounces a day. I am just glad that she is gaining.

A long journey to Seattle and back for Jessica's ENT appointment but over all everything went fairly well. We have been able to eliminate one more possibility to Jessica's extreme fatigue and shakiness a few weeks ago but also have to face the reality now more than before that there is a very good chance that it was a seizure. The ENT said that she saw nothing nor did she hear anything that would point to her that Jessica was having sleep apnea spell or that Jessica has sleep apnea now. And to her it did sound more like it was a seizure. UGH not really what we wanted to hear but at least we have ruled out one more possibility even though the alternative is not what we want either.

Again Jessica and the entire family are doing good and we are just getting ready for the upcoming week of yet more appointments and the holidays. This coming week Jessica has labs on Monday for her kidney and to see what her levels are like so we pray that they will be the same if not better than the last set of labs and then Jessica has her EEG and then for the rest of the week until Friday we are going to be able to sit back and enjoy time together as a family despite Jeremy having to work come again on Wednesday. Friday Jessica has her eye appointment to figure out if she is going to have corrective surgery or how they are going to treat her strabismus and other eye conditions that she has.

I want to take another moment and wish everyone a very Merry Christmas filled with very special moments no matter how small or great that they may be. Thank you all so very much for all of your continued support and prayers. We love you all. And from Our House to Yours. Merry Christmas.....

More information in regards to Jessica's Kidney ultrasound and Urology appointment from Tuesday.

I spoke with Jessica's nephrology nurse today and talked with her about the appointments yesterday and she said that her ultrasound report came thru to her in box this morning and not only did her kidney not grow but the cortex or meat of the kidney is thinning out. This is really not good but to her makes since with her latest blood work. The nurse explained in more details to me about if Jessica continues to grow but her kidney does not it will end up as if you were to have an adult that got a kidney transplant but the kidney was from a infant and was too small. The kidney will just simply not be able to do the work load. So as Jessica grows but her kidney does not the more and more work her kidney is going to have and it is just not healthy enough to do the work.

The plan continues to be the same as it was mentioned earlier and then continue to monitor for any changes and to catch them early. Hopefully with this explanation that I got it will help you to better understand as I have many people asking why could Jessica's kidney not do the work.

More later Stephanie

Kidney Ultrasound and Urology Appointment

Well after a long day at Children’s which Jessica was not really that happy about we are home. There is some good news and some bad news. The good news is for now Jessica is infection free in her kidney and we are able to take her off of her antibiotics but the bad news and the news that we were hoping not to hear today is that since her last ultrasound of her kidney there has been no kidney growth. So although she has grown her kidney has not and is not within the normal range yet again and is on the small side. The concerns that the doctors have now is if she continues to grow which she should and her kidney does not grow with her then she will have to have the transplant even sooner than what was first thought. The other concern that her doctor had tonight is that we have to remember that this is the kidney that at the beginning had no function and also has been affected with the same condition of her left kidney which was taken out last July. Although this kidney does not have hydronorphrosis it still has dysplasia. Jessica's urologist said to me today that it would be absolutely devastating for her kidney if Jessica were to get any type of infection especially one in her urinary system. Kidney, bladder ect. Jessica's doctor being very supportive to Jeremy and I looked up to me today and said we need to pray and pray and pray some more. He said don’t give up hope but to continue to have faith. At this point as hard as it is that’s what Jeremy and I have to do is to have trust and faith. We know that no matter what the outcome ends up that she will be ok it is just getting through which ever road we must go down as hard as it may be at times. We also know that Jeremy and I are not alone.

I think it is going to take a few days to digest this new info along with the info that we got last week but in time we will be doing just fine. We know that there is a plan and a purpose and that this is all happening for a reason. There has already been many miracles done in Jessica's life and a miracle already with this kidney and we are not giving up and we are not loosing trust or faith. For having trust and faith and praying is what has got us through to where we are today.

For now we are going to prepare ourselves as much as we can for the future possibilities but not forget about the blessings and miracles that can happen in the mean time. We press on with faith and having trust. As we press on with one foot in front of the other we are thankful for each day and each blessing that we receive...

Thank you all. Stephanie

Part Two

Jessica is doing better with her fatigue issues than she was a couple of weeks ago and acting more like herself which her pediatrician said she looks the best that she has in weeks so he went ahead and gave her some shots to try get her caught up and then he went ahead and gave Jessica her final flu shot in a series of two shots that she needed so needless to say she is not feeling to well again and is kinda cranky but at least we know what is causing it.

Ok I think that is all for know I hope that some of this makes some since and that you can understand at least some of this update . There is just a lot of information we Jeremy and I our trying to understand all of it yet ourselves.

Jessica has many more appointments this month yet from her urologist appointment with another kidney ultrasound this coming Tuesday December 11th, ENT Friday December 21st,EEG Monday December 24th, Opthalmology Friday the 28th all of which are at Childrens Hosptial in Seattle not to mention the weekly weight checks that continue at her pediatricians office here in Olympia.

I will do my best in the next couple of weeks to post more pictures and updates as time allows.

Thank you again for all of your thoughts and prayers. Stephanie

Part One

I am not sure where all to start about Jessica’s appointment on Tuesday with her nephrology doctor and care team. On Tuesday we met with her head nephrology doctor, the nurse practitioner , nephrology fellow, social workers, and the dietician. A lot of the appointment we spent discussing Jessica’s current kidney status and what the next steps in her care are going to be. As of right now the doctors are all in agreement that Jessica is in stage 3 going into stage 4 renal failure with about 30-35% kidney function left. This is a big change from where her kidney function was just a couple of months ago when she had about 60% left. When there is 20% function left is when dialysis or transplant is needed. Jessica’s doctors explained to me that at this stage in renal failure that the best things that we can do at this time are to keep her kidney as happy and healthy as possible and get Jessica bigger and stronger so she will be a better candidate for a transplant if one is needed. The doctors explained to me that Jessica will without a doubt have to have a kidney transplant unless there is a major miracle that happens and it improves her kidney function drastically. I still am believing for and in miracles as we know the can and do happen. As for when Jessica will need a transplant all depends on her system and how her kidney wants to work for her. It could be just a matter of months or it could be years but the doctors best guess is it will happen in approximately 2 years if there are no complications such as infections ect. in the time being.

As far a dialysis and what kind of transplant whether live or deceased donor is all what we are going to be getting information on and talking with social workers about. Jessica’s doctors feel that it would be in her best interest for us to find a living donor and for her not to have to go on dialysis do to allowing us to plan more for the transplant, her cardiac history and they are also discovering that children have a better success rate for transplants if it is received from a living donor than that of a deceased donor. Jessica’s doctors also stated that she will have to have dialysis if we can not find a living donor or if her kidney function progresses and we have to wait for a transplant. As of right now there are not going to be any changes in her medications other than starting her on growth hormone injections .

We also met with her physical therapist last Thursday and she stated to me that there very well could be some nerve issues going on that is causing all of her shakiness and weakness and this could also be a part of why she is not reaching the normal milestones that other her children her age reach. Her physical therapist also said that she does not believe it is all muscle related. In a conversation with her pediatrician about her physical therapy appointment we discussed what she had to say and he also agrees and is concerned about this and hopes that she can get into the neurologist sooner than he appointment that is scheduled for in February. Jessica does have a EEG scheduled for December 24th but our pediatrician reminded us that not everything shows up on an EEG test so even if that test comes back ok then we still have to wait till we still the neurologist to really be assured that there is nothing going on. In the time that passes from this point on if Jessica gets really tired and not acting like herself again or has another episode of the shakiness and stiffening like in a seizure then her pediatrician is going to call the neurologist himself and see if he can get her in sooner.

Just a quick note, I had not recieved a call from Jessica's doctor with her potassium level from her blood work done earlier in the day so I called the on call doctor to find out what was going on and what her level was which he did not know because he did not have a report from the lab so he called me back after talking with the lab and I am happy to announce that although it is still on the high side it is back withen the normal limits. It is such a relief to get a good phone call about her labs.

Jessica so far is having a good day so I think that before the snow comes (if we get any) we are going to go out with the family and get our Christmas tree. Take care everyone and have a wonderful weekend.

Hi

Well it has been a few days that have past since my last post and really there is not to much to report. Jessica is doing a little bit better as far as her tiredness and energy which is awesome. But still continues with her diarreah and once in a while vommiting her feeds. We recieved a call from her nephrology nurse last night and she stated instead of seeing just her in clinic this coming Tuesday Dec 4th that we would be meeting with her and Jessica's Nephrology doctor which is the head of the nephrology department she thought that with everything that has been going on with Jessica that it is needed that we sit down and talk more about the next steps in her care and what the possible new plan may be. I am nervious about this appointment for many reasons. We have been wanting to sit down and talk with her doctors more but when they are saying that we need to talk about her next steps in her care that is not reasurring to me. But I also understand that it is needed especially with her rising and unresolved issues with her constantly high and rising potassium level. Now another thing that we have to watch is her CO2 level which should be lower because her potassium is high. So again we are in the fog with that.
Jessica had physical therapy today and that went well. Not really anything to report there other than the physical therapist would like for us to discuss with her doctors about her shakiness when she is standing and rule out any nerve condition that may be contributing to it.

More labs are to be drawn tomorrow and then again on Tuesday at the appointment but other than that not much else is going on. Little Jessica is about ready for bed so I better go. Thanks so much for all of your thoughts are prayers it means more than you know.

Hi All,

I sit here and type this from home. We were able to keep Jessica out of the hospital despite everything that is going on but the doctors are still concerned about the ongoing diarrhea so we had to take some stool samples into the lab today for testing and then we also have to have frequent labs done to monitor her kidney function and also her potassium which is once again out of limits and on the rise. We have made dietary changes that the on call doctors made this weekend and things were better for about 2 days with no stooling but Jessica was back to having her diarrhea again today. We are hoping to have some answers as to what is causing all of this but the doctors remind us that we may never know. Easy for them to say but even though we know they are concerned Jeremy and I are concerned and confused and we are worried for Jessica's well being.

Jessica got her first synagis shot for the season and seems to have a little congestion and cough tonight whether this is related to the shot or not who knows. But otherwise she seems to be doing good. Tired as she has been but is on the floor playing with her brother and sister right know and having fun. It is wonderful to see them all interact with each other.

As things come up or we here anything from her doctors I will post another update but for the moment not much else to post tonight.
Take Care and thank you for all your continued support. Stephanie

Happy Thanksgiving Everyone,

As I sit here and type this update tonight I think of how far things have come with Jessica over this last year and how thankful that we are and even though there is so much going on right now Jessica is far better off this Thanksgiving than last. That in itself is amazing...

Also as I type this update tonight I ask for prayer for Jessica. Today she has had a really rough day and has been pretty sick and as her doctor said she has one foot in the hospital door and one foot on the outside. And we need to try and keep her out of the hospital. If things get any worse there is no doubt that she will be admitted and if things are not any better by Friday there is a good chance that she will be admitted to run some tests. So things as of right now are not looking to good. The doctors are not sure if Jessica is having a reaction to her food which is causing the diahrea and vommiting or if it is a stomach bug but no matter what the reason we have got to get it to stop and get her back to doing good and being stable again.

On another note. I have spent much of the day on the phone with doctors and found out that she will be having an EEG (brain wave study) done on December 24th. And then a follow up with the Neuro doctor sometime in February ( that is the earliest appointment) unless there is a significant problem that shows up on the test. As far as the appointment with the ear nose and throat doctor and the pulmonologist we are still waiting for them to call us back. The waiting game continues there. More than likely we will get the appointments made next week once everyone is back from the Thanksgiving Holiday.

Not much more to report tonight. Again Happy Thanksgiving to all of you.