Things are looking better today. Claire's liver numbers went down! Still not normal, but down is good! She feels fabulous and is just as active as a two year old should be. She's still enjoying the exploration of food. Today she ate jello for the first time and did great with it! It's such a great thing because you don't have to chew if you don't want to (or don't know how to in her case) but it's a different texture for her to explore and the taste was yummy!!

Yesterday she did the craziest thing: she drank 80 mls of her formula that we normally put through her G-tube ONE ML at a time through a syringe!!! That is amazing to us!! I was giving Benson someTylenol for his fever in a syringe and he squirted it in his mouth to get it down. She saw that and wanted some medicine to do the same with. I gave her water and she did just as Benson had done. She asked for more and so I asked her if she'd like to try her milk I had out ready to put down her tube. She said yes, not knowing any different, and she liked it!!! So 80 times I filled up that 1 mlsyringe and she drank it one squirt at a time! To top it off, she did the exact same thing the next hour when it was time to feed her again. Wow. Amazing! I certainly don't expect her to do it all the time nor would I have time to sit there every hour and give her 1 ml of milk at a time....thankfully it was Sunday and we had all day to fill up syringes with milk! But it's a great start!! At least now she knows the taste, likes the taste, and realizes milk can go through the mouth and not just the tube!! We were thrilled.

Benson is doing much better today. He hasn't had a fever at all today but still has a cough and runny nose. He and I sound exactly the same with our coughs. Hopefully we'll get over those soon too! Looking forward to a more relaxing week at home!
 

story time

Claire was sooooooooo happy today!!  Her personality is really blossoming right now....she's full of it!!  She is really in to telling stories lately.  (I'm going to try to get one of them on camera because it is hilarious!)  More than once today Benson, Jared, and I were just listening to her tell a story and laughing our heads off!!  She smiles, laughs, jabbers on and on and on....and loves being the center of our attention!! 

Benson hasn't been feeling well today.  He seemed okay first thing this morning but this afternoon he got a fever and has just been miserable.  He also has a cough and stuffy nose and simply feels crummy.  No fun to have sick little ones.  Thankfully Claire hasn't seemed to catch whatever it is Benson and I have.

Claire ate another piece of an Oreo, bites of a Red Vine...in the mouth and then spit out, 2 bites of pureed peas, oatmeal a.k.a. rice cereal, almost half of my strawberry yogurt, and air puffs in milk.  It is seriously so fun to see her so interested in food all the sudden!!  The doctors have decreased her prednisolone dose back to her low-dose-regular amount so I wonder if the food interest will drop as well.....at least that's when we saw the sudden increased interest with food was with the increase of that medicine.  We'll see what happens but we will keep encouraging the eating!!!

I love ping pong.  I won't tell you how many games I won tonight against Jared cuz I don't want to make him feel bad, but I really like that game!!  Makes me happy!

Eleven hours late and we're home. Home!

Things went really well today. Claire and I checked in just after 7:00 am and the liver biopsy took place close to noon. Waking up from the anesthesia is never a pleasant experience...but give her an hour and she's right back to her normal, playful self. Claire just brightens everyone's day where ever she goes!

The results came back good. She isn't rejecting the liver and I believe the word they used to describe her biopsy results was pristine. The only thing that may be causing some problems has something to do with the bile. Bile seems to be flowing fine through the liver without any obstructions but there may be some resistance causing some bile to be pushed back up into the liver. So they want to start her on a medicine that basically thins out the bile so that it will flow easier through the liver/bile duct and not come back up. ((((this issooooo not a very good technical/medical explanation but it's our best shot at interpreting!)))) They're not 100% sure this is the problem causing her elevated liver numbers, but there was something in the biopsy that suggested it could be an issue. SO the story continues: we'll keep watching, testing, waiting, and hoping those numbers get back down! Whatever the problem is is very subtle.....which hopefully also means it's not something to be too concerned about because we've ruled out A LOT of worse things that it could have been. They've also said that sometimes, kids liver numbers just do bounce around for reasons that are not known....and then eventually settle back down. It could just be the body/immunes system's way of saying, "wow...there' s something different going on here. Let me check this out for a bit and then we'll let her do her thing!" Who KNOWS?!?!!!! :) If the liver numbers do get more elevated over the next few weeks, they will look into doing more extensive/invasive testing. Let's hope we don't have to go there.

Still smiling. With a headache. and a stuffy nose.....

But the best part is that Claire isn't ill or miserable with whatever is going on. She thought (for the most part) it was just a fun play-day at the hospital; a day to visit many familiar faces and make people smile and laugh at her! So she's great! And the one word I heard people use to describe her today was intelligent. She knows a lot. Especially about medical stuff. One example. When someone walks through her door in a maroon colored outfit, she says "it's blood work time," and shows them where her catheter is to draw the blood from.

On the way home from the hospital Benson said it was a really good thing Claire was able to come home from the hospital tonight because he needed someone to play with....although he himself was quite tired, verging on miserable, and didn't seem to be feeling 100% well himself. We put him to bed right when we got home at 6:30 and we'll see what the night and day brings for him.

Happy to be home. And to have the rest of the weekend off!
 

She was truly hungry today as she had to be fasting for the biopsy.  She drank ALL of the cheerio milk and ate one or two of theO's!!  I love it!  One of the best sight's we've seen.

The scan this morning went pretty good. At first we were going to try to do it without any anesthesia but she was quite nervous simply being in the strange room, with a strange machine, and white-coated strangers! After I saw how the test had to be administered, I decided we better do some anesthesia to make it a pleasant experience for both of us. I don't think she could have done it without. But the nice thing was that they didn't put her completely under...they just sedated her enough to help her lay still, not be afraid, and relax. They thought she might go to sleep, but it takes a lot of "goods" to make Claire go to sleep and she wasn't even close. But she was comfortable enough to get the scan done and go home soon afterward!

She had to lay completely still for ONE HOUR with only about an inch between her and the machine. You can tell from her eyes that she's definitely not all the way there. It was nice that I could still hold her hand, sing her songs, and stroke her hair to help keep her comfortable.

So the results. The doctor called this afternoon and said the good news is that there isn't an obstruction within the liver...the plumbing/connections seem to be working properly. But it did show there was some inflammation/irritation in the liver cells. I believe they already expected that to be true because of the elevated liver numbers that she's had for a while now.

SO tomorrow morning, bright and early, Clarie will have another liver biopsy. The doctor still doesn't think she's rejecting the liver, but we have to check again in case....and it will help us know if she does have some random virus that is irritating/inflaming the liver. Hopefully it will shed some light as to what's going on. And the increased prednisolone dose we started giving her last weekend that often times helps the liver numbers come down didn't seem to help at all. In fact, most of the numbers went even higher from today since last week. We'll see what the biopsy shows and then the doctor expects he will wean her back down to her normal/much smaller dose. That will be nice.

Good eats for the day: a roll (stuffed in the mouth...hold it in for a few...spit it out), corn (in the mouth...spit it out), tomato soup watered down with milk (milked down with milk?), cracker dipped in the soup, and an Oreo dunked in milk with bite of it purposefully swallowed! She's figuring out the good stuff pretty quick! She's loving putting things into her mouth but isn't quite sure what to do with most of it once it gets there. We're just happy to have it hit the mouth finally!

                                                           She loves syringes.

I love home days!  Today we were all about the library, suckers, and ice cream!  Great combination.  Claire is having so much fun eating!  She stuffed her mouth with shredded cheese at dinner and spit most of it out (probably because there was way too much in there).....and love the vanilla ice cream for dessert.  As we paid our $2 for parking at the library (what?!) the parking attendant gave us 2 dum dums .  Gee, thanks.  Usually Claire licks a sucker a few times....takes it in and out of her mouth...and then says all done.  But today she ate it almost to the stick!  What a girl!!  How lucky she is to have the bestest biggest brother right beside her to model the way.

Tomorrow will be the big morning at the hospital.  Labs at 8:00 then the scan of the liver at 9:00.  I'm not sure how soon we will know any results from it. 

Claire felt great today.  One good side effect of the higher dose of prednisolone is an increased appetite!!  Claire has actually said the words, "I'm hungry" numerous times today and maybe even meant it!  She ate a bowl of cheerios, which consisted of putting the cheerios in her mouth, letting them dissolve, spitting most of them out, and maybe swallowing one or two.  But at least they got to the mouth!  She also drank the milk from the cereal bowel!  And she ate a bowl of oatmeal; which is really rice cereal but she likes to think she's eating big-girl food and not baby food.  So it's oatmeal as far as our house is concerned.  And she actually opened up big for each bite and purposefully swallowed it!  All of it!  She loved the airplane, choo choo train, and race car games we played with getting the food to her mouth. It's like having a 6-month old all over again!  I love it!  She sucked on a teddy graham that Benson gave her in the car.  It got soft in her mouth and she asked me to get it out of her mouth, but 99% of it was already gone by the time I put my hand out for her to spit the rest of it into.  We're definitely going to take advantage of the increased appetite she's been having and get as much eating therapy in as we can! 

And she's actually been sleeping a lot better than we expected too.  When she gets wild though, she's more wild than usual and not as easy to reason with.  But really, the side effects haven't been as extreme as we were expecting.  I can tell she's just not quite herself in some aspects, so it will still be nice to get back down to the lower dose.  But for now, we're handling things just fine!

As for labs, things are a little better for the liver.  Not a significant difference, but down a little.  She will have a biliary tract scan on Wednesday morning and it is expected she will have to be put to sleep for that.  I'm not exactly sure how it works but they said she would have to be very still for possibly up to an hour....and that's asking a lot of a little one.  Even a good little one like Claire.  Based on the results of that, we'll see where to go next.  But at least she is still feeling well.  Now if I could just feel a bit better and have this cold gone!! 

Clarie's labs from today are basically the same as what they were yesterday.  Her liver numbers are the same.   As Claire and Benson would say when they're disappointed, "OH MANNY!"  I've seen a bit of a change in Claire's actions/attitudes/emotions with her being on a higher dose of prednisolone so I'm glad (and hoping it will be true) that this will be a temporary adjustment.  Hoping she has an okay nights sleep. 

I'm just praying they will be able to find out what's wrong so they can treat it properly....and hoping the treatment won't be anything too invasive or major!!  I just want her to have as much of a "normal" 2-year old life that she can! 

She has felt good today and is a happy girl.  But I have been reminded that Claire is one tough girl, and has a really high pain tolerance.  Sometimes when she even is in pain, she doesn't show it.  Like when she broke her leg last October.  She cried at first and then acted like nothing was wrong (except that she wouldn't walk).  With a broken tibia and fibula, she was singing songs on the way to the hospital.  She's just tough.  So at least from what we can tell, she feels good.  Hopefully she really does!

Claire has had a rough time sleeping lately!!  She was so tired this morning (and all day for that matter) because she's been waking up often through the night.  And when she does wake up, she acts very unusual.  She asks for random things...like her blanket turned the other way, her night light on (which is already on), both her blankets pulled up closer to her chin, or to turn her body the other way.  It's really random because she's never done this before.  She's always been a really good sleeper until these past few weeks.  Since the transplant, she's had a harder time sleeping, but this past week has been worse than usual.  I can't decide if it's just a 2-year old phase she's going through or if it is related to the medicines she takes.  I know one of the medicines she's on,prednisolone , can cause sleep disruption and I'm really thinking that is contributing to the problem.  She's just never been like this before and it almost doesn't even seem like she's acting like herself when she gets agitated and irrational at night time.  BUT it's only at night time this happens.  During the day she's still completely herself....very calm, understanding, patient, and rational.  So it's just crazy to see the difference at night time.  I really think it has to be at least somewhat (and maybe even mostly) a medicinal side effect. 

hum.

I feel bad for her.

Other than that, things are going well.  Labs from today look good and besides the fact that she was really tired today, she had a good day!  She was still very playful when she finally "woke up" enough to enjoy the day and loved helping me wash the dishes and splash in the sink.  She slept in the car on the way to the hospital both times today, which is a first for her.  And the drive is only 7 minutes....so that shows how tired she's was.  She's already off to a rough start tonight in bed.  Hopefully it gets better?!?.  For her sake.

This picture says a lot: Claire is feeling, acting, looking, and playing A LOT better!! She had a great day today and seems to be back on the right track. Her labs look good for the most part; a few minor medication changes and additions, but overall, she's great! We've almost got her back up to the volume of food she needs to be getting and she's tolerating it fine.  I think last week was just all around a crazy week with random things that occurred with no explanation.  Hopefully whatever it was has come and gone and won't be back soon!

More labs and doctor visits on Wednesday and Friday this week. 

Claire loves to take my blood pressure while we wait for the doctor to come in.  It's pay-back time for me as she says over and over to me, "Just one more time, mommy.  One more time!"  She loves to write down the numbers in her record book.  Nursing school has come a bit early for this little one.  She's going to have it all figured out before long!

Claire had a pretty good day today.   Her morning wasn't quite as good as the afternoon turned out to be, but a great day none the less!  We love Sundays.  It's so great to put many of the weekly worries out of our mind and enjoy the day together as a family!  

I don't know what to think of Claire!  Today was much much better than yesterday.  Not completely well, but much better.  We're kind of thinking she's been having a hard time digesting her food the past few days.  So today we fed her a little bit differently--we gave her all her milk during the day and all thepedialyte during the night.  She definitely slept much better last night but we also decreased the amount we've given her temporarily and will have to get back up to her normal amount again.  We're going to meet with the dietitian on Wednesday to see if she has any suggestions.  I think some of the problem is that her tummy/gut NEVER gets a break!  She's fed every hour, 24 hours a day.  And A LOT every hour too.  She has to be on a high fluid diet to help keep the kidney clean as it continues to clear the oxalate from her body.  It just seems like her tummy is finally saying enough is enough....give me a little break!! 

We'll have to see what ideas the doctors and dietitian have next week.  But she's been feeling and acting better today so we'll take it! 

We took Benson and Claire to the movies today.  They have free movies Saturday morning at one of the theaters here and Benson was (again) bouncing up and down with excitement!  They both had so much fun and were thrilled to see a movie on the big screen!

Jared got me the best birthday present.  It starts with a Ping and ends with a Pong!!  We've played every night since we've been home from the hospital and I LOVE IT!!  There aren't very many sports I can beat Jared in.  In fact there's probably only one and it's ping pong!  It's so fun!!  We're loving it!  We gotta have a ping pong tournament with some friends sometime soon.  Any takers?!? 

Well, the Princess isn't still 100% normal.  She just didn't feel quite well today.  I'm not convinced that there's nothing going on even if we can't pinpoint exactly what it is.  There are tonz of viruses out there...she doesn't have any of the common ones they test for....but that doesn't mean she doesn't have some other one.  I don't know what it is but I just know that she's just not herself yet. 

The weird thing is that she can be distracted enough (mainly via Benson) to forget about how she feels and act somewhat normal.  But you can just tell that even when she's busy, she's just doesn't feel all that great.  Today she didn't tolerate her tube feedings well at all.  I think she "threw up" every single time we fed her.  I don't know what's going on.  Her temperature has been higher than her usual, but still not high enough to be a fever.

We're going in tomorrow morning for more labs because the lab didn't draw all the labs they were supposed to this morning.  We'll also see the doctor there tomorrow so we'll see what she has to say.  She's tired tonight, even after a 3 hour nap, and will hopefully sleep well.

Other than that, Jared and I have enjoyed being home with the kids.  We haven't wanted to do anything today...just enjoy being home!!  

We're HOME!!

and exhausted.

Claire didn't have the greatest night last night.  She ended up needing a blood transfusion at 3:00 a.m.  Her hemoglobin was 7.6 which is quite low.  They've just been draining this little one of blood over the past 5 days and she just didn't have enough time to catch up and make more red blood cells on her own.  So they gave her 120cc's of blood and I could tell a difference in her even as the blood was going in.  She was breathing with less effort, her respiratory rate came down, and her heart rate came down too.  She needed the blood and I'm glad she received it.  I'm so grateful for that person who gave the b+ blood she received.  It had to have come from someone who took an hour out of their day and gave their blood so another life could be blessed.  Giving blood saves lives!!   

She had a good morning and the doctors gave her the good-to-go pass after seeing her.  It is somewhat of a dissatisfying release because no one still has an explanation of what caused these random events for Claire...but everything checks out to be normal and she's acting/looking good....so that's what counts!

We'll keep a close eye on things (not like we don't do that anyway) and continue to hope those liver numbers come down on their own soon.  The liver biopsy was normal and didn't show signs of rejection.  We'll go in for labs in the morning and then see the doctor again tomorrow afternoon. 

Claire and I took  a little nap when we got home this afternoon.  She's still out and will most likely sleep through the night.  I'm sure she has a lot of catching up to do in the sleep dept and will enjoy being in her own bed tonight with minimal interruptions (diaper changes!)

Benson was perhaps happiest of all to have us all home together again.  It really throws his routine off when Claire and Jared or I are at the hospital day and night.  He was excited to simply get in his car seat and have his best friend to ride in the back with him!  "Claire Claire Claire....you get to come home!!"  He was jumping up and down when we got home and wanted to play with just about anything Claire would say yes to!  Had to make up for lost time!!  The sweetest big brother ever in our book. 

Claire had a much better day today. I suppose that's why I've been so busy! She's been busy!! She didn't have such a great night last night, but we're not sure if that was because she didn't feel good or just because she's in the hospital. Sleeping is not easy in the hospital, day or night. But she was happy most of the day today. She had her liver biopsy this morning and everything was essentially normal. No worries there....not sure why the liver numbers are still high, but since we can't find anything wrong, we'll just have to assume that they will eventually come down to normal on their own. She had a rough time waking up from the biopsy anesthesia, but waking up from that stuff is never fun. At least this time it didn't take too long before it got out of her system and she was back to herself again.

Otherwise, things look good. She's been urinating on her own without any problems but they really want to make sure she goes every 2 hours as to avoid her holding it in for long periods of time. We are still not sure why she was holding it back but the CT scan didn't show anything abnormal with her abdomen (bladder, kidney, liver, etc.)....no stones or blockage. 
All her blood cultures have come back negative so they are stopping her antibiotics.  Again, everything has checked out to be normal.....and she is feeling better.....so what ever it was is hopefully gone and won't return!

She hasn't had any other fevers today and if she has a good night and morning, she will hopefully be able to be discharged from the hospital tomorrow and we can all go home!! Benson boy loves it here. Movies. Toys. Snacks. Happy Meals. Claire.

My turn to sleep at with the Princess at the hospital. Hopefully it's a good one. She's already out like a light since she didn't have a nap today, so I'm hoping she's down for the night...at least until someone comes in to do a blood pressure, take a temp, or listen to her lungs and heart. Gotta love it. Oh and today they took out the peripheral IV they had put in her right hand the first night we got here. Good thing we NEVER used it ONCE. Good thing we distressed the sweetest one and poked her twice to get it in! At least her hand is finally free again!!

\

What a rough day for the princess. She just hasn't felt 100% well today. Well, I guess I can take that back....when Benson and Jared came around 11:30 she perked up, played with Benson in her room and was quite joyful. But other than that, it's been a rough one!

She hasn't had any other fevers today and it doesn't seem, from all the blood cultures they've taken, that she does have an infection. She sure seems to have a few of the symptoms of one, but so far, things are still negative. So what is it then?

They put a foli catheter in to collect her urine because this morning, she was holding her urine in and they didn't want her to be doing that because of possible harm it can cause to the kidney. She hated it. Now she can't walk around and it is very uncomfortable. But they want her urine to be completely drained until we can figure out what's going on. She also had a CT scan today. She really really hated that. Scary for a little one to be strapped to a bed and slid into a big round doughnut type thing and not know what's going to happen!! Worst part about it was she had to do it 3 different times! By the third time she was slightly more relaxed but it was still very traumatic for her. They're hoping the CT scan of her abdomen will help us get some more answers as to why she's holding her urine in...and just to double check that things are good with the kidney and liver. After she was finally done with the CT scan, all she could say was, "no more circle....NO MORE CIRCLE?!!!"

The bladder ultrasound they did earlier today looked good with no concerns of stones. Her liver numbers are slightly lower today than they were yesterday; still not normal, but down. They are still planning on doing the liver biopsy in the morning to confirm that things are well with the liver. And kidney function still looks good. Her blood level was done quite a bit today, mostly because of all the blood they've been taking from her these past 3 days, but hopefully it should get back up on it's own when they stop drawing so much blood.

It hasn't been an easy day for Claire and she's resting again now. Hopefully she'll have a better night than last night and the CT scan will help them figure out what's going on.

Another night in the hospital on it's way.  Jared is taking his turn to spend the night with Claire and I get to hopefully get a good night's rest at home with Benson. 

Claire can be completely normal, happy, and lively one hour and then miserable, breathing fast, and uncomfortable the next! And we still can't figure out why?!?

Her night started out great last night. She was happy and feeling great before bed and then since about 1:30 am she's been moaning and miserable. She did get another fever last night and didn't sleep well at all. She was supposed to have her liver biopsy this morning, but because how how terrible she's been feeling this morning, they postponed it till tomorrow. She just wasn't stable enough for the anesthesia and the biopsy wasn't urgent either. She fell asleep again just now and hopefully will feel at least a little better when she wakes. But something is still going on...and we're not entirely sure what it is yet. The did a chest x-ray this morning and will also do an ultrasound of her bladder. She hasn't urinated since 7:30 am. Crazy. They are also going to draw more blood cultures.

This has to be short cuz I'm staying with the princess tonight in the hospital and trying to get her to bed. Right now she's saying, "Everybody play babies. Raise your hand to play babies."

So she's obviously feeling better. She did get a fever this afternoon, but it has come down with Tylenol. Still on the antibiotics and will have the liver biopsy in the morning at 9:30 am. Liver and kidney ultrasounds look good. Still don't know why she was holding back her urine, but she's done fine throughout the day. Hoping for another good night and an even better day tomorrow!

Things are looking better this morning. She had a much better night than any of us expected. She was exhausted so she slept as good as anyone can in a hospital. She did start going potty by herself again, after a few close calls and "threats" of a catheter....but she's done it. It still is very curious to ALL of us why she would be holding her pee in. She's never done that before and there's got to be a reason for it....some kind of discomfort or something! (((Unless she's just ready to potty train....but we haven't been working on it at all and I don't know why out of the blue, one day she would just start doing that...weird. And still when it's uncomfortable enough, she should just let it go regardless!))) Still investigating.

Her liver numbers actually were better this morning than they were last night (crazy how quickly they can fluxuate) but they do still want to do a liver biopsy either tonight or tomorrow. They will also do an ultrasound of both the kidney and liver to see if that shines any light as to what's going on.

She's had 3 doses of vanco (the antibiotic) and is feeling much MUCH better. So far her blood cultures are still negative, but they will keep her inpatient in the hospital for 48 hours after the blood culture was drawn to see if they come back positive during that time.

She finally wanted to stand up and walk around just about an hour ago and is acting much more like herself again.

Still some questions to be answered and tests to be done, but we are feeling much more positive about how things are going. Thanks for the prayers and good wishes!!

Crazy coincidence: Gifty was admitted to the hospital last night because of a high fever and elevated liver numbers. Lots of unanswered questions from her end as well. ((Gifty is the little girl, just a few months older than Claire, who received the other half of the liver that Claire has.))

Well, this was supposed to be a Happy Birthday to ME post...and it was kind of that...with an unexpected twist to it.

Claire is in the hospital tonight.  Since about 3:00 a.m. this morning, Claire has not been acting normal.  She hardly slept a wink after 3:00 and when she got up was even more miserable.  She just wasn't acting normal.  She wouldn't stand, walk, and was not interested at ALL in playing with anyone.  Sure she was tired, but there still seemed to be something else wrong.  We put her down for a morning nap and decided that if she didn't go to sleep, we'd take her to the Emergency Dept.  She fell asleep just fine for a nap and actually slept for a little over an hour.  But when she woke up again, she still wouldn't walk or stand and seemed to be in some abdominal pain.  So Jared and I decided she needed to be seen by a doctor.  Claire decided that too.  Benson told her he was going to Church with Grandpa and Grandma and asked her if she wanted to go.  Claire's exact response, "No.  I go to hospital.  I wanna see doctor."  I'm not kidding.  This girl is WISE beyond her years insooooo many respects.  She knew she wasn't doing well.  She knew where she needed to go.

We took her to the emergency dept and told them that she hadn't urinated since 9:00 that morning.  Her diaper was still dry and it was just after 1:00.  They drew some labs and then had someone come in to scan her bladder to see how much urine was in there.  Her tummy was tight and distended (big/puffy).  She wassoooooooo not comfortable.  They put an in/out catheter in and drained almost 400 cc's of fluid from her little bladder!  That is sooooo much!  Why was she holding it in??  ((that question is still unanswered.))  She also hasn't pooped all day.  Not sure why that is either.  Getting that urine out of her relieved some of her discomfort but certainly not all.  Something is still up. 

She has only had a very low grade fever, not really even considered a fever as far as I know, but as the day progressed, Jared and I began to think that she may have an infection in her dialysis catheter.  They drew blood cultures on that to see if she does, but we won't know much about those for about 24 hours.  They have given her two different antibiotics to hopefully cover any possible infection. 

But if it is an infection in her dialysis catheter (which is still in her only to draw blood work off from....so she doesn't have to get poked twice a week) why is Claire holding her urine in and not pooping????  She still isn't urinating normally as tonight....it just seems like something else is wrong too??.

Kidney function still looks good.  Liver numbers are still elevated...quite a bit.

Oh princess.

She is such tough girl.  Of course I know this, but I was amazed again tonight as I watched all she went through.  Watching them put an peripheral IV in her little hand was a nightmare tonight.  She is NOT an easy STICK....and it took them twice to get it.....but I was in SHOCK at how still Claire was while she screamed in pain and sweat in agony!!!  They couldn't even get the tape to stick, she was sweating so bad.  It was awful.  I hate having IV's put in her.  That one better work...for as long as they need it!!

Hoping for somewhat of a quiet night.  She's comfortable and exhausted.  If she doesn't start urinating more and getting it all out on her own, they will put a permanent catheter in to drain her urine out till they figure out what's going on.

Not quite the valentines/birthday I was expecting, but not sad about it for myself....but for having to watch my sweetest little one have to be in such pain and discomfort today.  I hope it ends soon and we can get some solutions.

What a day!!  Glad it's over.  Hopefully we won't have another one like that any time soon. At least my Dad was here and helped me out with both kids all day long.  It was nuts!!  We barley had time to eat our PBJ's!

Clarie's liver labs from today went even higher today than what they had been on Monday.  Weird!!  The liver doct was going to have Claire do another biopsy of the liver this week, but was convinced by some other docts to wait till Monday and see how the labs look then.  If the liver numbers are lower on Monday, Claire won't have to have a biopsy on Tuesday.  But she's scheduled and on the books for a biopsy on Tuesday if things don't look better.  So far, they're still thinking the liver number increase is probably connected to thebactrim allergy but then why did the numbers go higher today if the rash/itchiness is getting better?!?!  Who knows.  Hopefully, prayerfully, the numbers will be better/lower on Monday.  Claire's kidney function still looks fabulous! 

Claire's blood clot looked pretty good.  It had gotten just slightly worse from the ultrasound three weeks ago, but it wasn't significant enough to need to put her back on thelovenox injections.  YEAH!  So Claire will keep taking half a baby aspirin twice a week (much easier than shots, twice daily!) and we don't have to check on it again for 6 more months!  The doctor was very comfortable with how things looked and feels things will work out on their own just fine. 

Benson's labs and ultrasound went great.  He did sooooo good!!  Didn't even cry during the blood poke (thanks to Emla (numbing) creme!  Usually the anticipation of it all gets to him, but I suppose he's getting used to it and was calm as ever today!!)

Overall, things went well!  Glad to be home, have our exhausted kids in bed, and in my pj's!  Claire kept asking if she could go night night all afternoon.  Sweet princess.  Even happier that we don't have to go anywhere or do anything tomorrow! 

Today we hopefully got the start of an answer to Claire's rash/liver numbers.

The infectious disease doctor thinks that Claire is indeed allergic to one of the medicines.  Bactirm is the antibiotic we stopped giving Claire about almost two weeks ago and she thinks that's most likely the one she's allergic to.  The good thing is that the rash/itching is pretty much gone.  Monday we started to see signs of improvement and since then, she's been getting better and better!  They say it usually takes one to two weeks after stopping a medicine to improvements from an allergic reaction, so that would be just about right!  Now all that's left on Claire's body are the scratch marks/scars from the past two weeks.  But those will heal up soon enough.  The doctor today also said that an allergic drug reaction can also cause a change in liver function.  SO let's hope that is the case for Claire and let's also hope that now that the rash/itching is over, the liver functiongets normal again!  Patience will have to be part of that "hoping," but we meeting with the liver team tomorrow also, so we'll see what they have to say!  It was good to get some answers today and even better to see Claire feeling so much better! 

Tomorrow will be a busy day at the hospital:

8:00 Claire's labs
9:00 Apt with liver transplant nurse
10:00 Follow-up ultrasound of Claire's blood clot
11:00 Ultrasound for Benson of his kidneys (in preparation for beginning the research study he's going to be involved in.)
12:00 Labs for Benson, also to get baseline values for the study
1:00 Apt. with kidney doctor
2:00 Apt. with liver doctor
3:00 Apt. with hematologist to discuss results from blood clot ultrasound
4:00 come home and crash!!

Claire's liver labs from yesterday are still quite high.  They had been coming down the past few times we've tested them, but now they are hanging a bit high.  Ugh!!  We've got to figure out what's wrong!  And the rash is not better, but definitely not worse.  She hasn't been incredibly itchy the past two days but we are going in tomorrow to see the Infections Disease team as well as the Dermatologist.  We'll get both their opinions about the rash/itchiness and hopefully come up with some kind of a solution from there.  We did stop one other of hermeds on Friday night and since then, things have been improving.  So I'm wondering if it was an allergic reaction to that.  Who knows.

I'm not sure what's going to be done about investigating the liver issue yet.  I talked with them yesterday and they were going to get back with me.  We've just kind of been expecting the numbers to come down to normal on their own, but this last test didn't show the improvement we were hoping for. 

Claire still feels well.  No fever, lots of energy, and happy!  So that's a bonus.  But if something internally is not right we gotta figure out what it is! 

We are having fun with family and a nice snow storm these past few days!  Gotta love it.

Claire is quite miserable with the rash. I tried to give her a bath today and it was terrible! She's okay with the itching until she's getting a bath, changing her diaper, or in her crib. Then she drives herself crazy itching! She has drawn blood from scratching so much on her back/bottom, her legs, and arms. SO NOT FUN! We stopped one of her other meds that may be causing this on Friday to see if that helps. It's still too early to tell, so we'll see as the week goes on if things get better. I'm not sure what it is!! But we have got to get it solved soon. She's a mess! BUT when she is happy, entertained, and busy playing, she forgets all about it and carries on without a thought of itching. That's a bonus. It's the night time / nap time that's the worst. Her sleep has certainly struggled these past few weeks with all this going on. Cortisone cream helps as does benadryl at night time. And that's about where we're at with that!!

Liver numbers are still high, but headed in the right direction. She'll have labs and a dr. appt. tomorrow to see how things look.

My dad and step-mom are out her for the week so we are all loving the company again! I love having a break when our family comes and Jared and I even got to go out on Saturday night! We're totally going to take advantage of the babysitters while they're here!

Things are better, but still not better.

Claire's liver numbers are still coming down, but not normal yet.  Her rash is still hanging around and I don't know if she just forgets then remembers about it....but that come and go thing even throughout the day is still part of it.  Whenever she's getting her diaper changed or getting dressed in the morning or ready for bed at night, she gets really bothered by the itching and demands lotion.  And how she loves to be rubbed down with lotion!  She soaks it right up and always asks for "little bit more" upon completion!  Her bath tonight was short lived.  She usually loves playing in the small amount of water she's allowed to sit in, but with the rash, all she can do is itch herself and end up frustrated and crying because of how itchy she is!! 

Thanks to everyone for your thoughts/insights/ideas about the rash.  Good to get others experiences.  Hopefully this mystery will be solved soon!

Claire's rash is just confusing all of us. It kind of comes and goes. One day, Sunday for instance, it was terrible! She couldn't sleep and wouldn't stop itching unless she was completely engrossed in something. And there's no way to tell a 2-year old to stop itching. It just doesn't happen when they're that young. BUT then today, it was 90% gone! She was itching first thing this morning and then just a little before bed, but hardly nothing compared with the bad days. Claire's doctor went over all her meds and is having us stop one of them to see if the rash goes away. I suppose time will tell if that works...and hopefully it does! So not fun for her to be bothered by an annoying itch! Labs will be in the morning so we'll see how her liver function is tomorrow.

It was fun to get out and get cold tonight! It's so fun to have a sledding hill right in our back yard! We took Claire out in the snow for the first time and she wasn't too sure about it. We took her on the small hill first and she didn't cry, but didn't want to go again. We did get her to go down the big hill, sandwiched between Jared and I, but she wasn't thrilled about it at all. When we asked her if she was having fun she quickly responded with a NO....but then when we got inside and talked with her about it, she said she loved it and was so proud that she went sledding, just like Brother!

I just had to show off these beautiful quilts Jared's mom made for us. She is so incredibly talented! We love them...and it so fun to think of her and how much we love her every time we look at them! Thanks Suz!

Just a quick note.  The rash is definitely not gone.  And no one knows what it's from!  We wish we did so we could ease her itch!  And the liver numbers are still elevated.  They are coming down, with is the right direction, but are not normal yet.  Still just hoping they get normal soon without any other action needed.  Clarie will have labs again on Tuesday to check.  We get to do labs only twice this coming week instead of three times!  Yeah! 

We had a good day today.  Claire's liver labs were repeated today and they are still elevated, but have gone down by half since yesterday.  Normal (for one of the levels) is between 7-45.  Claire's level was 12 a week and a half ago.  Monday morning it was 427!  But today it was down to 251.  So it is still high, but at least headed in the right direction.  The tests for some of the common viruses she may have gotten came back negative today, so we're not quite sure what has caused this all to happen.  But at least everything has checked out to be "normal" so far.  Hopefully those liver numbers will find their way back down within the normal range and we can just scratch our head and move on!  

Claire is feeling, looking, and acting great!  Her rash is pretty much gone so she's much happier, content, and rested after getting over that.  Still not quite sure what caused that either.  I'm still leaning towards the velvety fabric from the dress....but I'm not about to put it on again just to see if that was it or not!

And just when you think all is wrong.  It's not. 

Who knows what is going on?!?!  We had a long 12 hours at the hospital today.  Claire's ultrasound and biopsy of the liver took place about 12:45.  It didn't take long at all for the procedure.  (Except for the hours we spend waiting for it all to happen!)  I went to be with her in the recovery room after it was done and she was agitated and mad at just about anything.  She was also probably hungry since she hadn't "eaten" since 6 am.  She kept asking for a movie....but I really don't think she knew what she wanted.  She was just out of it.  But not.  She finally fell asleep in my lap for about 20 minutes.  Then they moved us back down to thePICU.  It took her a few hours to get feeling more like herself and by the end of the night, she was back to normal.   

Good news is that results from the biopsy came back and everything looks completely normal.  Kind of a surprise, but a good one at that.  The ultrasound showed good blood flow with no concerns that way.  There are still some more tests that we don't know the results of tonight, but at least the possibility of rejection of the liver is pretty much out with the normal biopsy results.  YEAH.  That's a relief.  They will keep a close eye on things over the next few days so we'll just kind of see where things go from here.  There still is a possibility that she may have some kind of viral infection that caused the function numbers to jump yesterday...we'll see within the next few days if that's the case. 

SO for now, good news!  She was able to come home tonight and is doing well.  The rash is much better today and I'm thinking it may be cleared up by tomorrow the way it's looking tonight.  She feels great.  I feel tired.  Back in the morning for more blood work and appointments!  Thanks for the prayers!