Who's the cutest girl around?

I am a mom of a cutie pie (very biased). And I wanted to share my experiences with others (including my cuties grandparents, great-grandparents, numerous uncles and other relatives). I love being a mom and can't imagine doing anything else.

Thursday, May 31, 2007

Day +82

If you have visited us you know that Livi (and the rest of us) have fallen in love with another patient named Jackson. He is just the sweetest kid. It is always a highlight of our day to get to see him. They get each other presents and make each other cards. It is too cute.

I am writing now to ask you to pray for Jackson. He has a staph infection and has had a pretty terrible 2 days. Pray that his fever will break, that he will breath more easily and that he will stop throwing up. Pray for peace for his parents. We love Jackson and can't wait to play in the play room with him again soon.

Small update on Livi....she is doing pretty well today. Preliminary tests show no signs of GVHD. THey still are goign to send them to Seattle where they found the GVHD last time. Her WBC's are much more normal. Her kidney and liver functions are normal. It has been a better day. Tomorrow is Rituximab day so it may be tough again but it was nice to have a stable day.

Thanks to...
THe Stoltzfus Care Group
Leslie Yoder
Donna McKelvey
Larua BOl
Sue Forrey
for the cards.

Wednesday, May 30, 2007

Day +81

James here......Emily is holding Livi, so i thought i would update everybody on the days events. She had the endoscopy followed directly with the CT scan. She was under sedation for both. It was about 2hr that she was under. We all were waiting for the endoscopy to start and Livi was scared and she looked up and said "Home", meaning her room. It was so sad. Things went relatively smoothly. When she was in recovery we realized that her NG tube was in her mouth and not down in her stomach were it was supposed to be. By then the sedation had worn off so we had to pull the tube out and put it back up her nose and down her throat and into her stomach. This of course involved holding her down while she screamed her head off. Definitely not fun for Livi or us. We are all back in the room now and pretty wiped out. It was just a long hard day.

Her breathing is doing well. This was a big concern going into things today. There was a big risk that she would have respiratory problems coming out of the procedure that she had. There were even saying that we might end up in the ICU over night. Another big concern over the next few days will be bleeding internally and infection of the biopsy site. They are giving her platelet transfusions to keep her counts above 100 and also a 24 hour course of antibiotics. She was throwing up blood earlier from the biopsies in her throat. But otherwise she is doing well. We should get some of the results back on friday or monday. Thank you all for your prayers today. We are very relieved that she made is through so well. She is definitely a tough little girl.

Tuesday, May 29, 2007

Day +80

Today was a stressful day. Livi did fine but the decisions about tests and talks with the alarmist doc have drained me of all strength and quite a bit of hope. I need sleep and refreshing.

Please pray harder than ever for Livi tomorrow. She will undergo an endoscopy to see how her GVHD is going. There are quite a few requests related to this...
1. That she won't have to be intubated (this is very far fetched but would be amazing)
2. That she will deal well with the anesthesia and if she has to be intubated that it will be perfect and not end us in ICU.
3. that she has no bleeding, purferations or infections from the actual test.
4. that the test will show NO GVHD. That all signs will be completely gone. We won't know complete results till MOnday but we will have preliminary results tomorrow.

We were told at this point if her GVHD were to flare again that would be it. Pray that doesn't happen.

She will also have a CT. This is a five minute test but since she will have it after the endoscopy it will be more intense than usual. Pray that it is quick, easy and that recovery from both will go smoothly.

Pray the CT shows the PTLD is only in her neck. It can travel anywhere through the body and we are praying it somehow stays in one space.

THis is miracle after miracle that we need. I know it is not outside of God's reach. We could use some good news.

Day +80

Today is day +80 so if you are good at math or keeping track you will realize that means we have been in the hospital for 90 days. We came in to the hospital at the end of February and here it is almost June and we're still here. Things are not going as expected. They aren't going well at all.

We are learning more about the PTLD each day. It is a pretty scary disease. If you looked at it under a microscope it would look like cancer and it acts like cancer. This is one of the things they mention in the million form you sign at the beginning that are a slight chance. PRES isn't even mentioned in those forms. We are in some bad waters here. She had the second dose of Rituximab yesterday. It went fine. She threw up throughout but otherwise didn't react. Friday she will have her third dose. Tomorrow or Thursday she will have a CT and repeat endoscopy. She will have to be intubated this time because of the giant lymph nodes. We are praying they can work it out to do them right in a row. Otherwise she will have to be under anesthesia and intubated two days in a row and in her condition that is not a good thing. People die from this. People end up on ventilators and it is all but impossible to get them off. Odds are we will be doing another dose of chemo soon. So all that excitement over the last chemo may have been a little too early. She would recieve cytoxin which is the big bad chemo we were so nervous about early on and so glad to be past. THey took blood to do a test today to see if she is producing the right kind of WBC's. WE want T-cell not B-cells. We desperately need a miracle. I feel depleated and at the end of the rope. I jsut want to take my girl home...happy, healthy and home. Part of the PTLD is that her body is eating up the red blood cells and platelets at a really fast rate. She had gone almost a month without a transfusion and now she got one 2 days ago and is getting another today. Along with everything else please pray that we are able to take this weeks' docs words with a grain of salt. He is smart but has a terrible bed side manner. HE only tells you the worst case never anything positive. He leaves us scared and deflated. Pray we are able to remember he is just a man and not in control of anything.

thanks to..

the Mckelveys' for the card
Patti Agosti for the gift card
The Millens for the gum and magazines
Rachel for the visit. IT was my bit of sanity for the week. I love you tons. Oh and for the fun gifts for Livi and I.
Andrew we are so glad you came to visit. It was nice to have my whole family together for a few short days. Next time lets make the visit at our house.

Saturday, May 26, 2007

Day +77

today has been a rough day. The PTLD causes her lymph nodes to swell and so it looks like she doesn't have a neck. Her little ears are folded up because of how huge her lymph nodes are. You can feel them and even see some of them. She has had fevers up to 102 on and off all day. She has throw up quite a few times tonight and is just a sad little baby. It is hard to watch her like this. it is even harder to feel helpless.

She will get her second dose of the rituximab on monday and the hope is that it will start maing the lymph nodes go down. She got a second chest x-ray in two days today. Nothing is wrong with her lungs so the breathing problems are all because of the swollen lymph nodes invading her air way. Pray for some relief. She is up to 3/4 liter of Oxygen by nose canula. this morning she was only at 1/4th so obviously things have gotten bigger and worse throughout the day.

Friday, May 25, 2007

Day 76 part 2

We are part way through the new med (reflixamab) and Livi had a slight allergic reaction. She threw up and her temp went up to around 101. The med is one that is slowly increased over 8 hours till it hits the max rate. So they have started it again at a lower rate and won't increase it. It just means that it will be have to be given at a slower rate than and thus take a lot longer to get.

She feels pretty gross. Fever, diarhea (which we just got away from...sort of), nausea and sleepiness. Not a fun day but really not many have been here in the hospital.

Day +76

Yesterday Alivia need oxygen when she was sleeping. A chest x-ray showed nothing but we got back blood tests today that told us what she has. It is called PTLD (post transplant lymphoprolifrative disorder). It is a reactivation of the Epstin Bar virus (mono). So what she has is somewhere between Mono and a lymphoma (cancer). It is treated wtih Rituximab (a monoclonal antibody) which is given over 8 hours. She will get it for the first time ASAP and then again in 3 days then every Friday till she is doing better.

It affects your lymphnodes and causes breathing difficulties. Our doc said it can land patients in the ICU or it can cause death. SO this is very serious. They think they caught it very early. Pray that it is completely resolved, that she doesn't end up in the ICU, that her breathing doesnt' get worse, that she doesnt' have an allergic reaction to the rituximab (that is why it is given over such a long time)

SHe will get benedryl and tylenol as pre-meds which might make her very tired. so yet again she will sleep all day and not at night. Last night was a bit better sleep wise. She got to sleep around 2:30 and was up a few times but only till about 4. then she slept till 8. Maybe I'm just adjusting to no sleep again.

Thursday, May 24, 2007

Day +75

Livi's kidney's seems to be getting better. Her liver functions, which were so terrible just a few weeks ago are normal. Her counts are okay. Her platelets are falling quickly and we aren't sure why. So she is getting a dose of IVIG (T-cell boost) today to try to get them back in line. Her electrolites are all out of whack but they are working hard to fix them with IV fluids.

Our doc actually said this morning that it looks like her GVHD is under control. crazy how just a day ago it was not responding to anything. Our doc has given her a bunch of new meds to help her stomach and I think it is working. She isn't "stooling" nearly as much (only once so far today) she she is back on NG feeds so that seems to be a good sign.

It seems like one thing gets better and another gets worse. During her nap her oxygen saturation was dipping too low so now we are waiting for a chest x-ray to make sure she doens't have fluids in her lungs. THe hope is that it is just the combo of all the meds she is on making her sleep deeply...which would be great since she didn't really fall asleep till 5:30 this morning. Dad stayed with me till 2:30 and it seemed like she was asleep so he went home to sleep. but then she woke up ever 15-30 min till 5:30. This is with benedryl, morphine (for her mouth and teeth) and dilantin (which usually knocks her out). I think we are starting to get ahead of the mouth pain. She isn't chewing on her cheeks as much and so they aren't bleeding as much. Her bottom I teeth are all but through.

Thanks to
Jackson for the Cabbage Patch Preemie
Aunt Kathy for the card
Soveriegn Grace Church of Indiana for the generous gift
Monica Coffey for the card
Bill and Shirley Balint for the generous gift
Marmie for all of the cards
Chris and Muriel for the cute outfit from China
Ruth Eckman for the drawing of Grover
The Camps for the Lowe's gift card
Erica Aiken for the note
Sue Forry for the stickers
Andy Raymond for the air purifier
Patti Wallwork for the Princess Magnadoodle
Erin for bring the fun yet again
The "Little Boys" for visiting. We love you guys and it is a highlight our week too.

Wednesday, May 23, 2007

Day +73

We have not had much sleep lately. I was trying to figure out why and so i sat down and wrote out her meds schedule...now I know why we aren't getting any sleep.
Here is our med schedule...or at least what it was before I talked to our nurses about it today and got it all changed.
Noon- Hydralazine and BP (blood pressure)
1 pm Methyloprednisolone
2 pm BP
3 pm
4 pm Cyclosporin, Hydrolazine, BP
5 pm
6 pm Propranolol, BP
7 pm
8 pm Lasix, Hydralazine, BP
9 pm Norvasc (oral), Methylprednisolone, Prevacid (oral), Penicillin (oral)
10 pm Caspofungin,Dilantin, BP
11 pm Cefepime
Midnight Cyclosporine, Hydralazine, BP
1 am
2 am Propranolol, BP
3 am
4 am Hydralazine, BP
5 am Methylprednisolone
6 am BP
7 am
8 am cyclosporin, Lasix, Hydralazine, BP
9 am Acyclovir, Prevacid (oral), Norvasc (oral), Penicillin (oral)
10 am Dilantin, Propranolol, BP
11 am Cefepime

Now all of these meds don't take a minute or two. Some run for up to 2 hours. So there is always someone in and out of our room.

This week our transplant doc is on service. She is a doc we have really grown to like over the last year. She has really stepped back and looked closely at everything that is going on with Alivia. She wasn't holding her cyclosporin level at a thearaputic level so our previous doc was changing her dose every single time she had to take it (3 times a day). Our doc now is observing closely what is going on and letting Alivia's body regulate itself. It seems to be working as her levels are almost exactly where we need them to be. Livi's renal functions are still not noraml. So our doc ordered an echocariogram to make sure it wasn't congestive heart failure (which its not..thank God). Her potassim levels are too high and she is acidodic (too much acid in her body) because her kidney's are dumping acid into her blood which makes her throw up a lot (Four time over night) . She is off of IV nutrition (which is good for her kidney and liver). There may be more kidney damage than we realized but kidneys are good at healing themselves. She will be getting a kidney sonogram tomorrow to see how bad things are. She may need another endoscopy to see if there is some sort of infection that doesn't show up in her bloodwork and to see where the GVHd is. We stopped the stem cell treatment (the experimental one) because we are not sure if it is helping or causing all of these problems. Also her stooling wasn't getting any better with the therapy so why continue. The fear is that her GVHD is resistant to all treatments and I"m not even sure what that means but its not good. It has been an overwhelming couple of day. On top of this she is teething in a big way and has been chewing the insides of her cheeks until they bleed.

I'm not even sure if this message makes sense but that is most of the info we've been bombarded with the last few days. We desperately need a miracle. At this point we are just glad we don't have to be in the ICU. Pray for healing. Pray for a miracle. This is all scarier than ever and more intense. Each day it seems to get worse not better.

Saturday, May 19, 2007

MRI Results

It has been a long day. We didn't go for the MRI until almost 8. By then Alivia was asking to eat every 5 seconds (literally). I'm not sure if it is because it is the weekend or what but we had to take our bed. So that ment moving all the furniture out of the way, everything out from under the bed. Mom and some of the nurses gave our room a through cleaning while we were gone. The MRI took about 45 min and the we had to go to recovery (which we weren't happy about) In recovery she had to wear her mask cause it's not sterile so she was panting under her mask. WE finally got upstairs, where we had to rearrange our entire room to get the bed back in. OUr resident (who we really like) came in and told us what they found. IT is called Posterior REVERSIBLE Encephalopathy Syndrome. It is usually found in pregnant women. The symptoms are vision problems, possible speech problems, confusion and seizures. IT could have been brewing for a while but because a two year old would have a hard time telling us any of those symptoms (Besides seizure which would be obvious) we wouldn't have known. The causes are high blood pressure (which we have), renal failure (which we had and are recovering from) and cyclosporin (which she takes 3 times a day). This is the best possible thing to be the cause of this. It could have been a million times work (like fungal ball or a tumor!!) Thank God.

We got all her meds, ate our dinner (around 10) and she is fast asleep. She didn't sleep all day besides cat naps after the seizures. All in all this was a crazy day that I never ever want to relive. Thanks for your prayers.

Day +70

I slept in this morning and when I woke Alivia was acting strange. After further checking we realized she couldn't see. She couldn't grab anything, she would walk her hands across things to find toys. It was and is terrifying. They think its from a combo of the high blood pressure and cyclosporin. She since has had a seizure. She's had adivan, dilantine and 3 different blood pressure meds. Hopefully it will all be reversible. If it is what they think then it will be but she will have an MRI this evening to make sure it isn't a fungal infection in her brain. PRAY!!!!! I am shaking I'm so scared.

I'll update after the MRI.

Friday, May 18, 2007

Day +69

Livi Laughed by Pa
Yesterday Livi laughed outloud several times and her overall mood was better than it has been in a while. So far today she continues to be ina better mood. It is hard to describe how it makes us feel when she laughs. We laugh with her but for me, my eyes end up a little watery. Tears of Joy?!? We see God's mercy and goodness in Livi's smiles.

Her numbers (lab results) have been gradually improving. The docs have been encouraged. Because of her inactivity she has gotten quite wek and so is unsteady and scared when she stands. Physical therapywas in today and was helful with suggestions. Tory, the P.T., gave her a miniature walker for us to use with Livi. She didn't seem to mind it. Soon we weill be using it and I am sure it will end up plastered with stickers.

There are obviously many things to contineu to pray for: Liver and kidney functioning, blood counts, now standing and walking, full recovery, dare I say discharge, Emily and James...or however you are lead. Most of all be sure to thank God for His faithfulness and goodness. For getting us through this journey so far I would ask that you pray that we can see His hand in everything that happens. Even those things that are difficult and hard to understand.

Thank you dear readers for all of your support and Prayers.

When TOri left Livi's roomtoday she said to be "super positive" when Livi stands we all agreed and clapped for Livi. Livi added her little accent mark "yeah ,ah, yeah". Way to cute!!

"fear nt I am with you, be not dismayed, for I am your God. I will strengthen you, you I will help you, I will uphold you with my victorious right hand." Is 41

Thank you to...
Forry family for the doll and stroller and cards
Rachel Szewczyk
Amy Knutsen
The Kim's
Ann Bowden
Howard Haughery for the Home Depot card (Soooo helpful!!)
The Rice's
Manda for the photo album
Carol for the "girlie" CD
Joni Cairns for the card

Monday, May 14, 2007

CT Scan

As some of you might know if you read the comments the CT scan got put of until 3. It was a bit rough to say the least. They had stopped her feeds at midnight and we weren't sure when she could have clears (originally it was only until 10am) so we had a lot of crying and begging for food and drink (or Dora as she calls it because it comes in a Dora the Explorer cup). It is nearly impossible to resist fulfilling this basic need. It is one of the only things I am still in charge of doing and it is so hard to have to deny her. But we made it to 3. The CT was fast and the changing of the NG tube (new tube, new nostril) went fine. She was sort of waking up during it so she cried quite a bit but other than that she did fine. What a trooper. We won't know the officially results of the CT till tomorrow. But thre is nothing obvious to the eye of the one doc that looked at it (not a radiologist so not the official word).

She had some anti-nausea meds when she got back cause she was a bit gaggy from the new tube or the anesthesia or the chips she wanted so bad or the cyclosporin or all of them combined.

THanks for visiting this weekend Aaron, I loved seeing Livi laugh at you and enjoy having her uncle so close for a weekend come again very very soon.

Day +65

Today Alivia will have a CT scan. It is required for the use of the T-cells that you have one within a set number of hours after your first infusion. It is scheduled for noon and hopefully will be on time because she's not allowed to drink or eat till its over. She woke up saying eat and asking for her cup. I hate having to deny her when we've been pushing food so hard for so long.

The CT scan is just part of the protocol but might end up being a good thing. For a while she was breathing quickly and now she is breathing really slow. She holds her breath for a second after each time she inhales. It odd. Also she threw up 3 times yesterday. She hasn't thrown up in quite a while. It is so sad. She woke up at 5 am and threw up. So she hasn't had a thing to eat or drink since midnight to make sure she doesn't throw up during the CT (she'll be under anesthesia)

that the CT scan that it is on time and that it goes quickly and easily,
that she reacts well to anesthesia and there are no complications,
that she can handle not eating or drinking for another few hours,
that they don't find anything with the scan
that the NG tube replacement goes well. While she is under the anesthesia they are going to switch it to the other nostril. it is better to do when she's asleep but still makes me nervous.
Pray hard that Alivia gets well. It feels like one step forward and a leap backwards.

thanks to Vinson and Joy Sensenig for the book. Andrew for the movie, Natalie M. and family for the care package. Marmie for the card. Krissy Evans for the generous gift. Hannah Knutsen for the sweet card and Jill Piper for th generous gift.

Friday, May 11, 2007

Day +62

We have decided, after much thought, discussion and prayer, to proceed with the T-cell infusion. It starts at 3 today...so any minute now. She will get infusions 2 days a week for 4 weeks. Please pray that there are NO side affects and that it clears up the GVHD as soon as possible.

She is a sad little girl right now. She had gained almost a pound in the last 2 days. She is breathing differently because her stomach is big again. She doesn't want to do much besides sit on her bed or ride in her car. It's been a long couple of days. Pray hard for Livi. She needs it so much.

My favorite quote from today's talk with the doctor (read with much sarcasm) was when asked if he was thinking of a discharge date he said NO. We're going to be here a few more weeks I guess.

Wednesday, May 09, 2007

Day +60

If you do the math you will realize we hae been here for 70 days. It seems like forever. We officially are the people who have been on the floor the longest right now. There were 2 other transplant patients that came in March 28th and 29th... one went home yesterday and the other is going home tomorrow. I actually said to the doc "we're never going home, are we?" he laughed and said "of course you will" I was wishing for a date but that doesn't seem to be happening. Each day it seems like one thing gets better and 2 more get worse. Her liver functions are better but now her kidney functions are worse. They are changing around meds, adding and deleting things in her IV nutrition and trying to do anything to make the numbers better. There is no med that just fixes the kidney so please pray that this will make it better.

On top of it all Alivia is getting at least 3 teeth. One is poking through now and the other two are very swollen. Because of it she doesn't really want to eat. Her stools were less yesterday but today seem to be more. can't really tell until the day is over and the final tally can be made. Pray things start to get better.

We are excited for the return of Pa tonight. He was home for work again (Mon-today) and was much missed. He will probably be heading home again next week for some work. He is amazing (in case you didn't know). Thanks Dad for being here for us and doing everything you can to make this whole thing easier. I love you, James loves you and Livi..well Livi adores you.

Thanks to Krissy Evans for the card, MOnica Coffey for the care package, Sandra Knowles for the generous gift, Great Grandma and Grandpa McClements for the note, Susan Forry for the card, Maureen Bourke for the Super cool Butterfly lights (they light up the whole room), the wand and other super fun stuff, Katherine Millen for the card and Erin for being my stylist.

Tuesday, May 08, 2007

James on TV

Want to see James on TV? Here you go. Can't believe how much he's gotten done (with the help of some amazing family and friends). Most of the interior works is done. Exterior may take a while to get done but that can be done when we are home. So proud of you, my love.
http://www.whptv.com/mediacenter/local.aspx (there's a menu to the right of the video 'box' that says, "fresh start for alivia")

Day +59

Here is the promised picture. She is much puffier from the steriods and her eyebrows are dark from the cyclosporin...and this is a smile in case you were wondering.

James will be on the 5:30 or 6 CBS news this evening. They came and interviewed him at the house. I sent a few photos of Alivia too. Should be nice.

We are wrestling with whether or not to give her an experiemental treatment called Mysenchymal Stem Cells. It is a T-cell boost that would hopefully help with the GVHD which should be getting better by now but doesn't seem to be. It is so experimental that only 42 people have gotten it....2 of which are kids on this floor. I am going back and forth. James and I really need to talk about it tonight and pray about it and come up with a plan. The other options are to increase the steriods (not a good idea for her bones) or some other intense meds that I"m not too excited about. We've talked to our doctor, got another doctors opinion and talk to all of the nurses. Pray we are able to make a good decision.

Saturday, May 05, 2007

Day +56 part 2

There is a good chance that Alivia is starting to develop GVHD on her skin. Please pray it disappears and astounds the doctors. It can become very uncomfortable and itchy.

Day +56

I haven't posted a picture in a while. I will try to get one later today. She definetly doesn't look the same. Still cute but now with a few chins (steriod weight) and dark eyebrows. they look more and more like her Dad's everyday. I tease him that she finally looks like him.

She might get a day pass tonight. Meaning we could go drive around in the car. I guess that would be a big adventure after being stuck here for so long. Not sure if she would even enjoy it at this point. We'll see.

Also there are rumors of possible discharge early next week. I'm taking it with a grain of salt. We've had discharge dates before. Don't want to get excited till they actually say "Go home". Her blood cultures have been negative for 3 days, meaning the infection is under control with the antibiotics. We have 9 more days of IV antibiotic to ensure it is all gone. We are changing doses around on quite a few on the meds to try to get the levels right. It's been frustrating. Her cyclosporin level was too high (over 500) so they skipped a dose (this is the med that stinks and is oily and she has to take orally) then the next day it was too low (125). It should be between 150 and 250. So after the 125 they gave a bigger dose which sent it back over 300 and then skipped another dose to bring it down so it came down to 105 so they gave a bolis plus and increased dose. It was 214 yesterday and we'll see what it was today. Cyclosporin is an anti-rejection med that is very important to help deal with the GVHD. We are still dealing with GVHD. Please pray that it doesn't flare again, that it goes away completely and doesnt' come back. Also pray it doesn't become chronic.

Most of the day Livi is pretty sad. She says home often (even in her sleep). Without medicine she doens't sleep well at all. Pray they figure out all her different levels, doses, counts, and GVHD so we can get out of here and see the Livi we know so well. Every once in a while we get a glimpse of the care free little girl. I can tell she wants to be happy and wants to laugh and be silly but she is just sad. Also please pray that she will want to walk around more. She doesn't want to walk unless we make her. Steriods can make you feel so different and make you not want to walk. But we need to keep her moving cause steriods can also cause fractures or osteoperosis and so we need to know if she just doesn't feel like walking or if something is hurt.

thanks to Erin for all the fun gifts and for hanging out with me. We love seeing you.

Wednesday, May 02, 2007

Day +52

When this transplant process started I thought "at least we'll be home by Mother's day". I knew Livi's birthday, Dad's birthday and Easter we would be here but I assumed we would be out by Mother's day. We wont' be out of here by then. Maybe the week after. But I'm not holding my breath. This infection requires a 10-14 day antibiotic course. Alivia is hooked up to her IV's up to 7 hours a day for antibiotics and she is on IV nutrition 12 hours a day. That means very little time not hooked up. She hates walking around when she is hooked up and usually doesnt' want to leave the room with the IV pole. She is pretty crabby from all the steriods. Most days she just wants me to sit with her. She definetly doesn't want to stand or walk. We have to make her do it so that she gets some kind of excerise. It makes for long days.

We are desperately trying to get our house done. The condo that we were going to be staying in is needed by another family starting Friday so my parents will be moving back to the hotel and we will have to be able to go to our house when we are discharged. This adds a bit of stress to James (and in turn us). He is working close to 80 hours a week with his job and the work on the house. We dont' get to see him as much as we would like cause he is doing so much to make our home beter and safer for Alivia. Pray that he is able to get it all done also pray that he doesn't get sick. Thanks Bill, John, Chris and Jeremy for your work this week. It means more than you can imagine. Especially when it means we get to see James (even for an hour or two).

Here is a photo. It's been a while. You might notice how chubby her face is. The steriods make you puff up so much. Can't wait to get off of them. This is a photo of the best part of her day today. I was out of the room for a bit and when I came back Gigi, Pa and Livi were having a music/dance party. Gigi got some instruments and they were playing. This is her smiling by the way. Thanks for making her smile even if only for a bit, Gigi and Pa.

Thanks to...
Deb Gilgore for the card
Claudia Curry for the princess dress...i'll take a picture once she tries it on.
Beth for the cutest dress. I can't wait to put it on her. and the sweet PJ's
Marmie for the GIANT Elmo (it's bigger than Livi)
The Ryer family for the stickers, crayons and book
April Spinetti for the sweet note

Tuesday, May 01, 2007

Day +52

We only get counts done every 3 days now and yesterday when they did her counts her WBC's had shot way up. It went from 6.9 on the 25th to 16.7 on the 27th to 37 yesterday!!! 37 is really high. It could have been from the increased steriods but to be sure they took blood cultures. Steriods make getting a fever (the first sign of a bacterial infection) really hard. So we wouldn't know that she had anything without the higher WBC count and blood cultures. Today the cultures came back positive. We are not sure exactly what bacteria it is yet but please pray that the new antibiotics make it go away quickly. Pray that she starts to feel better very soon.

She is very puffy from the steriods and she is starting to grow Cyclosporin (anti-rejection med) hair. Cyclosporin makes dark hair grow all over the place.You can get it on your back, eyebrows, chin, chest, earlobes and bottom. So far the most noticable is her eyebrows are darker and bigger. It will fall out as soon as she stops taking the cylcosporin but it is just another yucky side affect.