Our Jada Rose

Friday September 1, 2006

I am still in the hospital. Mommy and I are living here. I get wonderful visits from Grandma and Grandpa Aders all the time. Grandma Rose comes by when she can pull away from studies, work, and watching Troy Danny. Yesterday they took 200 cc's of fluid from my belly. It was nice to get some relief. My belly went down to about 46 cm. However, this evening my belly is starting to go up. They are watching for some signs that things are getting much worse. Bleeding, and/or breathing. I love to be held, and that is pretty much the only real relief that I get. Last night the wonderful nurses watched me for about seven hours while mommy got some much needed sleep. Tomorrow I will be excited for daddy to come up to the hospital and tell me that the Utes have won!

Wednesday August 30, 2006

I have been admitted to the hospital. The doctors say this one is long term. Basically the only way I'm getting out now is with a new liver. Aunt Loni is the front runner in the live donor area, but we are still praying for a cadaveric donor. Mommy doesnt leave the hospital so some healthy visitors would be wonderful! Daddy has found employment, and can also remain in school! Saturday is a big day for our Utes, and assuming I am doing ok at the hospital Daddy is going to have some friends to break in the "Ute Room". Uncle Greg came all the way from the Carribean Islands to see me and I am loving every minute that I spend with him. Grandma Dawny spends the majority of the day with mommy and I. And Grandma Rose is going to visit tomorrow. Wait until I tell her its ok for us to go on small hikes around the hospital! They put me in a little cart and wheel my I.V. along side me. I smile at strangers, and keep a watchful eye out for my hospital buddy Uncle Brent. Daddy does wheelies with me in the hallway and mommy shakes her head. I'm finding ways to have fun. Hope to see some of you. Keep those prayers comming. Thanks

Tuesday August 29, 2006

AHHHHhhhhhh the simple joys of life! Notice my complete jubiliation! Yesterday I experienced my first Astro Bar. I am teething, and those astro bars certainly help ease the pain. They are goooood! My tummy is enlarged to 48 and 1/2 cm. I may be getting admitted in the next few days. The feeling my family gets from the doctors is that I am on the home stretch. Daddy is currently looking for a job, so he is pretty stressed about that. He continues with school, and seeing me every night gets him through some long hard days. Mommy and grandma are exhausted! I am a 26 hour a day job (They say I am worth every minute! ). So basically our whole family is in need of some prayers leading to blessings. Grandma Rose came up and spent Saturday with me so Grandma Dawny could get some much needed work done. What a fun day! She took me for a hike in the neighborhood on a front pack that Rob and Angel gave me. On the way back I was so tuckered, I fell asleep. She said one day I will be able to climb Mount Timpanogus with her. Love to all, and thank you for your prayers and support.

Wednesday August 23, 2006

Today Mommy and I went up to the Universty of Utah to get some work ups done for live donor. We are going to continue to move forward, however, the liver clinic did ask for daddys information for a live donor and requested that all those who are interested in being a live donor please call the liver clinic again. If you know your blood type, they will need that information. Tomorrow Aunt Loni is going to have a CT scan to see if she may also be a candidate. Daddy started school today and is pretty tired. He can only write my journal from our home, and I am staying at Grandma and Grandpa Aders, so I have requested that he make this entry short and sweet so he can get up to play with me as we miss eachother ALOT! As a side note, I would also like to congratulate Brett Ratliff for making the starting quarterback position for the Utes. Lets beat those Bruins next week Brett!

Monday August 14, 2006

I am home from the hospital! Yesterday afternoon I got home and it was sure nice to be back at Grandma Aders. Last night I slept the entire night! Mommy is a little worried because I have never done that. She is going to watch me to make sure I am not getting too lethargic. I hear Grandma Rose is home from Lake Powell, hopefully I will get a chance to see her soon. We went to Dr. Book today to make sure my ammonia levels werent out of range. They were ok, so they are taking me down on some of my medications that make me tired. Dr. Book also said that more importantly than my PELD is the goal to get my weight up! I have dropped down to 9 lbs 7 ounces. They have increased my fat intake quite a bit. This is probably going to be hard on my little belly. If this doesnt work we may need to go to more extreme measures, such as TPN's.

Friday August 11, 2006

Well I am stable, however my tummy is getting very swollen. It is usually 42-43 cm, it is now 47- 48. This ascites could create an infection, so they are putting me on a diuretict . Also today I am being admitted to the hospital so they can keep a sharp eye on me. I am still able to crack out a smile, and love the time I spend with grandma, mommy and daddy. Mommy is going to stay up here with me to keep me company. My liver news is a little grim right now because they dont know if my portal vein is large enough for me to have a live transplant. They have also made it quite clear that a liver that is small enough and with my blood type is going to be rare right now. My peld score is sitting at 10. This isn't good enough to get a liver right now. Any prayers would be appreciated.

Wednesday August 2, 2006

I am now home from the hospital and sleeping well. Mommy still has more tests to see if she can be a donor, but so far all seems to be a go. they have taken my pain meds up, and it seems as though my itching is not as bad. Daddy cut his finger today, and has it in a splint so he isnt able to type as much. Sorry.

Tuesday August 1, 2006

I am still up at the hospital, up until now mommy and daddy have been only giving me .5 mm of codeine, now they are giving me 1 mm. This is the maximum dose allowed by Dr. Book. Tomorrow mommy will be getting some work done to see if she is the best candidate to give me a piece of her liver. Today Teya, Sean, and Troy Danny came in to the hospital to see me. I loved seeing them! Also Angel came by to see me. Angel is representative of her name as I am to a Rose! Mommy and Daddy said she is the only angel I am allowed to spend any prolonged period of time with. She volunteered along with Megan Christensen Webb to give me a liver as well. They are wonderful friends, who have helped us out a lot. Hopefully I may come home tomorrow. They started to give me Phenobarbital to assist with my itching. There were several hours today that I was able to relax and get some sleep. Fortunately I woke up in time to watch King of the Hill and Simpson's with daddy. Daddy went and worked on my Ute room. We are pretty excited to spend some time in there! His goal is to finish it by the time he is back in school. Daddy was accepted to the MSW 2 year program at the University of Utah . Good Luck dad, you've got your work cut out for you!!!

Monday July 31, 2006

Daddy has been such a slacker in keeping up with my journal. We are in some tough waters right now. Due to my bilirubin being excreted through my sweat glands I am itching like CRAZY! I have some sores on my lil face from scratching so much! I am also in a great deal of pain. I am admitted to the hospital. They give me codeine every 4 hours. I love my meds! I've turned into an addict of sorts. Every time I see anything that remotely looks like a syringe, I grab it and start sucking on it to bleed any drug I can out of it! Plans have started to change. Apparently the doctors think I may be up to my fighting weight, and will need to get moving on some heavy duty treatment. Good news is the doctors have approved me for a possible live donor. Tomorrow some of my family will start being worked up for a possible liver transplant. Mommy and Daddy are first in line then Aunt Loni, and from there the list goes on and on.

Sunday July 16, 2006

Due to the amount of action this last week, mommy and daddy decided to just stay up at Grandma and Grandpa Aders this weekend. I was completly distraught, and expressed it with full amplitude! You see Grandma and Grandpa Aders went out of town, and I wanted to go be with grandma Rose and cousin Troy! I am recieving regular doses of codeine. My feeding tube is working well. And the good news is I am still feeding from the bottle during the day. Last night I was keeping daddy up and he decided to write Coach Whittingham a letter. He posted it on Utefans.net. There are some amazing people on there, and their responses to it were very heartwarming. Check it out. http://www.utefans.net/message.php?id=360180

Thursday July 13, 2006

Well thats the last time I am going to let daddy write in my journal for me. Waaaaaayy too mushy! Today I was in quite a bit of pain. Mommy slept at the hospital with me, and she is doing the same tonight. Grandma Dawny and Grandpa Nolan came up to see me from 5:00 until 10:30 ! I sure love Grandma Dawnys snuggles. They are a little bit of heaven! My feeding tube is going to remain in. Tonight Mommy had to show the nurses that she could take out the tube and reinsert it. I was pretty upset with the whole ordeal, but mommy did a great job and was sure to snuggle me extra tight when it was done. I am feeding from the tube during the hours of 9 pm. to 9 am . Some good news is that my weight has gone up to 9 lbs 4 ounces! Also my tummy girth has dropped a little from 44 to 42. Today I am officially on the liver transplant list. Tomorrow morning mommy and grandma Dawny are getting the pager. Daddy had to give all the numbers of close family and friends who might be able to locate us in case the liver comes and mommy and daddy don't get the page. Those of you who know my mommy know that will never happen, but we gave the names to them anyways. Daddy says he is still awe stricken by how strong I am. When I get a prick in the heel, or when they draw my blood, I seldom cry any more. Now don't get me wrong, I howl when the feeding tube goes in, but you would too! My PELD score is starting at 16. However it is expected to be up quite a bit by my next lab. Grandma Rose stopped in and gave me some snuggles tonight. I can tell she worries about me, but I need her to keep up on her schoolwork so she can make more money to put in a special pool that is clean enough to handle my immuno-issues. I should be going home to Grandma and Grandpa Aders tomorrow some time. Then it looks like I am going to be at Grandma Roses on Sunday and Monday. I would love some non sick visitors to come and see me. Just to warn you I have a little noodle sized tube coming out of my nose now, but don't worry, I'm used to it and it doesn't hurt as long as people leave it in there. Good night all, I appreciate all your thoughts and prayers.

Wednesday July 12, 2006

It is eleven o'clock on Wednesday night. This is actually Troy ( Jada's Dad) writing this time. Over the last two days Jada has been eating less and less. It appears we have turned a corner and are letting up on the break so as to gain speed for this portion of the race. She was supposed to be eating 18 ounces per day. We are barely getting 13.5. Dr. Book is out of town, so Dr. Guthrie is in charge for now. He told us to check Jada in today so we could get a feeding tube in her…Tonight I stood at the foot of my little girls bed and watched her in agony as they pushed a tube past her sinus and down into her tummy. For the first time she looked strait at me and literally reached out for me. I felt so utterly helpless. The pain was so great that I had to leave the room and gain some composure. All the while my SUPER HERO Andrea stayed strong and focused and got her through the ordeal. Those of you who read this need to know what an unbelievable thing I witnessed tonight. The spirit and body weighing no more than 9 pounds exhibited more raw strength, courage, and patience than any being I have personally witnessed. Andrea makes no secret of how much I wanted a boy, I wanted a strong linebacker who would show his siblings how to be a strong Chilton. I got a smaller than average little girl who is showing her parents, grandparents and all their siblings how to be a strong Chilton. In my years of playing football, and coaching football I have never seen such a desire to win. Jada Rose is doing this thing her own way, and she's giving us a clinic on how to deal with excruciating pain and mind over matter strength. Those of you who are thinking of Jada Rose on a daily basis, rest assured if this thing is up to her, she will settle for nothing short of eminent victory. I honestly don't understand what goes into making such a spirit. What gives it this strength? Is it her Grandpa Mark? Grandma Bloom? Grandma Rosalie? Grandpa Daniel Webster? Or was it her strength that was manifested in their lives? I honestly am not bragging about myself. I don't posses the strength that Jada Rose has. Her mother, I do brag about. Every doctor walks into the room, and sees her medication charts, each professionally done and marked to the quarter hour with each cc of medication. They leave offering her a job, and shaking their head in disbelief. At this moment Andrea is at the hospital and is finishing a very hard day with her Rose comfortably sleeping in her arms. Andrea and I knew this girl needed to be named Rose. Her Grandmother has faith, honor, and courage that inspire all that know her. Her grandmother Rosalie captured the hearts of each person she met with pure love, empathy, and big big hugs. But tonight I see why she has that name. A rose doesn't die unless it is cut from its home. Its beauty is blinding, while mysteriously allowing the other flowers to be enhanced with their own beauty. Roses are absolutely breathtaking, and stunning. Their petals are as silk and even water itself appears to separate and fall off rather than attempt to blend in with it. And the thorns, ahhh the thorns. Is it true every rose has its thorn? Yes, but those who love and care for her, know her well enough not to let the thorns hurt them. To the Rose the thorns are a statement “ I will never give up, you will give up before I will. Not only am I protected by my thorns, those who surround me also have thorns who will protect me. I may take a nap, but I will always wake up bigger and brighter than before." As the father of Jada Rose I often look into her eyes and pray that she is proud of me? What a blessing it is to be in the presence of perfection, to be offered perfect love. Thank you for choosing us Jada Rose! We will fight for you with all we have. You will win this battle.

Friday July 7, 2006

Wow it has just been way too long since I last checked in. Well to sum it up if it were not for mommy I would probably be in the hospital. Diligence, strength, and desire to keep me healthy with watching me constantly by taking my temperature 8 to 9 times a day is keeping me on top of my health. However, I am starting to get pretty sick. My liver enzymes are going down, and normally that would be good but it means my liver is finally failing. my weight is 9 lbs 6.8 ounces! I am still gaining weight! My ammonia levels went way up, but that was because my formula was just too darn fatty. I met Annie ( the four year old who had a liver transplant. She was such a good little buddy to me. Mommy and daddy learned so much from that visit. The most important thing was that I could have a normal life! Once this thing happens, life will be hard for a while, but in the long run kids actually do pretty well. This summer Annie was given the green light to go swimming! I am making regular trips to the doctors office to get check ups. My labs are all over the place. But most importantly, I can still charm the pants off people with my huge toothless smile! Cousin Troy Danny was born on July 3rd. He weighs 7 lbs 13 ounces... whew, I was worried he might be born bigger than me! But... I WIN!

Saturday June 24, 2006

My weight has gone up to 8lbs 13 ounces. I am spending alot of time with both grandmas and loving every minute of it! This Sunday mommy, daddy and I are going to meet a little girl who lives in a nearbye town. This little girl is 4 years old and had a liver transplant when she was 6 months old. We are so excited to hear their story and meet this wonderful family who we have so much in common with.

Tuesday June 20, 2006

The last week has been pretty uneventful. I have taken several visits to Grandma Roses house. I am catching on to the art of smiling, and have some pictures to prove it. Be sure to look at some of my photo's. Tomorrow I am going to have my next weight checked. You can look at my progress on my TX section under weight and labs. Last week I had some labs done, and everything was elevated. Daddy will update that as soon as he can. Lately I am having a little more discomfort. I am going to go in and get checked for ascites, it is related to the liver having a build up of scar tissue and the difficulty that creates for the blood to flow through it--the back up results in increased pressure and fluid tends to seep through the cells and collects around the liver instead.  .

Tuesday June 13, 2006

Because I was gaining so much weight Dr. Havlik said I only need to see him once a week. Dad is finally over his sickness, so he spends every minute he can with me. Tomorrow he and I are going on an outing to Grandma Rose's house to spend the day so Grandma Dawny and Mommy can go run some errands. We will probably be there from 9:00 am until sometime in the evening. Tonight Daddy and I are going to watch game three of the finals. Its pretty cool because two Utes are playing on both teams. The NBA is kind of lame but what else are we going to watch? World Cup Soccer? The USA stinks! Daddy says its because all our "real athletes" are playing football or basketball. Mommy gets mad at him when he says that kind of stuff. I just laugh because I know Daddys right. Go UTES!

Friday June 9, 2006

We went in to see Dr. Havlik this morning. We met up with daddy and he was able to put on a mask and talk to me for a while. I wasn't in a very good mood though because at Dr. Havliks office I recieved my immunizations. However I did move up to 8 lbs 8 ounces! That is one ounce a day. Not too shabby if I do say so myself. Tonight if I am feeling better I am going to pack mommy, grandma Dawny and all their stuff up and head down to grandma Roses house to work on lil cousin Troy's room. It is soooo cute! Aunt Teya hasn't been allowed to see it because we want it to be finished before she is able to see it. I just want to remind you that my treatment section is being updated regularly especially the weight/labs link. I am hoping to soon get some pictures of Dr. Havlik, Dr. Book, and Dr. Meyers up. Today Dr. Havlik held me and shook his head and said "well Jada, it sure doesnt look like your getting any less cuter"...he loves me.

Tuesday June 6, 2006

Later on today I went in to see Dr. Havlik. I have been having some problems holding my food down for some time now. Mommy and Daddy are worried I am starting to get sicker. However I have gained weight. I am now 8 lbs 5 ounces! I haven't been able to see Daddy in more than four days. He is really missing me right now, and I am missing him. I sure hope he can get better soon. I am really looking forward to our early morning talks on Utah football.

Tuesday June 6, 2006

Its been a string of pretty good days. The only issue I am having is that my weight is not rising as fast as we want. I only gained one ounce from Tuesday of last week to Friday. But as least I did not loose weight. This weekend has been a great couple of days. I was able to see Abbey and Andy. They came up to Grandma and Grandpa Aders to eat dinner! Then they hung around to watch me get a bath. On Saturday cousin Issak, Scott, Tracy, Marki, and Dan all came to see me. Marki was able to feed me. And I played with cousin Issak for a while. We have some great pictures that hopefully will find their way on to the website. I have some very exciting news regarding Aunt Teya. She found out Monday that she is dialated to a three and seventy percent efaced! I don't know what all that means, but mommy said it means cousin Troy is going to be here soon! I have been very excited for that. However I am disappointed that now Aunt Teya wont have that amazing belly to lay on. I love resting on her because the shape of her belly lets me sit on her and my enalarged spleen and liver have a nice little space to be without feeling any pressure! Oh well, it will be worth it to have cousin Troy here. Daddy cant seem to keep himself healthy for a long period of time. He is again sick so I havent seen him for about 3 days. Oh yes and more good news is my picc line is out!

Thursday June 1, 2006

Tomorrow I am recieving the second phase of my blood tests that are required for me to be on the transplant list. I am also going to get weighed. Hopefully I weigh around 8 lbs 4 ounces! That is our target for the last several days. Tomorrow evening the TX section will have that update under the Dr. Havlik link. Even bigger news is I may be getting my picc line out tomorrow! That means endless splashing around in my bath tub, no more getting scratched by the line, and less worries for mommy, daddy, and grandma's. We all understand that I could get it back in at anytime due to an infection, but lets all pray for that not to happen. Daddy informed me that he went 4 for 5 in softball tonight. They won 26-8. I have been having a harder time sleeping lately. It seems that I need to wake up every 2 hours or so to tell my family about tummy cramps. Last night I was up a couple times with daddy, it was actually kind of nice because we looked up our Utes and talked about how good they are going to be this season. One magazine had them ranked 15th in the country! I'm worried about the running backs this year but daddy says this Poston kid out of USC is pretty good. I just think he is way to injury prone. I was bummed to hear I may not be able to see many home games this year, but daddy promised me he would record them and watch them with me. Tomorrow night I was pleased to hear Abbey and Andy will be comming up to have some dinner with us! Last night I went to daddys work and Abbey fed me a bottle. She did awsome. I enjoyed being able to meet some of the people at daddys work because they have done so much for our family. Sleep tight everybody, Ill be thinking about you when I am up at 12, 2, 4, 6, and 8 oclock tonight.

Sunday May 28, 2006

We have been to the class on liver transplants. There is sooooo much information that we learned from it. Our TX section will contain all the information, and should be updated on Monday the 29th. Mommy and Daddy are going to get a pager that will notify us when a liver is ready. We absolutely cannot leave the Wasatch front in between now and that time. They warned us that carrying the pager is a very stressful thing because it is always there reminding us that we are waiting for the unknown. Once I do have a liver I will go into a special wing of the hospital for 2 to 4 months!! Then life starts over with a whole new set of rules. Lake Powell is going to be a thing of the past. The water in standing lakes just containes too much bacteria for my immune system. Those of you who know about our family understand what an enormous change that will be. Daddy and Mommy are thinking of some other family vacations that they can start in place of LP. Grandma Rose said this would be a great excuse for her to put in a pool! This way she can maintain the perfect chlorine level and I can play and learn to swim! I will be able to go into the ocean so vacations on islands with swimming in the ocean and SCUBA diving will be a good option. And of course we will continue to follow the Utes during the falls. On Thursday I met a special little girl with BA who just recieved her transplant in January and she looked very good! Her skin was a beautiful pink tone and she had plenty of body fat. I think she was kind of jealous of my tan and girlish figure. She was an amazing girl who had many problems and became very sick before she finally recieved her liver. Also there is a family in a neighboring town who has a child with a new liver and they want to meet us! We are excited to ask them questions, and hear their story. Tonight Grandma Rose made the trek up to Grandma and Grandpa Aders just to see little ol me! I had just finished my bath so I was very happy to see her. She held me and I went to sleep. Tomorrow Daddy said he is going to spend all day with me! Last night he and mommy went out on a much needed date! They said they had sooo much fun together. I was sad to leave the Bishops house but was glad to see mommy and daddy again. Daddy said he did hit better in his softball game, he went 3 for 4 with a double and two singles. I told him its not good enough and I'm not comming until he can do better. Good night everybody I love you for caring and stopping by to see how I am doing. Daddy and Mommy says to thank all their wonderful friends for everything they have done for us. Andy, Abbey, Rob, Angel, Tipp, Chad, Taylors, Fowlers, Cheryl Lee, Jared , Brock, Bob, Claire, Shorts, Loni, Zack, Teya, Sean...the list goes on and on and on! We love all of you!

Wednesday May 24, 2005 Today I have been hanging out with Grandma Dawny while Daddy went to work and Mommy took care of bills, chores, etc. Tomorrow is a pretty important day. Tomorrow Mommy, Daddy, Grandma Rose, and Grandma Dawny are all going to Dr. Booke's office to take a class on liver transplant. They have a whole bunch of questions to ask and I have a few to ask myself, like when is this fun picc line going to be taken out? Daddy is going to post the information on my TX link. After the class I am going to go home and take a nap while daddy goes back to work and then to his softball game. I'm pretty disapointed with how he's been hitting the ball lately. I keep telling him he's pulling his head, and taking way too deep of a step. But he doesnt seem to get it. I'm not going to his games for a while until he starts hitting again....that and I get a tummy ache from staying outside on those bleachers for too long. Tomorrow night the bishops wife is comming over to take a tutorial on how to babysit me. She wants to watch me while mommy and daddy go out on a date. .

Sunday May 21, 2006 I have been staying at Grandma Roses house for the last little while. Aunt Teya had a baby shower for little Troy Danny. She got all kinds of cool toys that I am trying out. Yesterday I had a nice big blob of bile in my poop! That ends another drought. However, I have not had much since then. I am just enjoying the nice weather, I get to go outside alot for bar B Q's and to watch people swim in the pool next door.

Thursday May 18, 2006 I have been doing ok lately, as of Tuesday I am up one ounce, to 7 pounds 13 ounces. I am only taking my sterriods by IV and hopefully in a week or so I can get my picc line out. I am staying a couple of nights at Grandma Dawny and Grandpa Nolans house. My color varies one day I look really jaundice and the next day I am almost a normal skin color. I'm a very unpredictable girl. Tomorrow I have an appt with Dr Havlik to see how much I have gained in the last three days. Hopefully I am putting on 1 to 1/2 ounces a day.

Monday May 15, 2006 Well in the last week I have returned to the hospital twice. One was un planned, I was throwing up a LOT on saturday night so mommy, grandma Rose, Daddy and I all went to the emergency room. Turns out I was just trying to get in to see my favorite nurse in the PICU...didn't work, they sent me home a couple of hours later. On mothers day I gave a couple of diapers with bile in it for mothers day! Not a lot but the best I could do. I went in to see dr. Booke today and in two weeks I will be added to the liver transplant list. I am still pretty healthy so I am probably not going to get a liver anytime soon. However, if a liver from a donor shows up at the hospital I am registered at, and it is a perfect match, I will get it! Dr Booke said that the goal is to get me to my one year mark. She wants me to weigh at least 20 pounds! She said I probably will get more sick between now and then, and that its a possibility that my Kasai may begin working as it should. Keep your fingers crossed, and watch for the new "weight watchers" link to be added to my web site. As for right now I am happy. Love you all, come and visit me soon.

Monday May 7, 2006 I am finally home again! Actually this time I am at Grandma Roses house. We feel like things are cleaner there right now and we have the most support in assisting me throughout the evenings. All of my tests are very high. My GGT's are in the 3000's. My bilirubin is fluxuating up and down from 12-9. I did get a blood transufsion on Sunday and it helped my color and overall attitude alot. Well I will keep you guys updated. There may possible be a change to my website's poop watch. We may need to start watching my weight to make sure I am gaining enough weight in order to help me in what looksto be a liver transplant situation.

Sunday May 6, 2006 Possibly comming home on Monday! keep your fingers crossed!

Saturday May 5, 2006

Today I was bright eyed all day long! Mom and Dad were able to stay at their friends Abbey and Andys for the last two nights. This is really nice because they only live a few minutes from the hospital and they can be here in a moments notice. Tonight it is just Mommy and I. Dad has to go to work in the morning so he is sleeping at home with the dogs to keep him company. Tonight I had a visit from Aunt Claire and Uncle Bob! I thought Aunt Claire was so wonderful I just threw a few charming smiles her way. And of course Uncle Bob and I exchanged empathetic glances as he and I both know what its like to spend large amounts of time in a hospital with nurses probing you all night long. Aunt Loni and Uncle Zak also showed up for the evening. Uncle Zak even made a special trip all the way back to our house late in the evening to make sure I had some clean socks for the night! What a guy! The doctors say my liver still seems pretty hard. My levels are all elevated again, so they are watching me close. I sure am excited to go home! I already have offers from Aunt Loni, and Aunt Teya to stay up all night sometime this week so mommy can get a good nights sleep every couple days. I'm excited to cuddle with them. My new thing is I like to burry my head into the neck of whoever is holding me and snuggle real close. This puts me to sleep real fast. But dont even think of setting me down because I will let you know I want to be held! I'm a little "high maintenance" in that way. These nurses on the fourth floor are great, but I sure do miss my Elizabeth! Sometimes I'm temted to fake a fever so they will put me back with her for the evening. She is truely one of the most important persons in our familys lives. Everybody knows who nurse Elizabeth is.

Thursday May 4, 2006

I am now up on the floor! I have been moved out of the PICU, and am being fed regularly. Today Grandma Rose gave me a bath aaaahhh it felt so good! I just sat there and enjoyed the warm water and the scrub down. This was my first submersed bath! Last night Elizabeth my favorite nurse from when I had the Kasai was able to watch me. As soon as she got there it was like everything started getting better, my temp dropped, as did my blood pressure, and I even squeezed out a little grin from time to time. Mommy and Daddy love it when she is there because they can go get a good nights rest knowing I am in the best of hands. Dr Booke said that my poop may get darker, but told mommy and daddy not to get too excited about it as my liver looks to be scarring more and more and with each day a liver transplant looks closer and closer. Hopefully this Kasai can buy me some time so I can put on more weight to handle a procedure like liver transplant. Well I absolutely love visitors! Today cousin Scott and aunt Tracy with little issac came up to see me! Then Uncle Zak and Aunt Loni spent some of the evening. If anyone wants to come see me visitors are welcome and I absolutely love it! Just call my Dad and he will tell you how to find me. Tonight Grandma Dawny is going to spend all night with me at the hospital so mommy and daddy can get some sleep. I am so excited to cuddle with her tonight, she is awsome!

Wednesday May 3, 2006

Well today was my worst day since my surgery! Last night mom discovered that
I was running a temperature of 102 so she took me into the ER. Dad was
working so he wasnt there. When I got to the ER they decided to watch me and
give me heavy antibiotics. Heres what the doctors think was going on. I
probably have colongitus, that is where my new duct running from my small
intestine leaks bacteria into my liver. This made me pretty sick. Now the
scarry part was when they gave me the antibiotic, I went into septic shock
and stopped breathing. Mommy and Grandma Aders were screaming for help, and
everybody started working on me. They even put an iv into my head...ouch!!
Well to make a long story short it is now 8:00 pm and I am stable. In fact
they have given me another shot of antibiotics and I am doing well. My blood
pressure is almost to normal, and I may be able to eat tonight. However I am
going to be in the hospital for what looks like a week or more. I love
visitors so just call my daddy and he will tell you where I am. I also have
a picc line in and we dont know if I may need to go home with that in. Its
ok though everybody. I am going to get through this. Often they say BA kids
take two steps forward and one step back. A few more steps and I'll be
caught up. My bili count is still very high. So the doctors are starting to
wisper liver transplant. But I still think I can do it on my own so they are
letting me have some time to make it work.

MONDAY MAY 1, 2006

Today I went to see Dr. Meyers (my sergeon) She said my bilirubin count has dropped! She also saw my poopy diaper and stated and I quote " she's dumping some bile!" This is so great! Now we all know there will be ups and downs as is always the case with BA kids, but I sure enjoy the up days as this one is! However Dr. Meyers wanted to make sure that we knew it still wasnt enough bile. And that I need to pick it up more.I am on a diaretic to help me drop some extra water that I am retaining. Tomorrow daddy is going back to work. He is excited but heard that there are some trouble makers that are on his team who werent there when he left. That will be good for him to worry about some other kids "shit" other than mine. (daddy made me say that word, I dont talk like that).

SATURDAY APRIL 29, 30, 2006

Sunday I am going up to my uncle Bobs and Aunt Claires house for dinner. I am excited because I havent been there before...of course theres alot of places I havent been yet! Yesterday Mommy and I went on a walk! I loved watching the birds fly by and the trees wave in the breeze! I think I'm going to be one of those outdoor girls. Tomorrow I am going in to see the surgeon Dr. Meyers. My belly is still quite large and that has mommy and daddy worried. I am still giving off plenty of smiles as often as I can.

FRIDAY APRIL 28, 2006 9:35 PM, CDT

Today was an easygoing day, I spent all of it taking care of mommy and her swollen mouth. We are staying up at grandpa and grandma Aders for a while until mommy starts feeling well. Daddy sure is thankful for grandma Dawny when I start my morning exercizes! Tonight daddy brought both the dogs up to Grandma and Grandpas house and they just sit outside the window looking in at me. My poop is turning more toward the yellow color, but my jaundice seems to be getting a little bit better.

SUNDAY APRIL 23- THURSDAY APRIL 27

Sorry for the lack of updates! It has been a pretty busy week for everybody! Daddy and Grandpa Aders decided to take the boat down to lake powell to put hours on the new motor that Grandma Rose bought. While they were gone, mommy came down with a horrible tooth ache and went in to see the dentist. She had to have a bone graft put in her jaw on Thursday morning. I thought she needed a good pick me up, so while she was in the operation I showed Grandma Dawny what a nice green poop looks like! I've been saving up for about a week so it looked (wink) reeeaal niiice! Mommy is down and out with recovering, and Grandma Dawny and I are taking care of her. Grandpa Aders and Daddy almost sank the boat in Lake Powell!! Nice work guys!. During all this I went in to see doctor Book; she said that my liver looks more scarred. That makes everyone worry a little because all this is trying to prevent my liver from getting more damaged. However the Doctor said that if the Kasai starts to work regularly then perhaps the scarring could be minimized. They also said my spleen is still quite enlarged. I just smile at everyone and tell them to calm down. With time faith, prayers, and positive thinking this is going to work!

SATURDAY, APRIL 22, 2006 10:48 PM, CDT

Today daddy and his buddies went to the Red and White game. They ran into Brett Ratliff's parents and daddy even made Brett Ratliff throw him a "touchdown pass"... He caught it! Guess Daddy still has it. Brett and his family spent most of the time with the the boys. They loved that! Daddy expressed to Bretts mom how much inspiration her son and the Utes gave him during this time referring to their never give up attitude displayed this last fall. Daddy said Bretts mom started to cry and said she would keep me in her prayers. I spent the morning with Grandma Rose, she gave me a bath...LOVED IT! Then I drove down to Provo (Daddy says I need to call it "down south" from now on) with mommy, grandma Dawny, and Grandma Aders. I think it was a little too much driving for me because all evening I couldnt hold anything down. At 10:00 pm I finally held down a couple ounces of Pedialite. Mommy and Daddy say they don't know how I can be so strong, they said that in their hearts they believe I have more strength, and heart then both of them combined...they are probably right...what can I say? I'm one tough Ute!

FRIDAY, APRIL 21, 2006 11:28 PM, CDT

Average day, spent alot of time at Grandma Dawnys house while dad worked on their furnace. Had some difficulties keeping my meds down, but who wouldn't? I take 6 medications twice a day! Tomorrow Dad and Mom are going to the red and white game GO UTES! I get to spend time with Grandma Rose. For me it is a kick off to a weekend at Grandma Roses house because I will be there all day sunday.

THURSDAY, APRIL 20, 2006 11:20 PM, CDT

A great day! Good diapers, and I got to see dads softball team win their first game of the season...actually I slept through it, but it was good to be outdoors, and it was good to finally meet Avery, and Sophie (friends).