We have just been Hanging out at the house having fun. We keep ourselves entertanied with the kids and the olympics. Gunner is a huge handful of fun and that is an understatement. He is always on the go and into something, finding food to fuel his growing body,tormenting his older sis, or just catching frogs,squishing bugs,or riding the 4-wheeler.
Brooklyn is just as girlie as a girl can get. She is always wanting to help with everything. She just started pre-school and is loving it. She enjoys playing dress up with her cousins Ashley and Addie Kay she loves playing Salon they all want to be Tia Ault and do your nails, hair, and wear highheels. She likes to flip her hair and shake her hips and sing and dance. She is awesome at somersalts. We will have to sign her up for tumbling, she loves the gymnastics on the olympics.
Jaclyn is doing well we can get some good belly laughs from her. But, everytime that camara comes out she will just stare at it. No Smilin' stinkin thing.. Her aunt Karah even tried today and she is good check out her blog karahlynnphotography.blogspot.com, little plug.. but, Jaclyn is very happy and very spoiled we don't like to ever put her down. We have an appointment at the begining of next week in phoenix with the specialists, so we will see what they have to say. We have been seeing a pedia Dr. in Showlow as well who is familar with her liver disease Bilary atrisia and he seems to think she is doing well he thinks we need to get on the donor list right away just cause it could take some time to find the right match. The specialist told me not to be surprised if he puts her on the list within a month or so. He said if one comes in two months if she is doing well we may say no and put her back on the list again. The surgeon seems the most optimistic he tells us he would be thrilled if she made it to 10 yrs. That is the average age that the Kasai surgery last that's the surgery Jax had done in the hospital. They say that 95% of the babies that have the Kasai surgey have a transplant by age 21. We told the dr. 's so our little girl could be the miracle baby that is the other 5% that still doesn't have the transplant after the age of 21. They don't think it is very likely though they said her liver is pretty bad off it is bridge fibrrosis , that means right next to cirrosis. Cirrosis is scaring that can't rejuvient it's self , it can't grow past the scarring point. Fibrrosis is scaring but, it can repair itself. That's why I still felt optimistic. The surgeon told us he was surprised when the results came back fibrrosis, he said that her liver was very hard and looked really bad. that's why they think the transplant will be sooner more than later. But, she is a fighter and she surprises them all the time she has been doing well with all of her labs (drawing blood, testing it) she has good #'s , and is acting very happy and healthy other than the bad liver. We'll just wait and see what the Doc's have to say in a couple days???? Thanks again for all the thoughts and prayers they really do help and we feel them... thanks again.
Friday, August 15, 2008
Just US Hangin' Out
early to narrow them down.... to the perfect one!
Grandma Flake stopped cooing at Jax for just a sec while she
glanced up at the olympics...
Grandpa Flake and Jax spend a little quality time
sleeping together....
hate'em
Tuesday, August 5, 2008
Welcome Home!
After three weeks at Phoenix Childrens Hospital, Jaclyn is finally home. Her swelling has gone down a ton and her stomach finally almost looks normal. She will still have to be on the feeding tube for 20 hours a day so we got trained on how to put her feeding tube in and take it out. We are so happy to finally go home, but a little nervous to be doing it on our own now. Thank you to everyone who has fasted and prayed for us. We really appreciate it. We will know more in the coming months wheather Jaclyn will be needing her liver tranplant sooner or later.Monday, July 28, 2008
Sweet Baby
Brooklyn, Gunner, Jeremy and Ashley got Jaclyn this little red elephant from the gift shop and she thinks it is the greatest thing ever. She stares at it all day. Jaclyn has been doing much better the past two days. She has lost a centemeter in her stomach and has seemed much more comfortable and relaxed. The swelling in her legs has completely gone away and they look like they use to again. Slowly but surely she is getting closer to getting out of the hospital. Today the doctors said that when Jeff gets back from Snowflake they will show us how to get the feeding tube in and out and we will hopefully be able to feed her bottles during the day at home and put the feeding tube in at night to ensure that she gets all the nutrients that she needs. She always lays with her head really far back. All of the nurses that are new come in and say stuff about it but we just have to tell her that she has always liked to lay like that. They are also all saying that she looks like a Who from Whoville with her hair in a little curly mohawk.
Enjoying her animals
Her legs back to normal size
The nurses were keeping track of a red patch on her belly with this tape, but the surgeon came in and said he was not worried about it.
Once again enjoying her animals.
Thursday, July 24, 2008
Week 2
Just thought this picture was funny, Jaclyn had a little plumber when she got all unwrapped from her blanketJaclyn has now been in the hospital for almost 2 full weeks. She has not been having very good feedings. They put her on predigested formula as soon as she had her surgery and she doesn't seem to like it much but eats it since that is all she gets. Her poor little tummy gets swollen even more every time she eats. Since she had not been eating as much as the doctors were wanting her to they decided today that they needed to put the feeding tube back in. When she was having her feeding this afternoon her belly started to get really swollen. We called the nurse to have them check it. The nurse from this morning had to come check it out to make sure that it was really getting bigger. She agreed with me so they stopped her feeding and ordered an x-ray of her stomach to make sure things were looking good. When the doctor looked at it he said that she just has so much fluid in her stomach from the surgery and her stomach and liver are swollen so she doesn't have much room for food. They have been giving her medicine to help her body absorb the fluid so that she can pee it out. Since it is not helping enough they decided that they would start to give her a little more. They just want to be extra careful since Jaclyn is so small. They measured he little belly tonight and it was measuring 54.5 cm which is about 21.5 inches. They said that she probably feels like she is about 15 months pregnant. She is a tough little girl and is hanging in there. She is very content in mommies hands and only moms hands.
Wednesday, July 23, 2008
While the parents are away...
While Mom and Dad have been down in the valley taking care of baby Jaclyn, we have been causing lots of trouble. What else do you expect us to do. Gunner collected beer cans at the Flake Rodeo, we watched a parade, played with a puppy and ate LOTS of candy. Hope you are having fun mom and dad because we are!
Subscribe to:
Posts (Atom)