Another Day In DC....

Submitted by Colleen and Derrick on Wed, 04/01/2009 - 2:37pm.

Devin was started on a formula that contains more fat yesterday. Unfortunately he is mal-absorbing some fat. Which is causing a change in the drainage color, but so far doesn't seem to be causing an increase in the amount. During transplant the lymphatic system is not reconnected therefore this issue will resolve on it's own over time. This varies in patients, it can take weeks to months. The good thing is so far it is not a lot... The bad is that his drain will need to stay in and be pulled out gradually over a two week period. In the grand scheme of things this is ok!!

Biopsy #8 is scheduled for the morning along with his Cytogam infusion.

Beautiful Today In DC...

Submitted by Colleen and Derrick on Tue, 03/31/2009 - 4:59pm.

Today, Devin enjoyed a beautiful day at the zoo.. We took him to Washington National Zoo. He had fun following the map and finding all the animals. It is very nice here today, in the mid 60's. Just hanging out waiting for our next Dr's visit Thursday. Thursday will be a long visit.. Biopsy #8 and Cytogam infusion (prevents CMV, a virus). Today, we changed formula to challange him a little. We will spend the next 24hrs watching him to make sure he doesn't have an increase in ostomy or drain output. Hopefully Thursday they will take out his staples too.
Thanks!! again for all the prayers and support.

Back In DC....

Submitted by Colleen and Derrick on Mon, 03/30/2009 - 12:51pm.

After a wonderful weekend at home we are back in DC. We had a good Dr's visit this morning. Dr. K was pleased with everything. We have reached the second phase of the eating process. First he was on 22 hrs of feeds so we were able to come off TPN. Now we are going to take him off feeds based on how much fluid he takes in by mouth the day before. He needs a total of 2500cc or 83oz. Hopefully this will give him anywhere from an hour to two off feeds which hopefully will make him eat more by mouth. It's a long slow process but he is making steady progress. GO DEV GO!!!!

Biopsy #7 was completely normal!! Thank God!!

Nice Relaxing Weekend...

Submitted by Colleen and Derrick on Sat, 03/28/2009 - 9:24am.

We are so happy to be home in our own house... I was a little nervous leaving the DC area for the weekend, but things are going quite well. Devin seems much!!! more settled here. He is eating better and definetly sleeping better. It is great spending time with Raymond and Caitlin. Tomorrow is Cait's birthday!! so I am very thankful that I am able to spend it with her. Devin was able to get some good quality time with both of them too.
Many of you have asked "how are we getting him to go back" I left some of his toys there and some of his favorite blankets. He also understands that he needs to see the dr's to make sure his new belly is working right. He has really been a good sport about the entire thing... He has been cranky! nasty! and bossy! but lets face it, who wouldn't have been??

We were hoping for some nice sunny weather, but it is raining here... So we'll just be hanging around the house...

Maybe, Cait and I will sneak off for some quality girl time!

SHHHHHHHH....

Submitted by Colleen and Derrick on Thu, 03/26/2009 - 7:06pm.

I know word has leaked out that Devin has been seen... Yes, we are home for a trial weekend. Unfortunately his blood counts are very low from the immune suppression. So.... lets hope for a nice beautiful weekend so we can get outside in the fresh air!!. Unfortunatley if the weather remains bad we can not have visitors over our house because we can not risk exposing Devin to any illnesses. Thank you for all your love, prayers, and support!!!