Tuesday, January 27, 2009

Daxtons progress

Last week we had clinic and Daxton had already gained one whole pound after the g-tube!! We were really excited and he seems to continue to chunk up. His white blood cell count was up on Thursday he seemed to have alittle bit of something but that quickly passed and now he is doing just great.
We had the physical therapy come yesterday and evaluate him to see where he was in terms of development delays. In cognitive and social he is right on track. We are just hugely lacking in motor skills; sitting up, rolling over, holding head up when on tummy, etc. They said he is at about a 2 month old level. They said not to feel bad, I don't. He has accomplished and been through so much already in his little life, I don't expect a lot from him and I know that he will get there in time.
The other day while I was at the high school a student came up to me and told me that her uncle had a heart transplant when he was one, he is in his forties right now and he is doing great. And the best part is he hasn't had to have another transplant. That made me so happy and hopeful.
Isn't that amazing. And forty years ago, think of how much better everything is now, the meds, the research, everything!! Miracle!!
Some other great news is Daxton is off one of his major rejection meds, his steroid. This has been a five month taper and we are finally off. The transplant team said that we would be able to take him out some, as long as no one was sick. I have even been able to take him to the store. It has been really nice to have a little bit of freedom. We are still super careful with RSV season, but we are getting there. Daxton was able to go to his first big Tonge party on Saturday, we celebrated his Great Grandma and Great Grandpas Birthdays. It was a lot of fun.


Callgirl said...

It sounds like things are going well for you. Yeah! I bet Daxton is looking chunky compared to before. He is adorable. Good luck with the play. Talk to you soon.

Leslie said...

That is so wonderful! What good news! So much has transpired. You're amazing, and he must be such a tough little cookie. Please post pictures again soon. Love you.

Orley said...

Chunky!? We boys, who are a bit larger, prefer the term 'thinly averse'. Please correct this in future blogs. Daxton, Ryan and I are people too... Also, 'fluffy' is an acceptable alternate term.

Mindi said...

So glad to hear about your victories. Chunky is good and yummy on little guys. It sounds like you'll be able to nibble away at him very soon. All out best to you always.

Mindi and McKay

Hilary, Ben and Ella said...

Hey Hilary, I just found your blog on Tara's blog. I had wondered from looking at your facebook page what was going on. There was some mention of being in the hospital and last time I saw you, you were pregnant with #3, so I was concerned about you guys. I read your profile and WOW, I can't believe all you have been through!! We are happy to know that he is improving. We'll be checking out your blog for updates! Take care.