Wednesday, October 21, 2009

Day +40.....and OFF OF OXYGEN!!

Hello!! Has it really been 40 days since his transplant??! It seems to have gone by sooo fast! And I guess that is a good thing. Only 20 more days until they do the engraftment testing. Remember that we want 100% donor cells and 0% Dylan cells--please pray for that. The doctors are confident that this will be the result, so that is very exciting. On Sunday I asked for you guys to pray that D would get off of oxygen soon....and guess what? NO MORE OXYGEN!! This is a huge praise once again. He hates having the nasal cannula in his nose and is always tugging on it and itching his for now, it is gone!! Right now the struggle is eating. He seems to want to eat, but it often upsets his tummy and he ends up throwing it up. Monday he decided not to eat at all and just kept throwing up chunks of mucous. I know that sounds digusting, but its even more sad to watch. The poor lil guy just struggles and cries until he can get it out. He did that same thing tonight. Nothing seemed to make him happy and he just kept crying....and then finally...the whole once he got down earlier came back up. :( It's so frustrating for both mom and Dylan. I want so badly for him to be able to enjoy eating again and get back into a normal schedule. For now, until he starts eating regularly, the docs have him on hydration with vitamins, and are giving him steroids to make him a little bit hungrier. It's a trial and error time. Please pray that his tummy heals quickly and that he can soon eat normally and keep it all down. He gets so excited to eat sometimes, only to feel icky later. There is only so much of his sad cries that I can's so hard :(
On a lighter note, he is growing well. His weight, along with fluid intake, is finally under control. He now weighs 15 pounds and is almost 25 inches tall. He is responding well to those around him and is flirting again with the nurses. He is opening his eyes more and more every day, but his left eye is a little bit lazy. We are hoping that this goes away with time--but it does not seem to bother him. Developmentally, he is pretty much like a newborn again--at least with physical strength. Before transplant, his legs were getting really strong, along with his neck and back muscles. Now, when you pick him up, it's like holding a newborn. He neck is wobbly again--I call him my little bobble head. He does not seem interested in using his legs at all and they are very weak. We know that he will have the rest of his life to regain his strength, but it is still very hard. The great thing is that he is still super cuddly and loves to snuggle!! Every time I start to get frustrated about something, he just flashes me one of his smiles and all of my worries go away!!

Well, I better get back to the munchkin, thank you for praying for our precious boy!!




  1. He is so stinking cute. I miss the little man like crazy. I will be praying that he is able to eat soon without throwing it up. I can't wait to come see you guys. It will most likley be next weekend if I continue to recover. I need to shake this cough and runny nose before I can see our little man. Give him kisses from Marky and I. We love you guys.

  2. Hi Michelle, It is incredibly hard to see your baby want to eat just to throw it all up again....we are sure praying that his tummy settles and his food stays in him to help him grow.....Bailey started to lose her hair today.
    I know it will grow back but it is still hard to see..... hope your day is going well...Erin from Mich.

  3. What a beautiful little boy! I'll add my prayers to the chorus singing them on his behalf. May God bless your entire family with continued strength and hope through this challenge. It sounds like he's doing well and making good progress. What a strong little guy!