So much has changed since the last post. Oakley is off the ventilator 24/7, he has weaned off most of his meds, and he's getting decannulated next week! That means he won't have a tracheostomy any more, and he'll be pretty close to normal! We are hoping that with decannulation, he'll be more likely to eat things orally, and we can start feeding him like a normal kid, but I'm trying really hard not to get my hopes up.
Since coming off the ventilator, he has also switched his feeds from continuous to bolus feeds, meaning he's also not connected to his feed pump all the time. He's actually graduated to blenderized foods, which is more work for me, but way better for his stomach. He gets his food through a g-tube with a syringe 5 times a day, and that means he's only hooked up to his insulin pump! With that, he's become SO active. He has a hilarious scoot that looks crustacean-like. He also pulls himself up on everything, and can walk, holding on to things for balance. He is still tall, so he can reach things off the bathroom counter, the tea off of the cabinets, about 1/2 of the things stored in the pantry, and anything off the couch, coffee table, ottoman, etc. Pretty much, nothing's safe from his reach.
He's got a pretty good vocabulary going. He calls our dog, Hennessy, "Henna," can say XBOX and play pretty clearly, says "Hey, Hi, Heyyo, and Byebye" with a wave. He calls me Mom, calls Trevor mom and dad, depending on his mood, and can say "up and NO" with attitude.
He's tall for his age, 33 3/8" tall (90th percentile), as of yesterday, weighs 24 lbs 4 oz (49th percentile!), and is more social than typical for his age. His doctor was amused by this, because he's supposed to only want mom and dad, but would rather flirt with strangers than sit on our laps...I think this is because he's had so many great nurses and doctors in his life, he just loves people!
He also loves dogs. Hennessy has been great with him, even though he regularly is too rough with her. He pulls on her lips, pokes her eyes, pulls her ears and tail, and climbs all over her. She growls at him when he messes with her feet, but she really puts up with a lot more than she should have to.
Oakley was scheduled to have his trach out last month, but got a cold a couple of weeks beforehand, so his doctor decided to postpone it. He is now set to get admitted to the hospital on Tuesday night for observation, have a bronchoscopy on Wednesday (and his MSTI doc will do a bone marrow aspiration), and after he's awake and recovered from that, pull the trach out. If all goes well, we'll get to come home Thursday, trach-free!
The bone marrow aspiration is to check his 1 year post-transplant counts, to see how his chimerisms look (the percentage of donor vs host numbers in his B cells, T cells, etc). His immune system has been looking really good, but he's still not supposed to be around sick people. He isn't allowed to get immunizations quite yet, so we're not supposed to be around large groups of people (I'm going to devote a post to immunizations and stuff, because it's a hot button issue for us).
We didn't do anything fun for Oakley's 1st Transplantiversary, we just hung out as a family and enjoyed the fact that we get to. We did, however, all dress up for Halloween. Trevor isn't a big fan of Halloween, since he grew up diabetic and didn't eat a lot of candy, but I love any excuse to dress up! We went with a family theme this year. I was a mermaid, Oakley was a soctopus, Hennessy was a shark, and Trevor was a fisherman-but changed to a swimmer when he got too hot! Oakley and I went to the HODIA (Idaho diabetes camp organization that Trevor grew up attending) Halloween party for a little bit the week before, and on Halloween, we took some pictures, greeted Trick or Treaters, and my parents came over to visit.
It's been a great 6 months, and I'll try to post more often, now that more is going on!
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