We got lucky, and this was the BEST case scenario we could ask for. This is awesome. We know to expect that he'll be admitted a few times throughout the high cold/flu/respiratory illness months. I can deal with that. We also know he's going to have a low threshold for work that may require added pulmonary support, like running, learning to walk, roll over, etc. But, we can work on helping him work on all those things. Not so bad, right?
The name of the disorder he has is NEHI (neuroendocrine cell hyperplasia in infancy). This is REALLY rare, so it's not 100% surety that he'll outgrow, but most of the known cases of it have indeed outgrown it. So, the odds are very much in Little Guy's favor. That works for me. I consider myself very blessed to know there is a light at the end of this tunnel for him.
We still have to work on the obstructive sleep apnea, which he may also outgrow. He's have a sleep study in September, and we'll go from there. No matter how you slice and dice it, though, he doesn't have the inoperable brain tumor they thought he had, he doesn't have cystic fibrosis, this isn't going to kill him, and more than like he won't have to live with this for the rest of his life. So, yeah. We are pleased. We will embrace what we do have to work with and be grateful for what it is...and what it isn't.
Oh, what good news! I'm praying that your fall and winter is as cold and flu free as possible. I'm also praying that he'll outgrow it- goodness you guys have had a busy and stressful couple of months!
ReplyDeleteOh what a blessing.
ReplyDeleteHello ... I just found your blog through Leah's (Say What). We just moved last Oct. from the DFW area to the Northeast ... I truly miss it there and our wonderful team we had to leave behind! Our son was diagnosed with profound hearing loss there and it was there that I found peace of mind and comfort through our wonderful team! Your children are adorable and I look forward to following your blog!
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