Hey everyone. On Monday, Samuel went to see his pulmonologist, Dr. Newasker. She’s the person who’s be working with him on how to wean him off his oxygen. One of the critical factors in coming off oxygen completely has been to pass a sleep study, which took place about three weeks ago.
At any rate, Dr. N. spoke with Kristen about the results, and the bottom line is he needs to stay on oxygen at night for a bit longer. And by a bit longer, I mean until March, 2017. During the sleep study, he had a few results that were problematic, and it looks like he had some sleep apnea. So we’ll continue to put him on oxygen at night and during longer car trips. He has no issues being off oxygen during the day or for short (less than 2 hours) car trips.
This is disappointing to me, but we’ll do what’s best for Sammy. I really love seeing him without his face stickers and oxygen tubing, and I know he likes getting this stuff off his face too.
He was supposed to have his swallow study again on Tuesday morning, but he’s been under the weather – so has Jacob – and we delayed it. I think Kristen said it’s now scheduled for sometime in late November. The swallow study will help tell how his vocal chords are working, and if he’s able to start taking a bottle. Previously he was aspirating a tiny bit into his lungs, but a tiny bit is too much. He gets some Stage 2 food now and he seems to love it (most flavors anyway). He also handles it without any aspiration, so hopefully he’ll be cleared to take on more. Feeding him through his G-Port is painful, as the area is often red and irritated. I really can’t wait to get him off that feeding tube.
Sammy’s also seeing his physical therapist weekly now, and Laurel is really impressed with his progress each week. He’s working on tummy time and strengthening his upper body muscles, his core, etc. He’s now able to bring his hands to his face, and if you put a toy in front of him, such as on a mobile, he’ll reach out and touch it most of the time. He still has a long way to go before he’ll sit up on his own, or even hold his head steady on his own. But the progress is definitely noticeable. We have to give credit to Stevie for this too. She’s really been working with him each day and the progress shows.
Anyway, that’s it for now.