Here is Samuel's new lip, 2 weeks after the operation:
While not quite on track age-wise developmentally, Samuel is beginning to roll around a good bit and enjoys his time on the floor - even if he doesn't stay where he's placed:
Samuel isn't the only one with stuff going on. Here are a few pics from AC's and Colin's recent weeks.
first day of school for them this past week (2 day a week preschool):
new bunk beds! no more blow-up air mattress on the floor for Colin (or stealing space from his sister in her bed!):
These pictures really only tell part of the story. We did wind up spending this past Wednesday night in the hospital. Samuel had significant trouble with breathing Wed evening and it was better to be in the hospital being monitored than at home worrying. We were in just over 18 hours and since then he has done much better. Frequent nebulizer treatments are helpful. We think it was brought on by the procedure he had done Wed morning (renal scan). He was sedated for that instead of being under general anesthesia, which seems to have caused an increase in secretions which he doesn't handle well. So, we are assuming there was some aspiration going on, even though the chest x-rays were clean.
At any rate, just a minor hick-up, I guess. Overall and otherwise, I think we are doing fairly well. As noted above, AC and Colin started their school this past week and we are hoping that Samuel will be able to begin at The Wonder Center here in downtown Greenville soon. We are planning on him being there for 4ish hours, 3 days a week. This is basically a day care for medically fragile kids. It is staffed only by nurses with PICU and/or NICU experience. Because of where it is located, Samuel will be able to get his therapies done there as well. So, with these new routines, we hope to get into something of a rhythm in life. We'll see how it goes.
Thank you for your ongoing concern and prayers for us. We continue to be in need of them.
At any rate, just a minor hick-up, I guess. Overall and otherwise, I think we are doing fairly well. As noted above, AC and Colin started their school this past week and we are hoping that Samuel will be able to begin at The Wonder Center here in downtown Greenville soon. We are planning on him being there for 4ish hours, 3 days a week. This is basically a day care for medically fragile kids. It is staffed only by nurses with PICU and/or NICU experience. Because of where it is located, Samuel will be able to get his therapies done there as well. So, with these new routines, we hope to get into something of a rhythm in life. We'll see how it goes.
Thank you for your ongoing concern and prayers for us. We continue to be in need of them.
10 comments:
that Wonder Center sounds great!
I was thinking of you guys and praying for you this morning. Thanks for the update. Samuel's lip looks great! The Wonder Center sounds like a wonderful place. I hope it gives you and Sarah a break and a chance for a routine. Keep us posted.
the wonder center will be a great place for Samuel and should allow Sarah some rest too. So glad that you will be able to get that set up!! Samuel looks great!! Such a cutie - so impressed with his rolling! Wish Cohen would follow Samuel's lead!!
Samuel's progress is wonderful! How exciting for you all. Glad Anna Catherine and Colin are enjoying their new transitions too.
We are so happy for Samuels rolling!! That is exciting!!Lets try to get our Sams together soon!
love, Rachel
So great to see and hear the progress! We continue to pray.
Has Samuel started the Wonder Center yet? One of my friends is a nurse there. She loves her job & speaks very highly of the services there. I'll tell her to take extra special care of him. What a blessing it will be to know that he's in excellent hands while you can get a bit of a break.
Go, Samuel, go! What fabulous rolling you're doing, strong boy!
Chris and Emily left a comment on my blog via another blog we both read, letting me know about your family - our daughter Vivian, 13 months, has CHARGE also.
I wanted to stop by to say hi. Your family is just lovely, and I will be sending all prayers and healthy, healing thoughts your family's way. I'll look forward to peeking in on you. This is quite a journey, isn't it?
Best, Hannah (and Vince and Vivian)
Samuel looks so beautiful!
Just found your blog through Cohens. Our third son was also diagnosed wiht a very rare symdrome 1 in 300,000. RTS, it has been difficult, but we are doing much better a year into it all.
Samuel is beautiful!
I am excited to follow his progress!
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