There are a couple of things on the horizon for our girl...the first is another swallow study this Thursday. This a follow up to the Vital Stim therapy we had been doing for about the last 8 weeks of school. I guess this is to see if we are going to be able to safely feed her at home over the summer and to see if there has been any progress made since the previous study that was done in March.
So here we go again...I shouldn't put all my eggs in this basket, but to say that I will be disappointed if this doesn't go well is a huge understatement. How can I not be expecting something, just a little something after these 8 weeks of therapy? How do I reign in my hope and desire? I don't know how to do that. I don't know how to completely shut the door on her eating orally one day. Yes, I am hoping for some scrap of good news on Thursday.
The other thing coming up a little later in June will be SK's sleep study downtown at Children's. This is being done in an effort to gain a little more insight into SK's "noisy breathing" for lack of a better word. SK will be monitored for lots of things while she sleeps...things like O2 saturation, brain activity and breathing patterns to name a few. This is just to gather more information...does she need her tonsils and adenoids removed or does she not? Does she need some excess tissue removed from her trachea or does she not? The issue is that those things are interfering with SK's breathing. The question is...is it bad enough that she needs surgical intervention and do the benefits outweigh the risk?
We will once again take each step one day at a time. There is no benefit that can come from worrying over things that I have no control over. I do get scared and nervous b/c I want something to work out for her...to make things a little bit easier for her. I would just like for something to be nothing. Does that make sense? I would just like for something that we go in for to turn out to be absolutely nothing...what a relief that would be.
Well, back to the present. This week we have Vacation Bible School at our church. We are all looking forward to it. Sophie Kate had such a special experience last year. It was really the first time that she did anything like that. She had the sweetest teachers and some great experiences. I am back to teaching this year, so I will gather my group and we will all go together. It's another tiny piece of "normal" and I use that term very loosely coming back.
Thanks for checking in on us and please keep our girl in your prayers in the upcoming weeks.