I have been negligent on taking pictures and posting Ellie's entourage on Facebook. That is not to say she isn't packing everything, but the kitchen since in her backpack. Far from it. She is MacGyver. A boy scout of the "always be prepared" sort. Some of the more entertaining items (aside from the fork):
Plug to the bathtub
Receipts (tons of receipts)
Apparently, Ellie thinks she is going to be doing some cooking.
Andrew and I have been going on date nights lately! We have this awesome respite care provider, but she left for college this week. Arms crossed and foot stomp at this development. Anyway, we have been trying out different restaurants and recently went swimming at Barton Springs. It was so cold I couldn't even catch my breathe. Of course, Andrew spent the evening telling me that the water felt great.
I would love to have a blog post without medical updates, but unfortunately, it will not be this post.
Today we had an appointment with Chest and Sleep Clinic. A while back, we learned that Ellie had obstructive sleep apnea. We did a lingual tonsillectomy and glossectomy (tongue surgery). With a repeat sleep study, we learned that the surgery did indeed help alleviate some of the obstruction. Unfortunately, she seemed to have developed central sleep apnea (basically the brain forgets to tell you to breath). A brain MRI revealed no organic cause for central apnea. Because she refuses (actually is quite combative) the CPAP, we are now starting her on oxygen at night. Fingers crossed she tolerates it. I plan on putting on the nasal canula after she is asleep.
|I made Belly Bands to cover up Ellie's C-tube so that she doesn't play with or pull at it.|
Ellie's cecostomy surgery date is still tentatively for Sept. 12th. Yes, it is still kind of sort of up in the air. I am not happy. I like things set in stone. We have two urologists in the OR. Both agreed that they were free for OR time on 9/12. However, they are still deciding on how they are going to approach this surgery. They may need a radiologist in the OR. If that is the case, they may not be able to coordinate all 3 people which may mean a different surgery date. Of course, the one urologist it out of town. Seriously, they are always out of freaking town. She needs this surgery sooner rather than later. Last week, Ellie had to be catheterized at the pediatrician due to a UTI and urinary retention. Constipation can lead to urinary retention. Ellie was doing so well until she well, wasn't. She was crying and signing potty, but could not go. Fortunately, the catheterization fixed the problem. I do not want her to go through all of that again.
Hopefully, the next time I blog, I will have more exciting news to report. No wait, boring. I would love for life to be boring!
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