Wednesday, September 3, 2014

Cora's Update

There are little tidbits about Cora's health that I keep forgetting to blog about. After we got home from our summer visit to TF, she had six various specialist visits. They all went extremely well (minus the neurologist) and they don't need to see her again until March-May of next year. Yay! I've never gone that long without doctor appointments for Cora so it'll be nice to have such a long break.

About two weeks ago she saw the Ophthalmologist again and he was stunned! There was a resident doctor who was there with him and he said, "You should've seen this baby five months ago....1000 times better! Oh my gosh!" He was amazed at how well she looked and was doing. He didn't do an eye exam or anything and I only had one question: she tends to have watery/teary eyes all the time, what does that mean? He said she's got a plugged tear duct or something which is an easy surgery fix and he can do it at the same time as her heart surgery. Win, win!

She STILL has this chronic congestion/cough going on. I called the GI doctor to see if she could get me a referral to a pulmonologist (we had discussed this option if her upper respiratory didn't improve after the surgery). She called me back and said she'd get me another referral to the ENT we saw earlier this year. I don't know what the problem is or what's causing this, she's had it since she was born. My gut feeling is that she's still aspirating. It seems every swallow study we do we find that she's aspirating, try to fix it with thickening her foods, and then a short time later she starts aspirating again. I'm not sure what to do about it all, she doesn't seem to be outgrowing it which was my hope. If anything, it's getting much worse.

I finally started up again introducing solid foods to her. I had to quit about a month ago because of her cough and then again because she had mild HFMD. Last week I introduced a probiotic to her diet which she's been on for a week and seems to be handling it just fine. I don't really see any difference in her digestion at all, maybe it takes more time to work. Today I started her on squash.....crossing my fingers this goes much better than the carrots!

She's had a long break from her physical and speech therapy, today we started back up again and I've been so anxious to get them back! Especially her PT, she does wonders for Cora and I always notice a huge difference, I'm always amazed at Cora's progress at the end of the session.

Overall, she's still doing great and making good progress. I wish her eating and digestion was less complicated, it seems to be the crux of the majority of her problems. But we continue to hope and pray and trust a loving Heavenly Father. I try my best to work with her everyday, she's shows so much motivation and absolutely astounds me.

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