Made of Gray

Wiggle Crawler

Holly D Gray9 Comments


She's moving folks! Caleigh has been doing the wiggle for a few weeks now. Of course it's not all smiles, giggles and happiness. Caleigh usually starts out with that look of determination in her eyes, but it quickly turns into crying and frustration. I'm pretty sure it's frustration. Who knows? All I care about is that she's moving and pretty darn good by the way!

We made our way to the infamous endocrinologist appointment yesterday. Our appointment was at 9:15 we weren't seen until 10:45. When we were seen basically we were told that since Caleigh isn't having the dumping syndrome symptoms right now that they really couldn't do anything for us. He didn't charge us for the visit and apologized for our wait and wasted time. So he was correct...the problem is under control. I left wondering if Caleigh would have to be on continuous feeds forever. Bolus feeds were causing the dumping syndrome. So where do we go from here?

Tomorrow we take Caleigh to do some more blood work. A renal panel, allergy testing and a vitamin D level. Then on Friday we have a follow up appointment with our GI doc to go over things and come up with a plan. The plan maybe to wait and keep doing what we are doing.

Speaking of allergies-- Our chiropractor did a muscle allergy test on Caleigh yesterday. It is an Eastern medicine practice. So some believe and others don't. You can google it if you want to. This is also to test for sensitivities not just allergies. Here's what she found:
Peanut
Carrot
Milk
Almond
Curry
Wheat
Now, these may just be sensitivities or they might be allergies. We are doing labs for allergies, so well see. I believe the carrot finding! Caleigh did horrible when we added carrots to her feeds. The milk finding is understandable too. Real or not, it gives us an idea of things to limit or stay away from. I thought that curry was funny....no India food for Caleigh, HA!

We weaned Caleigh's seizure med, Keppra down again this week. We only have 2 more weeks before she is completely off of it. Her progress is very noticeable to us. Babbling more, happy more, the wiggling, the sitting and Caleigh's head control is slowly getting wonderful.

With Caleigh's new skills I've been looking into communication devices. Basically we need to start with actually objects and a choice board. With Caleigh not being a big fan of food it's going to be difficult to get her motivated to choose things. From objects we will move to pictures. I've been told that she will learn all of this when she is 3 and starts school. I don't like that answer. I don't want to wait. Anyone out there have any suggestions or sources?

Things are staying busy with follow-up appointments and trying to catch up with therapy missed. Hopefully everything will settle into a routine soon.

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