Made of Gray

So Over It

Holly D Gray7 Comments
I woke up this morning refreshed. A sense of calmness and joy present. After the much needed cry and a few good nights of sleep I feel better. I think Caleigh decided to take it easy on me and only woke me a few times each night. It helped.Everyone's comments were great and I do realize that we are not alone in our journey. We have great friends and family...wonderful even. The notion that they are still around after everything that has happened is truly amazing. The truth of the matter is that we haven't been great friends back. We are absorbed with Caleigh and her needs 24/7. I try to make an effort to be the Holly that I used to be, but I know that she is forever gone. I'm over it for now, and feel much better today.

So...on to the official Caleigh business. We had a GI appointment yesterday and all is well. Caleigh's labs came back and the only thing off was her Vitamin D level. It's low. I'm waiting to hear back from our doctor on a plan. Normal range is around 33 and Caleigh's was 14. Recommended dosage per day is about 400 IU. Caleigh gets about 1000 IUs. So she's getting quite a bit. Vitamin D deficiency can cause soft bones, rickets and osteoparesis. Caleigh already has a history of fractures and soft bones due to her TPN dependency. Hopefully, we get this figured out and cleared up soon. She's doing so well in the GI department that we don't have to go back for another 3 months. What will we do with our time?

Today we got Caleigh's Benik hand splints. Unfortunately, they are the wrong kind. Apparently, there was a communication error somewhere between our OT the durable medical equipment company and the guy that came out to measure Caleigh's hands. I'm pretty sure it fell flat with the guy that came out, but we'll see. So our OT is in contact with the DME and hopefully we don't have to wait a long time before we get the correct ones.

About a week ago we got Caleigh's Theratog suit. That's it in the pictures. The suit takes the place of the kinesio tape that Caleigh has worn for some time now. This is a good thing because Caleigh's skin was having bad reactions to the adhesive in the tape. The suit gives Caleigh's muscles feedback when she is extending or being spastic. I wasn't the best about putting it on in the beginning, but the past couple of days I've really been on top of it. I think it is helping her bend her arms better and her hands seem more relaxed. I've seen tiny improvements in just the last few days, and that's exciting. The only down side is that the suit is tight and warm. So when we hit that Texas 110 degrees she may not be able to wear it for very long periods of time.

This morning I woke up ready to tackle feeding Caleigh again. I blended organic carrots into a puree and we worked on eating them before each feeding time. I held Caleigh, had the carrots very cold and the spoon cold as well. She did really well and took about 20 bites each time we tried. Tomorrow, I'm going to start blending carrots for her g-button as well. We are also going to feed every 4 hours again instead of the 3 we are doing now. Caleigh's swallow study is scheduled for April 28th and after we get that information hopefully we will know a little bit more. After the Baylor feeding evaluation I ordered a Z-Vibe sensory kit. I just got it in tonight. It came with a vibrating spoon that I will be trying out tomorrow. I told Eric today that I'm ready to battle with feeding Caleigh. I thought about it for a moment and then changed my mind. It's not a battle, it's not a's a pleasure to BE able to feed my child by mouth. The fact that I CAN feed Caleigh no matter how much that may be is a miracle. Caleigh didn't eat anything for the first year so why do/did I have the notion that she should learn to eat in a few weeks? Patience young grasshopper....

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