Made of Gray

An Ark...I'm building it

Holly D Gray7 Comments
Ok, I was building an Ark, but the sun came out briefly this morning and I packed everything up. It's been raining since Thursday. That's 4 days. We've lost power for hours on end and our rain gauge indicates that we've had over 10 inches. Caleigh's beloved pool sprung a leak earlier in the month and it was almost empty, but not anymore! It's full, green and ready to go. Sad, I know.

When the power was out it reminded Eric and I of some paperwork that we signed when Caleigh first came home. She was on 3 different pumps and needed so much medication. Not to mention all the TPN supplies that needed to stay refrigerated. Caleigh was considered a level 1 patient, with home health, if a disaster happened. Someone would come to our house and take us to a safe place with a generator if the power was going to be out for a long period of time. This weekend we made sure Caleigh's feeding pump was charged in between outages and really we could bolus feed her if needed. Oh, how things have changed for the better.

The weekend was low key. We laid around a lot and did laundry, cleaned, did some crockpot cooking (when the power was on). Saturday and Sunday Caleigh wanted nothing to do with sleep. Sunday she basically cried all day. We had no clue what was going on. We gave tylenol, thinking it was her teeth, but that didn't help. By bedtime her belly was hard so we 'helped' her out with a thermometer. Pooping proceeded and she fell asleep. We also gave her a little Miralax and by the morning she was all clear and happy. Caleigh's belly has been doing so well lately that I didn't even think about constipation. Usually it's totally the opposite. We all slept well that night.

Yesterday, Caleigh's vision therapists brought by a lightbox. They had been backordered since we started vision therapy a year ago. Caleigh doesn't seem very interested. They also brought by a TechTalk communicator. The one they brought has 8 grids and I think it's too much for Caleigh to start off with. I'm going to take it to Speech therapy with us this afternoon and see what we can do with it.
Here's Caleigh in her new stander. It's the Leckey Squiggles stander. The purpose of this equipment is to help Caleigh's bones stay strong. If you don't use it you lose it, i.e. bone density. We are supposed to work up to 30 minutes twice a day. Right now Caleigh has only done 20 minutes once a day. She gets a little antsy being all strapped in. So maybe today will be the day?

Here's Caleigh in her standard, run of the mill high chair. She doesn't have any support in it. The straps are the only thing holding her up.
On Friday, a PT from ECI met us at the house and made an insert for Caleigh's highchair. It's made with closed cell foam (a packing foam) and she cut it with an electric knife. It has a custom head support and lateral support as well. We are using the tray's pummel as the abductor support. It works for Caleigh. Apparently this is an old school method, and the foam is getting hard to find. The ECI PT that came out has done over a thousand of these. Our PT was there to watch and learn. Our Speech therapist set up the appointment. Everyone working together, what a novel idea. I'm hoping this quick fix will help with Caleigh's eating. Check out how tall she looks sitting up...
Yesterday, we took Caleigh for her allergy skin test. It took maybe 30 minutes and when we were done Caleigh had NO allergies. They test for close to 40 things and nothing came back positive. So the verdict is that she isn't allergic but she is intolerant to certain things. Go figure. Caleigh didn't cry at all and it was basically one of the easiest tests ever. It looks bad, but those red marks are just the scratches and they are completely gone now.
For those that are interested, I plan on firing our OT today. We had an appointment last Thursday too and it was horrible again, possibly worse than Wednesday's appointment. Wish me luck, I hate doing things like this.
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