Made of Gray

And so it begins

Holly D Gray4 Comments
Our trip down special needs equipment lane has started. I've been holding off. Mainly because if it doesn't happen, it isn't real, right? Well, it is. Now that Caleigh is getting more active her weak areas are showing up and now is the time to start treating those.

So to start with, our PT has ordered a Theratogs Suit. This will replace the Kinesio tape that we have been using. Just like the Kinesio tape, Theratogs give a little stretch and feedback to each muscle group targeted. The Kinesio tape has been irritating Caleigh's sensitive skin. So I'm excited to be getting rid of it. We will be getting a full body suit, but will probably only use the tank top and arm section of the suit at first. It will go under Caleigh's clothes during the day. Hopefully we will get it within the month.

The next thing that is being ordered is a hand splint for each hand. When Caleigh is working really hard, her spastic tone kicks in and her hands make a tight fist. We do stretches everyday to keep this pattern from 'sticking.' We tried a glove on for size today and it was really cute and so tiny. They are called pediatric gloves and we get to pick what color we want. I haven't decided if we want pink or purple. These gloves will give Caleigh more use of her hands during the day.

We had also ordered a fabulous, normal, new, & expensive high chair for Caleigh. So fabulous in fact, that it didn't work at all. I was bummed. This led me to face the music and go for something more supportive. I researched for what seemed like forever, but I finally decided on the Special Tomato Soft Touch Sitter. The harness and adjustable seat will hopefully make meal times easier. And maybe, just maybe, Caleigh will sit in it to eat. We should be getting the new chair somewhere around mid-February.

This past week we made another visit to the cranial band office. No changes were made to the band. Caleigh mainly wears it while she is sleeping. About 13-15 hours a day instead of the 23 hours they want. It still falls in her eyes when she is on her tummy. So I've given up on trying to make it stay. She may have to wear it longer this way, but our sanity will stay fairly intact.

We also made it to our 6 week GI appointment. Everything is going so good with Caleigh that the appointment was mainly a chance to catch up on what's been going on. Caleigh is now 50th percentile in weight and 15th percentile in height. Our goal is to slowly grow and gain weight at a normal rate now. We discussed calories and fluid intake. Caleigh needs 600 calories a day and 900ml of fluid per day. Her fluid intake was considerably lower, but she wasn't showing any signs of dehydration so I didn't think to much about it. All last week we were having issues with feeding, as you could tell through my last post. We started Caleigh on a fluid program with half water half pedialyte a few days ago. The changes are just amazing! Caleigh actually wants to eat and her fussiness is gone. What I thought was teething really ended up being a dry baby. Her mouth was moist and she was having good wet diapers, but she just needs more fluids. The life of a short gut kiddo. I guess I would be cranky too if I was thirsty. This means that Caleigh is hooked up to her feeding pump more throughout the day than she has been, but the results are worth it. A wet baby is a happy baby.

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