Made of Gray

Summer Breezes

Holly D Gray4 Comments
JulyAFOs
With summer comes a bit of laziness with this blog. Relax, Swim and Repeat seems to be the motto around our house lately. Caleigh has enjoyed having friends over for swimming, shopping and weekly trips to the library. We've stayed comfortably busy this summer.
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Caleigh recieved her new AFOs with SMO inserts this past week. So far we haven't had any issues with the new boots. We will go back in a week to make sure things are feeling ok for her. This pair has been the easiest to transition to.
Caleigh's legs seem stronger and her balance is getting better. She is helping a lot more with standing and we have been doing standing diaper changes for almost a week now. The more we practice; the better we get.  Now to convince everyone else to jump on board. It's a lot of work to jump out of the routine, but there is dignity and self respect for our girl at the end of the day.

I've spent the last several weeks planning Caleigh's official kindergarten curriculum. This means I've spent numerous hours on Pinterest wasting my sweet little time. I'll call it research. Case closed. 

We are a few weeks from being done with the preschool curriculum that we started in January. This already had kindergarten readers and 2nd grade math. So we will just move up from there. I really want to work on independent reading skills this year. Caleigh is ready and she is very eager at this point. It feels like her love for math has relaxed a bit and her reading has picked up. She is doing well with beginning readers, comprehension questions and vocabulary spelling. Caleigh's attention span isn't as long as it was when we started the curriculum, but it's about age appropriate now. Teaching a non-verbal child to read is a challenge. There is pretty much no information out there about it. I think this is mainly because kids, in general, learn so differently anyways. Throw a challenge in there and you really narrow the research field. I'm slowly grasping Caleigh's unique challenges, but everything else is going really well.

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 This past week I changed Caleigh's feeding schedule quite a bit. She now gets a breakfast, lunch and dinner with about four hours at night. We are still running her feeding pump about 10 hours a day, but overall this is huge. So as we go up on volume the time will steadily go down. Eventually, and hopefully the night time feed will be obsolete. At our current rate of increase we are looking at least another year. I'm such a planner it's ridiculous. Haven't I learned anything?

Caleigh has recently shown an interest in drinking from a cup. She will ask for a drink on her iPad several times a day. She's doing great with swallowing. I'm really proud of her. I have to remember to bring one with us, which is out of the norm for this momma. Emergency seizure meds...check. Sippy cup...uh, nope.

It's taken all week for Caleigh to stop telling me to hook up her feeding tube at our old times. I guess her body was well aware of her schedule. Potty training became a mess too. The feeding schedule and the potty schedule go hand in hand. I'm hoping to regain some ground this coming week.
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We are in the process of ordering Caleigh a new stander and a new booster seat for the van. She has outgrown the stander's width and she is close to outgrowing her car seat. Something more age appropriate and with better supports is what she needs.
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We had to purchase a new iPad for Caleigh this past weekend. That's a whole story in itself; so I'll save it for a separate post soon.
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