Summer Breezes

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.

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.

 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.

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.

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.

Beating the Heat

The past few weeks have been filled with swimming and staying indoors as much as possible. We officially hit 100 degrees and for Caleigh, or anybody really, playing outside isn't a long lived activity. These days we are swimming mostly in the evening before Caleigh's bedtime. Something about the end of the day, shaded pool and warm temps allow her to kick more freely than in the mornings. So we are going with what feels best for Caleigh at this point. It's a wonderful way to relax before bed.

Caleigh has recently, in the past few months, started really chewing and licking on her hands. Honestly, It drives me crazy. I'm not sure if it's boredom, new habit, hunger, or sensory seeking. Her dystonia has just recently let her control her arms long enough to hold them in place to achieve this task. Maybe it's just developmentally catching up? If anyone has any tips...I'm open. I've tried reasoning, taking her hands from her mouth, redirecting, giving her something else to chew on, etc. At home it's not that big of a deal, but in public it shows a different view of our girl. She often times "checks out" from what's going on around her and starts focusing in on her hands. I've asked her why she does it and she says "I don't know." I asked her if it feels good and she says "I don't know". That sums it up for me.... I don't know.

 

So with the new intense hand obsession, I decided to add another sensory item to our oral motor box. I bought 12 ring pops, broke the candy off, bought ice cube trays, added water and then stuck the empty ring pops on top to freeze. 

 
So far Caleigh hasn't taken the plunge and stuck the pop inside her mouth. She plays in the melted water, rubs her checks and with my help rubs the cold pop on her lips. She seems to enjoy it. It hasn't been our cure all though.
  

On the same front I decided it was time to check Caleigh's calorie intake. We went to the GI clinic, and did a height and weight check. Everyone that sees Caleigh comments on how skinny she is. This is a normal comment though considering her extremely chunky state of babyhood. This time last year Caleigh weighed 41 pounds. Today she weighs 31 pounds. She's dropped 10 pounds and grown a steady 2cm, ringing in at 36 3/4 inches. She is less than the 5th percentile on height and 100% on her weight. So I'm told that her height to weight is perfect and everyone is happy with her growth. The plan is to stop the weight loss by adding an extra scoop of formula to Caleigh's daily calories and go in for weight checks every month. We'll keep adding calories until the weight loss has stopped and then we will start to maintain the balance.

Last week Caleigh's Goldfish passed away. I looked back at posts and we actually bought the little guy in October of 2010. That's a pretty good life span for a goldfish that never really got an official name. I'm contemplating different pets for Caleigh, but for now I think we are going to take a small break.
 
On Wednesday, Eric and I took Caleigh to the local 4th of July parade. We've gone every year that Caleigh wasn't in the hospital and it's really become an awesome tradition.

We always sit in the shade of the firetrucks and this year there was an occasional breeze to help out. Caleigh really understood about America's Birthday this year. We talked about it, read library books and did a little YouTube searching. Caleigh's favorite part of the parade was the high school cheerleaders that wore green and white outfits. When we got home she kept telling me that she wanted "to go in the car." She kept saying it over and over. Finally I figured out that she wanted to be in the parade. She wanted to ride on a float. Caleigh was extremely happy that I figured out what she was saying and I was too.