I've been awful about updating - and we've had some big things to share! Summer jumped into the picture WAY to soon and now I loom up and it's almost July...
So here goes:
You finished your first official "year" of school - and we got the good news that you will have the same teacher next year so I'm hoping it doesn't take another 3-4 months for you to settle in and be comfortable enough to start participating again! This next year, at least at home, we will be working a lot on hand work: writing, drawing, etc. Due to your foot surgeries and the casting issues that will require you to be off your feet until mid-October I figure it will be a good time to get busy with that so when you hit kindergarten we will have a better idea of whether or bot you will beed any assistive / adaptive technology or not. We had a great time at your end of school picnic and the teachers gave us these cute planters you helped make with your fingerprints so now you have "my own gardens!" - we are just waiting for your seeds to sprout!!
We got started with casting on June 5. You tolerate the cast fairly well during the day - it definitely hasn't slowed you down any!! We are having a hard time making you understand that you can NOT stand up in your cast...I have a feeling after the first surgery you will get it! The first few nights were rough; you didn't quite understand why we couldn't take off your cast like we do your pink boots (HKFOs) so you could sleep. You woke up a few times each night for about a week before you finally settled into sleeping with it.
They opted to use a soft casting material because 1) it's easier on the skin so better for long term use; 2) they don't have to cut it off with a cast saw, it just unrolls. Unfortunately, that means it's not as stiff as a typical plaster cast so any amount of pressure can cause it to crack or shift and effect the angle they are trying to stretch your foot to. Downside number two is that it only comes in white, but we took care of that pretty quickly!!
We went back on June 19 for your first re-casting and they were really happy with the stretch and how much more loose your foot is. The first thing you asked when they took it off was "I stand up? I do nastics??" You have absolutely missed getting to do gymnastics with Little Big so you got a couple of your handstands and splits in before they recast you. We also noticed that your entire leg is much straighter - you were having to lean to stand with both feet on the table because of the nice stretch you're getting on your knee as well!
We are still on schedule for surgery on July 19, although we did find out it will be 18 weeks total casting instead of 12 like we originally thought because there is also a 6 week post-op casting period! So six weeks pre-op on the right leg, six weeks post-op right AND pre-op left, then six weeks post-op left THEN we can start PT work on regaining leg strength and walking again.
On June 20 we had a GI appointment and he pretty much told us to keep doing what we're doing because it's obviously working! You are now eating about 1/3 of your daily calories by mouth - and you eat just about everything! There are a few things you don't like, but for the most part you "want dis and dat" and whatever else is on our plates whether you know what it is or not! We'll run labs again in December to check allergies and nutrient level, but other than that we're clear to keep pushing forward!
Your favorite is still "sumsketti" but you also keep cheerios, krispies, crackers, chicken, yogurt, pretzels, toast, apples with peanut butter, apple sauce and cookies on rotation!
You've loved having Nanny around the last two weeks (and we'll have next week as well) and Mama has greatly appreciated the help as I was gone for a week, then exhausted and trying to get caught up and ready for everyone to be scattered again next week!
You got to go to your first non-family member birthday party and LOVED seeing your friends from school! You spent the next three days telling anyone and everyone you saw about how much fun you had and what presents she got and what games you played and... Needless to say, you enjoyed it :)
That's about it for now - will try to keep things updated after next week as we move closer to surgery #1!
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