March 2017

So since it's a third of the way through April and I'm just now getting around to the March updates, we're just going to pretend like the February one already happened... don't worry there weren't any major updates, which is why I never felt the need to write it. March however had some big things!

In February, we had to switch speech therapists. The ST that has been with us since you came home (the first time!) switched agencies and weren't able to move over with her. Your new ST has been amazing though and after a couple sessions of testing the waters with her, you spent most of March showing off everything that you know! Unfortunately, that means you are racing through all your goals and she has already started warning me that our sessions will probably get cut at the end of the month. 

You got to have your first capitol day in March also! We met up with a bunch of other families to meet with legislators about the cuts in therapy funding and the switch from Medicaid to STARKids, which has been fairly disastrous across the state. It was quite the experience - much different than other advocacy days that I've taken part in...mostly because I've never had to navigate the building with a stroller before! More details about that day can be found here.

We had a great time over Spring Break! We spent the first few days with Nanny and Grandpa fishing, driving the tractor, playing hide and seek through unfinished walls and burning marshmallows every evening.

The next week we had an appointment with your ENT and you were discharged!!! She said unless we started having any issues, that there was no reason for her to see you anymore! Dr. B has been absolutely amazing and I am so glad she was on your team, and although it's weird to think we won't be seeing her anymore, it's a phenomenal feeling to know that you are doing so well that we get to start dropping specialists! Maybe we'll have similar news with your pulmonary appointment later this month.

You had an absolute last at Cousin L5's birthday party and have already started talking about when we go back to Chuck E. Cheese "in December for Lexi's birthday"... I love watching you and L5 play together - you got to spend a couple hours at their house one Saturday when I had to take Patches to his obedience class and spent the next several days telling me stories about it and how it was "so much fun!"

Last big update: you had an appointment at Shriners at the end of the month and they were so thrilled with your progress that we are ready to move forward with your vertical talus surgery! It's quite a process so we don't have dates yet - they said they are estimating 2-2.5 hours for surgery on each foot so they want to do them one at a time. Each foot has to be cast for 6 weeks before (changing the cast every 2 weeks) so we're looking at a 12 week process. During that time you are not allowed ANY weight bearing so I am especially thankful we have the power chair now!

If you want more medical details about the surgery here's a good site; simply put, both of your talus bones are not laying the way they should be. The casting will help make the foot as flexible as possible by pulling your foot down (think of a ballerina pointing her toes down) which is why you will be recast every two weeks - a little more stretch each time. They will then go in and put the bones in place. After the surgery you will actually have less mobility and flexibility in your foot, but the structure and stability will be what it needs to be for walking.

What we're waiting on now is for them to look at the surgery schedule for the second foot, back up six weeks for casting and make sure that aligns with the first surgery and then back up six more weeks for casting. Should know more specifics in the next 2-3 weeks (they told me to give them 4-6 weeks; but if I haven't heard after 4 weeks to call and check in...) but once the process starts we'll have a total of 8 trips to Houston and back, with 4-5 days there for each surgery...should be fun to try to schedule

We wrapped up the month with the PTA carnival at school where you had a blast. Unfortunately, you have decided now that you are "a big girl now because I played with the big kids at my school." 

Those are the major updates - now for the cute stuff: 

Ignore the hair - we've been working on the books of the Bible. This was actually in mid-February; now you can make it all the way to Ecclesiastes without any prompting!

Another big highlight in March - you VERY QUICKLY picked up on riding your bike!

Last bit of adorable: we've been working on training with Patches and you are determined to not be left out in having someone to boss around!