The good thing is, nothing has really happened between July and now... just two surgeries, countless casting sessions, a new school, getting moved from special education to regular education, becoming a professional wheelchair driver, and having your 4th birthday party. Nothing important at all.
Foot surgeries - started the casting in June; every two weeks we took a trip to Houston to get the casting adjusted. Your first surgery was July 21 and it took them about two and half hours longer than planned. Not a fun waiting game. The surgery went amazingly well though and your surgeon was excited about the results. They started the casting on the second leg when they wrapped the first one after surgery so we then spent eight weeks in double casts.
The second surgery was delayed by vacation time (which I was not thrilled about) but turned out to be perfect timing or we would have been stuck in the hospital when Hurricane Harvey came through Houston! So we were delayed a little longer as they tried to get their schedule back on track and this mama was more than ready to finally get it scheduled! The second round went more quickly than the first becaus ehe knew a little more what to expect - as has been typical, your left side was tighter than your right so it took three pins to hold everything in place instead of just one.
Fast forward to November - you were suppsoed to get your post-surgical cast off the week before Thanksgiving but a double ear infection and chest cold kept us out of the ER. We spent Thanksgiving week inside doing breathing treatments, antibiotics and extra meds to get you better... and in the meantime Mama ended up with a sinus infection. Went back to Houston the week after Thanksgiving and got the cast off; we went back Today to get your final cast OFF and to get your second AFO and will go back January 3 to get your HKFOs so you can start walking again! In the meantime you have already started standing up and climbing stairs again; we also pulled out your walker last week for PT so you can start working on leg stregnth.
That takes care of big item #1...
Number 2: SCHOOL!!!
You were so ready to start school and then we found out about a week before school that your teacher left the district AND you would not be in the class with all of your friends from last year because they had already turned four and you would be in the three-year-old class so we had no idea what would be going on! You did fantastic adjusting to a new campus, new classroom, new teacher and new friends though! So well that about a week into school your teacher called as we were getting home and asked if we could come back up to the school - they wanted to move you out of the special education / PPCD classroom and into the regular education class!
They initally had an aide that stayed with you but as the PPCD class grew (students can begin on their third birthday so they were being added as the year went along) they pulled the aide back and you are now in there 300 minutes of your day with 70 minutes in the special ed class for “personal care” (diapers, potty time and tube feeds) as well as being pulled out for speech and motor therapy group and YOU LOVE IT!
In fact, we had your annual review last week an dboth the special ed and general ed teachers agree they can start introducing all of the concepts for the four year old curriculum. I have no idea what they’ll do with you next year (one more year of pre-k before kinder) but we’ll cross that bridge when we get there. The other big focus is going to be on writing basics: helping you figure out how to grip the pencil, if we’ll need any adaptors, what works beat for you, etc; as well as starting to work on typing and finding areas we might to address with adaptive technology.
So that’s where we are with school. You come home every day with a different story about a different friend. Most of your play time at home is you “teaching” your friends - numbers, letters, shapes, colors, reading books... but you’re a pretty tough task master!
Moving on: 4th Birthday Party
You don’t turn four until tomorrow but we teamed up with the two December cousins for a mega-party at Chuck E. Cheese so we wouldn’t all have to go there two weekends in a row. It was a ton of fun, played lots of games, you got to catch the tickets (which, according to you, means you are four now) and do all of things you have been talking about since April when we went for L5’s birthday party!!
The big part of your birthday this year is redoing your room! We are making some major changes to bring everything down to your level and make it all accessible to you! I’ll have to do another blog post about that (before next December hopefully!) because there will be a lot changes!
We are getting ready for all of your annual check-ups with specialists:
We see the GI doctor tomorrow; developmental pediatrician in February to do some first rounds of cognitive testing; pulmonary in April and we get to add ENT back to our rotation in January. You failed your hearing screen at school...twice. So we had to follow up with the pediatrician - which is when we found out about the ear infection mentioned earlier. Even after the double round of antibiotics and clearing out all the fluid, failed the screening (round 4...) so we went to an audiologist who said he’d rather us follow up with your ENT team since they know you and your case history. So here we go again.
That’s about all for now - although Christmas is one week away which means another post coming soon. Right now, you are taking your first full bath (not just a wipe down, sponge bath, hair wash over the sink) since July 19 and LOVING EVERY SECOND OF IT.
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