Sep 14 - Look at me! I can walk!!

Sep 14th - We started outpatient physical therapy four times a week right after we got back from St. Louis in July. We also do daily stretches (once in the morning and once in the evening) and multiple smaller at-home PT sessions on our own every day. Kyle is now getting physical therapy at an outpatient therapy facility near home. He was a little fussy at the start but we quickly learned that playing videos on his iPad stopped the crying and he began cooperating at PT. PT four times a week was a bit overwhelming at first but we soon realized it made a world of difference and Kyle really started to progress in leaps and bounds. He was weak right after the surgery because once the spasticity was gone he was no longer able to rely on his tone for strength and therefore most of the physical therapy initially after the surgery was focusing on building strength to get him back to the levels where he was before the surgery, and by using his muscles and not tone. He regained all his skills back before the four-week mark, except for his balance in standing. He could still stand unassisted but was not as confident and therefore was lacking the desire to stand unassisted. It took about six weeks for him to relearn his balance and be comfortable standing unassisted again. In the mean time his legs have gotten so much stronger that he picked up lots of new skills. He is now able to stand up from bench-sitting on his own (we hold down the tip of his toes and that's it). He is now able to walk up the stairs by holding the rails with both hands so we no longer need to hold his hands while walking upstairs (we do keep our hands close to him to prevent him from letting go or bumping into the railings). He can now stand unassisted in his bare feet without shoes and braces for up to 10 seconds. He is also walking with one hand held for much longer distances on a daily basis. He's doing so well that he no longer needs the walker.

Kyle started Pre-K three weeks ago. There are a total of ten kids in his class, five of which have IEP's. Of the five kids with IEP's, Kyle is the only one not in a wheelchair. Since Kyle still has feeding issues and we are not comfortable letting him being away from home all day and possibly miss multiple meals, we are only sending him to school for two hours a day in the morning. He does participate in breakfast at school but so far he has not taken anything yet. Our plan was to let Kyle walk to & from his classroom and the front entrance of the school in his walker, with a stroller nearby in case he didn't want to walk and would fall down on his knees. He only needed the stroller for a short distance to his classroom the first day of school and never used it again. The first week of school we brought our own walker while the PT at school was preparing one for him to use at school. The second week he used the walker at school. Something just didn't look right and we discovered a few days ago that the front wheels of the walker were fixed in place and therefore he could not turn directions. All he was able to do in the walker was walk in a straight line and he still needed assistance to turn. Kyle had been completely independent in his walker for over eight months and at this point the only reason for him to have a walker at school was to give him independent mobility. But if he still needed someone else to turn directions for him in his walker then it totally would defeat the purpose of having a walker. We asked the teacher to leave the walker in his classroom and just walk him to & from his classroom with one hand held so he is now walking without any equipment to and from the classroom. The classroom is catty corner from the front entrance of the school - probably at least 500 ft. In addition to that, we also walk him to the entrance of the school from the car with one hand held. We also walk him to the PT office from the car each day. Kyle's getting plenty of exercise!

We haven't received too much updates from the teacher on how he's doing at school but we know that he's generally happy and rarely cries, but does get tired sometimes and wants to be held. I am not sure if he's made any friends but we were told that he's more interested in playing with his friends than breakfast sometimes. He is also getting 15-30 minutes of PT, OT, ST, and vision therapy per week at school but we will have to contact the therapists individually to find out how the therapy sessions are going.

The biggest news is that Kyle started taking independent steps last Thursday (Sep 6th)!!! During one of the exercises at his morning session of PT he started lifting one of his legs while standing. At first he was just moving his legs one at a time in a stomping motion, but after a few tries he started taking reciprocal steps with forward movements, up to 5-6 steps at once! Since then he has taken as many as 12 steps at a time, although most of the steps were small and some days he didn't want to take any steps at all. I never thought it would happen so quickly, just eight weeks after the surgery! I had no idea when Dr. Park said, "he should be taking independent steps SOON", it was THAT soon! He still has a long way to go before he can become a true independent walker but we are beyond thrilled with this monumental milestone and can't wait to see what the future holds!

In other developmental news, Kyle started purposefully nodding his head for yes a few weeks ago and would also shake his head for no but not as consistent. This seemingly small gesture is HUGE because it means that even though he is still non-verbal, he actually understands what we say, knows that he's being asked of a question, and knows how to properly respond to the question.

Kyle had his second annual overnight EEG at the hospital three weeks ago. It still showed seizure "tendencies" (no actual seizures) with the spikes in his brain activities, which were more active in his sleep as expected. However, compared to the one he had last year it looked better so there's some improvement. He is going to stay on his Keppra for now although his neurologist is not increasing his dosage, not even adjusting for weight.

Kyle has not been eating as well since we got back from St. Louis. He did, however, expand his palate and start eating yogurt and ice cream (he used to HATE anything sweet). He is still eating solids, but not as much as he did when we were in St. Louis.

We go back to St. Louis in two months for Kyle's four-month follow-up appointment. I can't wait to see how much more he can do then!