Having Fun At The Beach

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Hello all...

It has been a while... I plan to post a video tonight of Andrew's Walking. He is doing well since he started Aquatherapy. He is getting frustrated with the therapist since she is trying to get him comfortable on his back in the water since she plans to do lots of exercises on his back. But in his mind he thinks that it is play time. So we have some plans to spice things up a bit for him at his next session. It has been really difficult lately to see him back on his toes again. It is the constant reminding him to put his feet heel to toe. and of course he is frustrated with us by telling him all of the time also. But it seems that fatigue sets in in the afternoon and of course he is not really motivated first thing in the morning. So when we see him the most on weekdays (morning and evening) because he is at school all day, it seems like that he is having a setback, but in actuality we see a difference on the weekend when he is with us all day.

Otherwise he is doing well. We notice that he is much stronger and has better balance and things get better little by little every day. Of course, since his IS doing more strenuous activities during the day, he seems to get really tired in the evenings.... BUT it doesnt help that he just lays in bed and doesnt fall right off to sleep. He rests for a long time before dozing off.

Here are some pictures of the boys at the beach and I'll post more photos and video later.

7 and a half weeks....

Well, we are past the 6 week mark and Andrew is doing great. He's been getting a little mad a people for telling him to walk heel to toe, but we keep telling him that if he would just do it on his own, that everyone will stop telling him to. Even the 3-5 yr old children at school are telling him also. Kids that age are so cute when they like to participate in people's care.

So Andrew started his first Aquatic Therapy session last week but did not get into the pool yet. Today they will put him in the pool and we'll see how it goes. His new therapist there would love to see him 2x a week, but we only have 13 visits left under our insurance. After the 13 we will have to pay out of pocket. So we may try to stretch it out until we go back to St. Louis Children's in October and then go from there. We're trying to find a way to get the insurance company to cover more but it is pretty much set in stone. So we're looking for a way around that.

We celebrated Matthew's 3rd birthday this weekend and the boys had a BLAST. Our back yard was basically a fun park. We had a HUGE bounce house, big blow up waterslide, a blow up pool under the playset slide, the playset of course, and another kiddie pool, balloons, games and of course, cake and ice cream. There were about 35-40 people there and about 18 of them were kids under 5!! WOW what a party. Needless to say, the boys zonked out by 7:00. Andrew did REALLY well in the bounce house. I would love it if we could afford to get him something like that for therapy and also for Matthew to burn off some energy!! lol. It's funny to want one child to burn off energy and another to gain some energy and strength!! It's like one extreme to the next.

But anyway, we're hoping the Aquatic Therapy will help with Andrew's sensory issues also since he's developed some different sensory issues in the past 6 months or so. Some seem to have gotten better, while others seem to have cropped up and are unbearable. I'll post more about that later and see if anyone has any suggestions for us.

Well, it's time for me to go pick up Andrew for his 4:00 therapy. Hopefully I can post some photos again soon.

Andrew 4 weeks Post-Op SDR Outdoors Walking

4 Weeks Post Op...

I know it has been a few weeks since we've given an update, but things have been still hectic. Last week Andrew came down with Strep throat and had to be home from school. You would have never known he was sick if he didn't have the fever. It took him a while to get back into the routine of going back to preschool/daycare, but things seem to be going smoother. He has a new 1:1 aide now and a new OT. He has also been placed in another classroom with all new students and teachers, so it has been quite the transition back to school. We were not anticipating all of the changes and only found out about them when he returned. Although he truly misses his aide Megan, he seems to be adjusting nicely to his "girlfriend" as he calls her. We are finally able to start getting him to wear his shoe inserts to help his collapsing arch in his feet, so hopefully this will help with his feet turning in and prevent further surgery in the future.

He has been doing amazing with his walking and his PT commented how he is starting to use a nice heel strike when prompted. He seems to have most of his strength back and seems to have better balance while standing still. Before he would teeter totter to keep his balance by forward and back stepping to keep from falling. Now he can stand with both feet planted in one place! He does still need reminders to stand tall. He seems to forget that he can easily straighten his knees while standing and tends to do the same when walking. We're trying to teach him how to use his full leg extension while walking along with trying to remind him to walk heel to toe. He tends to be walking toe to heel but with reminders you can see him concentrate on placing his heel first with his toes raised. Sometimes he will over exagerate his step and concentrate so hard on doing it right that he will trip, but he is trying so hard. To the average person all of this comes naturally and now it has to be taught to him.

Otherwise he is doing GREAT. We feel that we made the right decision and that we have lost nothing from the surgery and have only gained some ground. Our biggest fear was that he would lose the ability to walk because of losing the high tone that he previously used to walk. But he seems to be adjusting well and we can only go forward from here. It is with much relief to see him doing so well and Matthew only adds to the joy with how helpful he is with motivating Andrew and helping him when he needs it.

Also, we are wondering if it is a coincidence that his language has picked up since the surgery?!? He seems so much more confident and sure of himself especially when speaking to you in conversation. He is using more "grown up" terms and phrases that he never used to. It is so enjoyable to talk about his day. He seems much less frustrated when talking to you and is even more able to pay attention and process what you are saying to him also. He seems to be much more calm than before and recovers more easily from his frustrations. Hopefully this continues, but in some ways it's not so good since he is much better at pleading his case to us... the lawyer/salesman/politician (no offense to anyone) kicks in and he starts to manipulate us into going "HIS way" in a more convincing way than before.... Makes it harder to make him see things OUR way.

So that is it for now... We've uploaded another more recent video and I will try to post it after this. Hopefully I can get some more up by the end of the week.

Enjoy!