Thursday, February 16, 2012

A snippet of our behaviors

When baby Grays was just a few weeks old we went back to therapy, full swing, all three. We started with Ben in July. Tyler loved going and really liked the location and actually would participate. We have been going regularly until December when Ty got sick. We took almost the month off and started back right after we had Phenol.

At that time is when we were in full swing of our mean horrible behavior that has had us all in a bad mood. This is what our days have been filled with. Before this Ty never even cried at therapy. This behavior was happening ALL day, all day at school and in the car when we would travel somewhere. It has been VERY hard.
Ben, his therapist, is truly an amazing therapist and I am so glad we have him. He has worked very hard on getting Tyler stretched, moving and working hard. Again, this is NOT normal Tyler behavior. He is always so hard working and willing to do anything, but not since his seizure.

The last 2 weeks he has been somewhat back to normal. His behavior has been so much better at school. He has less anxiety and he is and has been able to calm himself back down. He has also been willing to participate in school AND in therapy.

One of the things we have been working on, even during time of crisis, has been his hips and his hip placement to help his gait. It was being worked on in the first video and also in the second. Same pressure, same movement but a TOTALLY different child. In fact, the second video we have a therapist we had never seen before, yet his attitude is all Tyler. None of this crazy mean one from the months before.

In this video they are changing the pressure on his hips so that his gait is altered. He is also walking on an adult treadmill for the first time in his entire life. Our awesome team of therapist ( Ben and Bryan) are talking seriously about ordering a set of theratogs for Tyler. They are pricey and of course insurance doesn't cover, so we have to think long and hard about spending the money. Not to mention figuring out where to take that money from. It would help his gait, his bones and possibly save his hips. But the best part, by FAR is how well he is doing. We had not ONE drop of tears. We were "winning a race" and playing basketball and being a very hard working and happy kid.

On the ride home, not a tear when baby Grayson started to cry. Not a tear at the cookie store and not a tear when we went to see Dad as the coach. Not a tear when we got home and not a tear for bed time. It is almost like he went to bed one day as one kid and woke up as another. We have started to ween him from his keppra and that is almost complete. One more week before we are totally keppra free but the good behavior started even before that. ( Making me wonder if it REALLY is the keppra) But none the less, it has helped lift my spirits. It makes the days less tiring. It makes me so excited to have Ty back and  that we can go back to how things were. Enjoying the day and time that we get to spend.... together... as a team.


Steff said...

Wow Nancy what a huge turn around!!!! YAY for better meds and the real Tyler coming back!!!

Cynthia said...

I'm so glad! That's a ton of stress for both all of you!