Monday, July 21, 2008

Our 2 new therapies! *Edited with more pics and videos*

Well this was a great weekend! On Friday Edwin began aquatic therapy, and Serena participated by swimming during that. Edwin, Sr did most of E's therapy with the PT while I held Serena in the pool who was not impressed even with the 80 degree heated pool. Edwin did awesome! He didn't cry and was in the water for an hour!! The therapy included holding him under his armpits and keeping him vertical. He then has to kick his legs in a running motion. This is great for strength building, and even without the ability to understand us telling him what to do, he did kick and reached out for pool toys and did an amazing job! We are very pleased with this therapy and Daddy brought him again this morning and he did even better.
Here are some pictures after therapy with Daddy and E in the pool. (Daddy wear his t-shirt because he doesn't have a defined enough 6-pack for his liking. He is oh so vain!)



On Saturday we went to hippotherapy. I have to give a huge thank you to my friend Kelly. I would have never found this place if it wasn't for her. Her son does hippotherapy and he is an amazing boy. Kelly told me hippotherapy has been the single most helpful therapy he's had (he started at 18 months and he is 4 now.) So I called and even though at the time I didn't have EI's approval to cover the cost, they had us come in for a trial session. The therapist was AMAZING. I know this will sound funny...but he was like a horse whisperer... for the horse I'm sure, but also for Edwin and I'm sure other kids too. He was so calm and reassuring. E went right to him, allowed him to put on his helmet and put him up on the full-sized horse. I was nervous of course, but it was AMAZING.
It was incredible to watch as Edwin needed a lot of support around his hips at first and after about 20 minutes, E was sitting on the horse without hands on by the therapist!!! He did a 30 minute session and did get tired at times and leaned over to rest on the therapist's shoulder. He hugged E and whispered to him and it was so moving I cried. He never cried once on the horse and kept looking at us proudly an babbling as he came by. I am so proud of my boy, and so thankful to
my friend for helping us make the calls necessary to begin this
therapy!
Serena had fun walking around exploring and playing with the owner's daughter. She didn't seem interested in riding, so I didn't feel guilty!
Here are some pics of E on the horse. They were taken by Daddy's phone because silly me forgot the camera so they are small because I emailed them from Edwin's phone because we can't figure out how to upload them to the computer. So bear with me until August 2nd when he goes again...I'll get better pics then.






After the session I explained to the therapist the difficulty we have been having in getting anyone to truly acknowledge the difficulties E was having, and how he's official dx by the neuro is transient dystonia, although recently others (like NICU follow up team, said they can't rule CP out.) His words, "this is NOT transient dystonia." He explained that E has very low tone in his trunk, and that he over uses his abductors (inner thigh muscles) to compensate. This leads
to him avoiding using his glute muscles which need to be strong to pull to stand, stand, and walk. I said when E pulls to stand...and he finished my sentence...he said, he goes up on both feet simultaneously. EXACTLY. This again avoids using the correct muscles.
He knew so much about the ways E uses his muscles in just 30 minutes and basically gave us a dx, but of course it doesn't count. But it did feel good to know that someone agreed with me that Edwin's motor development is more than just "delayed." It made me upset that he could have been getting better PT for some time now, but I can't focus on that. I told him I had been looking into private PT, because our insurance will cover some of these sessions in addition to EI services. Unfortunately, we have not found anyone who works with young children, because EI is a catch all until age 3 so every local private PT service I called and the rehab center affiliated with our hospital only sees kids after the age of 3. This therapist gave me some places, but all are out that way (30-40 minutes from our home.) But I am going to look into it because Edwin has established some bad habits that we have to work to break, which include doing exercises we have not been told about by our current PT...like his "W" sitting. He has been refusing to circle or long sit for weeks now, however, I kid you not, we went swimming after hippo on Saturday to practice what he did in aquatic therapy Friday and when we go to my moms to visit he was sitting in his little pool on his bum for over 2 minutes!!!! He did it several other times as well!!!
And the great news? I got the word today that EI will be covering the entire cost of hippotherapy for Edwin!!! As you know EI is up until age 3! After that, we'll probably continue and pay for it because it seems so great for him!!!
We feel very blessed that we came upon these two therapies for Edwin and that the generosity of our PT enables Edwin to get therapy for free and EI will be covering the hippotherapy. We are very grateful and looking forward to these extremely fun therapies for E and the fun that Serena has in being included in some ways!!!!

***And Edwin FINALLY learned to wave "bye bye" last week!!!!! It is probably the cutest thing you've ever seen as he waves frantically, very unorganized, and usually with both hands. I have to get it on video.
And Miss Serena is increasing her vocab every day. Yesterday she came over to me with a duck in her hand and said "duck" clear as day. I don't even remember really focusing on teaching her that animal. I was shocked. And her saying "stop it" is still not getting old. She says it about 40 times a day. It's hilarious!!!! Also, when we laugh, she now throws her head back and laughs along with us. It is soooo cute!

Don't mind the nakedness...this is why it's good this blog is private!!!

2 comments:

abby said...

Stephanie,
I'm so glad that Edwin Jr. has these two new therapies. You are so great for pushing so hard to get him what he needs and he's going to make amazing strides. I know it's hard all the worrying about how much you could have done had you been able to do it sooner (believe me, I feel the same way about Hallie's food allergies and issues) but the point is that he's getting what he needs now, and it's all because he has great parents. Also, I think the therapy may be able to be paid for after EI is over.... I know Heidi (Bennett's mom) has Moira in hippotherapy...maybe she knows how to negotiate the system.

Great news too on waving and talking fronts!

Beth said...

What wonderful news!! You are such a terrific mom and everytime I read your blog I leave with such a smile. Your family is beautiful!