Big Decisions

    Ok so we have decided to try & enroll Beckett in an intensive physical therapy program. The program is called EuroPeds & it's in Michigan and lasts 2 weeks with PT sessions M-F for 4-5 hours each day. Sort of like Physical Therapy Camp! Only he won't think it's fun...

    I have been researching different therapies for children with Cerebral Palsy and I found out about "Cage Therapy" & "Suit Therapy". These are big in Europe but have only recently become more mainstream in the US. The Cage or aka Spider Therapy is where a child works with lots of bungee cords to help hold them in proper alignment, kind of like having 4 or 5 PT's all holding different areas at once. Here's a pic...

 

   Suit Therapy is an actual suit that the child wears during therapy to isolate weak muscles & provide resistance to help strengthen the targeted muscles. The suits were originally designed for astronauts to wear while working out in zero gravity to keep their muscles strong. Here's a pic of suit therapy & cage therapy together...

 



www.europeds.com

 

    The program in Michigan is called EuroPeds because it was adapted from the program started in Europe. This is the only program in the U.S. with both the cage & the suit and it is the first hospital based intensive PT program in the U.S. which means it is actually part of a hospital - Doctor's Hospital of Michigan. That made us feel better to know that this is a legitimate program at a hospital & not just some privately owned, unlicensed therapy center!

    Now I'm sure some people think that this may be unnecessary because Beckett already gets Physical Therapy at Special Kids. And I absolutely love Special Kids & all his therapists there. He is making steady progress. But, he is currently only getting PT twice a week for an hour a session and that's not really that much. He is 3 now and he is getting too heavy to just carry around everywhere! So we look at this program at EuroPeds as a way to add to what he already gets with the hope that he will be able to strengthen his leg muscles & learn proper posture to hopefully help get him independent with his walker & the big goal of him walking on his own!

The bad news...
    Of course, it's super expensive :(   And, of course, insurance may or may not cover any of it. Now we are going to talk with our insurance & see if they will cover some of the cost but even if they do we will still have to cover suit therapy b/c it's still considered "experimental" & no insurance will cover that, plus travel expenses, hotel, etc. We have estimated the program at 7,000. Which right now, might as well be a Gajillion.

BUT we have Faith!

    We are going to sell t-shirts for the special kids race in March & part of that cost will go towards this, we are going to order bracelets to sell for $5, we hope to have a couple restaurants do a "Jon Beckett Night" and donate part of the proceeds, I am going to pick up more shifts at Kroger (gag), we are asking our family not to buy us gifts for Christmas this year & instead donate to Beckett's fund (so now you know I won't be giving you a present!), AND I finally figured out how to put a "Donate" button on this blog! So now any kind individual who would like to donate to this fund can simply click the button & make a safe & secure PayPal donation to the Team Beckett Fund!

   Now we realize that many people who read this have probably already donated money to Special Kids or to previous Beckett fundraisers and we really do hate to ask people AGAIN for their help. But we have decided that this program is right for Beckett and we can not raise this much money on our own so we have to just do what we feel is best for him & put our feelings aside. Just know that we are so incredibly thankful for each and every person who has supported us, prayed for us & donated for us, we are amazed everyday at how generous & kind & caring people have been toward our family over the past 2 and a half years and we are forever grateful.

     So stay tuned! I will keep updating on here & if anyone has any questions I'll be happy to help!

And here's a Beckett pic...

 

i know, i know, he shouldn't still have a paci...

 

 

Our first post!

 

I'm hoping this blog will help me keep everyone updated on our family & particularly Beckett's progress, without posting it all on facebook. Plus I think it's good to document all the ups & downs Beckett faces so that later we can look back and see how far we've come. And because my memory is terrible these days :(

 

Beckett did such a good job this afternoon walking in his walker. We practice in the road since there's less stuff for him to crash into (thankfully we live on a cul de sac). He hasn't really mastered maneuvering yet. I taped it so everyone could watch him. And for some reason he has started covering his ears with his hands alot as you can see in the video, I have no idea what that's about.

 

 

 

Beckett also started preschool at Rockvale Elem. this week. They have a preschool class for kids age 3 & 4, both typical and special needs kids. He only goes on Mon & Wed from 7:45-10:45 and the rest of those days & the rest of the week he is at Special Kids. His teacher said he had a great first day & he seems to like going. We are just praying that he does well with all these new changes in his schedule.