Hi everyone, just wanted to share my recent news with u all, maybe it can help someone else. I recently learnt about a rehab centre in Mielno, Poland that specialises in working with CP children and adults and other similar physical disabilities. i made my research and found out they use a special suit called the adeli suit. This suit was originally developed for the Russian astronauts who were up in zero gravity for months at a time. Before the suit, they were prone to bone decalcification and osteoporosis because of the minimal physical activity they did while up in space. (my info on the history of the suit is probably not the most accurate so check it out on the net ). Anyways, they found that after wearing this suit it helped prevent all that. so they adapted it to suit the needs of people with CP.

After some long thinking, i packed up myself and my daughter and accompanied with my dad, made it to Poland to spend an entire month. I am still there and its our 3rd week now. My daughter Nadine, goes through rigourous 4 or 5 hour physiotherapy each day to help her learn to keep her balance, weight bare, an eventually walk one day.

Her prog. starts at 8 in the morning with UGUL therapy for 30 minutes, which is like a multitherapy system, then she goes on to have spider therapy for 30 mnutes. She loves Spider because it places her in vertical position supported by numerous bungee like cords and practices stepping and standing etc.. She then has oxygen therapy for 3 mins and little break. After it's off to hot gel packs to warm her muscles and then 2 and a half hours in the Adeli suit.

When she is in the suit, it places her in perfect allignment, prevents things like her legs scissoring so that when she does physio, her brain starts to learn correct movement patterns and signals.

Now during the past 3 weeks, obviously no miracles have happened, but i can comfortably say that my daughter's muscles are getting stronger. the exercises she struggled to do at the beginning are now easier for her. my daughter does not walk but had a good idea of stepping forward, so when i hold her to let her walk, i have noticed a significant improvement in that her legs do not scissor as often or as severly as they used to. she is also much more confident , i think because she's in an environment where everyone understands the daily struggles and pushes each other on. For me it has been like being in a group councelling course.

Anyways, i think i will make future visits here and try to carry on at home wht they have started here.

hope u guys can look up this centre on the net and find out more about the Adeli suit and Spider and UGUL therapy.

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I've heard about this center and the suits. Isn't it about $10,000.00 just for your 1 month visit? When I learned that Caysen was quadriplegic CP I was looking into every thing and came across a few parents that had been to the center. There are 2 centers here in So. Cal by me that hire their therapist from poland. One center is called the Eurica Institute http://www.eurecainstitute.com/ and the other center is called PoleVault (I'm not sure if I spelled it right I couldn't find the link). We decided to wait until Caysen got older to put our hopes on any of these therapies. I am sure for a child is not a severly disabled as our son it would work great. I hope it works great for you and good luck!
Deborah Mom to BBB Born at 25 Weeks 1 Day 04/21/05
Austin 1 pound 8 ounces
Braedon 1 pound 11 ounces
Caysen 1 pound 13 ounces

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yes the therapy is rather expensive and it took a lot of saving up and family donations to get our daughter over. I have seen quite a lot of children who are more severely affected than my daughter here at the centre and many of them were on return visits because they said the results were astonishing.

i dont know how often i can afford to bring her back but i'm sure that i will. if you have centres near you that hire their therapists from Poland and who work using the suit then why dont you give it a try. I'm sure it will help him. Always keep your hopes up. when i was first told about my daughter the doctors said not to expect too much. At the time she could not lift her head, roll over, sit, actually if i left her on the floor facedown, she was completely helpless and would remain like that till i move her. now with all the intensive training she's been in and dare i say unprofessional attempts from me and my family, she can do all that and more.

she still has a long way to go and i'm prepared to accept whatever results i come up with but i try to be positive all the time.

hope all works out wonderfuly with your little one

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Hi Maey -

That sounds wonderful - I am just now starting to hear about all of the therapies and suits and equipment they have to help children with extreme special needs and it is giving me alot of hope for my emily who is now almost 9 months and can not hold up her head, roll, or sit.
She does not have cp, but is severely delayed due to a rare chromosome disorder. She also has many other medical issues as well.

thanks for sharing your story and best of luck to you!!!

Aimee

Aimee
Mommy to Drew 12/13/03
and
Carter, Brenna, & Emily
8/18/07 @ 33w4d