The Good, The Bad and well just life

One Cane Walking...Way to go Jos!!


The good first...Josie is just starting to learn to walk with one cane. It is the next very big step in her walking journey. It, like 2 cane walking) will be a process to learn and master. Przemek will get it going here, but Liz will be the one to keep it going and perfect it. We are hoping Josie can get a bit more comfortable with it before we return home. Right now she is scared of it because it feels so different and unstable. The same way her canes felt last year. She struggled with accepting how to relax and listen to Przemek's instruction. She got over that today and did quite well. We are headed in the right direction. Her 2 cane walking is so much fun to watch. She is just working on speed now.

**Warning, I'm on a bit of a negative jag, so you may not want to read the rest***

The bad...I have been working really hard to get Blue Cross to accept our claim to get Josie the Standing Dani.(Medical equipment and we have never asked for even one piece of equipment from them ever). Most of you have seen the pictures of it this summer. It is an electric stander(she is actually standing with perfect posture) that she can use to get around school (in the classroom she will use canes), the grocery store, basically longer distances that she can't walk with her canes for. It keeps her upright which is so important for leg strength, balance, peer interaction, prevention of scoliosis, oh I could go on and on. It would replace what anyone else would use a wheel chair for, which I refuse to do especially after finding the Standing Dani. Anyway, Joy, her PT at school and therapist trained back here by these guys in Michigan, and Dr. Kay have helped submit the most thorough request. It went in for urgent review because we need it when we leave here in 2 1/2 weeks. The doctor at Blue Cross got it this afternoon after much chasing down by me and DENIED the claim within 5 minutes...not even possible for her to fully read and review all the material sent. I am so mad. They will give her a $35,000 power wheel chair and a full time nurse (she doesn't even need one), will pay for all the surgeries and complications that come with being in a wheel chair, but won't pay for something that they haven't seen a million studies on why it is better than a wheel chair. There are not a million bloddy studies because there are very few proactive parents like me that are more willing to work really hard so their child doesn't end up confined to a bloody wheel chair and the life that accompanies that unnecessarily. This child didn't survive one of the biggest, if not the biggest, medical procedure in the world and work this hard for so many years in therapy to have an insurance company deny her a better quality of life. argh. Dr. Kay, who mind you is one of the most well respected orthopedic surgeons in the country, asked for her to have this. Don't you think he knows her case better then some yoyo doctor reviewing something on paper?...Back into battle. It will get done, just with a lot more headache. Maybe it is good, I guess, for my patience to be tested. PS. Blue Cross - I don't have much of it right now, so beware.

Just have to vent once in a while. This is written about our daily life. 98% of the time doing great. As my mom would say, get some sleep and the world will look better in the morning. That's what I am going to do. Night, Jenny and Josie