Landen's AFOs

So the othotist decided that Landen needed something more supportive then the SureSteps we were hoping to get him he is getting Cascad which of course are custom made and will cost us much more. Even worse is that our insurance will not cover most of them. We have to first meet our deductible for the year and the cost of the AFO (ankle-foot orthoses) is more then our yearly deductible so we have to pay the entire deductible plus our portion of what is left over. With what we pay for health insurance to have such a high deductible and still have large co-pays is STUPID!!! But the good news is from here on out no matter what we get done our insurance will pick up a good chunk of the bill. The better news is that since Landen's application for long term care was submitted weeks ago before he even saw the othotist if he is accepted we can apply and hope for reimbursement and if not then I guess will live. I don't wish to sound like I'm just complaining I'm grateful that we can actually afford to pay the out of pocket expense to have these made. We are trying to give Landen every opportunity to get strong and develop now before the disease takes his motor functions away from him. Its not just a race against some set clock cuz with this disease there is no way to predict how and when things will get worse. We have nothing to go on. We can't compare him to others with this disease every child is different. That is one of the most difficult things for us. They can't look at us and say he has blank amount of years not even a rough estimate. All they can tell me is that this disease will take my baby and there is nothing I can do about it. But for now we are handling it one day at a time and doing everything we can for him. Its worth shelling out one complete paycheck for AFOs and a little over a hundred dollars on top of that for his walker... why... its not because we as his parents want to see him succeed and walk before he looses the chance (although that is very very true)... its because for those of you who spend time with Landen know he wants to walk. He spends so much time practicing the two or three steps that he can make between two people. He loves it! The look on his face the enormous smile he gives when you hold his hands and help him to walk. So today I went down to the othotist office and put a huge payment on my sons happiness and on the 28th I will take him down to get his new AFOs.