In October of last year Carter underwent a fairly new and controversial procedure in the spina bifida world, Selective Percutaneous Myofascial Lengthening (SPML). Much research is being done with this procedure as it relates to people with CP. But Carter has spina bifida. Could this procedure produce the amazing results the CP community is seeing? Although much was unknown, we (and our insurance) were willing to give this a try to help correct a knee contracture that was a direct result of his year of bed rest, wound flap surgery and failed tendon release.SPML is done to release the tightening or spasticity of a muscle. The best way I can describe it is to liken it to a meat tenderizer. Small incisions are made so the doctor can access the myofascial (the place where the muscle and tendon overlap). Once inside, hundreds of micro incisions are made in the myofascial, much the way you would tenderize a tough steak. In addition, Carter would have an alcohol nerve block done to help reduce the amount of constant knee pain he felt.As I said earlier, there is much success with this procedure in the CP community but very few people with spina bifida have tried it. After a lot of ...
You Are Very Loved
Dear Wyatt Samuel,You probably don't know this but in two days your mom and dad will leave your 3 sisters behind in California and make a 12 hour flight to meet you in Russia. That's them:I have to be honest with you little guy, when your mom first started talking about you I thought she was C R A Z Y! I thought it was a phase she was going through. I mean, seriously, she is just coming out of the hard years with Hannah (your sister who also has spina bifida), she has 3 girls, and to be honest, things in their lives have been a bit rocky the past year or so. Why in heaven's name would she really want to adopt another child with spina bifida? One child with significant special needs is already so hard.I clicked over to your picture on Reese's Rainbow and I saw what she saw. I imagined you not having access to the medical care that has made Carter's (my son who was born with spina bifida) life as full and wonderful as it. My heart broke for you knowing that your future would likely be spent in an institution because you had a physical disability. But I still thought your mom was C R A Z Y and, honestly, I doubted she could ever pull it off.Boy was I wrong! Your ...
Is a Disney Cruise Right for Your Special Needs Family?
Before I left for the media preview Fantasy Cruise last month, I did some price comparison. While my husband, oldest and I have all cruised multiple times, I have yet to take our youngest. And I feel really badly about that. But to be honest with both the wheelchair and autism hurdles to overcome with him, I just have never been quite sure how he would do. Since he is such a Disney fan I always thought that his first cruise would probably work best on a Disney ship. Every time I went to book one though two things stopped me: the price and the fact that they always seemed sold out of the itineraries we wanted.Disney cruises aren't cheap. Comparing the cost between two fictitious similar itineraries to Mexico, Princess Cruises were close to $3000 less than the Disney counterpart & 3 days longer. ;Which is the point where I would take my hand off the 'book' button and walk away, dazed and confused to exactly why I thought that sailing on a Disney ship was going to be so much better.I'll be honest. I posed this question to several friends that had cruised Disney before. They all assured me that once I was on board I would see why they are almost always booked and ...
Special Needs Kids Are Kids
Christmas is a hectic time of year for shopping. Most of us dread the long lines, sold out sale items and kids having major meltdowns in the checkout aisles. But while I was out shopping the other day I saw something that so reminded me of when Carter was younger. There was a child that obviously had special needs, having a complete tantrum in the middle of the store, and the mom is trying to deal with it while people just walked by and glared at her. The look on their face was one I have seen many times: horrified shock that she was disciplining this poor child. She wasn't out of control or anything like that, she had just had it with this kid and was at her limit too.It took me back so many years ago when Carter was finally mobility independent. You know that period when you start teaching them to walk in the store, rather than put them in a cart? Most kids go through this around 2? Carter was probably closer to 4 and had an extra few years worth of excitement in him. He would roll down the aisles and sweep stuff off the shelves in pure joy. And I would get mad. Like any other parent would, like I did with Connor, and I would tell him "if you can't behave yourself I will take ...
An Open Letter to a Special Needs Mom
Dear Friend,Close to 4 years ago our friendship started with a desperate message from you for some help, some guidance, some information, something that would tell you all would be OK with your little girl. You know now that I get those messages a lot. But something in yours was different. You reminded me so much of, well, me. I picked up the phone and we began our friendship.Through the years I have given you lots of advice for helping your little girl. And in return, you have become a source of information for me as I began uncharted waters with certain treatments. Some days I am sure I offered too much information and you thought, clearly, I must be crazy but most things I have been pretty on target with.So I hope you will trust my advice now.I know you are scared and I know how you feel. And I know that there are very few people who can truly say that they understand your world. I do. I lived it and continue to. You are SO much like me when I was in your stage.So now I have some advice for YOU. Not for your daughter. This is just for you. So listen up because I wish someone had told me this years ago.In the 3 years of your daughters life you have gained ...