The Other Side. . . All the possibilities!!

There are some really exciting possibilities that we are going to be a part of and other ones that are potentials.

First we have the potential of being seen and treated by a Neuro Spine Care for Kids! I am meeting with our pediatrician on Thursday to discuss this as well as several other items on the list. But I am so excited that Children's Healthcare of Atlanta has this facility here in Atlanta for children just like Thomas. They are ranked among the top ten centers in the nation for treating the kids with unique needs such as ours. There is nothing like finding such a resource so close to home and them actual listing Klippel Feil as condition they treat!!! YAY!! More to come, I hope!

Second, we have had our consultation and sent in all the consent forms to Madison, Wisconsin. The Dr who is at the University of Wisconsin Madison, so has been studying the genetics on KFS and will be continuing as he is very passionate about this. He is in contact with NORD (National Organization of Rare Diseases) and has gotten a grant through them to fund this research. He is hoping to get enough people participating in the study to apply for another grant through NORD for continued funding. While this won't benefit Thomas personally, it could definitely help the advanced of science now and in the future for others diagnosed with KFS.

Shriners Hospital - I have met with our sponsoring Shriner and discussed the application and approval process. We still are uncertain about Klippel Feil being a syndrome that they would be able to assist us in but it doesn't hurt to get a second opinion at their costs. My only hold up is medical records, which I have been working on. Supposedly I will have these next week and then we can submit our application. It may take four to six weeks after that.

Babies Can't Wait - I swallowed my pride today and contacted our regional director for Babies Can't Wait in our area. I have to admit I have a bad taste in my mouth because he was sent to them with the diagnosis of hyptonia and torticollis. The PT infrequently came to our house and cleared him for the torticollis. Ummm. . . ok. Well, now we know he doesn't have torticollis he has Klippel Feil, he still has hypotonia and is need of PT, ST and OT. So, I requested a reevaluation of his record in light of the new diagnosis. I hate to judge the entire program on the miss that one PT made, but its hard when its your child. Plus I have been working with the therapists at CHOA who are amazing and extremely knowledgeable. My thought here is, alone we cannot afford to pay for private therapist with CHOA without the Medcaid. So, in case we don't get it I will use the free services offered by the State and pray that God will guide them to provide the best care for my son.

Quick Update: The director just called me back and I am really excited!! We discussed the program and how it could benefit our concerns with Thomas right now. We are going to meet next week to discuss it in more detail but it looks like we could benefit from their Speech Therapy program at this time and continue with CHOA for the PT and OT. We talked about a spectrum of topics and she was very agreeable with me on my thinking and thoughts and what I had already done. We discussed the Katie Beckett and even the fact that Thomas will turn 3 next year and they will help transition him to the services provide by the school system. Oh my!! I love it when I get validation from someone else that I am doing all the right stuff!!

Deeming Waiver (Katie Beckett) Medicaid Application - Working on it. I have started typing up the medical necessity statements, level of care required and calculated the costs basis they need. I still need to make a phone call to make the appointment for the physiological evaluation. I am hoping to have my documents ready for my physicians signature on Thursday but that may be a bit hopeful since I am also trying to go to sleep a bit earlier at night and not work so much. I also need to call the Social Security office to get our denial letter. I think I have it organized and getting it together and I am asking for help from friends who have been through this process and successful. What a God Sent!!

So, I know my last blog seemed pretty dark and grim and for those who know me, know that it was hard for me to write that and divulge that type of information. But I felt it was necessary to explain the dark side of this. I think one of the hardest things about KFS is that you keep having to explain (or not) why my child is not normal and why he does need assistance. It is hell to discover your precious baby has such a syndrome and has these challenges set before him. There is no reason to sugar coat it. But there are millions of possibilities and I am the type of mother who will research, make calls, read reports and dig until I can find the best care and plan for my son. One that works for us as a family, works within our budget and works best for Thomas. An old, dear friend said it best when she said these words: "Allison, I completely understand what you are meaning to convey. We, as parents of special needs children, will constantly walk a fine line between living for today and planning for tomorrow. It is a balance we must create as we are not borrowing troubles, simply planning for the future, whatever it may hold. I truly understand!" It made my heart smile to have someone with such a loving heart and beautiful children like myself feel and understand what my words were trying to say. Thank you!!

Thomas has been listed as part of the "Hands Across America" for the Rare Disease Awareness Day set for February 29, 2012. Once you submit a picture they may use it as necessary. I had no problem with that but to get the picture was a hoot. After beginning our work with Wisconsin, I now support NORD and their efforts and they are one of the organizations in conjunction with Rare Disease Awareness. Check it out if you get a chance, the link is on the right side of my blog.

Enjoy my efforts to get a decent shot: