Hope for a Shriners Hospital Miracle

Thought I would give Mr. David some love today. I really need to post here more simply because there is so much to say. So much in fact that sometimes it is overwhelming. David so far has had a good school year. He started the year having dental surgery but it only kept him down for a day. Other than a day or two and some doctors appointments, David has been able to stay in school. His daily attendance helps him to progress and gives him stability and routine. He likes school even though he tends to rebel from time to time.

David just had his baclofen pump checked a week ago. His bp is a pump inserted into his stomach and wires or tubes that attach to his spine. Every six months baclofen (a muscle relaxant) is injected into the pump and the pump in turn distributes the med to his lower extremities on a schedule at the exact time and the exact amount every day. This pump doesn't work for everyone....but for David, it has helped to loosen his leg muscles immensely. Sadly this all would work for David much more efficiently if he didn't have a few strikes against him.

His first strike is that finding and keeping a good physical therapist (pt), one that has some experience, doesn't just want to put him in a stander and call it good and one who has the vision to see Davids potential and not just the here and now are hard to come by. Second....because of his seizures he is on a three time per day cocktail of meds and some of them come with less than fun side effects. The newest med they have put him on is Depacoat. By new I mean in the last 6-10 months. The Depacoat has definitely helped to put his seizures in check but the major side effect is aggression. Most days the aggression is light to moderate with some pinching and hair pulling, but some days we have full fledged tantrums with biting and crying. The school paras have learned David's behaviors and handle him with relative ease as we do at home, but when you combine the aggression with trying to stretch him (something he hates on his best days) then it makes for some difficult pt. And because of lack luster past Pt's who didn't "make" him walk with his walker and feel the need for stretching....David's mobility is nowhere close to where it should be. The fact that David is now weighing in the 70's does not make transitioning him and moving him easy on anyone.

As I watched David exceed in every other avenue but mobility I was starting to feel a bit of desperation feeling that he was not being helped in the manner he needs to be. As always seems to happen....God gives us what we need when we need it most. He put a new friend in my life.....whose father was a Shriner. Now of course I have heard of Shriners before. I mean I have been to parades....duh! But never had I really known what Shriners do. Jill gave me a run down and told me that she had spoken with her father and they would like to sponsor David to go to Shriners Hospital in St. Louis. I was excited to the point of being sick. So we got the paperwork, got it filled out and we were underway. The road was not particularly quick as I started the proceedings last spring.....and David's seizures almost made him ineligible to go to St. Louis, which would have meant starting from scratch to seek acceptance at another Shriners hospital, but low and behold.....we got a date.

I was informed that in late January, David will be seen at Shriners. What does this mean? This means David will be seen at the hospital by some of the finest orthopedic doctors in the country and his case will be reviewed by a team of doctors and therapists to see what direction needs to be taken to give him the best chance to walk. They will decide if assistive equipment is needed, if he needs surgery, braces or all the above. The best part is all of this is taken care of financially through the Shriners. This includes our travel expenses and lodging if needed. Thankfully we won't be needing lodging as we have family there we will be staying with. It is a blessing I was not expecting this time last year. Even if this means we will be trekking to St. Louis on a regular basis for awhile....every mile will be worth it if it means David can be mobily self sufficient. That and my family will no longer be able to say...we never visit.

David's world is one of walkers and wheelchairs and meds which make him mad. Daily he fights to communicate in a place where words are difficult for him and yet he knows what he wants and means. Despite all of this....David is basically a very happy kid who rolls with the punches and takes things as they come....both the good and the bad. I am hoping that this trip to Shriners may end up being a whole lot of prayers answered at once and a new path to a more self-sufficient life for David.

One of my greatest dreams would be to see David run and play with other kids. While I know the likelihood of that dream coming true is slim to none, I would settle for David being able to walk and I know if that day ever comes....there won't be enough Kleenex made for the tears of joy I will shed. For now though...I ask for prayers and good thoughts that come January....my little guy....The Incredible Mr. David....gets a great big Shriners Hospital miracle.