Today was Kaela’s appointment with Dr. William Mackenzie at theNemours/Alfred I. duPont Hospital for Children. This was our first formal appointment with Dr. M. We have seen him twice before at regional and national LPA conventions where specialists like Dr. M donate their time to meet with families of children with dwarfism. Today Kaela had x-rays done and not too much has changed since the last time we had imaging done at the University of Michigan medical center. We did however get a more accurate picture of the next steps we should take and when we should take them.
We have long expected that Kaela would need another series of surgeries to correct the kyphoscoliosis in her back. The only things we were unclear about were when that would take place and what would trigger the decision to start doing it. Our doctors at the U of M have been wonderful and have already pulled off a successful Laminectomy and C-spine fusion on Kaela in February of 2009. Dr. M however has extensive experience with children with Metatropic dysplasia and has been perfecting a method for correcting curvature of the spine.
As of this appointment, Kaela could have her surgery when it is most convenient for our family and in the near future. The curvature in her spine has reached over 90 degrees which is about the point when these kids have the corrective procedure. The entire process takes at least two months so we will need to begin it during a time when Kaela will not be in school. We are thinking that next summer may be a good time to get it done which will be a good time for our family as well as good timing before her condition worsens to a point where she can’t get around as well.
Another great part of this trip is that we got to connect with other families that my wife and I have been in contact with over social media. We are very lucky to have these channels to connect with families who are going through the same experiences we are and that have children with such a rare condition. We met these families for the first time yesterday and it already felt like we knew them because of the relationship that was cultivated over the internet.
Overall we have had a very good experience here at the DuPont hospital. It was far better than I ever expected it to be. Dr. Mackenzie, Chris from hospital PR and Colleen, Dr. M’s nurse were all extremely accommodating. They even planned a pizza party in one of their conference rooms for all the MD families. Chris from PR contacted the local NBC affiliate to do a story on all the MD’s that were in one place at one time. Even though there were only 6, when there are only 90 sum cases in the world, 6 is a big deal. The local news couldn’t find a way to make it work although there may still be some stories in the works as well as something on the hospital’s social networking accounts. Dr. M and Colleen are pictured below with all the MD kids that attended.