Tuesday, September 27, 2011

Williams First Weeks of Kindergarten

This is a little late but better than not at all. Will’s first day as a kindergartner was a few weeks ago and he was super excited to start. He rode the bus for the first time with all of his neighborhood friends. Most of them are older than he is so he had some good guides on his first day. We enrolled him in the all day version of the program so he could get used to being at school for a long period of time during the day. Luckily he had some kids from his pre-school class as well as kids from sports activities that he has participated in there with him.

I really like the school system our kids are attending. I even went up to Will's school today and had lunch with him and his class. The administration there is very professional and accommodating.

Now that Will has been going for a few weeks we are seeing that he is learning a lot. He can write dozens of letters all on his own and loves practicing his penmanship. We were reading Green Eggs and Ham last night and he was reading entire sentences on some of the pages. We are just so proud of our little boy and all that he is accomplishing.

Monday, September 19, 2011

Today was the first day of the rest of Kaela’s life, it was her first day of pre-school. After all morning screaming and crying about how she did not want to go, she did a 180 and was super excited. Sarah and I were sort of apprehensive about the whole experience as Kaela needed some accommodations in the classroom and we weren’t sure how that was going to look. The school came through in a very big way though.

Kaela stands about 34 inches tall which is quite a bit shorter than the typical preschooler. Not to mention that her arms cannot go straight above her head. Hooks for coats in the class room were easily 4 feet off the ground, impossible for Kaela to get to without something to step on. The teachers screwed hooks into the wall about 24 inches off the ground for Kaela to hang her bag and coat.

Other areas in the classroom where Kaela may have needed help are the drinking fountain and the bathroom. While the drinking fountain could have waited, the bathroom was obviously an important item to address for her first day. This was also my favorite part for Kaela to see. The school had made custom stairs made of wood with a railing for Kaela to walk up to the toilet and also the sink all by herself, no help required. There was also adhesive non-slip material applied to the steps so that she, and other kids, wouldn’t slip and fall.

Overall I was very impressed with how the school stepped up and made these accommodations. We also got a chance to come in before class and try them out. I’m glad that we live in such a supportive community that is eager to help make Kaela’s school experience a good one.

Friday, September 16, 2011

Visitors To Kaela's Blog From Around The Globe

In the past month we have had 120 visits to Kaela's blog from 11 countries or territories. 98 of them have been from places within the U.S. alone. Great to see that people are finding the blog and getting info.

Analytics Adayinkaelaslife.blogspot.com 20110815-20110914

Thursday, September 15, 2011

Kaela's First Appointment with Dr. M

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.

Wednesday, September 14, 2011

Our first trip to Delaware

Sarah, the kids and I have begun our trip to Delaware to see Dr. M. We just finished driving about 5 hours and are somewhere in Pennsylvania. We decided to start looking for a hotel around 11 pm only to find out that at this time of year in this part of the country, finding a hotel room is next to impossible. The kids kept asking if we are at the hospital yet. After driving an extra 100 miles we found a pretty decent Hampton Inn with two rooms left. A bit pricey at 140 bucks a night but beggars can't be choosers.

Tomorrow we will make the final trip into Wilmington. We can't wait to see all of the families that we have been in contact with online over the past couple of years. It will be fun to meet face to face the people we have been chatting with online or talking with over skype. Better get to bed, its 2am in Pennsylvania and we have an early morning and 5 more hours of driving tomorrow.