As usual, it has been a very long time since our last blog entry. Things have been busy in the McCue home - juggling the 3 kids, jobs, and all the extra-curricular activities. We'll try to catch everyone up on the highlights of the last 6 months in this entry. The last two weeks have hosted 2 birthdays in the family. First, Madison turned 8 last week and celebrated with a "Rock Star Slumber Party" with friends. It was the first sleepover party for Madison as well as Mom and Dad, so there was some concern (fear) heading into the party. But, the girls were too busy with the new karaoke machine, Twister game, and High School Musical 3 DVD to be too much trouble. They outlasted the parents well into the night, but a good time was had by all.
Yesterday, we had a family celebration for Madison and Nathan. Nathan's 4th birthday is today. We had a nice day with Uncle John, Aunt Kelley, cousin Jennifer, Grandma, and Pop at the house. Nathan took a brief snooze during the gathering, but was awake to open/receive many new CDs to enjoy for a long time to come. Nathan's favorite activity continues to be music so he really enjoys receiving a variety.
It is hard to believe that we are celebrating his fourth birthday when many of his first doctors did not expect him to celebrate even one. Apparently, those doctors were not considering Nathan's will and wonderful support group which includes family, friends, therapists, and even people who hardly know him. We are so grateful for all of the help, thoughts, and prayers that have helped our family get to this point.
So, getting to Nathan, it has been a LONG time since we have posted any news about his health or status. He has set an amazing record by staying out of the hospital for 8 months. I have to be careful not to jinx anything (my track record of posting good news in the blog is not very good), but this has been a good run. He has had a few upper respiratory infections and other unexplained illnesses during this time, but we are usually prepared for those and they were not too serious. Unfortunately, he did spend his Christmas break sick and is now fighting some bug that makes it tough for him to really enjoy his birthday.
We still have not had success controlling his seizures and the frequency of the seizures continue to wreak havoc on his strength development and retention. He has had a few really scary seizures that make us stop and wonder what may happen next. We don't have any promise of new or different treatments, but there is a new seizure med on the market that is targeted for his type of seizure disorder. His neurologist does not hold out much hope that this would work, but it something we may try. The most recent visit to Shriner's Hospital determined that his left hip continues to sublux and is likely to be completely dislocated within a year. There is a strong likelihood that the right hip would be next to go, too. Additionally, his bone density is still a concern. They are fairly brittle and the lack of weight-bearing on his legs keeps the bones from strengthening despite efforts to build strength with his stander and gait trainer. We will keep working him on this equipment, of course, in the hopes that he can improve his weight-bearing to supplement all the calcium supplements he gets daily. The one upshot of the hip issues is that Nathan's low muscle tone seems to have kept him from experiencing pain from the dislocation (at least, as far as he has expressed to us). We are also very excited that Nathan is now using a gait trainer and absolutely loves it. He is not exactly walking in it, but he does lift his legs as if he is trying to take steps independently. Very Cool!
The other major bummer of late has been our seemingly futile effort with the school district. It is too complex to explain it all in this blog, but we continue to spend a lot of our energy just trying to get Nathan the bare minimum services and to hang on to his private nursing. We may end up not having him in school, which is too bad because he does really enjoy it. I was hoping that the school district would employ the trained professionals that could help us develop his speech & communication skills, among other things. But it was clear to us in our last annual review that the school specialists that have been working with him for one year, do not even understand his current abilities to communicate, recognize cause and effect, and his love for using his vision to look at books. The cool thing is that we do know that Nathan has these talents and is really trying to communicate with back and forth vocalizations, using switches, and expressing his likes / dislikes. It may be up to us to develop the rest over time.
Much Love, The McCues
