So sorry I haven't posted anything in the past couple of month my computer has not been working. Many of you have been asking how Tylor is so I will try to update as well as I can.
Tylor is now NPC 60!!! He was officially the 60th kid with NPC to be seen and samples taken from for research at NIH.
Tylor's trip to NIH went very well. He traveled on the plane better than I thought he would. Jill brought here iPod Shuffle and Tylor really liked listening to them while he was people watching in the airport. Tylor only had to stay in the hospital for one night but we were able to have the room to chill in while waiting for his other appointments through out the week. It was much more relaxing for all of us to have a private place to sit instead of a waiting room. And we did a lot of waiting but hey it's not like we had anything else to do. We decided not to leave the NIH campus because going through security is as bad as the airport. But we found plenty for Tylor to do while we were there. He got to meet the Children's Inn service dog (and for the life of my I can't remember her name), went to the arts and crafts room, watched a movie on the big screen and ate popcorn, and there was even a Christmas party for all the pediatric patients. Tylor got to see Santa and make a gingerbread man there. They also had a huge display of gingerbread houses made by different departments at NIH. Tylor really liked looking at all of them...they were all amazing!! We got plenty of ideas for our gingerbread house next year.....
Well now onto the boring but important stuff. Tylor did very well with the sedation this time around. He was not sick after and was able to eat and drink just a few hours after he got out of recovery. They did find some atrophy in the brain, which is common with NPC as well as some high frequency hearing loss. He was such a trooper when he had his hearing test. The test was over two hours long and they still didn't get everything they wanted but Tylor had enough at that point. The morning after his sedation we had an appointment with the speech therapist but before we left for the hospital Tylor had 16 seizures and we pretty wiped out. The speech therapist tried to do some things with him but asked if we could come back the next day to see if she could get a better assessment of him. He did much better the next day and she commented on how much his truly understands. She was actually very surprised and happy about this. She was happy to hear that he has a Dynzvox to help with communication. Our last appointment was with the Peds neurologist. We talked about the medication his is on and a little bit of his health history. She then did some eye movement exercises with him, checked his reflexes and told us that she thought he was doing pretty good considering he had NPC.
After all the tests were completed we had a follow up meeting with Dr. Porter and Nicole. We went into great detail about Tylor's health history, the years of meeting with doctors while trying to get a diagnosis, previous tests he has had done and how things are going now. They gave us a patient copy of all the tests performed there. They still had some questions about past health history that I couldn't answer so I sent them the information when we got home to make sure his file is complete as possible.
He will have a follow up appointment in a year...
Before we left for NIH we did some holiday baking. Well not really baking because I can't and Tylor doesn't like to eat hard cookies. Jill, Liv, Kate, and Janelle came over to make chocolate dipped marshmallows and a gingerbread house. The girls really enjoyed helping their big brother! Thanks girls you are best sisters!!
The holiday was very nice this year....we were really busy but it was full of spending time with family and making great memories. Tylor got to spend both Christmas Eve and Christmas with both my family and his family. It was very nice that it worked out so well and that way both families get as much time possible with him.
January 16th Ty had his 6 month check up at Mayo. Just like the appointment at NIH, things went very well. Some change is meds but other than that they told us to keep doing what we are doing!! Again Dr. Patterson is amazed with how well his is doing!!! This makes me feel so good. There is not one day that I forget Ty had NPC but to hear his doctor talk about how well he is doing it puts some of the sad thoughts in the back of my mind.
Tylor also had his Special Olympics Basketball tournament last weekend. He was so alert and having a blast. He made a couple of good passing to different teammates who then scored. He was excited to see Ryan, Jill, Liv, Kate, Will, Drew, Rachael and her daughter, Teri and Touy came down to watch. His team took 2nd PLACE!!!
Well I think that is pretty much it!!! I am sure I will remember something else so you may see more posts with updates over the last couple of months.
Pictures will be added later.