Jack had a great time at Halloween. We trudged over much of the neighborhood taking in as much candy as they could dish out. Halloween has always been so much fun with our neighbors as the adults use it as a means to socialize. Jack dressed as Woody from Toy Story. He kept saying "There's a snake in my boot" all night long.
Jack continues to improve both from an emotional and physical standpoint. We are really pushing the walking and I think he is starting to accept this as his primary means of getting around. He was playing on his computer the other day, which by the way, on which he is requiring less and less guidance, and he decided to get off the chair and head in the living room to watch tv. He did this all without talking about it or asking for help or anything. He is starting to discover his independence and it is a cool thing to see.
Wow. Can't believe it's been over a month since the last update. I will definitely try to do better in the future.
The good news is that Jack has been improving the last few weeks in terms of emotional stability as well as his mobility. He is much less fussy than he was after the surgery and he doesn't wake up crying any more. He also is gaining strength in his legs. Lisa and I kind of layed down the law that he wasn't going to be allowed to scoot around anymore. We are making him walk everywhere including upstairs.
He actually was due to participate in a race today at the school but it was cancelled due to the weather. He has been using a walker at school (instead of the motorized wheelchair) and really moves quite quickly in it. It is great exercise for his legs.
We go back to see the Duke doctors in a couple weeks.
The next big task: potty training him. We have attempted this several times with little success so if anyone has any ideas, don't keep them to yourself.
Jack is still experiencing extreme fussiness and it doesn't seem to be getting any better. He is still struggling in school. We will be seeing his neurologist soon and will discuss options at that point. We're hoping he seems some relief soon as he is often not feeling well.
We had quick trip up to the Motherland (Ohio) over Labor Day to visit with Lisa's Aunt Dottie and her sister, Jo, in Ohio. It was a short, but very enjoyable trip. Here are some pictures.
Jack, Caylie and I on Aunt Dottie's porch
Caylie, wondering why she was tied to a post
Jack and his Great Aunt Dottie
Jack and Aunt Jolene
Jack and Scrappy getting ready for a ride in the Polaris
We wanted to share some memorable August events with you but also give everyone an update on how Jack is doing.
Jack has begun 2nd grade and is doing well. He has had one tough day so far but otherwise is faring pretty well. He continues to break down emotionally over little things that didn't use to bother him but I believe is beginning to understand that he can control that. If it continues or gets worse, we will talk to his neurologist about it. His new elementary school, Patriots, is great and they have been very supportive of Jack and we feel very confident that he will have a very good year.
Now, for some pictures....
Mom and Dad came to visit and Jack enjoys a little lap time while Grampy reads the comics.
1st day of 2nd grade!
with appropriate attire
Kris and Shannon's moving day. A sad day for us as Kris moves back to Chapel Hill for his 4th year of med school.
Moving that dadgum treadmill again. I thought that's why I gave it away?
Kris and Jack making their way to the big truck.
Kris and Jack
Jack ready to drive the big U-Haul
A "vacation day" for us as we took Jack to Discovery Place
I swear this child has talent on the drums although I'm not sure we want to promote this. He could be the most famous one-armed drummer of all time.
Sorry it's been so long since our last update but this has been a very busy time for us. I've been doing some traveling for business and Lisa has been taking Jack to a lot of therapy appointments before school starts.
Jack is doing pretty well but remains very fussy most of the time. The hallucinations have pretty much dissipated as best we can tell but he wakes crying most mornings and abruptly changes emotions frequently.
We are concerned about him starting 2nd grade with this going on but we are meeting with school administration and his 2nd grade teacher tomorrow to discuss the upcoming year. We feel confident that they will keep his best interests at heart.
We recently celebrated Shannon's birthday. Here are a couple pictures from her and Kris's visit.
Not much to report on Jack. I'm home from NY finally but Lisa says that he's about the same. Still having hallucinations. He's still not experienced any seizures but the hallucinations are puzzling. They are not very severe and he can be easily diverted from them.
Otherwise, he is eating and sleeping well and generally in a good frame of mind.
We were at Duke yesterday for our follow-up visits with the neurosurgeon and neurologist. Jack also had an EEG done.
The neurosurgeon was very impressed with how well Jack is doing physically. Jack walked a few steps for him and he thought he looked real good considering his surgery was just last month.
We discussed the hallucinations with both doctors and neither really knows the cause of them. The neurologist speculated that it could be something similar to "forced normalization" where the brain reacts to the stoppage of seizures by producing a psychosis or vice versa. He also said it could be just the brain re-balancing from all the trauma of the surgery, the different medicines, etc. He was optimistic that it is a temporary thing and that he should continue to improve.
We also discussed the results of the EEG. His right side looks normal, i.e. no seizures. And interestingly, he can still see the seizures firing away on the left but since the disconnections were made, there's no manifestations of them. Pretty amazing.
And of course, the best part of all, still no seizures since June 2nd. So, we will continue on the one medication for now and hope that the hallucinations subside soon.
Well, we got home late last night, around 8:30. I am packing and heading for NY for 10 days on business. We will talk to you all soon.
Jack seems to be improving each day as he didn't appear to have any hallucinations today at all. He actually slept 16 hours last night! He complained of a headache tonight but other than that had a very good day. He even did some walking for Mom this afternoon.
Jack is now on only one medication; an anti-seizure med that he has been taking for many months and tolerates well. All other meds were stopped earlier this week. This is pretty amazing considering he was on as many as 6 or 7 at a time at one point.
We're hopeful that he is on the road to a complete recovery.
While it is wonderful to be home, Jack is still feeling under the weather. The hallucinations have returned and he is fussier than ever. We are hoping that all this is medicine related but we will need to contact the neurologist to see what's going on.
Now that Jack is finally home after being away for over a month, we would like to make
somewhat of an attempt to thank everyone for all they have done for us. While it would be
futile to try to list all the names of everyone, we can at least list all the different and amazing WAYS that people have helped us.
So, thank you to all our family, friends, neighbors, work colleagues and church for the tremendous support.
Here we go:
innumerable cards, toys, books, balloons, silly bands, movies and stuffed animals
two signed letters from famous people: E. Gordan Gee, President of the Ohio State University and Bill Conley, Head football coach at Ohio Dominican University
many, many hospital visits
gift baskets for our trip to Duke Hospital which included snacks, drinks, toys, books, Visa gift cards and a restaurant gift card
donations to paws4people
money for dog food for CAYLIE
babysitting Jack so Lisa and I could go out to eat
staying overnight with Jack so Lisa and I could get a break together
mowing our lawn for us while we were away
cleaning our house for us while we were away
a Sony eReader that allows you to download and store books electronically
A special thanks to all the doctors and nurses at Duke Hospital that took such great care
of Jack while we were there, especially Dr. Gerald Grant.
A VERY special thanks to the nurses and therapists on 4th floor Levine that have always taken such great care of Jack. Many were there when Jack first arrived from PICU back in 2005. Also, thank you to Dr. Colleen Wunderlich and Dr. Maureen Nelson for their superb care, as always, of Jack.