May 29, 2001
Big, big news!!! Grady has been working with a walker during his PT sessions for the last few months. Today he walked across the gym and went out the door and down the hallway on his on steam. Nobody pushed him or supported him at all! I didn't get to see it but Mellissa called me and was very excited and crying. She said that he followed her and that everybody in sight was cheering him on and that he loved it. He kept himself upright with one arm on the handlebar of his pony walker and he held his head up and took lots of consecutive steps before resting and taking off again. They had to redirect him every now and then to keep him from running into things. Unfortunately we didn't have the video camera at today's session. Maybe he'll do it again and we'll get it on tape! Pretty amazing for someone who can't sit or roll or keep his head up for long!
While I'm doing this update, I'll recap what's happened since September of 2000 when he started pre-school at the Western PA School for Blind Children. He generally loves preschool. He loves circle time, playing games (he wins a lot somehow), art, music, and swimming. He doesn't like stander time, or sitting in his Rifton chair but has made good progress with a tumbleform chair, using his kidkart for transportation-only purposes and with side-lying. He generally got good reports sent home (with several gold stars) until mid-March. In mid-March he had a prolonged seizure because his medication level in his bloodstream dropped. After a visit to the ER to get some IV drugs and an increase in topamax, he hasn't had any more seizures but he has cried a lot at school since then. Now good reports are more the exception than the rule. We are working on adjusting his meds for dystonia and spasticity under the assumption that those may have dropped too (probably due to some growth). At home, he is still more tense and stiff than before the seizure but we've seen some improvements with the increases in klonopin.
We also are having some problems with him biting his fingers and thumb on his right hand. He isn't doing it on purpose but it only happens when he is awake. He brings his hand up and it gets stuck in his mouth and then he gets upset and clamps down. It happens too quickly sometimes to prevent. He bit his thumb so much that his thumbnail fell off. The only solutions offered were a sock and an elbow splint both of which require approval from a board at his school because both are potentially cruel treatment. I made him a modified glove that covered just his fingers and were held together by a wrist strap. This takes a bit of work to get on and in choosing thick enough fabric, his range of finger movement is restricted. His teacher's aide, Stefanie, fashioned a cone of "fun foam" and velcro that we put around his elbow. It is easy to get on and off and works well enough that his thumb nail has almost grown back (although it still looks bad). We generally put it on his arm only when we aren't going to be close by him (like in the car or if we momentarily go to the kitchen or bathroom). That means we miss occassionally and too he can still accidentally bend his arm and hand enough to get his hand stuck in his mouth.
Generally he has been very healthy since school started. We only had problems with his right ear getting infected this past winter.
Grady will be taking the summer off from pre-school. We will go to DisneyWorld a few days after the end of school and then when we get back he may be attending the Conductive Education Summer camp which is 2-3 hours per day for 5 weeks. That is contingent upon space. We are on the waiting list for his age group.
September 13, 2001
The summer didn't turn out as planned. It looked as if there would be room for Grady in the Conductive Education Summer program but unfortunately he had to be cut because the number of conductors was smaller than originally planned. He did go for evaluation after the program started and we'll try again when the next program starts.
We did go to DisneyWorld and had a very good time. Grady rode around in his Kid Kart and we took him out and held him in our laps during shows and on rides. His favorite ride was the Buzz Lightyear Spin. He laughed and laughed at the spinning and laser shooting. We even got our own special meeting with Mickey Mouse as well as Minnie, Goofy, Pooh, Tigger, Eyore, Snow White, and Cinderella. I think that Goofy was his favorite but he was in awe of Cinderella.
At this point our summer further diverged from our plans. While we were returning from Florida, we got word that my Mom had had a major heart attack that then precipitated a stroke that damaged the Broca's area of her brain. I spent the next month travelling back and forth between Pittsburgh and Northwestern VA. I saw very little of Brian and Grady during the month but as things were looking better we went to one of Grady's former babysitter's wedding. Grady had a grand time and looked at Meagan with just as much awe as he had for Cinderella. Grady got in a lot of dancing in people's arms.
Although, Mom improved for a while and transferred to rehab, her condition suddenly worsened and she had to return to intensive care. I returned again to Virginia and she died on July 27th of respiratory complications. I then travelled back to Pittsburgh to get Brian and Grady so they could attend the funeral with me. This was Grady's first big car trip and he did quite well with us stopping every 1-2 hours to give him a break from his car seat. Grady seemed to handle everything quite well until just before we returned home. He had a seizure and we had to take him to the ER in Virginia. Having spent so much time at that hospital, I didn't want to go but they were wonderful to us and our insurance seems to have handled it all without trouble. An ear infection which developed afterwards is the only thing that could be found that might have triggered the seizure. He has been fine since then.
Since Grady did so well with the trip, we went back to my hometown in VA over the Labor Day weekend to celebrate my Dad's 72nd birthday. Grady again had a reasonably good trip and very much enjoyed his visit with Granddaddy, my sister and her adult children. No seizures this time.
The next day Grady started again at pre-school at the Western PA School for Blind Children. He is much more tolerant and seems to be enjoying school so far.