January 19, 2000
My apologies for not keeping Grady's progress journal current! Overall Grady has been doing well so that is not the reason for the lapse. I had to cut out as many extra activities as I could in order to finish up my dissertation. I turned in my report to my committee several weeks ago and will defend next Friday! I hope to go back to at least monthly entries now, otherwise I'll forget what happened when! I'll start by trying to summarize the highlights between September and now.
Grady seems to be doing quite well with his vision since the surgery in August and while his gastric problems are still there, they seem to be tolerable. In September, Grady continued to have intermittent low to moderate grade fevers. These seem to come and go within a 24 hour period with no additional symptoms. In retrospect it was probably a combination of teething and some remaining seizure activity. Since Grady had to be fever-free for 24 hours before returning to Child's Way for day care this was really making it difficult for me to get in time on my dissertation and finally convinced me that I needed to do something else about Grady's day care if I hoped to maintain even a part-time job after finishing my degree. So in October I ran ads for an at-home babysitter for a special needs child. Most of the respondents were nursing aides who could no longer get enough hours working for home care agencies since the insurance changes on home care nursing. But I decided to hire a young woman who is studying educational psychology and who had no experience with special needs infants and toddlers. She is so energetic, very observant and loves to play. It seems so far that I was right too choose development over medical.Grady continues to go to Child's Way for 15 hours a week and is at home now the rest of the time. When Mellissa is sick or needs time off, we can increase his hours at Child's way and when Grady is sick and needs to stay home, Mellissa increases her hours some. So far the new arrangements are working very well and Grady gets the best of both environments. He has plenty of quiet time when he needs it, even more one-on-one attention when he wants it, and can still interact with kids his own age some.
We did, after a big mix-up, get Grady's Kid Kart around the end of October. He seems relatively comfortable in it but is quick to object if there isn't anything interesting enough going to hold his attention. I think he squirms around when he isn't focused on anything and the Kid Kart prevents the degree of squirming he likes and that makes him mad.We also recently acquired a stander as well. It is not at all portable and that will be a bit of a problem. We haven't decided whether to leave it at home or at Child's Way yet. All this equipment (Kid Kart and stander) is much heavier than Grady is so I often feel achy from transporting it around. Also, I still haven't gotten use to all the accessories and often forget things like the trays and once I forgot the base for the Kid Kart. The Kid Kart has a detachable seat and two different bases, one for mobility and one that is like a highchair base. In addition to a tray that clamps on, there is a toy bar and an easel for the tray. The stander only has a try and unfortunately it doesn't easily detach from its base. I suppose I should develop a check-list to make sure I have all the parts!
Grady's seizures are I suppose considered controlled. He still mostly has problems when changing states from wake to sleep and sometimes from sleep to wake.
Grady is smiling and doing his version of a laugh much more these days and he seems to have decided to start vocalizing again have a year hiatus. It is good to hear him make happy sounds again!
For Grady's birthday this year we celebrated with a puppet show at Child's Way. He liked this much better than cake! I promise to get some additions to his photo album soon. Although I haven't taken many pictures lately, Child's Way as continued to do so routinely. It is a matter of me getting copies of the appropriate files from them.
February 29, 2000
Grady is continuing to do well. He seems to have settled into a routine and has been getting increasingly positive reports back on his therapy sessions. The latest is that his trunk control has made some recent very noticeable improvements and he is also keeping his head up for longer. Grady also seems to be trying to imitate my mouth movements when I talk to him. I get the impression he wants to vocalize but then chokes on his saliva. It is tricky to coordinate everything! In the next 6 months of in-home therapy we are going to be stressing communication by any means possible.
We think that the last of his teeth are now emerging. We'll be glad when it is over and so will Grady. I suppose that since he doesn't take anything by mouth his gums haven't toughened up and without chewing, the teeth take longer to push through.
We have his stander adjusted but to get use to it, he needs one on one attention to keep him distracted. It isn't a particularly portable piece of equipment so we haven't gotten it moved back from Child's Way to home. We don't have much room to move him around in it at home so I'm not sure how successful we will be with getting him use to it. Perhaps as the weather gets better we can take Grady and his stander outside so that we can move around more.
We saw Grady's opthmalogist today. He said that everything looks great. His eyes are aligned well and that he tracks and fixates quite well. I've been working on his distal vision some. I don't estimate distance very well but he seems to be able to pick out my hand waving as I stand very quietly about 15-20 feet away (he smiles after a while and he doesn't smile without some stimulus).
The biggest problem still is sleep. If Grady isn't well rested, he is difficult to care for and doesn't want to do anything. On weekdays Grady naps well for Mellissa but not on weekends and not particularly well when at Child's Way. I know that Child's Way can be rather noisy at the time when Grady usually wants to nap. I don't know if it is noisier in the neighborhood on weekends or he doesn't want to miss anytime with Mommy and Daddy.
Child's Way recently had a visit from our local public televison news program. So maybe all the kids from Child's Way will soon appear at least briefly on the Q show on WQED. I still haven't gotten the latest pictures developed and scanned. Soon!
July 16, 2000
I haven't had much to enter lately but there is some catching up to do. The kids from Child's Way did appear on the Q show on WQED in June. Grady is in a number of shots and they started out the segment with Grady and me arriving for the day. He looked really cute and sweet as did all the rest of the kids. WQED did a very nice job of it.
We've been working on getting Grady set up for preschool in the Fall. Everything is on track for him to start in September at the Western PA School for Blind Children. Grady, Brian and I went to preschool for the morning in June. We all had fun.
Sometime in May, Grady went for a 23 hour video EEG because we couldn't tell if his odd movements were from seizures or spasticity. The good news is that it isn't seizures. His seizures seem to be under control now with topamax and we have weaned him off of tegretol. With the elimination of tegretol, there has been a further increase in his happiness. Naps are still a challenge but nighttime is better. We are now working on treating the spasticity problems more aggressively. The only other health problem was a surprise attack of croup in June. We survived that with just one visit to the ER before things got too bad.
Grady goes on lots of outings with Mellissa during the day. He has been to the zoo and the amuzement park and goes window shopping and visits the parks regularly. He frequently gets free cookies from the bakery shop because of his winning smile. Since he can't eat the cookies he gives them to Mellissa. The pet shop is also a favorite. Grady now has a pet fish (a beta) named ugh-a. Grady also selected the hanging plants on our front porch.
We added pool therapy last month. Grady is doing very well with it. It really does help him to relax his arms and legs more.
October 13, 2000
Grady had a fun summer. He was cared for at home most of the time and went on many outings with Mellissa. Mellissa and I took him to our local amusement park, Kennywood. We all rode on the Merry-go-round with Grady and me on a horse that moved up and down; none of that wimpy stationary stuff. Grady was very calm but I was glad when the ride ended since I needed one hand to hold on and one to hold Grady. There was nothing useful for the feet, I think a real horse would have been easier! We also managed to ride through the haunted house but Grady wasn't impressed and in a car on a track. Otherwise the rides weren't really appropriate since the kiddie rides weren't big enough for an adult assistant to go along and support Grady and the adult rides wouldn't have been safe. Maybe someday someone will design some rides for wheelchair accessibility.
We went to the spasticity clinic in early September and being that he was the youngest there that day, he was there easiest case. Grady's baclofen doseage was increased but that was all. No talk of a baclofen pump or botox shots (there not just for plastic surgeons to use!).
Grady had some really great therapy sessions during the summer too. He was very active and attentive. The most exciting for me was a speech therapy session in which he responded to requests to find one of three objects in front of him with his eyes. He did this a majority of the times that he was asked and got it right.
Grady started at the Western Pennsylvania School for Blind Children
here in Pittsburgh in early September. He has been doing really well
with it and seems to be really good at the nursery rhymes games they play.Maybe
someday he'll be able to teach some new ones to me.