We just returned from our fourth visit with the Family Hope Center (FHC) in Philadelphia….WITH A CAST ON KEVIN’S LEFT FOOT! (read more below).
The day after the unusual October northeast snow storm, we traveled across the state of Pennsylvania and drove by sections of snow and sections of beautiful autumn colors interchangeably. The Rest Area, where we normally stop for lunch had a picnic table full of snow and the temperature was 30 degrees…so we had a quick bathroom break and ate our lunch in the car.
We arrived at the hotel just as the Steelers game against New England was about to begin. I think Kevin was so excited about the Steelers winning the game that he didn’t sleep very well our first night. The next day was his evaluation and he did remarkably well on so little sleep. I can remember our first visit with FHC and a similar first night of no sleep and a very stressful evaluation, so that in itself is a positive change. After lunch, Jon and Kevin found a quiet corner in the clinic to lie down and Kevin actually fell asleep…that’s how tired he was…he normally will only take a nap on a program day, and only in the Hyperbaric Oxygen Chamber.
As you know our greatest problem has been Kevin’s digestion. And we did make some progress with this in the last six months but there is still more improvement needed in this area. But the small improvement that we have seen has made a positive change in him overall because of course he feels so much better.
The other major obstacle has been Kevin’s left foot. It continues to turn inward and he has had several sprains over the last year. We made an extra trip to New Jersey in August to see the foot doctor. He recommended a new pair of orthotics for Kevin’s shoes, we also bought a snazzy pair of high-top sneakers to support his ankle, and we began using a muscle stimulator on his left leg. Dr. Joe did see some improvement but we all agreed to go ahead and cast his left foot for three weeks. This will help correct some structural concerns we are beginning to see in his left foot and it will also enable his muscles to relax and be given a chance to be neutral so that hopefully we can retrain it correctly. After the cast, we will go back to using the orthotics in his shoes, giving him several treatments a day with the muscle stimulator and of course do lots and lots of crawling with very good toe digs. In the meantime we can continue to do lots and lots of creeping while he has the cast on. The casting is going to require us to travel back to Philly once a week to recast his foot and put it in a better angle each time it is recast over the next few weeks….our current family theme song is “On the Road Again”. Casting actually goes against the principles of “the program” but the fact that we have done a good program (and tried 4 pairs of orthotics) and it hasn’t fixed his foot tells us we need to try something else. We have always been concerned about Kevin’s left foot even before he was walking. At that time we were with The Institutes and they do not believe in using orthotics and they did not have us doing the toe digs during the crawling this may have made a difference if we had. So we are hoping that the casting will help us start over and then continue to do a good program and produce a better quality walk for Kevin.
Despite this setback with his foot, overall there have been some very good changes in Kevin. There are several stories on the blog that I have shared recently showing his new problem solving ability and the improvement in his emotional and social behavior.
It was a little disappointing to see that Kevin’s neurological age did not change based on the neurological chart but he did make NINE quality changes on the chart…FIVE of the changes appear in Emotional and Social Development and TWO changes in Hearing and Understanding…which is no surprise to us!
Since our visit in Philadelphia was unexpectedly extended an extra day to do the casting of Kevin’s foot we got to spend a day as tourists. We discovered that our hotel was only 4 miles from Valley Forge. Kevin had actually already been there with his grandparents during an earlier visit but Jon & I had not. It was beautiful to be there with the fall foliage. And we had not been to downtown Philly since our very first visit to The Institutes 5 years ago. So we took a bus tour and went to see the Liberty Bell. Kevin has come so far since that first visit 5 years ago.
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