Learning to eat..

Learning to eat by himself has not been an easy journey for Jon. He didn't know what to do with a spoon or how to pick up a piece of food and put it in his mouth. When he was 2 years old we started a program for him called 'The Portage Project'. A trained person came to assess him, then together we worked out a program for Jon. During the week Jon and I would work on a certain task and chart the results. Then at the end of the week the teacher would come back and we would decide whether Jon had learned this task well enough and was ready for the next one. Sometimes we stayed on one task for numerous weeks. Learning to eat was one of them. Jon did not know how to pick up food, take a bite or chew. These simple tasks that we take for granted were not simple for him. I would set up a mirror in front of him at the table so he could watch what was happening. Then I took a soda cracker and 'sort of forced it' between his teeth, all the time encouraging him to watch in the mirror, then with both of my hands I would move his mouth so that his teeth would meet and he could hear the cracker break. We did this over and over throughout the weeks until he learned how to do it. It was the same with chewing, here I would move his jaw around with my hand so he would feel and hear the cracker being chewed. Soda crackers dissolve quickly, that's why they were used for this task.

By looking at this photo no one would guess how long it took for Jon to learn to hold a spoon. At first I wrapped cloth around the spoon handle so that he could have a grip on it. Then with much encouragement I would guide, more like force his hand from the bowl to his mouth. There was constant resistance from him. Then slowly as he accomplished holding the spoon I would gradually move my hand to his wrist, then to his arm, elbow and finally when he got that, it would often just take a wave of our hand over the bowl for him to start eating. We used to say that we were 'blessing' his food. Many weeks were spent in doing these tasks. He was a picky eater and it was hard to introduce new foods.

This photo makes me smile, I think he is saying 'do I have to eat all this?" :)

The Right Medications..

After we came home with Jon from the hospital we were faced with trying to get his seizures under control. With the neurologist's guidance we tried various medications but none of them seemed to work. Some of the meds made his gums grow while others produced hair growth on his body.

During this time his seizures were increasing and he had many falls. Quite a few trips to the ER to stitch up his lips or other head wounds. He would fall forward very hard when seizuring. We tried to protect him as much as possible, made a thick padding on his high chair table so that when he seizured he would not hit the hard surface. We also purchased a helmet for him. There was no helmet to be found in his size so his Dad fashioned the smallest hockey helmet we could find to fit him. As Jon learned to crawl he really needed this helmet as he would so often hit his head on the floor as he seizured. One day I counted 35 seizures. After the seizures he was very tired. He had started to string some words together but after a week of these intense seizures he lost all speech and it never came back.

During this time many trips were made to the Children's Hospital in Winnipeg to see the neurologist. We were desperate to find something that would help our son and then finally we got the news that there was a new drug available that had been quite successful in Europe and was going on trial in Canada. The new drug was sodium valproic acid. We were apprehensive but really had no other choice. Jon was one of the first ones in Manitoba to try it, we had to sign for it and for awhile there was no cost to us.

During this time we had asked for prayer at our church that this medication would be the one that would help and God answered these prayers in a most wonderful way. Jon's seizures decreased dramatically two weeks after starting the new meds. He still had many seizures a day but nothing like it had been.

To this day Jon is still on this drug (plus a few others) and although we have had to adjust the amount as he grew it has been the best one we have tried.

...stay tuned for more

Jon's Diagnosis

I have been blogging of Jon's interests and decided that I should give a little history of his life. Our son Jonathan was diagnosed at the age of 7 months with tuberous sclerosis (TS) More info of tuberous sclerosis at http://www.tscanada.ca/. At first the general practitioner thought it was colic but then reconsidered and sent us to see the pediatrician. Within minutes of seeing Jon the pediatrician suspected that there was brain damage and what had been thought to be colic were really seizures that he was having. He was admitted into the hospital where he underwent a lot of tests during the following week and it was discovered that he had TS. His prognosis didn't sound encouraging, we were told that he was severely affected and that he would never function at his age level. We were devastated and with heavy hearts we took our son home not knowing what his and our future held.

...to be continued

Rocks

Jon has always loved rocks! From a young age he has been fascinated by them. He loves to roll large rocks to see what's under them and will ask others to move them if he can't. Smaller rocks he will roll down a large hose and listen to them tumble along. Sometimes he will ask to have the rocks moved to a new location.
Nothing like a pile of rocks to excite this boy!

The Shed

Can you imagine having your very own retreat..to go there whenever you want to and to do as you please when you get there? This shed is that to Jon, it is his favorite place to hang out. It is bright orange and you can spot it immediately as you approach the yard. Jon has an old rocking chair in the shed and spends time there rocking and contemplating life. This is also the place where he stores an assortment of interesting things he treasures. Things like rubber snakes, pieces of broken drywall, a dryer hose and other odds and ends.
Truly his paradise!