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!

Thursday's Trash

Any words needed? Had this happened yesterday I would just have labelled this post wordless Wednesday. Jon whipped this plant down the stairs in a 'moody moment'. Apologies have been offered and accepted.
We move on.

Jon's Game

Jon loves a game of pool! It doesn't matter that the rules are his own. His rules are simple and easy to learn.
First you drop the ball in the pocket, then look to make sure it dropped, then place your ear close to the pocket and listen to the ball roll down the groove or whatcha may call it. I'll need to ask Jon..he knows his game:)
Simplify life..it's that easy.

Jon Visits a Dairy Farm

In late summer Jon went for a visit to a local dairy farm who had open house and were featuring robotic milking. Before we headed into the barn we registered as guests and were offered chocolate milk.
Jon seemed impressed with the large barn and all those cows and we watched a cow being milked by a robot. But of course he liked the fans the best, a little wandering on the farmyard found us close to some large fans and Jon was quite insistent to get as close as he could.
The cows and calves were more interested in Jon than he was in them..they reached out to sniff him but he just ducked his head into his t-shirt. Jon watched while staff allowed a calf to suck his fingers. There was no way Jon was going to allow that calf anywhere near him:) Can't blame him..that is kind of slimey!
A wonderful outing for Jon.

Jon's Gravy

Have I mentioned how much j-boy loves his gravy? And when I say love, I mean truly. Madly. Deeply. He loves gravy. And it is a scientifically-proven fact that his gravy makes any food taste all the better. And on bad days, that gravy is like a little piece of heaven in his mouth. Hot and creamy and smelling all warm-y, soothing-y, and gravy-y. In his world, it’s the perfect topping. The perfect taste. Quite simply...the perfect gravy. And may God grant mercy upon the poor soul that might happen to stumble into the kitchen before him and unknowingly eat HIS gravy.

Now – if you’ll excuse him. I think he wants some more gravy. 

Marble Maze

Jon was happy and content to find that Dad had fixed his marble maze once again. Rolling the marbles can keep him occupied for long periods of time. But sometimes he doesn't do to well with anger management and then is sad to find his maze broken again. We are always on the lookout for marble mazes, this one was purchased in Amish country.
He wanted to wear this hat that says 'Christmas Cook'..kind of cute isn't it:) Now if he could learn to cook.

Angel Food Cake, Ice Cream and Gravy

What do these 3 things have in common? Nothing that I can think of except that they are some of the foods Jon enjoyed for supper yesterday:) No, he didn't have them all in the bowl at one time but He could! He likes the most interesting things combined!

Shortly after supper he had a 9 minute seizure. He rested for an hour or so, then was looking happier and more alert. We usually notice when a seizure is building up..there will be more head banging and in general more frustration with everything. The neurologist once described it to us as pressure building up in his brain.

Jon loves toys that sing..I bought a santa who sings when you press his hand. Jon was thrilled and made sure it came home with him. Last week staff took Jon to the Santa Claus parade which he enjoyed; I thought this Santa would remind him of that.

Jon's Mom

Peanut Butter

Jon arrived for his visit yesterday afternoon sporting a nice haircut..thanks staff:) He seemed quite proud of it and smiled when I complimented him. He was also wearing a great smelling cologne and I told him so! I got smiles and his special hugs.

Most of the evening he was in an up and down mood. It started with eating as most of his 'mood swings' center around that. It didn't help that I was trying to take pictures of him and the flash from the camera was annoying him. By now I should realize that it's not a good thing. Sorry Jon..

He brought me the peanut butter jar from the pantry and asked for it to be mixed in with his supper. Yep he likes it with most any food. Well..the down mood struck and peanut butter was whipped against the wall..blobs of peanut butter flew everywhere. He then ran to his room and we had to be quick to help calm him down as 'things started to fly'. His moods see-sawed all evening. Sometimes these moods are an indication of seizure activity and he did have some 'dropsies' (mini type seizures) as we call them.

I was one tired mama by the time he went home.

Is that peanut butter I'm smelling?? The scent lingers..

Roots

Hi!

I am J boy's niece Kaila, thought I'd write a bit about my fav uncle!

Have we ever told ya about J-boys mom and dad? Where this unique character obtained his uniqueness? Hmm?

{The courtin' days...circa 1970 somthin)

Let’s start at the beginning…way back when…

Dad (To me gramps) was born and raised in southern Manitoba … waaaaaay out in the country. Where the pine trees are tall, the menno accent thick, and the little river dances through the farm.

{dad with his lil swoop}

He was the oldest boy of 7 kids. Yep, that’s right…SEVEN kids…(God bless my great-granny’s pea-pickin’ heart)

Dad was the Farmyard king and mom (Granny) was (still is) famous for her homemade cinnamon rolls and good ole down-home cookin. See: http://mennonitegirlscancook.blogspot.com/

At every meal, she serves enough plates to feed the family, even back then. But back then – There was no air conditioning, and no video games…just wide open spaces, and ponds and creeks and cows and everything else a little boy needs to let his imagination run free.

It’s the place Jon loved to be more than anywhere…it’s where he learnt to flutter leaves. Where he sat and smelt the Hog barns and where he plumped his bum in the sand and played for hours.

Where he learned how to say HELLO…

Watch balloons drift off into the sky, and appreciate all of nature. 

He’s about family. Love. Good times. Being free. Loving life.

Mom (grandma) grew up the oldest girl, of five children. They were raised by a strong dad and a caring mom.

Food stamps, bargain shopping and thrift stores were a way of life and she developed a serious passion (borderline obsession) for the thrill of the hunt, bargain stores and recycling old into new. She would spend her winters in hockey arenas…and hang-out with a greaser about her age named John…..life was sweet and good. 

 John realized he only had eyes for his Menno sweetheart. He packed up his trucker hats and made like a cow patty…headin to her home like a renegade outlaw on the run, swept her off her feet, and the rest is history...

So they wed, became business partners, raised 2 daughters and 1 son - Jboy (whom, I would like to add, have never given mom a stress-filled, sleepless, night…ever)…and now find themselves on a series of crazy adventures as their stories continue….

So, off into the sunset they ride with their 2 daughters, 1 son,  4 grand kids, a son-in-law, a dog named Lato, a kitten named Ben, a truckload of junk, and no hopes for old-folks homes anytime soon….and we think, they couldn’t be happier.

Mom's First Post

This is my first post on Jonathan's blog. No photos yet but I will be sharing some in the near future.
Yesterday Jon was home for his weekly visit. We ordered in Chinese food for supper from the restaurant our grandson works at and he delivered the food. When he appeared at our door with the order Jon just stared at him intently, I think he just couldn't figure out why his nephew would be delivering food! He was quite happy though and finished two bowls just like that..with the addition of peanut butter of course. Thought he would be full after this but oh no he had noticed banana muffins cooling on the counter earlier and so had two of them with ice cream for dessert.
His evening went quite well except for one incident when he tore down some Christmas decorations.
Looking forward to posting more of Jon's life.

Jon's Mom

Jonathan and food

Hey everyone, I really need to make more of an effort to write some stuff here for my bro. Ok so after admitting my short falling here is a post ;)
 I went to visit him on Oct.16. The weather was wonderful and we spent some time outdoors in the Sandbox digging some holes and then in the bush fluttering leaves. Jonathan really enjoys his shed and spending time there. He loves to break drywall and push items into holes. It is so great Jonathan is able to live in the country where he enjoys it best.

After some time outdoors it was time to go in for a snack. Jonathan choice was ice cream and some fresh made cookies Leeto just took from the oven. Jonathan loves ice cream and usually with something added to it. A true "Blizzard" fan. 

Standing in the Door

Jonathan likes to stand with the door open looking in or out of the house. This time of year that's not such a good idea. All the flys are looking for a place to stay warm for the winter.
He loves eating anything with gravy so today when mom made perogies he was happy!
Today he wanted to bring along an old dehumdifer that still runs when you plug it in.
Dragging mom and dad's junk back to his house. :) one way to get rid of stuff i guess.

Mom is away

Mom is away this week, so Jonathan is informed Mom is away at a meeting.

They do this because if you tell Jonathan that she is away on a holiday he wants to go away too. Jonatan is very persistant and will bring his going away bag to you over and over so you understand that he wants to go to a hotel. He loves hotel's with swimming pools and can spend hours in the water. He loves the experience of living in a hotel room for a few days. Sleeping in a different bed, using a different bathroom, etc.

I dropped by to see Jonathan and Dad on Thursday for a visit. Jonathan was very content and happy. He had just finished supper and his white shirt had some tomatoe soup stains on it. :) But he didnt care, his belly was full and he was visiting mom and dad's house.

He was curious when I walked in, I think he may have wondered if mom was coming home. Then he just smiled at me and walked off to his room. He was having a good day.