Fourth week at Ability Camp

We are now entering our fourth week and things are getting much easier now. The children seem to have accepted what is expected of them and they don't put up as much of a fight anymore. Some days they even seem to enjoy it.

Though I'm getting excited to be able to go back home to my wonderful husband and our 5 1/2 month old son Cameron. 

Cameron with his party hat celebrating Ryan's 2nd birthday before he goes off to camp.

 I'm also sad to leave. I've made some great frineds during this time that I hope to stay in touch with afterwards. Also I'm going to miss the other children I love them all as if they were my own. They are all great kids even though a certain one likes to band his head on the wall and keep me up all night ;) It'll feel different to wake up and not say good morning to them as we enter the kitchen or not hearing their laughter up and down the halls as the chase eachother. We are all hoping to stay in touch and to visit in the summer and see each one's progress. 

Today we decided to go on an outing so he bundled up all the kids and took a walk to the lake. We borrowed the camps sleds but one of them had a string that wasn't long enough so it keep throwing Hudson off. It took us probably about 30-45mins one way lol we had such a hard time walking through the snow but it was fun. The children just loved it. All of us women were complaining about our leg and back pain and here's Shaun just trotting a long pulling two kids not even breaking a sweat........

Ryan, Rhett, Brody and Hudson in the sleighs waiting to go.

My little cutie waving...........super excited about being in his sled.

Our first, second and third week at Ability Camp

I'll start with what Ryan was able to do or in other words not able to do. The week before we left for camp Ryan was just learning to sit up from his belly, his balance sitting on a chair was terrible. He would fall off if you turned your head for a minute. He hated to and I mean hated to eat. Feeding time was no matter what was on the menu seemed like a chore. I would have to distract Ryan and stick a spoon full on food into his mouth while he wasn't looking just to get him to taste it. Once you were successful of getting a taste in would he than start to eat and sometimes he would just shake his head no anyway. For the passed month or so he was pulling himself up to his knees using something heavy such as a toy box to hold on to as he did so. To pull himself up to his knees he had to come at the toy box head on cause if u was off kilter a tiny bit he would fall over. Ryan didn't care for standing, every time we would work on standing he would swing his legs out from under him so he could sit than could down and army crawl around.

We arrived here at the Ability Camp January 2nd 2011. Cary came along with me to help Ryan and I get settled. We pulled up to the camp and there wasn't a car in sight. I was thinking we better not be the only people here for this. We were asked to arrive between 2-5pm and it's now 4pm and we're the only ones. I didn't know what to think at first so we went in and meet Katelyn, who is the daughter of the owner of the camp who also has Cerebral Palsy and had been the inspiration to start a camp here in Ontario (only one in Canada like it) One thing they neglected to mention on the phone is that there is absolutely no cell phone service.....I was like u have to be kidding me. So here I am out in the middle of nowhere, in a trailer, with no cell phone service......hmm seemed like a scene from a bad horror film. Well here we go. There was suppose to be a full class which consists of five children but one family didn't show therefore there was only four. We were given another tour and given a list of rules to follow some which included no showers passed 8pm, lights out by 8pm also no noise in the hall after 9pm.......the first week we had broken each one. Some nights we have all these little guys up and they cruise up and down the hall chasing each other. There's one little guy Hudson 23months who scouts on his bum and is quicker than I can walk (no joke), Ryan 2 yrs who army crawls but loves to chase Hudson, Rhett 2 1/2 yrs who is starting to pull himself with his arms such a loveable little guy, and Brody almost 4 who also is starting to learn to pull himself with his arms who can give a stink eye like it's no ones business.  I couldn't of asked for a better group of people to get stuck in a 50 foot motor home with.........well it's not really a motor home but pretty darn close to it. The building is pretty old and was used as a nursing home previous. They have 15 rooms which are for the parents to stay in if needed for the time they are at the camp, with three washrooms which includes tubs, a washroom that has only a shower and another two washrooms that have only toilets. There's a common sitting area and kitchen which has two stoves, a big industrial fridge were we r given one shelf and a cupboard with three shelves for our dry goods. One of the rules asked us was to only use the shelf and cupboard assigned to us.....well by the first week we had taken up the entire fridge (all families) and extra shelves that were assigned to other rooms but since we were they only families there we started with one extra shelf here another here till some of us had taken over two cupboards as well. The first week went by very very slow and the kids didn't like the new exercises one bit that first day I think I lost half my hearing......cause I swear each child took there time wailing over being forced to do exercises they did not want to do. Our instructors Krisztina and Brenda swore it would get better with time but I wasn't sure if I believed her. As the week went on it did become easier and easier but still they cried trough most of it. One thing that they do enforce here is that the children participate in activity if they like it or not and trust me they fought quite a bit that first week. Within the first week we had gotten to know one another well and starting to have meals together and having outings. To make it fun we alternate who cooks dinner and all have dinner together. There's two other mothers and one father therefore there's a lot of estrogen in the house lol so Shaun has become one of the girls telling stories, watching the the next Great baker Mondays and Biggest Loser Tuesday's we even got him to enter a fabric store where he pick out his own material to make arm and leg splints for the kids for their exercises :) Overall it's been a great experience here I've meet some fantastic people and their children are wonderful I'm truly going to miss them all when this is all over. We had an older couple, Ken and Miki join us the first week as well. Ken had surgery and was having difficulty get his left hand to function therefore came for some oxygen therapy treatments. A nice couple that were more like a set of grandparents to all the kids. Miki, which we called Oma made a mean batch of peanut butter cookies and at the end of the week made us 10 dozen peanut butter cookies at the end of the first week cause they were heading home.

We celebrated Ryan's 2nd birthday with a cake that Ry's instructor picked up for him and also we made a big spaghetti and meatball dinner with garlic bread. It was delicious : ) Ryan even tried to eat using his own spoon and bowl and did very well. He's starting to bring the spoon to his mouth but still kinda licks it instead of clearing the spoon. Starting from bottom left and going clockwise is Rhett, Rhonda, Myself, Ryan, Patti, Hudson, Brody and Shaun.

In front of Ryan attached to the table is a grab bar. This allows Ryan to hold on making it easier to balance himself also it allows him to concentrate on eating instead of his balance.

After three weeks of being at the camp Ryan is able to go from his belly to sitting pretty quick and easily, he also sits at a table with a grab bar and doesn't fall off.  I can leave the room to get his lunch and come back to him still sitting just the way he was when I left him. Before I couldn't even turn my head cause he'd learn and fall off because he wouldn't hold on. He has started to feed himself with a spoon he still needs help with scooping and also needs to be reminded to bring the food to his mouth or he'll just sit and play with it. Now he shows interest in food and gets excited when I enter the room with his bowl and spoon......sometimes he gets mad if I'm taking to long lol what a change. Meal time is now a pleasure not a chore. Here's a picture of Ryan eating his birthday dinner at camp.......such a big boy with his suction bowl and spork. great job Ry!! Ryan has started to say EE for cheesy and ookie for cookie. Last night (Monday of fourth week) he even held his own bottle while leaning back against me watching cartoons.....which would make life a lot easier if he continues to do so.

During the first week they had started the children on potty training. Ryan didn't do that bad but it was a super fight to get him to sit on these tiny ikea potty's. So the first weekend Cary came down for a visit I asked him to bring Ryan's potty from home cause it had a bigger seat and would be a little more comfortable. Ryan took to it well and started to pee and poo in it frequently. The second and third week he was getting pretty regular he had no problem stinking up the entire classroom.

The daily schedule starts of with stretching exercises, were there is always someone unhappy before it's over, potty time, snack time, standing exercises, potty time, individual programs, lunch, potty time than oxygen therapy. The oxygen therapy is an hour long. We all go into a chamber that literally looks like a big propane tank on it's side. They all wear hoods that have two hoses attached.  In the large hyperbaric chamber they slowly increase the surrounding pressure, the sensation is similar to what you  would experience in an aircraft while it is descending. You may feel a slight pressure building in your ears which is generally easily cleared by swallowing, yawning etc. There should be no pain or discomfort! Children or adults can take a drink into the chamber to help encourage them to swallow and this is usually enough to clear their ears. Once the final pressure is reached a clear vinyl hood (Plastic Bubble) is placed over their head and they are given 100% Oxygen to breathe. By increasing the ambient pressure Oxygen molecules are squeezed closer together thus allowing higher concentrations to be transferred into the blood stream and carried throughout the body, to the central nervous system, muscles, bones etc. Even the plasma, the fluid that carries the red blood cells can also absorb and carry Oxygen into very fine vessels or partially blocked vessels that the large red blood cells may not be able to pass. For the first week I had a terrible time clearing my ears due to a cold. Now it's breeze but I chew lots of wine gums.

From left to right Hudson, Ryan, Rhett and Brody patiently waiting to start there oxygen therapy.

Ryan normally sleeps through his oxygen therapy but this day he wasn't too happy to have to put on the hood.

All kids were given leg and arm splints that would be worn to do certain activities with. Ryan for example wears arm splits while sitting and standing exercises to help him hold on better. He uses one leg splint while standing to kick a ball than we switch the splint over to use the other leg. This way he learns to use on leg at a time. Ryan also has started to use a walker while wearing the arm splints. He has a tendency to push his bum back therefore making it easy to swing his legs forward without bend at the knee. (Soldier style) We are having Ryan hold onto the walker and we put pressure on his rear making it hard for him to push back so that he has to step by bending his knee. Ryan has his good and bad days with this activity but is doing better than when he first started. Today (Tuesday of the fourth week) he took multiple steps with little resistance but still needs assistance and guidance with the walker. When we finish here we will definitely look for a childrens walker to continue this at home cause practice makes perfect.

Another thing he is able to do is push up onto all fours and while in this position he can lift either arm to reach for a toy etc..Sometimes he even tries to hop like a frog. The beginning stages of crawling. Last week we all took a field trip to town to go to the local fabric store in Picton. Ryan started to twist and turn in my arms wanting down so I sat him on the floor. When I turned to check to make sure he hadn't gotten into anything he wasn't suppose to he was on all fours just hopping a long it was very cute. We were all like go Ryan go and he had a big grin on his face.

 Everyday is a challenge and its amazing all the little things children do that people take for granted. Having Ryan has taught me that no matter how small everything he learns is precious and I charise it. Every time he learns something new or meets a milestone it's that much more exciting because he has to work 100 times harder than the average child, but he is strong and determine and he makes me proud every single day. I couldn't of asked for a more perfect child.

Hi my name is Rachelle and my son Ryan was diagnosed with Cerebral  Palsy at 11 months of age. Throughout my pregnancy I had no complications and at 35 weeks my water broke and I delivered Ryan weighing 5 pds 9 oz he had laboured breathing therefore had to stay in the NICU for a couple days. Even though Ryan was a vaginal birth with no instruments used he had come out with a significant bruised head with a couple of abrasions.  I questioned the pediatrician about this while we were still in the hospital and they weren't concerned and told me not to put anything on the open wounds, just let it air dry. 

Ryan was discharged three days after delivery and we spent the rest of the week at my parents than headed home. His head started to heal and where you see the black spots of the picture above started to peal like as if it were a scab. His hair fell out and started to grow back in when he was a couple months old and where you can see the black ring in the picture above well it started to form a scar a big ring around his head formed and protruded out. We started to see a dermatologist and started to undergo test first we started with a biopsy that told us it was pretty much a keloid scar but they had never seen anything quite lik eit before. Also no one could give me an explanation how this had happened. In total we have seen probably over a dozen doctors and when we tell them there was no instruments or vacuum used during delivery they just look at us and tell us they have no idea. Where this keloid scar started to form hair wouldn't grow on it so we were given a steroid ointment to apply to the scar to help thin the tissue and promote hair growth. The ointment seemed to help a little eventually we were able to get Ry's hair to grow but only half his scar grew hair on it. So now only half the scar is visible but if you separate his hair u can see were the ring went completely around.

Ryan holding his teddy with his fists.

At  6 months of age he still wasn't able to open his hands. When we brought Ry in for his 6 month needles I questioned our family physician about this. She said that it was weird but because he was preemie and a boy he would need time catching up. I also told her that he was very floppy he wasn't able to sit well in a bumbo chair or saucer either and I got the same reply. We had another visit when Ryan was 9 months and by this time Ryan was still tightly fisted and wasn't not sitting up at all. I brought this up right away letting her know wthat I believed something was wrong and she was about to tell me that because he was 5 weeks premature it would take time for him to catch up to where he was suppose to be but because I was pretty dead set that there was something not right so she said she'd refer us to an OT in Oshawa. That November Ryan turn 11month sand we went to the OT appointment the Occupational therapist looked him over and than came in a pediatrician who looked at him as well. He did a few simple things with Ryan and turned to Cary and I and casually said well Ryan has Cerebral Palsy. I'll never forget that moment I think I might of been in shock......I was not prepared for that diagnoses especially without warning. I broke down and cried and cried...every time I looked at
Ryan I saw a child that would been in a wheelchair with a feeding tube. This was not the case though cause every child with CP has there own severity and they aren't really able to tell what and how it will affect them til later in life. That day we were referred to the Five Counties Children Centre in Lindsay On. At 1 yr of age he was still not able to sit on his own or even do a simple task such as opening his hands. Lack of oxygen to his brain resulted a decrease in fine and gross motor skills. Since CP effects muscle control Ryan also has difficulty eating because of the lack of muscle control in his jaw therefore, making it more difficult with chewing and swallowing. The sky is the limits and we work with Ryan everyday to help improve his way of life. Since we were told of his condition we have been actively involved with Five Counties Children's Centre where Ryan see's a Physiotherapist, an Occupational Therapist, and a Speach Therapist regularly as well as a Pediatrician who monitors his improvement. A special thanks to all his therapist cause within months of them working with Ryan he was able to open and close his hands and to sit independently by the age of 16 months.

Ryan with his hands much more relaxed and opened.

Shortly after that he started to learn to army crawl using his forearms to pull himself around and by about 20 months he was able to pull himself to his knees. We still had many issues with feeding. Ryan wouldn't attempt to bring food to his mouth or try any food that wasn't pureed. Though Ryan seemed to make great progress we couldn't help but want to give him so much  more. He is such a delightful and loving child that we wanted to give him every opportunity we could. We spoke with his therapist about trying to do two days a week but due to the high demand they couldn't give him more than one day a week (which is more than what some people get to start with) So I started to research on line to find something...........anything. I eventually came across a website about a camp in Ontario that does conductive education combined with oxygen therapy to help children with disabilities as well as adults that have disabilities or difficulties due to injuries or strokes etc. Cary (my husband), my mother and I drove out to see this camp which is located in Milford just on the outskirts of Picton Ontario.  After spending the day discussing Ryan's strengths and weaknesses  and what are expectations were, we headed home to talk it all over to see what our next step would be. We were given a list of many foundations to contact about funding so I started making phone call after phone to get hit with the hard realization that we didn't meet there requirements for funding and therefore couldn't receive money through them. I contacted all our local Lindsay service clubs but didn't get any reply’s and it seemed that the likely hood of Ryan attending this camp was not going to happen. Thankfully to the devotion of our family, friends and our small community (Espanola Ontario), where Cary and I spent most of our lives, came together and starting to collect donations. My mom, dad, and sister agreed to take care of our five month old son Cameron for five weeks making this all possible for me to attend this camp with Ryan. My mother in-law and father in-law went to great lengths to fundraise for us putting out jars to collect funds as well as collecting donations from people who wanted to help. Cary and I were rather touched by the incredible generosity of so many people. Thank you all so much for making this come true we'll never be able to tell you how much this means to us and what it'll do for our little Ryan. If it wasn't for all the generous donations having Ryan attend this camp wouldn't of been possible due to the costs of it. A special thanks goes out to the Espanola firehall/volunteer firefighters, Espanola firefighter choir, Greater Sudbury firefighters choir, Espanola's Lions club, Pricechopper, Espanola General Hospital and it's participating departments, Espanola General Hospital kitchen staff, Ernie Ross, Rod and Leslie Stewart, Dennis and Lynne Beilhartz, Jim Ramsay, Jeanno from Giant Tiger, Granpda Vlaad, Rock Taylor, Laurie Brault, Rae McNichol, Jen Dainty, Cynthia and Brian Suarez, and to everyone that allowed us to place a jar in there store or department (names to be posted at a later date), my friends and family, Cary's friends and family.  Also a special thank you to my brother in-law Bill Vlaad. Bill had a Christmas/40th birthday party were Bill requested if anyone wanted to purchase him a present was asked not to but instead a donation to be made to  Ryan's camp fund. So thank you Bill's friends and co-workers: Darcy Watson, Neil Mohammed, Paul Kang, Ian Schnoor, Andrew Grimes, Lawrence Moody, Heather Dunn, Michelle Donais, Stephane Gauthier, Shawn Zolberg, Sean Duckman. Thank you to anyone else who's name was not mentioned. I'll be up dating this frequently therefore some more names will be added at a later date.