Tuesday, April 17, 2012

A request for help...

Back in January of this year, we received a heartfelt letter from a young mom detailing the struggles/challenges of raising a son with Cerebral Palsy.  Ryan (now 3) has attended some sessions at Ability Camp with encouraging results...but the costs are often prohibitive without outside support of some kind.  While this particular need doesn't fall under PI's dream criteria or objectives, we were moved by the story of this family in our own "backyard" and wanted to share it with you...our nation of everyday philanthropists. 
Hi my name is Rachelle Vlaad 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 at 930am on January 4th 2009. We proceeded to the local Hospital where they did an internal check and verified I was 2cm dilated and than I was told to drive to the Sudbury General Hospital. On arrival (1030am) I was told to head to the labour and delivery floor while my husband checked us in and answered any questions at admitting. When I reach the labour and delivery they changed me into a gown and brought me to the room which I was going to deliver in. I requested an epidural and was told it was going to be about 50mins than they hooked me up to the heart monitoring machine. I remember being in so much pain and that hour seemed to take forever but once the anesthetist put in the epidural I was able to relax. We couldn’t believe this was all happening. They asked me to lie on my left side and would leave the room to return to reposition the monitoring device saying that they were having a hard time keeping track of the heart beat. I remember wondering why they were having a hard time since I wasn’t feel any moments and told them so. After a long 14hrs of lying on my left side playing cribbage a nurse came in to check me and I was finally 10cm. I couldn’t feel a thing therefore the nurses had to tell me when to push. My legs were dead-weight and I couldn’t lift the right one at all. I couldn’t feel any contractions but when the nurses, resident and the attending told me to push I would and within about 45mins I delivered Ryan weighing 5 pds 9 oz. They handed him to me to kiss quickly but because he had laboured breathing he was 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 the bruising was on his head 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 the black ring was a big ring started to form around his head and protrude out.
We had regular visits with our family physician at the time and every time I would see her I questioned his poor head as well as his hands because he wasn’t able to open them. She referred us to sick kids and we started to see a dermatologist for his scar. We 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 like it 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 that 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 Ryan'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.
For the next 9 months every time I brought him to our family physician I questioned her about Ryan being unable to open his hands. She told me the same thing that she did at every visit “he was a preemie and a boy therefore he would need time catching up”. I also told her that he was very floppy he wasn't able to sit unsupported and I got the same reply. At our 9 month visit Ryan was still tightly fisted and wasn't sitting up at all. I brought this up right away letting her know that I believed something was wrong and because I was pretty dead set that there was something not right so she said she'd refer us to an Occupational Therapist in Oshawa. That November Ryan turned 11months we went to the OT appointment, the Occupational therapist looked him over and than went to get the pediatrician who looked at him as well. He did a few simple things with Ryan and turned to Cary and me and casually said well Ryan has Cerebral Palsy. I'll never forget that moment......I was not prepared for that diagnoses especially without warning. I broke down and cried and cried. That day we were referred to the Five Counties Children Centre in Lindsay On. We went home and I called our family physician to tell her. Slightly after that I believe that I had fallen into depression. I cried all the time especially when I looked at Ryan, all I could see was a helpless child strapped into a wheelchair with a possible feeding tube. I stopped going out because I didn’t want to face all the looks and questions when people realized that my child at a year old didn’t do anything that their 6 month old did. Once the shock wore off a bit and a big thanks to a special friend of mine I begun to see Ryan in a different light, instead of seeing what he couldn’t do I started to see what he could and put all my effort into teaching him everything I could. I went from a full-time job to part-time job because at the beginning we had so many appointments a week I couldn’t keep to a full-time schedule.
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 (shown by a MRI) resulted in 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. Since we were told of his condition we have been actively involved with Five Counties Children's Centre where Ryan sees a Physiotherapist, an Occupational Therapist, and a Speech Therapist regularly as well as a Pediatrician who monitors his improvement. Within months of them working with Ryan he was able to open and close his hands and to sit independently by about 16 months. Shortly after that he started to learn to army crawl using his forearms to pull his self around and by about 20 months he was able to pull himself to his knees. He started to learn to colour and wow does he ever enjoy colouring. He’ll sit there for hours in a high chair. 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) 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, 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 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, where Cary and I spent most of our lives, came together and starting to collect donations. January 2011 I brought Ryan to a specialty camp that works with children that have Cerebral Palsy as well as training the parents. This camp is designed to do extensive therapy while undergoing oxygen therapy treatments.  We stay at this camp for 5 weeks and work with Ryan and preformed 40 hrs of oxygen treatments.
After three weeks of being at the camp Ryan age two was able to go from his belly to sitting pretty quick and easily, he had also learned to sit at a table with a grab bar and wouldn’t fall off.  I could 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, he'd lean and fall off, since he wouldn't hold on. He had started to feed himself with a spoon but still needed help with scooping and also needed to be reminded to bring the food to his mouth or he'd just sit and play with it. He started to show interest in food and would get excited when I would enter the room with his bowl and spoon......sometimes he gets mad if I'd take too long. Meal time is now a pleasure not a chore.
While at the camp we started to teach Ryan to use a walker, push up on all fours, sit in his own chair, tall-kneel and some speech.  When we had returned home we continued these exercises and saw some really great improvements such as Ryan started to hop around on all fours making him a lot more mobile, as well as he continued to improved on his eating skills. He finally started to try to pick up little pieces of food using the pincher grasp method around 26 months of age or so.
We were so pleased with his progress that we reached out to our small friends, family and community for help again and because of their overwhelming support and generous donations we were able to bring Ryan to camp for a second session. His second 5 week session was in November 2011 and Ryan has just turned 3 today. He now walks with a kaye walker independently, cruises around furniture and sometimes lets go to take a few steps, he now drinks cold milk and to some people this is such a small thing but to finally not have to warm up his milk is a huge deal for us. This means that the sensitivity in his mouth has subsided some (credit to the oxygen therapy) His understanding improves daily though he really lacks in speech you can still communicate a lot to him. As a mother it’s hard not being able to hear your son call for you or to run to you for a hug. My life has changed completely with Ryan’s diagnoses, something someone can’t prepare for but now has to live with. The many appointments can be overwhelming as well as the cost of everything that comes with having a special needs child. Ryan is still in diapers at the age of 3 and needs enhanced staff at the daycare facility he attends. He is unable to go up and down stairs therefore needs assistance to do so.
I can’t even explain how wonderful, loving, and so happy even with all that has unfairly been dealt to him. I’m super proud of him and all he has accomplished already he is truly amazing. Ryan has great potential to learn to live a completely independent life if we continue with these aggressive therapies. Our goal is to have him walking before he enters school. Though we work with him daily it’s nothing compared to what he learns in this extensive therapy program. We hope to attend another session this coming April but unfortunately this type of therapy is extremely expensive costly and we are running out of options. Please consider Ryan’s Dream of attending another session to over come more challenges that come hand in hand with Cerebral Palsy.
If you would like to know more about this camp we attend visit abilitycamp.com
Thank you for considering us!
Rachelle Vlaad

Rachelle has a blog (with photos) detailing Ryan's Journey, you can find it HERE

You can contact Rachelle at this email: r_vlaad@hotmail.com

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