Rambling about Ryder: Day 3

Wednesday, January 4, 2012

Day 3

Day 3 at Ability Camp and we are all physically and mentally exhausted. Day one was really rough. The kids all screamed and I don't think there was a single parent in the room who didn't shed a tear or two. It seems everyday gets a bit easier for Ryder and most of the other kids in the class. There are eight kids in the class and the families are amazing. It's a nice feeling to know your surrounded by people who just "get it".They have come from as far as Trinidad and Uganda! There is another mom from the states, me from New Brunswick then the rest I think are from here in Ontario. Ryder has made fast friends with a little boy named Dax. The two of them are the most mobile of the bunch and definitely the trouble makers of the group. Ryder will go up and down the halls calling for him. :) Things are done way differently here, they don't like any of our walkers we brought from home and have all the kids using basic walkers but backwards (bars in the front). Ryder was very confused at this and kept saying "turn around? turn? " lol... They also don't believe in using afo's or using high chairs while eating. All the kids eat at wooden plank tables with chairs and little wooden boxes for their feet to sit on. For the one's with very little trunk control they get a long bar thats bolted onto the table to hold on to. Everyone was given little orthopedic shoes to wear during our stay, not as fashionable as his Jordans but they do the job :) We also work on potty training and I swear Ryder is going to be traumatized from this experience and never use the toilet until he's 40! The kids also dont get any breaks for naps. The progam starts at 8:30 snack around 11:00 and finishes at luch for 1:30 then HBOT at 2:00 for those who are doing it. I am really trying to keep an open mind but somethings just don't feel right. Like anything we have done, I will take what I believe is right for Ryder and leave the rest behind. The HBOT has gone well, it's done at the end of the class so the kids are usually crazy tired by that point. I was a tad bit nervous the first time but now it just seems routine. Ryder slept the first two times but was wide awak for todays. After we get out he has crazy energy, probably from all the oxygen. We have been heading back to the classroom to do our own thing and Ryder has a blast.

Well I need to appologize for any spelling mistakes as it's been a long day and I cant seem to get spell check to work! Good night all :)

We are not allowed to take pictures or videos in class but here are a few I took turing our play time after HBOT. :)

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Ryder's Story

Ryder and Wyatt are our identical twin boys that were born 12 weeks premature. They suffered from a "rare" disease called Twin to twin transfusion syndrome (TTTS). TTTS affects 10-15% of identical multiples sharing a single placenta. Basically what happens is there are crossed vessels in the placenta forcing one baby to have way too much blood, nutrients & oxygen and the other not enough. Left untreated this heartbreaking disease has a astonishing mortality rate of 90%. Unfortunately I was not diagnosed until I had already gone into labor at 24 weeks gestation so not much could be done. Thankfully the doctors were able to stop my labor and we all made it to 28 weeks. The boys entered their nicu fight together but sadly on their 24 day of life we had to say our goodbyes to sweet Wyatt. Our hearts broke in a million pieces but somehow we picked up a few and continued our fight for Ryder. Ryder stayed in the nicu for 67 long days and was finally able to come home 2 weeks before their anticipated due date. It was a bittersweet day for many. We were told by every doctor that Ryder was just a "normal" baby and not to worry. I never felt right about this and knew there was something more to come. When he was 11 months old he was diagnosed with Spastic Diplegia Cerebral Palsy. Our hearts broke once again and we were left to wonder what his future would hold. When we started this blog Ryder was 19 months old and still could not sit, crawl or walk unassisted. Since then he has made tremendous leaps but he still has a long way to go. He see's his physio therapist and occupational therapist twice a month and speech pathologist once a month. This is what our government will offer and we don't feel it's enough. He has so much determination and we know given the proper tools and therapy nothing will stop him. With your help we sent Ryder to Ability camp in January 2012 and there are many other treatments and alternative therapies we want to give him the opportunity to try. Thank you for supporting Ryder and following his journey!