Rambling about Ryder: 2 more sleeps!!

Wednesday, February 1, 2012

2 more sleeps!!

Day 32 at Ability Camp, which means only 2 more sleeps!!! I am SO excited to get home and have our little family together (well as together as it can be). Ryder has been fairing out pretty good. He has his bad days but also switches it up with some good. I feel like he got the most out of the first three weeks and by the fourth he was done. (or maybe that was just me....) With his age and his stubbornness it's so hard to keep him focused on tasks he has no interest in. I haven't been able to get any video clips of him because unless he's in the mood he just won't do it. Walking in the parallel bars and through the ladder are now categorized in the hard work, not so fun section...He has come a long way though and when he want's to do something boy does he do it! I can't wait for Tyler to see him!! Yesterday they did his progress video and we had to bribe him with potato chips just to do the simple drills he has been working on for the past five weeks. It will be interesting to see what they ended up with. He now has the nick name Mr.Chippy from the instructors!

Last week Ryder was my little potty champ. He went everyday in class and even on the weekend too :) They have little charts made up and they get stickers for each part of the day they complete, they also get extra stickers for using the potty. Ryder loves checking out every one's stickers so I think I'm gonna make a potty chart for home too. Good incentive and it doesn't involve chips :) I'm so proud of him! Also I need to reclaim my comment about Ryder being traumatized and not using the potty until he's 40!!! lol

The top stickers are potty stickers :)

This week as everything is coming to an end, our schedule has been a bit different. We had no class yesterday because they were making our final progress videos. They also put on interviews to give us all opportunities to have one on one time to talk with the conductors. We had a big potluck dinner which was a really nice break from all the hard work. The kids had an awesome time all playing together outside of class and I think the parents did too :) Tomorrow we have our graduation and Friday is only a half day then we hit the road!!! As happy as I am to head home, I truly am going to miss these people!!

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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!