Rambling about Ryder: Over half way done!!

Thursday, January 19, 2012

Over half way done!!

Day 18 at Ability camp and we have now finally passed the half way point! I have been hesitant in writing a post because I am beyond homesick and I don't want to come across that we aren't grateful for this experience. Ryder is making good progress and I know this is worth every second. The days are hard and I am the only one here who doesn't get to have their husband here with them at some point. I am finding myself getting really mad at the whole situation and what we have lost then at other times I look around and am just so thankful for what we have. A lot of emotions, a lot of energy and for Ryder a LOT of hard work!! We'll be fine and we will both come out of this stronger for sure but I will be very happy to finally go home.

Ryder has been having some really hard days in class during the beginning of the week but it seems to get better towards the end. I am finding his muscles in his legs and especially his arms are extremely tight right now. I am pretty sure we are having a growth spurt working against us. It's tough and he screams through all of his stretches and anytime he has to have his arms straight (which is a lot). It breaks my heart to hear him scream out in pain and I wish he could understand that I am only trying to help. After class however Ryder has a blast with all the other kids. I know he is going to miss this place when were home. He has a friend every where he looks :)

Oh and I must share the great news! Ryder has peed on the potty TWICE!! :) haha

I have been really bad for taking pictures but this is what we are working on right now...

Standing with Quad Canes!!! He can do this for about twenty seconds or so and he's getting better everyday and I am so proud of him!!

And because I know my mother will not be satisfied with a single shot of his backside... Here's a cheesy smile :)

1 comment:

AnonymousJanuary 19, 2012 at 7:48 PM
I love the smile, but "Cheesies?" You are beyond wonderful and again, I am so proud of you xoxoxo
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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!