Update Oct. 2013

Yesterday : World CP Day Oct.2nd 2013

I love someone with CP do you?!

Today is world CP Day and my wish for Ryder is that this world HE lives in becomes more accepting of him and those who live with this life long condition. I wish that HIS world will become more accessible and that he wont ever let anything stand in his way. That he meets true loving friends who see past the equipment and love him for the smart, funny and amazing kid that he is!

Love you Ryder, you amaze me everyday with your strength and fight. We are so extremely lucky to have you here with us!

As yesterday was World CP Day I thought it would be a good time to give a little update on Ryder....

Ryder is now on his second year at Stepping Stones! Crazy how fast time has flown by. Just this week he was switched to group therapy full time. They feel Ryder no longer requires the one on one therapy and most of his goals are social related anyhow, so what better way to achieve them?! He loves group with his friends so this was an awesome surprise and treat for him. I no longer have doubts that Ryder is on the spectrum. In larger social settings it is becoming obvious that he struggles. We have always looked at this diagnosis as a blessing in disguise and now more than ever I am feeling very grateful that he got a diagnosis so young. A lot of high functioning kids don't get a diagnosis so early. Diagnosis = Therapy so we are feeling very fortunate that he is getting the help he needs. We have been blessed to have the same awesome worker the entire time who loves Ryder as much as he loves her. They have a great time together! 

We are still doing physio every week and we feel like Ryder is finally back to where he was before his last growth spurt. He is gaining his confidence again with his canes and can use his walker for longer duration of time. We have tried out two wheelchairs in the past couple months and have picked his out and are just waiting for the paperwork and funding to go through. We had it for a few weeks and it was SO awesome for him to have that independence while we had the peace of mind knowing he was completely SAFE!

Here it is:

Other than that we are just plugging along waiting for his Surgery date. We were originally told June or July, after those months passed we were told it "Should" happen by the end of the year and today was told they have evaluated a lot of kids recently so they cant be for sure how accurate the last guess will be. So as I am obviously not holding my breath but I am definitely crossing my fingers and sending as many positive thoughts out into this universe that he will get it soon! I feel like this surgery will mark a new chapter in all of our lives. 

"Why do I have Cerebral Palsy?...."

"Why do I have Cerebral Palsy?" A legitimate question coming from an intelligent little boy.

Sure it saddens me that my three year old can not only pronounce Cerebral Palsy but knows he has it and that he is different but it also makes me proud that he is aware, knows he's unique and that he wont let it get in his way.

This came about a couple weeks ago as we were on our way home from school. Later in the day it was "Why is everyone always grabbing me?" "I just want to walk with my walker by myself and not be picked up!". Very valid questions and requests and as Ryder's mommy I am so very grateful that he can communicate these feelings with us so we can properly meet his needs. He is so right. Why is everyone always grabbing him? We just pick him up, pass him off, move him around never ounce asking him if that's OK?! Is he a baby? No, definitely not. He is a three year old who like all three year old's wants his independence; to do things by himself weather that be with a piece of equipment or not. Tyler and I talked about it and came up with a plan and so far so good.

First we started asking his permission before helping him. This seems to be working very well. Sometimes we forget (and he lets us know) and we explain how Mommy and Daddy are learning just like him. Next we decided to request a proper handicap parking spot near the ramp at his school. Before it was a regular parking spot and the ramp was almost always blocked. As a result we usually left his walker at school and carried him back and forth. Within a week we had our handicap spot and Ryder has been walking in and out of school with the biggest smile on his face since. It has made such a difference in the morning drop offs too. Ryder would always tell his teacher not to hold him and act a bit "crusty" in the mornings. Now he zips through those doors and is ready to go! We are also starting to let him walk in his walker in more places. He gets tiered fairly quickly but if we just need to go into one store and grab a few things we will let him at least try. It takes us 20x's longer to get what we need and he does attract a load of unnecessary attention but the look on his face is SO worth it. Finally, we decided it's time to put in the request for Ryder to get fitted for a wheelchair. He's getting to the age where he really doesn't want to be in a "baby" stroller and he tiers too fast just to use his walker. We were trying to wait as long as possible for the wheelchair but now the time feels right. We have talked to him about it and he thinks a chair is an awesome idea. He will gain so much more independence and really that's exactly what hes asking for.

Feeling good about Ryder. Where he's at. Who he is. And how far he has come!

Where did those last 7 months go?! Ryder Recap :)

You know when you leave something for so long, time passes by, then you have why too much to say and have no clue where to start?... No?... Well it happens to me all the time and that's exactly where I am with Ryder's blog. Gotta start somewhere so here we go.

A Quick recap of the last 7 MONTHS... (wow, 7? yeah. crazy.)

Ryder loves Stepping Stones (his ABA therapy "school" for autism) I haven't noticed much change in him but I am still on the fence if I truly agree with the diagnosis... Regardless he loves it, they work on goals and skills linked to his CP and "labels" really don't scare me anymore. He started "group" last week and already they are bumping him up to the next stage because his social skills were far superior to those of his peers in that group. I am excited to see how he does in the next group with the older kids who have similar goals. He is such a sponge right now and is taking EVERYTHING in, it's so fun to watch him learn and grow.

We received some exciting (and scary) news on our last visit to Montreal. Ryder has been accepted as a good candidate for the Selective Dorsal Rhizotomy Surgery (SDR)! (Click the link for info) We did our research and feel that this is the best option for Ryder and although scary we cant pass up this opportunity. We are waiting on the surgery date but it will be happening in either June or July of this year!! We will be packing up and living in Montreal for 6-8 weeks, as the rehab program is very extensive. Ryder and I will be staying at the Shriners Hospital and Tyler and Jagger will be staying at the Ronald McDonald house, which thankfully is less than twenty minutes away from the hospital. The link above is from St.Louis Childrens Hospital but it has all the information about the surgery with diagrams and such. I found it very informative. When we get to come home the rehab continues and he will be receiving 3 days a week physiotherapy along with daily home therapy. It will be a lot, we know this but we are very excited for the possible outcomes.

Recently Ryder went through a growth spurt and his legs got extremely tight. That combined with the winter temperatures and snow it was almost impossible for Ryder to use his walker (and we can just forget about those canes.) Our space at home is very limited, so during these months Ryder rarely gets to "walk". The snow has finally melted away and we have been able to get back out to the parks and stretch those legs. We bumped up his physio to once a week because really there is nothing else we can do until surgery and I need to know in my heart we are doing EVERYTHING we can. I have noticed some small improvements but it really is heartbreaking to see what a growth spurt can do to a little one with CP. They work so hard to gain these skills, then *poof *gone just like that. I know he can get it back it will just take time. He had been making so much progress with his canes. He could walk from one end of our place to another and even started using them outside. Now he can only manage a few steps. Spacticity sucks.

For those of you that read about Ryder but don't know our family personally, you may be wondering who Jagger is. In November we welcomed our third baby boy to our little family, Jagger Vaughn! Ryder is such an amazing big brother and I know Wyatt is watching over him and did his part to make sure he came safely into this world. Ryder loves to give Jagger horsey back rides and cant wait until he is able to move around and "race".

Well I think that covers the main stuff and hopefully now I can stay on top of it!

I may put together and post some collages of photo's from the last 7 months too, I feel like I missed a lot...