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...

Ryder's First Day of School!

Today was the big day, Ryder started Stepping Stones. The morning was a little different being the one waking up Ryder instead of him being my alarm clock. I got a huge hug right away and the first thing to come out of his mouth was " I love you Momma cat..." Love my boy!  Drop off was successful, he was very excited to see all the other kids and hit it off with his Autism support worker right away :) How could he not when she had a big tub of toys with lots of cars in it. Each child has a worker and they have their own little cubical they work in. Then there is a big play area where the kids can all play together. We got Ryder settled in his little desk and chair watched him play for a couple minutes then said our good byes. No tears and he didn't seem to care one bit that we were leaving. Tyler and I stuck around in the waiting room for about half hour just to make sure he would be okay. Of course he was so off we went.

We left to pick him up a little early to beat the rush (and I was very anxious to see him.) His worker suggested we actually keep doing that from now on to avoid the chaos of everyone coming and going. We will do a early drop off and early pickups which actually works better with Tyler's work schedule. Ryder's worker said he had an AMAZING first day! He didn't cry at all!! Got a little sad a few times when he was asked to share with other kids but that's very typical for Ryder and I'm so glad he has the opportunity to work on it daily. She said he didn't ask for us at all! I guess there were enough distractions that he didn't miss us too much. He got to play with one of his best friends that also goes there and he was very polite and used his please and thank-yous when talking to the other kids. All in all a very successful day! YAY!!!! My baby is growing up and I couldn't be more proud of him. ♥

Way to go RYDER!!!

I have lots of updates as I haven't posted in a while but they can wait! I am so excited I cant stand myself! So extremely proud of our little man!!!

link to book here

I'll start off by saying the last couple weeks my main focus has been on balance and finding new fun games for Ryder to play that will work on this area. I get all my home exercises from a book my mom bought me when Ryder was first diagnosed with CP. It has always been an awesome resource but I don't think I have ever seen results like this, in such a short time! Everyday we have been playing these 3 little games to work on balance. Ryder loves them and actually asks to play each one all on his own. The first we play "Bad Guy" he sits on a foot stool and Tyler or I will pretend to be the bad guy and knock him over. He has to use his core strength to stop himself from falling down. He laughs the whole time. Another "Cars" he sits on the same stool and has to bend down pick up a car, pull himself back up, then he reaches over to drop it in a bucket. He'll do this one for a LONG time - again loves it. The last one "Engine's" sitting on the same stool we hold up a train above his head and he has to reach up with both hands and grab it. This one sound fairly easy but it's a lot of work for him to not lose his balance while reaching up like that.

Not sure if it is just these games on their own as we have also started to use a stander for an hour everyday to help stretch his hamstrings. And we also bought him a new walker that is a light frame like his Kaye walker but has four wheels. It does require more control so I'm sure all of the above are factors in doing this today....

Ready to cry? haha Well maybe you wont but I sure did! 

Last time I tried these canes with Ryder he could only take a few steps then would fall. I gave up on them for a while because I thought I was just getting way too ahead of him. I pulled them out again a few weeks ago and put a harness on him but it was the same thing he would take a step then just rely on the harness and he was ALL over the place. Today I decided to take the harness off and let him show me what he could really do knowing that he had nothing but himself to rely on. Of course I stayed behind to catch if needed (this being why the video kinda sucks and you cant really see how far he actually travels.) When I get an extra set of hands I'll take another from the front :)  But wow! WAY TO GO RYDER!!!!!!!

More updates to come shortly :)

Casts on.... Casts OFF!!!

Ryder like many kids with CP is constantly facing the challenge of his muscles getting tighter as he grows. Everything that we are able to do for him is just a band-aid solution until his next growth spurt. We work so hard to stretch him and get him the exercise he needs but his body is constantly working against us and sadly it will never be enough. 

Last week we went in for our third set of castings. Ryder was again, unable to get his feet flat to the ground when walking. His major tightness comes from his hamstrings and heel cords. Since it's impossible to cast to stretch his hamstrings we went ahead to see if stretching his heel cords would make the difference he needs to get back walking with flat feet. Luckily one week was enough to loosen them but boy was that a LONG week!! No kid, no matter how old they are wants to be stuck in casts for any amount of time during the summer. The days were long and very repetitive with lots of tears for mommy to take the casts off! He went from sleeping solid for 12+ hours every night to waking up 3-5 times before Tyler and I would even have the chance to head to bed ourselves. Needless to say it was not fun for any of us.

Still smiling :)

Ryder's funky "Walking Shoes" I made him out of women's crocs! lol

He LOVED them!! 

Today we went back to the hospital for the nice man to take his casts off. Ryder was very excited. He even told a lady in the elevator all about it! Yesterday and today I explained to him over and over how the nice man would use a very loud saw to cut the casts off but that it wouldn't hurt and might even tickle. (Our experience last year was very traumatic for him and I really didn't want a repeat. He cried this cry that I had never heard in my life, the pure fear that something very bad and painful was going on and I was just sitting there letting it all happen.) This time however he did AWESOME!! The whole time the first cast was getting cut he laughed and kept saying "that tickles". By the second he was ready for it to be done but still only let out a couple whimpers. Two nurses came in directly after gave him cookies and said how brave he was and that he had been the most well behaved and quiet out of all the kids they had seen this week. 

After a week of sponge baths he was VERY happy to have a nice soak in the tub tonight :)

Unfortunately even though his heel cords are now loose enough to get his feet flat, he is still unable to walk flat foot with his AFO's on. He's still way up on his toes because his legs cant get straight. His hamstrings are just way too tight. Not exactly the results we were hoping for but at least we tried. So now we enjoy the rest of our summer and wait until September for our trip to Montreal. Hopefully then he will get the Botox injections in his hamstrings and possibly heel cords (which means more casts!!). Besides major surgery the Botox and casts are our only option right now.  

update :)

It's been a while since my last post and I think I am finally at a place of acceptance with Ryder's latest diagnosis. The "A" word doesn't seem so ugly anymore and I honestly don't care about the label at all. Ryder is such a smart, funny, happy little boy and there is no possible way that this could ever stand between him and his dreams. He will be getting the therapy he needs but really nothing else will change. We are still the same happy little family with a lot of love and support to give!

Ryder has been doing amazing with his one on one time with his early intervention worker that comes to the house. He loves her and talks about her quite often. She is impressed with all areas of his development including his social skills!  I told her how differently he acts with her compared to his other therapists and it comes down to her coming into Ryder's comfort zone where as his other therapies are in a clinic setting. She was very surprised with the Autism diagnosis but again he acts so differently depending on where he is. She understands why it may be so hard for some of my family to accept this diagnosis. 


On the physical side Ryder has been struggling a bit. As he grows he's getting tighter and tighter. His muscles just can't keep up to the rate his bones are growing. He is still unable to wear his AFO's because of how tight his calf and hamstrings are and he is once again struggling to get his feet flat on the floor. I contacted our physio therapist in Montreal and she compared measurements with our physio therapist here and Ryder is extremely tighter now than he was at our visit in January. They decided he could benefit from the Botox injections now but unfortunately the earliest he could get them done is in July. He would need to have casts  put on immediately after for min 4-6 weeks but I just couldn't do that to him. He spent all winter being cooped up with the nasty weather and I couldn't take the fun summer away from him.  With the casts there would be no swimming, no walker, no beach.... Basically all the things he loves to do :( Anyhow I agreed to try just doing one set of castings here for about a week without the Botox to see if that would help temporarily. We are still waiting for the prescription for that but it's looking like it will be a week in July (hopefully a rainy one). 

We recently bought Ryder an adaptive trike and he LOVES it :) At first it took him a while to warm up to the idea of "working hard" on our walks but now he chooses it over his car that he just sits in. Every day he seems to be getting better and better. The first while it took a lot out of him just to hold the handles while I pushed it. Now he's able to make it go on his own for small periods of time. It's funny i'll be pushing it slowly and as soon as there's a little dip in the sidewalk he'll start whipping his arms around making it go super fast and say "weeeeee down the hill!!" lol It's such a great workout for his arms and getting that full extension he so badly needs is really helpful. The reciprocal movement for his legs is also really great. 

I didnt think he was actaully using his legs much but he surprsied us at physio today on a regular trike!! He was doing all the work his P/T was just trying to steer his crazy driving. We were both shocked and SO proud of him!

Some other changes over the last month: Ryder got a cool new Big boy bed which just happens to be a awesome race car bed! He is over the moon happy and ever since he's been sleeping through the night!!! We also stopped his Melatonin supplement which I finally figured out was making him sleep worse because it was giving him nightmares :( He doesn't get a nap during the day to insure he will be sleepy at bedtime but as long as i can keep him entertained he does pretty good. A combination of the no nap, no Melatonin and the race car bed has been quite delightful! On the rare occasion if he does wake in the middle of the night, I can reason with him and say "Your a big boy now and we bought you this cool new race car bed because you can sleep all by yourself now!" I give him a kiss and leave and it actually works. He stops crying and goes back to sleep! I am still in shock about this one but it hasn't failed me yet!! :) Where did my baby go?!?!