Ryder's Ability Camp Progress

Yes, for those wondering Ryder did indeed graduate from his first go at Ability Camp!! I am a bit behind but have some photo's and info to share.

Ryder received a progress report of all the things he achieved at camp:
He became more flexible, developed more trunk control, he has better coordination of his movements, he learnt how to change directions using a kaye walker, he learnt how to stand up from the floor and from a stool with his walker, his speech improved, he is more independent and will go for longer periods of time without me, his social skills improved, he eats more solid foods, he can stand with canes for a short period of time and he now uses the POTTY!!! :)

As a very proud mommy I think this is an awesome list and so worth all the hard work. We left with some great tools and have been implementing them into our daily routine. Ryder had an amazing time, met some great friends and misses them ALL dearly. He talks about them daily and when asked what he wants to do he usually replies with "I wanna play with Jordan" or "Dax" :) They also sent us home with a before and after video that I would love to share with everyone but there was a mix up and we got half of someone else's. I will share it as soon as it come in the mail!

Yay!!! We did it! :)

Where I (Dana) am at right now...

Well as some may have noticed I am way behind on keeping up with this blog. I had been having a bit of a rough patch but I feel like I am finally starting to get back on track. I have been feeling so overwhelmed and really not knowing where to start, so I am just going to go for it the best I can...

Ability camp really took it's toll on me. I spent most of the time being either really sad or REALLY angry. I was forced to deal with a lot during my time there. It was the first time since Ryder's diagnosis and even Wyatt's passing that I really had time to myself. Too much time if you ask me. Although we were kept very busy and worked our butts off, as soon as Ryder went down for the night I was alone. No cell reception, many times no internet and just a stupid calling card that I was too cheap to use. I learnt a lot about myself and I really do believe I came out a different person. It became so aware to me that I have lost "myself" completely. Perhaps I am still here a little in the physical sense but for the most part the old me has vanished. Losing a child then learning your surviving child has a life long disability is a hard pill to swallow. Then you throw moving away from everyone and everything you have ever known and loved really puts a spin on the already sensitive situation.

I use to enjoy being me.... Going out with friends, finding fun things to do, listening to music etc. I use to care how I looked and tried to do things for myself that made me feel good. I would get my hair done, go out with my girls, go shopping for myself. Now it seems I don't do anything. I haven't done anything in that list in a very long time and that really needs to change. I have absolutely no balance in my life anymore. I have condensed all my time and energy and put all the focus on Ryder. Nothing else seems to matter to me. I cant even describe the immense pressure I have put on myself to make sure I am doing EVERYTHING in my power to make sure Ryder will walk some day. I want so badly for him to lead an as "normal" life as he wants to and not have to be excluded from anything he wants to do. When I think of doing something for me then look at him I just dont care about me anymore. He is the very most important person in my life and I need to somehow learn how to merge the old me with the new to become the very best Mommy/Wife/Friend/Daughter/Sister/Auntie/Granddaughter possible.

I apologize to anyone who I may have neglected in some way in the past couple years. I know that's very broad but trust me when I say, the guilt lies very heavy on my heart. It has been suggested and now I am starting to believe that maybe I was/am "stuck" in my grieving process. I bounce around a bit but I have never fully came to terms with the (to me) recent events that life put on my lap. I believe I am also just "stuck" on me. I am constantly feeling sorry for myself and comparing every situation to mine. I find myself unable to have any empathy for anyone whose story isn't as sad as mine. Who is this person?! UGh!!!! I am SO ready  to move forward and  accept that this is my life. I know first hand how short this life can be. There is no time not make the best of it.

Wyatt will always be in my heart and I wont EVER stop missing him. Ryder will always have CP and we will always work our butts off to provide for him and push him to be reach his very best potential. I will always put my needs somewhere below the others I love but I just need to make sure to take some time for myself to make sure I don't do another disappearing act.

Feels good to get that out :) Now back to Ryder!!!

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!!

3 down 2 to go!

Day 21 today and tomorrow we enter our fourth week! It feels so good to have the bulk of this behind us. I am trying my very hardest to keep positive and just take it all in. I am still really homesick but I am choosing to switch my focus.

Ryder is doing great and already, I can see so much progress. Today I watched his Ability camp application video, that I made just a few months back and I am shocked at how far he has come.  Since getting here he has gained a lot of balance, the first few days in their backwards walkers he needed someone to steer him around. Now he just takes off down the hall all by himself. He can steer into doorways and even throw his weight to completely turn himself around to go the opposite direction. He can even walk backwards!! lol I have also noticed he can stay up on his feet for longer periods of time. Before he would prefer to crawl and now if the walker is there he will crawl to it pull himself up and just go! His vocabulary has probably quadrupled and he often talks in sentences now too. I know Tyler is just going to be blown away when he sees him. Will be an exciting day for sure :)

Wish us luck for a great week!!

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 :)

 

Day 10

Day 10 at Ability and I think we are finally in the swing of things. I know I have a lot more energy and Ryder seems to be happier too. Ryder's speech has improved so much since we got here. He is now making four word sentences, saying a lot more full words and can count to ten without skipping any numbers. His favorite thing right now is to talk about is what he "see's". lol He'll say " I see a tree or I see a cat" ect... He picked up my phone the other moring and said " I wanna call Dad!" It's so great to hear his little voice and the funny things he comes up with :) He has been doing pretty good with daily camp activities, still has his moments but really what two year old doesnt?!

He had a bit of a rough day today as he got himself so worked up during the parent break that he made himself throw up. Then he had to continue the day until lunch with an empty belly. Really hoping that doesn't happen again tomorrow but if it does I gave them his warning signs to watch out for so they can make a run for it if needed. Aparrently he's not the first one they have worked with that likes to pull that stunt, which makes me feel a bit better. Everything else has been going well. Mom left on Monday and everyone was sad to see her leave. She was a huge help and Im so thankful she made the trip out. Ryder still asks if she's sleeping everytime we go in our room. A toy lending truck came by today so we could borrow a toy or two for the next two weeks. Neat idea and Ryder was very excited about the little train mountain set we borrowed.  Not much else to say just that we are all working really hard and can't wait to see the end results :)

Even though we make it look fun, camp is A LOT of WORK!!

Ryder walking the hall



Practicing with the ropes

Week 1..... DONE!!

One down, four to go! Ryder had a good day and I finally feel like I have some energy at the end of the day. The past few days I have been in bed by 8 p.m. because I literally can not stay awake any longer. The days are extremely physically exhausting for the kids and mentally exhausting for the parents. Hoping Ryder and the others will all settle in to the routine for second week and we can start seeing some results for all this hard work.

Don't have much to say just that things are going well and I have a few video's to share that I couldn't upload the other day.

Day 2!



Day 5!