Here it is Ryder's very first steps with his Canes!!!!
It's short, blurry and of his backside but it's one of the best videos I have to date of him wowing me!
Way to go Ryder you make Mommy and Daddy SO very PROUD!!!!!!
Wednesday, February 29, 2012
Ryder's stepping!?!
The snow is back and unfortunately it's once again too cold to be outside with the walker. We had to stick it out inside today so I thought we better make the most of it. There are many things we are working on these days but the newest is standing with his new Walk Easy Tripod canes. I have been hesitant in letting Ryder walk with them because were trying to focus on him standing first. I knew once we started walking, he wouldn't want to just stand anymore and didn't think he had the balance or coordination to walk just yet. Today I decided to go for it and walk together with them around the house. I would pick them up with him and guide him through the whole motion. He shocked me earlier in the day when I let go and he moved one of the canes and took a step! He fell when trying to move the second one but wow I got so excited!! We continued to use the canes together on and off all day, going both upstairs and down. About a half hour before bed I decided to let go and just see what he could do solo.
Thursday, February 23, 2012
Good things come to those who wait.....
I started this post in the airport last week but didn't get a chance to finish....
Today we were up at 4am to catch our 6am flight to Montreal for our long awaited appointment at the Shriners hospital. Ryder did amazing on the flight and I give all the credit to the new car seat we bought that fits on the plane seat. What a difference to have him strapped in and not freaking out trying to escape from his seat or my lap. He knew he had to sit just like he does in the car and there were no tears. YAY! We arrived and were greeted right away by a Shriner and brought straight to the hospital. We were there by 8:00 and our appointment was not until 1:00! The staff and social worker were amazing! I was able to leave Ryder's car seat and our jackets in the office and we were giving a food allowance for the two of us for the full day. One of the staff members gave us a tour of the hospital then our waiting began. 5 hours seemed like forever trying to keep Ryder occupied. There were toys and t.v.'s but not the best set up for little kids like Ryder who can't walk and just want to crawl around on the floor. His knees were disgustingly dirty and I had to wash his hands about every ten minutes. Not that it was a dirty place at all, just like any public place not the best for a little guy crawling all about. During our appointment we saw a occupational therapist, physio therapist and the Doctor on his case. The therapists seemed to be VERY impressed with all the things he is doing. They were very excited to see him crawling with reciprocal movements and pull to standing the "proper" way (pushing off with one flat foot). When they gave him a walker to test out they got even more excited and said he has such strong potential to walk INDEPENDENTLY one day!!! It felt really good to hear such a positive predication for the future. Before then it has always been "he's so young that it's too hard to tell". They also said they strongly feel he's going to take off in the next six months. I also feel that way, I mean just look how far he's come in the past 6 months! I left feeling really good, tiered but good! He needs AFO's made and they were prepared to put me up in a hotel and get them made right then but it was Thursday and with the weekend they would have needed me to stay until Tuesday. I didn't come prepared for that so they said they will contact our Physio therapist and decide if it's cheaper for them to fly me back and put us up in a hotel for two nights or just pay to have them made here in Saint John. I am really hoping they get made here so we don't have to make that trip again but I'll do whatever needs to be done. After his appointment a Shriner then drove us back to the airport where we waited another five hours for our plane!! Sucks living in such a small place that there aren't very many direct flights per day. Anyhow Ryder was amazing!! No fussing at all and he laughed the whole flight back home. A man sitting in front of us even complimented Ryder on his behavior and said how impressed he was. He mentioned that he saw us earlier on our first flight and what a long day that must have been for him. Yup id say a 20 hour travel day for a 2 year old with only a 45 min nap is a pretty LONG day.
We were very happy to get home and we both passed right out. Still waiting to hear whats going on with the AFO's. Hopefully we can get them made really soon, it will be great to give him that extra stability.
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Today we were up at 4am to catch our 6am flight to Montreal for our long awaited appointment at the Shriners hospital. Ryder did amazing on the flight and I give all the credit to the new car seat we bought that fits on the plane seat. What a difference to have him strapped in and not freaking out trying to escape from his seat or my lap. He knew he had to sit just like he does in the car and there were no tears. YAY! We arrived and were greeted right away by a Shriner and brought straight to the hospital. We were there by 8:00 and our appointment was not until 1:00! The staff and social worker were amazing! I was able to leave Ryder's car seat and our jackets in the office and we were giving a food allowance for the two of us for the full day. One of the staff members gave us a tour of the hospital then our waiting began. 5 hours seemed like forever trying to keep Ryder occupied. There were toys and t.v.'s but not the best set up for little kids like Ryder who can't walk and just want to crawl around on the floor. His knees were disgustingly dirty and I had to wash his hands about every ten minutes. Not that it was a dirty place at all, just like any public place not the best for a little guy crawling all about. During our appointment we saw a occupational therapist, physio therapist and the Doctor on his case. The therapists seemed to be VERY impressed with all the things he is doing. They were very excited to see him crawling with reciprocal movements and pull to standing the "proper" way (pushing off with one flat foot). When they gave him a walker to test out they got even more excited and said he has such strong potential to walk INDEPENDENTLY one day!!! It felt really good to hear such a positive predication for the future. Before then it has always been "he's so young that it's too hard to tell". They also said they strongly feel he's going to take off in the next six months. I also feel that way, I mean just look how far he's come in the past 6 months! I left feeling really good, tiered but good! He needs AFO's made and they were prepared to put me up in a hotel and get them made right then but it was Thursday and with the weekend they would have needed me to stay until Tuesday. I didn't come prepared for that so they said they will contact our Physio therapist and decide if it's cheaper for them to fly me back and put us up in a hotel for two nights or just pay to have them made here in Saint John. I am really hoping they get made here so we don't have to make that trip again but I'll do whatever needs to be done. After his appointment a Shriner then drove us back to the airport where we waited another five hours for our plane!! Sucks living in such a small place that there aren't very many direct flights per day. Anyhow Ryder was amazing!! No fussing at all and he laughed the whole flight back home. A man sitting in front of us even complimented Ryder on his behavior and said how impressed he was. He mentioned that he saw us earlier on our first flight and what a long day that must have been for him. Yup id say a 20 hour travel day for a 2 year old with only a 45 min nap is a pretty LONG day.
We were very happy to get home and we both passed right out. Still waiting to hear whats going on with the AFO's. Hopefully we can get them made really soon, it will be great to give him that extra stability.
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The new car seat is a life saver (lol) and the new car seat cart is more than convenient! :)
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Cat nap :)
Wednesday, February 22, 2012
Wow!
We seem to be having a warmer day today. So when Ryder asked (like he always does) to go outside I decided to give it a go. The snow has been melting and the exposed grass is very soggy and there are puddles and muck everywhere. It wouldn't stop any other two year old, so why would i think it could stop Ryder?!
Man I LOVE this kid!
Monday, February 20, 2012
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!
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! :)
Sunday, February 19, 2012
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!!!
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!!!
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
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!!
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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