2012 : Ryder's year!

The Christmas season is finally over. It's a hard season for me and it's always nice to know the new year is coming. This year I am extremely excited for the new year. I know this is Ryder's year! As some might imagine, his first two years were a bit of a struggle. First year we rode the NICU roller coaster, lost Wyatt and tried to plain out "survive". His second year we spent trying to process his new Cerebral Palsy diagnosis and figure out what was next. But this year I know is going to be great, it's gotta be!  We have amazing family, friends, doctors and therapists all supporting us and it feels awesome. So many people following Ryder's journey and cheering him on all the way. We really can't thank you all enough for the donations, support and positive energy you have put out in the world for Ryder. He really is such a special boy and I am so grateful for all the opportunities he has been given thus far.

Were almost on our way, just two more day until we leave for Toronto!! Getting excited but mostly nervous right now. A little worked up about the travel part, up until I meet my mom in the airport when her flight comes in an hour after mine. Just thinking about me trying to collect all my luggage all alone, is giving me an anxiety attack. I will have Ryder, my carry on, his stroller, two large suit cases, his car sear and his walker!! I know I'll be fine and be able to manage just like I always do in these situations but I really will be happy and more relaxed once that part is over!

We will be staying in Toronto for two days then head to camp on the 1st. After that it's five full weeks of intense therapy. I will try my best to keep the blog going through our stay. Wish us luck! We are on our way!! :)

Crocodile walk

Just two weeks until we leave for camp!! With Christmas being right around the corner I know the time is going to fly by! The donations have not stopped and we are left feeling SO loved and supported. Please know that even though we have raised enough money for camp, the remainder is going towards great thing for Ryder. His new walker being one and his leg braces are next on our list. Thank you all so so much!!!

We received an early Christmas present on Friday morning.....Ryder's walker FINALLY came!! Honestly at the rate it was moving I really didn't think it would get here before we left. It sat at customs for over two weeks and in total we waited a full month for it to arrive. Next time we need something we will have it shipped to the states and just go pick it up ourselves. Lesson learnt. None the less, it is here now and Ryder is one happy little boy using it!

We have been having a hard time walking outside as it's getting colder, so tonight we thought we'd take the drive out the Qplex to try out the walking track. It was awesome. It would have been better if there wasnt a hockey game going on, as Ryder was VERY distracted but he had a lot of fun and really that is all the matters. The track is 1km when walked around five times. Ryder managed to walk around two full times, which i think is absolutely amazing! For sure the furthest he's walked to date. 

Here the boys are getting distracted again... haha 

And here is the boy in action!! :)

I just wanted to also talk a bit about the walker for anyone who may come across this and is interested in buying one. This is the fourth walker he has tried and to me the best. It is called the Crocodile Gait Trainer made by Snug Seat. So far I am in love with this walker and really think it is one of the best out there for transitioning from a full on gait trainer to rear walker. The walker comes just as a basic rear walker and you can add as much supports as needed, this being the reason I think it is classified as a "gait trainer" on most sites. The wheels are awesome! They come standard with the walker and have speed control, anti reverse back wheels (unlike a lot of other walkers when put in anti reverse they don't slip or slide back at all!) and you can have the front wheels either swivel or lock straight. The wheels are also on the larger side making it easier to go on uneven ground and even grass :) We purchased the pelvic pad and lateral supports to help keep Ryder centered, an attendant bar to help steer him while he's learning and a fold down seat for when he get's a bit older and can pull it down when he may need to have a rest. Very happy with this purchase :)

home ♥

We have officially raised enough money!! Our grand total is $13,280!!! We are just so grateful to everyone who has helped us get to this point. We now have enough money for camp, HBOT, our travel and food expenses while we are there!!! I am so blown away with everyone's generosity. THANK YOU!!

Ryder and I are home from our three and a half week long trip and we seem to be having a very hard time adjusting back to "life". It's always hardest coming back and losing those four hours even if technically it's only three, as we spent the last week in Alberta.(it's still hard!!) We had a really good trip and it was so nice to be able to spend so much time with family and friends. I got to meet and snuggle my brand new nephew and we are honored that the payed tribute to Wyatt with his middle name. As fun as it was, it's always good to get back home. Ryder missed his daddy so much and now whenever Ty tries to leave the room he cries out for him. A little sad that we are only here for another month before we take off again for five weeks to go to camp.  I am however getting really excited about the possibilities camp may bring. I can't wait to get there and get started then of course get home to Daddy :)

Ryder made such huge progress while we were away. It amazes me how much that walker helped his legs. After a few days of using it his tight muscles had relaxed so much. When I would stretch his legs he would giggle instead of scream and his feet were as flat as can be. Since not using it for a week and a bit his legs have started to seize up again and it's really hard for him to go flat foot. The worst is trying to do his stretches, we are back to the screaming in pain again :(  We have ordered him a walker of his own and I am really hoping it gets here sometime this week. I guess the saying " if you don't use it, you lose it" is very relevant to Ryder's little legs.

Ryder turned two while we were on our last flight home. We really pushed the "infants up to two years old travel free" rule to the limit. We spent his Birthday searching for the perfect big boy bed but failed to find anything low enough for him. For now we just have his new mattress on the floor and he couldn't be happier :) I can't believe he's already two!!! It's so hard not to envision our life the way it should be with Wyatt here, especially on days so special. We sent our Birthday balloons up to heaven for our sweet angel. As soon as they were out of sight, I knew he had got them . It was heart wrenching and perfectly beautiful at the same time.

We love and miss you so much sweet boy. Happy 2nd Birthday Wyatt & Ryder! xoxoxo

Taking walking to the next level!!

Ryder just keeps doing it. Seems almost everyday he's blowing me away with another trick he has hidden up his sleeve.

We weren't able to bring his walker on our trip because it's so big and doesn't fold down at all. Even if we were able to check it with the baggage, it would have taken up to much room with all our luggage in the car. Anyhow, Ryder's Aunty Karla was told about a lending cupboard on the coast for pediatric equipment. She made some calls and received a walker for Ryder to try out during our stay. It's nothing like his walker at home, it doesn't have any supports to hold him in place. Just a basic walker, very similar to one we tried out just two weeks ago with no luck what so ever. I don't know what changed between then and now but he is now doing AMAZING!!

Here he is after using it for just two days!!

We have been getting some awesome donations the past few days. I really can't thank you all enough. I will add everything up and give a grand total tonight. I know we are getting SO close, and it's all thanks to YOU!! :) xo

He's a climbing boy!

We have been so close, for so long but today he did it! After almost a full year of training, Ryder climbed the stairs all by himself!! He didn't just climb one or two, he went for it and did the whole flight! I AM SO PROUD!!!

 Look at him go!!

Right now Ryder and I are in BC visiting all my family & friends back home. We arrived Tuesday after a full day of travel. On our first plane ride we sat next to a mom and her 11 week old baby girl. Every time the baby would start to cry Ryder's little lip would pucker and he would cry too. Other than the last bit of screaming x2 it was a good flight and he slept the whole time. He did pretty good on the long flight too. He didn't sleep at all but he watched 6 hours of straight Thomas the train. You would think he would be sick of it after that but as always he's still asking for more. I now have a new appreciation and love for that "Cheeky little engine!" lol

Ryder has adjusted very well to the four hour time difference. He's sleeping in his own big boy bed, (aka mattress on the floor) and seems to be sleeping way better then he does in his crib at home. I end up in bed with him every night but mainly because I fall asleep cuddling him and am too lazy to go back to my own bed. He's also been using a pillow and I don't know why but I think it's the cutest thing ever!! haha!

This trip out, Ryder loves my parents dogs. He calls them Abba and Dog (Abbie and Ben) and chases them around the house. Iv never heard him belly laugh as much as he did the first night playing with them. We have only been here for three days but it already feels like it's going by way too fast. Lots of visiting and special people to see. We leave on the 19th to fly to Alberta to visit my brother, sister-in law, nephews and meet the newest addition to be! Can't wait!! So good to be home :)

From a vision to reality.

Well the last couple days have been quite the whirlwind. It started with a quick email to Ability camp asking when I should submit Ryder's video application for the camp...

Originally we were hoping to take Ryder to the January Mom and Tot camp but when we thought about all the factors, it didn't make sense for us. The main reason being Ontario has crazy winters and there's no way we would risk driving the 15 hours in a potential snow storm to get there. That would mean we would have the extra cost of flights and I would not have a car for the full 5 week stay. The camp is located almost 3 hours away from the major airport in Toronto and twenty minutes away from the closest grocery store. Not having a car and not knowing anyone who lives there makes for some difficult times. Another reason for wanting to wait is winters are pretty tough for me and the thought of being all alone in the middle of no where in an unfamiliar place didn't sound like the best plan.

Then we decided that if they would accept Ryder early, in the 3-6 year old session we could go in June when he would be two and a half and the weather would be nice so I could drive there. That was all fine until I was informed (in the email) no parents are allowed in the 3-6 year old class. The kids go in alone... For those of you that has not experienced Ryder's neediness to me, lets just say its bad. REAL BAD. I can't imagine spending all that money just to have him sit and scream for days on end. They said most kids usually all cry for the first 2 weeks but almost all get use to their parents not being there and do fine. In my opinion when your spending almost $10,000, two weeks is too much time and money to waste screaming till you puke everyday. I was also looking forward to being with him in the class learning along with him so I could continue his therapy at home. So now were back where we started which is January. THIS JANUARY! Like basically 2 months away January!! 68 days away January!! AHHhhhh!

So it started as a vision. A dream really and now, from all your help it's a reality. It feels like it was just yesterday when I stumbled on Ability Camps website. I sat there watching all the video testimonials with tears streaming down my face. I felt like I had finally found some answers, something that could really impact my beautiful sons life. I said to Tyler, I don't care what it takes, I am getting Ryder there. I didn't really know how it would happen but it didn't take long before you all made your support quite clear. YOU all made it happen for us! In four short months you raised $9214. I called today and made the deposit to save our spot. Thank you never seems to feel like enough.

Now with the extra costs of travel and possibly renting a car while I am there we are left a bit short. We need to somehow raise another $2000 to cover the extra expenses. I have no doubt in my mind that we can make this happen. But.... if you've been waiting for the perfect time to make a donation, now would be that time :)

I am nervous, scared, hopeful, excited but most of all thankful for this journey that we are about to take. I look back at my first post in the beginning of July and Ryder could not sit, kneel or crawl. All very important milestones that come so easy to most kids. We have worked with Ryder daily and now four months later and he is doing almost all of that plus more!! :)  I am so excited to see what he can get and learn from Ability Camp!

Feeding Frustration...

The last couple weeks have been a bit of a struggle. Ryder somehow hurt his Right leg/foot and wouldn't put any weight on his right side for a full week. He wouldn't use his walker or play standing. We had our appointment with the pediatric feeding team, which did not go so well. He has not been sleeping at ALL and caught a cold which luckily didn't last long but was still no fun while it lasted. Also it was Pregnancy and Infant loss awareness day on Oct.15th which always stirs up a lot of buried sadness and grief for me. It's so hard not to think of the "what ifs". What if TTTS never existed and I had two healthy striving little boys..... :(  I miss him so much and there's not a day goes by that I don't envision my life the way it should be.

"Wyatt we miss you every minute of every day but on days like this we miss you even more." 

International Pregnancy and Infant loss Awareness Day Oct.15,2011

Almost everything has settled but we are now dealing with the feeding frustration.

Ryder has never been a good eater, he struggles with texture and extreme flavors. We can't even give him baby Tylenol as he will instantly puke up everything in his belly. He will also gag and puke if something is lumpy or involves chewing and doesn't just dissolve in his mouth. He seems to do okay with crunchy things like rice cakes or crackers but we are very limited on nutritious food that he can eat. He will eat buttered toast, cheese cut in cubes and sometimes he will try cut up fruit. Everything else is crunchy or baby food consistency. We thought he was slowly getting better but he hit a wall then slowly started to get worse again. I was concerned as his little waist is so tiny and he only seems to be growing in length and not gaining any weight. Our O/T suggested she ask for a referral to be put in to the pediatric feeding team at the hospital to see if they could help. The team consists of a Feeding Therapist, Nutritionist, Psychologist and a Speech Pathologist. The night before our appointment Ryder was up all night, and I am not at all exaggerating when I say we all had max 2-3 hours sleep. Our appointment was first thing in the morning as they wanted to watch Ryder eat on an empty tummy. We sat in a room and fed Ryder many different foods while they watched from a one way mirror. After we sat and talked about ideas of new foods and what their concerns were. I am sure you can imagine having four different therapists telling you things can a bit overwhelming for a brain that didn't get any sleep. We left feeling defeated and even more limited on what Ryder can now eat. They no longer want him eating his toast or cut up cheese (which he loves and asks for at almost every meal). They are very concerned about the risk of him choking as it doesn't appear that he is chewing his food and he doesn't know that he needs to push it to the sides to chew after taking the initial bite.  They don't want him eating his baby food that he actually likes and they want me to make individual puree's of all different things and to not mix the flavors. From what I gather our goal is to slowly make the puree's thicker and lumpier until he can eventually just eat a piece of cooked carrot, potato or whatever it may be. I don't think they fully understand how difficult this task is going to be or maybe they do. It's way easier to say it and be on the other end not having to deal with the daily battle of meals. When Ryder first started trying solids I made everything that went into his mouth. I wanted to keep it that way but when you spend hours making baby food and only get a a turned up nose and big mess on the floor it obviously starts to feel like a big waste of time. Right now I am just trying to process everything then I will slowly start to implement their suggestions into Ryder's feeding routine. I personally don't feel like it's something that can just happen over night. On a good note, they were not at all worried about Ryder's weight or growth :)

I'll leave you with a video Ryder and I watch when we need a little inspiration :) 

Casts OFF!!

Again we are so blown away by everyone's generosity. Ryder is such a lucky little guy to have you all in his life. We now have a grand total of  $8824 in Ryder's account for Ability Camp!!! Big thanks, hugs and love to Ryder's Nanny Marg who made a very generous donation of over $1100!! And my parents back home who threw a huge garage sale where they made $1580!! Thank you to everyone who helped out and gave donations for the sale. Garage sales are a lot of work and we really appreciate all the time and organizing you guys did to pull off such a successful day.

Here's a smile from Ryder to show his thanks!!

Last week Ryder got his first Casts taken off and new ones put on. They were very happy with his extension from the first set and said the next set would be the last for this round of casting. He did good while getting them off but it was pretty scary for the little guy. He cried a cry I have never heard before, must have been the "I'm scared mom, please make it stop" cry :( Broke my heart. We bought him his own big boy headphones to listen to his Thomas movie but it didn't really work after the first one was cut off.

The second set of Cast were suppose to stay on till this Thursday, then because of some scheduling issues at the hospital they were going to need to stay on till the following Tuesday. I was pretty bummed because I feel like he hasn't had any real fun since he got them on. But Ryder was fine so I guess it would have to do. It was all good until this morning when Tyler noticed some sores starting to form under both casts on the soles of his feet. It looked pretty bad and our P/T agreed that they should come off to prevent any infection. Again he was not very happy about that darn saw but his mood switched fast once his little legs were finally free again!! They were so happy with the results even with having them taken off early. He can now get his feet flat on the floor! This is huge, as before he could only go up on his tip toes. We have already noticed he has so much more stability when standing now :) We are very happy and the casts were definitely worth it.

I really wish I had a video of him before the casts to really show how much of an improvement this is.

Ryder's P/T also made him night splints out of his casts to wear until he gets his made next week. They don't seem to bug him at all :) 

Sleepy boy has had a long day! Good-night :)

Casts for Ryder....

Well today was the big day, Ryder got his first set of casts on. Tyler and I both had ourselves pretty worked up about it but like usual Ryder was amazing and took it like a champ! He got a little annoyed at the very end which is to be expected but there were no tears :) It helped that the technician doing it was super friendly and he played with Ryder's trains and "Choo-choo-ed" along with him. It took maybe twenty minutes to have both casts put on.

Since getting home he has been doing pretty good. Movement is definitely more complicated now but he is still getting around. He can still play on his knees which I am super happy about. I had a bit of a panic attack the other day thinking the casts would be above the knee but thank goodness they aren't!!! Crawling is a lot more work, he still tries but falls to his belly a lot more than he did. Standing and playing at the couch is a BIG no-no now :( The fiberglass on our floor is like a slippery skating rink. They gave us little walker shoes but he's still very uneasy standing with them. I think it's because he's not able to grip the floor with his little toes like he did before to give him some sort of stability. 

They dont even phase him :)

His shirt says "for a small guy, I'm still a BIG DEAL!"

lol I thought it was rather appropriate :)

Meet the pro crawler!!

Well my prediction came true! It was just a month ago, almost exactly that Ryder first got up on all fours and decided to make his first move towards crawling. He would take a couple strides with his arms while I moved his legs then fall to his belly. May not sound like much but we knew this was such a huge accomplishment. When we first showed his therapists they were blown away and almost in disbelief of what he was doing! I said give him a month and he'll be crawling all over the place. Everyday we worked on it and he got a little better each and every day. Pretty soon he was moving all on his own and you could tell in his eyes and giggle that he was SO proud of himself. Now I would say he crawls about 90% of the time. Rarely do we find him pulling himself along the floor and if we do we say "come on Ryder, crawl" and he pushes up and gets going again! With every new milestone he reaches it confirms my thoughts that "hey this kid is gonna be just fine!"

Here's a small clip of him in action :)

This one is just him playing but it shows how he's getting a lot of control.

Ryder has also been talking up a storm! Speech delay is very common with kids who have CP and a lot will never speak but luckily Ryder dodged that one. He is saying new words and sounds almost daily. Today he brought me over his shoes and said "Shoe shoe" then he went over to the closet and pulled on his jacket and said "coat". Haha think he was hinting much?! It was enough to impress me, so we went for a nice long walk. :) He's also putting words together like "more toast" or the other day he said "Dadda wuv you". He loves making animal sounds but sometimes he likes to pretend every animal is a horse. :) He also asks for help for almost everything and his new favorite word of course is "NO" lol oh well at least he's communicating!!  

HBOT or Not?

Tyler and I have been back and forth with each other trying to decide if Ryder should get Hyperbaric Oxygen Theyapy (HBOT) while at Ability camp. My argument is I want and NEED to try anything and everything out there that could possible help Ryder. In Tyler's argument it is a LOT of money (that was generously donated) and there's no real proof or studies that have been done to say "yes this will help our child". It is so hard to make these decisions!! We have asked for advice from Ryder's specialists but with no proof on seeing any results they advised us against it. I just don't get why all these doctors are so negative when it comes to alternate therapy. It really makes me wonder what they would be doing if it were their child. I'm pretty sure they would do EVERYTHING they could to try and help. I have gone to forums and searched online for people who have done this for their children and have found that almost everyone says that YES they saw improvements. Actually I have not come across anyone who said they didn't see any difference. The more I read the more I want to do it. Of course I am not expecting it to "heal" Ryder and all of a sudden he'll be running across the room but I want to know in my heart that we have done everything in our power to help him.

As I just read this to Tyler we are STILL arguing about it!! I understand that it is a lot of money but I really feel like this is the right thing to do. Any advise or opinions on HBOT would be greatly appreciated. Thank you! xo

Okay this video has absolutely nothing to do with HBOT but I just wanted to put it here for my little nephew Branden!! He loves watching Ryder's movies! :) hehe!!

It does however show how stable he is getting on his knee's though! There is no way he could have done this without falling a month ago!! :)

And our GRAND total is.......

Wow! This past weekend we had so many generous donations! We were able to deposit almost $2000 into Ryder's Ability camp account!! Our GRAND total is now $6000.00!!!! Thank you never seems to feel like enough.... My cousins back home threw a very successful poker night. With friends and family they raised $1200 in one night!!! Wow guys, this means so much to us and we all love you so much!! We also had some more than generous donations from family and also friends from my moms work.

THANK-YOU!!

 

Here is a pic my mom took of the last round of the poker night. We have Mike, Tyler and Stan and the man on the far right Larry, who won the pot and very generously donated it ALL to Ryder!! From the sounds of it everyone had an awesome night! Thanks again!

Here's the pot!! :)

Ryder is doing pretty good. Not much going on these days. Summer has come to an end and Fall is definitely in the air. Our favorite outdoor pool has closed and the leaves are already starting to fall. I took Ryder for one last swim at our favorite beach and we also took him to a little fair where he went on his first carnival rides. All in all it was a good summer but I am a bit disappointed that we spent the majority of it's nice weather waiting for Ryder's walker. Pretty soon we will have to find some indoor options for Ryder to play and get his exercise. In two weeks time Ryder will have casts on both of his legs!! :(  Then I am gonna be really stuck for ideas on how to keep this guy busy!! NO swimming and NO baths!!  Hopefully he will still be able to use his walker but only time will tell.

Ryder and Daddy on the "Choo-Choo" :)

 Ryder and Mommy :)

Who needs a seat when you can WALK?!

We FINALLY received the guide bar for Ryder's walker and it makes the world of a difference! No more running around hunched over trying to steer him in the right direction. My back is very happy. We have also ditched the seat and Ryder is now walking instead of gliding around on his toes. He almost wore a hole right through one of his shoes before we took that darn seat off!!! He is doing SO amazing! He still toe walks but his therapists feel that after he gets his castings done and his braces are made he'll be more likely to be able to get those feet flat on the ground. We have taken Ryder to the park EVERY day for the past week. He LOVES it and I love how excited he get as soon as we get there!

                        Here he is walking with no seat :)

The park we have been going to is awesome for Ryder. Not only is the playground accessible for special needs kids it also has horses!! Ryder loves saying "hi and watching the horses :) The other night he was actually "Neighing" in his sleep! Silly guy...

Here he is walking up the playground, we did this about twenty times!! lol NO JOKE! I am sure we'll find ourselves back there again tomorrow :)

Today was a good day!

We are now at $4040!!! Thank you to EVERYONE that has helped out! Caiti keeps coming to my mom with more and more money from the donation jars. Ugh she is just so amazing! My cousins back home have also planned a poker night to help raise money. Again I am just SO blown away! Love all you guys so much!!

Today was such a great day! I took Ryder out in public in his walker for the first time. I was a bit nervous at first, as before now to everyone else in the world Ryder looked like an ordinary kid, just being lugged around by his mommy. In his walker it is so obvious that it's not the case. I was curious how other kids would react or if people would stare or point and talk... I know it seems silly but the thoughts were still there in my mind. We went to the park with one of my best friends and her daughter Hannah (Ryder's little girlfriend). As soon as we got on the path I put Ryder in his walker. Hannah immediately grabbed hold and they both started walking up the path together. My heart melted and I seriously almost started crying. Once we got to the top where Ryder could see the playground he started squealing with excitement. He had so much fun and got quite the workout too! I wish i had of brought my camera but I knew I would have my hands full. Next time for sure! Of course he drew some attention but it didn't really bug me like I thought it would. I had one little girl ask me what I was doing and why Ryder needed that "thing". I also over heard some kids asking their moms what that "thing" was. Of course kids will have questions... All in all it was just such a good experience for him, it made his walker fun again! And how neat it must have been for him to be at the same level of his little friend :) Cant wait until the guide bar finally comes in and we can take him on more adventures!!!

Sorry mom no new pictures this time :(

A little better every day!

Just wanted to do a quick post with some videos mainly for my family back home that doesn't get to see his progress first hand.

Just the other week I started working with Ryder trying to get him to crawl on all fours. At first I would work his feet while he moved his arms. He would only take a few strides then fall to the ground. We have been working on it everyday and now I think he actually prefers to be up on all fours! It seems everyday he goes a little further. He has even started to push all the way up into the crawling stance from laying flat on the floor! SO PROUD!! I took this video right before bed tonight, he was super sleepy after a long day and still managed to "wow" me :)

I also wanted to show a small clip of him sitting unsupported. He can only do this if he is concentrated on something and his legs are crossed but he still manages to stay upright for a LONG time (basically till he's bored and wants to move on). Sitting is a huge milestone for any child but in the CP world sitting is a HUGE deal! It is said that kids who have Cerebral Palsy and sit by the age of two are far more likely to walk than those who don't. I feel in my heart this kid WILL walk someday!!

A walking we will go!

We have now raised $3460! Thank you so much to everyone who has donated! Some donation jars have been placed back home in Gibsons and I am overwhelmed with how generous people have been. Thank you so much Mom for making them, running around collecting donations and really making it all possible. I am also in awe and so thankful to a little girl I use to babysit, who I guess is not so little anymore!! Probably the last time I saw Caitlin she was maybe 6 years old! Now she has graduated from high school and is all grown up! Wow really makes me feel old!! She has been amazing with requesting donation jars, collecting donations and even convincing co workers to pitch in. Thank you Caiti your amazing! Jars have been placed at the Seasond Kitchen, Fainting Couch Spa and Weatberries bakery. Thanks so much Karla, Kim and Caiti you girls are awesome!!

Ryder FINALLY received his walker that we have been waiting for  months to get. Unfortunately some of the parts were missing (including the guide bar) so we haven't been able to take him out in it much. We also need some help with the adjustments to try and get him walking rather than gliding across the floor on his toes. The Physio therapist in Fredericton has agreed to fit us in and see what she can do to help. He seemed to walk so much better in a different brand that he tried out while we were there. We are going to try that one again and decide which one is right for Ryder. Tyler and I are starting to think he may just be getting lazy!! Why walk when you can glide and roll right?? Ugh!!!!

Ryder has also been working really hard on "proper" crawling. He's been able to do the army crawl for sometime now but to actually be up on all fours and be weight baring on his arms is a BIG deal for the little guy!! It started with us just putting him on his knees then getting him to put his hands down and hold for a couple seconds. He thinks it's a game and loves it when we say "hands down". Next I had him move his arms while I moved his legs crawling towards a toy. Then last week he started making strides all on his own! He can only do about four or five motions before putting his belly to the ground but he has come SO far! Even brought tears to his P/T eyes when he showed off his new skills.

This was the best I could get tonight as we have a very over tired little boy on our hands! I'll try to get a better one tomorrow to replace this one :)

We are 1/4 of the way there! :)

Sorry it's been so long since my last post, I really wanted to keep this blog as positive as possible. But... Lately I feel like everything has been such a challenge. Ryder is doing AMAZING as always but everything out there in place to help kids like him, are unavailable at the time. I am getting so worn out with empty promises on the equipment Ryder so badly needs. We are also being directed in a million different directions to seek help and resources, when in the end we are only being put on huge waiting lists. There is so much more I could go on about but I will just leave it at that. I am sure you would much rather hear about this amazing kid!

Ryder has learnt some new tricks in the past couple weeks. He has started sitting (while occupied) for longer periods of time, he has been pulling himself to standing on anything he can and the other day he was able to go from all fours up into high kneeling!! That was a huge moment as before that he wouldn't even go on all fours!! I feel like he is "able" to crawl but he just know's what works and that's pulling himself army style.

We are doing awesome with our online donations! We really can't thank you all enough!! We have raised a total of $2,950! Our goal is $12,000 so were 1/4 of the way there!! Thank you, Thank you THANK YOU!!!

Steps in the right direction....

Well today was a huge day for Ryder. We had our long awaited appointment at the Stan Cassidy Center for Rehabilitation in Fredericton. From the very start we were blown away with all the staff there. The therapists and doctors were amazing!! We had three solid hours with one on one (sometimes two on one) attention, all on Ryder. I feel we now have a better understanding on where he lies with his CP diagnosis. We also have a game plan for Ryder's treatment for the next little bit.

To start everything off he is definitely in need of a walker/gait trainer! They had one for him to give a test drive and he LOVED it! It was so fun to see him be able to just up and go wherever he wanted. He was beaming with excitement!! A very proud moment for his biggest fans!!

Hopefully he can get his own very soon! They were so impressed with his determination and how he just flew across the room like he does this all the time! So the walker is First on our list. Second he will have castings done in late September. Basically they will put both of his legs in casts just below his knee all the way to to bottom of his heel. They will angel his foot slightly to give better extension. After five days the casts will be removed and left off for a day, then new ones put on hopefully giving him his full proper extension. This processes may need to be done from time to time to insure his feet are able to come flat on the ground hopefully preventing surgery down the road. After the casts he will get braces for his legs (nothing like the one's Forest Gump wore) Tyler had to make sure of that.... Then around late November he will received Botox injections in probably both his arms and legs to help his stiff muscles to relax. This treatment is only temporary and may be done up to two times a year depending on Ryder's stiffness. He also had x-rays on his hips and knees today. We received a call from the Doctor just an hour after getting home saying they both looked great.

We are so excited and feel like the ball is finally rolling. We hated feeling like nothing was being done and we were just sitting and waiting with no clue what his future held. We still don't know exactly how everything will pan out but having a game plan and some goals make all the difference!

Just wanted to share one more video of the little guy. He's not walking here because he was so distracted by all the balls in the room! They were EVERYWHERE!!! It's cute! Man I love this kid!!!

Sitting Pretty :)

First I just want to give a shout out to everyone who has made donations so far! We have received almost $1400 in online donations!!! These donations are amazing and really do mean the world to us :)  Thank you, Thank you, THANK YOU!! We also now have his account set up through TD Canada trust but it wont let me access it online at the moment. If anyone has made a donation there THANK YOU as well :)

Since we started the facebook event and blog to raise money for sending Ryder to Ability Camp, Ryder has been making huge steps in the right direction. I am not sure if it's him feeding off my excitement and energy or just a coincidence but whatever is going on is definitely working!! It's almost been a full month since Ryder's last Physio/Occupational therapy appointment. With it being summer and everyone's vacations they had a hard time fitting him in. I was really worried about how his progress would be during this time without any therapy. Luckily for us what we have been doing at home seems to be working. This makes me so excited to think about how much progress he could make at Ability camp!!

The last few days Ryder has been pulling himself up onto anything he can. It's awesome but so scary at the same time. Once he's up he has no balance so he comes crashing down, FAST! I think we may need to invest in a helmet pretty soon here.... Two days ago I came into his room after his nap to see this:

                        I guess it's time to raise those rails :)

Then the next night in the bath he decided to pull himself onto his knee's and play holding onto his corner tub basket for the rest of the time. Now there's no keeping him laying down, he just wants to play upright. I don't blame him one bit! He's also been talking up a storm and trying new words on a daily basis. His latest thing to say is "Car vroom vroom" when he's playing with a car or he see's one. (Was really cute when he spotted them on his jams tonight :) ) He said "Hannah" (his little girl friend) just the other day and now says "NANA" whenever we get somewhere and he's excited. I think he think's Hannah will be wherever we go. He's starting to say "thank you" without being asked and will call out "momma" whenever I am out of his sight. He has started to wave on a more regular basis to people walking by or when someone is leaving and tonight he decided to blow his Nanny and Grampy kisses good night. It's all these what may seem to be "little" things that usually keep me going but today he did something HUGE and I still can not stop smiling!!!

                   

Ryder decided to sit and play for what felt like FOREVER before toppling over. As long as he was concentrating and playing in the sand he stayed sitting upright!! :)  This was the longest he's ever sat before and it was for probably around 10 minutes or so! I love how he's filling his tiny little dump truck up with sand!

After playing in the sand he decided it was a good time to go for a swim. Obviously Ryder didn't care he wasn't wearing his swim suit or that his poor mommy is afraid of the creepy crawlers in lake water! Like usual there was no stopping this kid from going where he wanted!! So off in the lake we went! We had fun, and a nice long bath when we got home :)

Clap with me! :)

Just wanted to pop on quick before bed and let everyone know we are now at just over $800 in donations!! Again thank you all so much! 

Two very generous donations were made today that touched my heart more than these fine ladies could possibly know. One came from a dear friend who lost both of her twin boys at 24 weeks due to premature labor. Her loss rocked me hard. We were both pregnant with our twins at the same time but I did not even have the chance to share it with her. She helped me through my early stages of grief by just being there and letting me know I was not alone. The other came from a loyal friend who I love, yet have actually never met in real life! Our unique situation brought us together and I can honestly say I don't know where I would be without the support and guidance she has given me. She also lost one of her boys to TTTS and has a survivor with disabilities. The little critter has given our whole family such hope and inspiration as we follow his progress. Thank you both so much! xoxo

I also just wanted to share a quick video of Ryder from today. For the past couple months he has been able to knell behind a diaper box and actually play upright. This was huge for him as he still can not sit and always had to play laying on the floor. Well yesterday he slowly started to let go of the diaper box and balance on his knees! We have to watch him as sometimes he will slip into the "W" sitting which is a big no no from his therapists but this is such a HUGE deal for him and us! Anyhow today he started balancing more and more without the box and just for some shock therapy for his mommy he added some clapping!! It was so cute I just thought Id share :) 

         

Feeling the Love :)

We have received some more than generous donations in the last 24 hours and I really can't find the right words to say or describe this feeling. I keep saying overwhelmed but usually that feeling with me is not such a good thing. This is me being overwhelmed in the best possible way! :) Some of the donations are coming from old friends, we haven't spoke to in years and some from complete strangers!! I thank you all from the bottom of my heart. We have received just over $500 in online donations and messages of more waiting for our bank account to be opened. Wow I am really just left speechless at the moment and I know this good karma will come back to you all, in your time of need. I am sure Ryder can say it better than me, so here it goes........

It was a nice day in Saint John today. I was really contemplating taking Mr.Ancy-Pants out to the Qplex for a swim but thought I should save it for a day Daddy can come too. Ryder and I still managed to have a fun afternoon :) I filled up his pool (with warm water only because I couldn't find the hose) and we relaxed and played in the yard. He even managed to stay upright leaned against the pool for a while :)

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                    He LOVED trying to splash Mommy!!

Today we count our blessings

We are feeling so loved and supported by our friends and family, now more than ever. I found out about the Ability Camp on Wednesday and just two days later we have so many people saying they want to help get Ryder there. We are so grateful and blessed to have you all in our lives. Through all the heartache and pain we have endured in the last two years it's moments like this that remind us it's all going to be okay.

There is a Paypal "Donate" button on the side bar and we will be going to the bank on Monday to set up an account in Ryder's name. We thank you from the bottom of our hearts. I will continue to blog about Ryder's journey and as you follow along know that you had a part in where he is today.

yfrhtrjhttjg- Love Ryder

Happy Canada Day!