Monday, June 18, 2012

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?!?!