horrible me

ok so I am really really bad at blogging!  I know I promised pics from last yrs disney world trip and Ill do that along with other pictures hopefully soon. the kids and I just moved so itll be after I have everything settled. Now on to Rykert, he is getting so big! Ry will be graduating from his Kindergarten on May 31st  I cannot believe it! He is doing really well on his medication and has not needed leg braces yet yay! There is a new medication study that will probably start next year that they are wanting to try on Ry when its approved for human testing that wont cure the problem but can help delay it even more so we will have to see on how that will work, if it improves and lenghtens his life  I am all for it. Well that is all I can think of right now I will try and be better but till next time Peace, Love, and Hugs :p

Sorry!

Sorry I am horrible about this blogging stuff :) hopefully ill learn to be better at it. So to catch everyone up on what is happening. It has been comfermed that Rykert does have Duchenne Muscular Dystrophy they have him on a steroid that will hopefully slow down the progress of it making it so he can walk a year to two years longer than if he was not on it, which can help lengthen his life about  5-10 years longer than without. it does have some drawbacks like giving him tummy aches so now he is also on a med to help with that and has to have lots of calcium and vitamins everyday so he stays healthy. in the end its worth it if it means he can walk and live longer.

On March 2nd he got a wish granted by Make A Wish  so we went to Disney World and had a blast we stayed at a little village ment for kids like ry called Give Kids the World in a beautiful condo like house that Ry called his house and he keeps asking to go back to "His House" Lilly got to meet her boyfriend Mickey Mouse and Ry is now an official pirate thanks to Captin Jack Sparrow.

As of now Ry is doing pretty good we have learned to not let him go down the stairs by himself or if he is he now knows to go down on his bum since he sometimes falls down them luckly only gotten bruises and not more seriously injured. Well I will post some pics from Disney world later now im gonna go to bed. Night all!

1 More Week

One more week until we know more about what is going on with Rykert, what more to expect with the Muscular Dystrophy. I am so glad the wait is almost over it is getting old not knowing for sure what is going on and we can get started in what we need to do to help Rykert and get him on track for physical therapy and everything.
Well now to the fun part what Rykert has been doing since I last posted. Rykert is fun and energetic as usual, he loves water and his favorite thing to do is playing in his small pool, running in the sprinklers, and having water gun fights. I usually loose the water gun fights I always end up with the crappy water gun somehow :).  What he does not like to do is get in the big pool I dont know why but he hates it! Today we are playing in his as he calls it little pool and water painting on paper and apparently on his sisters stomach, Loving the summer!

I am making this blog to keep everyone up to date on Rykert and his many adventures both good and bad. Rykert is 4 yrs old right now and was just diagnosed with Musuclar Dystrophy they are not sure how bad it is yet, but they suspect it is Duchenne Muscular Dystrophy, we will know more when he has his office visit with a specialist on Aug 20th.