So this weekend we went to Summersville Lake in West VA to celebrate RJ turning 30...We had 22 people who braved the elements to make it an incredible weekend! Sharon had such a great time with cousins on the Baer side, and Anna who came with us. The kids all took great care of Sharon and included her in their fun. Folks got to climb, kayak, hike, geocache, play soccer, swim (brrrr!), hang out and eat and talk. It was so special to have this weekend with all these folks who care about RJ...and they got to see how well Sharon is doing after following her progress from afar. After spending the time with the cousins, Sharon is talking noticeably more today and also pulled herself to stand for the very first time during PT this afternoon (shocking me and the PT speechless!) She always seems to have bursts of progress after spending time with active kids, so THANKs to Sydney, Justin, Lisa, and Patrick (and all the rest of you "big" kids!) who spent time with her this weekend!!!


it was cold and WET when we got there....








fun kayaking...see dog is helping...













With Daddy for breakfast by the fire

daddy's party

Hanging out with Pop Pop by the fire













Geocaching with some cousins (Lisa, Justin, Syndey, and Anna)















Relaxing and keeping warm with Anna







How many people does it take to set up a tent??

cute legs!

Here she is with the shortened AFO's...i could look at these little legs all day (and do, in fact !)

Hello again!
I am sorry there haven't been any pictures, there will be soon i promise! My camera hasn't been accessible lately and i haven't taken the time to download pix, but i will.
Sharon has been doing well. Having her right arm looser (because of the botox) is really cool and allows her to do more things. The botox will probably start to wear off in about a week so we're taking advantage of it. Her cut-0ff AFOs are very fun. It's so neat to see her little legs (that's what i'm wanting to post a picture of...) . We haven't really seen her little calves and knees so it's cute to see how tiny she is without the big braces. She's still hesitant walking with the shorter ones and isn't ready to let go of hands yet, but she'll get there again. We're hoping that the shorter AFOs will make it easier for her to get into standing position, something that needs to happen for her to have any kind of independence. I keep praying for the day when i leave her sitting alone in a room and come back to find her standing up....I think i have to be patient on that one, but by the end of the summer would be great! That's also my goal for talking. She's so close. I'm now not the only one who's hearing her "say" things, so that is good!
oh, and she finally weighs 19 pounds! Yay! Someday she'll break 20, but probably not before she's 3! Hard to believe one can be so tiny...
We're winding down the school year. I'm not sure if she'll go back next year or not. They have changed their rules and aren't going to allow part-time kids next year, and i can't imagine sending her full time so i'm going to see what options we have. I'd love to just keep her home with me, but she really does need to be in some sort of educational setting to help her keep up. I'm looking into some pre school co-ops that allow the parents to help teach. If i can find one that will take a child with special needs and allow us to come part time, i think i'd much rather have her around typically developing kids who will serve as more encouragement for her than she's getting in school now. We'll see...
Peace to all!
Jaye, RJ, and Sharon I.

Sorry it's been awhile! I'm in a show right now and have been rehearsing and performing every night...very little time for much else!
Sharon is doing well. She has had a lot of new stuff going on. The hip brace is going fairly well. We aren't able to keep it on her as many hours as we would like because she gets very uncomfortable. I wind up taking it off part way through the night so that all of us can get at least a couple of hours of sleep. She really is a trooper though...
She also had her first Botox injections two weeks ago. I am sold on it!I don't think it works very everyone with CP, but it really is doing great things for Sharon. If only there could be a way for the effects to be permanent! They will only last about 2 months. Her right arm is so loose and she is able to do so much more with it. It's also affecting her gait in a positive way since the right side of her body is less tense.
Today the PT cut down her leg braces which is very exciting. We'll do a trial run to see how she does with less support, but i'm hopeful that she'll be able to manage with them the way they are. It just means that she will get stronger and have to develop more muscles for stability rather than depending on the braces. It is also much less obvious that she has braces on now, which doesn't matter now but will as she gets older! And heck, it is much easier to put her in cute outfits when i don't have to try to work around the braces!
Thank you all for your continued prayers...
pictures will come soon. I think i left my camera at the theatre...
Peace
Jaye