Now which way was I supposed to turn????



Sharon takes her first spin in her cousins' old play car...she loved it!!! 

the grandkids with a 94 year old Gram 

with Pop Pop in the heat...

Great Gram's 94th birthday party!!!!












the great grandkids and Gram on her 94th birthday!! 

what a road...

Hello all!
I was looking back in the archives of this blog and can't beleive what a 16 months this has been. I look back to those early days, and we really had no idea what was in store (which i think was a good thing!).
Sharon is doing well. She is such a riot. She and RJ have created a "fun" screaming game where they take turns screaming as high and loud as they can...
We're able to get her back in the stander and she is getting a lot stronger. She actually has little quadracep muscles that we can feel when she's working :) We're working on standing against furniture too. It's a lot of fun to be in this stage...it was getting frustrating to be doing the same things over and over so it's nice to be doing something that is showing results!
Today the OT did her annual test and we'll get the results next week. i'm not expecting any surprises. She's test at her age for some skills, and lower for others, we know that.
The OT said "I'm not even going to do the cognitive and social pieces because i'm not concerned about those areas at all" :) Yay! I asked her to go ahead and do the cognitive just so i can see what these 16 month-olds are supposed to be doing...she aced it and is at 18 months for most skills. Yay and double yay!!
In case any of you are interested, we've been watching "Last Comic STanding" because Josh Blue (one of the final four) has CP and the United Cerebral Palsy organization is backing him and trying to get support for him. He does a very good job being funny, and also making people aware of his disability and trying to make people more comfortable around disabilities. I am very glad that he is out there and making CP something people are talking about and recognizing...and realizing that it doesn't make a person unable to have personality, feelings, etc...So, check him out!
I should have sent this out earlier, because he just performed a minute ago and i was laughing so hard! I hope some of you caught it...(and also, he has the same diagnosis as Sharon, so you can see what her future holds by looking at the way he walks/talks/ etc.)
Thank you all for continuing to support us and Sharon...keep those prayers coming! We know they have worked!
Peace
Jaye, RJ, and Sharon I.

A fun summer day...Sharon's animals entertain her...See Dina grooming the cat? all of our cats have loved her to do that... (note the horseshoe pit...good fun for visitors!) 

Sharon with her cousin Zac (who's almost 14!!!!)...note the pick toes :) 

Sharon with Dina the dog (those of you who have met Dina, can see what a miraculous shot this is...she is far from calm or subdued! But really knows how to "rein it in" with Sharon) 

Here we are again. Sharon was sick all of last week so that made for a fun time. Poor girl. Actually, i can definitely count that blessing: that was the first time she has been sick! I had never even opened the thermometer and had to figure out how to use it! We'll take what ever breaks we can get...!
We thought it was just teething (3 at once), but it wound up being a viral infection on top of that so she was an unhappy baby. Grandpa Baer happened to come for a visit in the midst of this, so he didn't get to see Sharon Isabella at her best...he did make her smile through the pain though, so that was nice! Sharon and I had to miss a camping/climbing trip and we had planned, but at least RJ and Dina (the dog) got to go and Sharon and I had fun "living" with the Messicks for the weekend.

She was doing very well and enjoying her stander and AFOs thoroughly, but then we noticed that the skin was rubbing off the bottom of her toes on her right foot so we had to take a break to let that heal. We're still brainstorming with PT etc to figure out ways to prevent that from happening (it's because of the way she is standing and curling her toes, which needs to stop, but hopefully not because of pain!). We're ready to start easing her back into the AFOs and are hoping that some "tweaking" will be effective...
Today we went to an orthopedist for the first time. He will track Sharon over time to make sure we aren't missing something major (like bone growth etc.). He didn't do much with her today, just checked her out. He did comment that she seems to have a more involved cerebral palsy than he was expecting from her chart (which explains why she isn't moving. Most children with her kind of CP ("hemeplegia") are able to move around and do more at this point.) While we certainly don't want to hear those kinds of things, it was good to have verification from a medical perspective for her lack of progress. The OT and PT and I have been trying to figure it out for a couple of months now...
anyway, this just means it will take longer for Sharon to get anywhere (literally and figuratively). Which means, i guess we should be glad she's a tiny girl and easy to carry!
The orthopedist did recommend botox for Sharon (yes, there are plenty of jokes there). It's been a very successful treatment for kids with CP. We wouldn't consider it for a few months, but we've already researched it and it looks like a good option...
That's about it for now. We've started back with swimming lessons so that will be fun! She also has a sand box that she loves (especially when her dogs and cats join her).
love and bless
jaye, RJ, and Sharon I.