Ride 'em Cowgirl!

Today Sharon took her first solo ride on Flare (our horse). She's always ridden with me holding on to her from behind but is definitely old enough and strong enough to be on her own up there so we started it today. RJ and I walked on each side, keeping her steady, and Whitney (with little Jack in the baby bjorn) led Flare. Sharon took the reins, said go, started feeling the movement (without me behind her to steady her) and immediately said "Wheeeee!!!" She was BEAMING. She knew she was a big girl and was so proud of herself! She really enjoyed it. The only thing missing is a picture...but we only had so many pairs of hands and they were all busy!!! Flare was wonderful as usual...

And in other news, we unfortunately DID get results from the brief EEG they did on Wednesday and Sharon actually had a seizure during it. She has already started medication and we're on a new roller coaster. We'll certainly keep you posted. We honestly don't have any more information than that to share with you. We meet with the neuro again in a couple of weeks and will get SOME answers then. All she could tell us was that Sharon needed to get on meds immediately in hopes of getting the seizures under control.

We'll keep you updated here as we go through this.
Thanks

So, i just had to brag about how well Sharon did with the first EEG today. it was a "sleep deprived" one, which meant we had to put her to bed 2 hours late and wake her up 2 hours early. We thought she would be a cranky mess when we woke her this morning, but she was really good. The idea behind the sleep deprivation was so that she would fall asleep at the hospital. HA! RJ and I had a good laugh about that. Our hope was that she would just be calm enough for them to get at least somewhat of a reading. They had told me that if she wasn't calm for them to put the leads on her head, then they would sedate her. Well, RJ wasn't going to let that happen so we certainly had planned to just leave and not get the EEG done but at least say we tried. Well, our little miss was just full of surprises. She was so good and pleasant and sat very still while 27 leads were glued to her head and then covered in tape (this took longer than a half hour to do). Then we were told to have her relax and nap (HA! I say again). Well, she did just lay with me and blew us away by actually falling asleep (after the 30 minute test was done, so they let it run an hour to take advantage of her sleeping). Waking her wasn't fun, but she's such a good girl and completely surprised RJ and I with the whole process!
Again, it is highly doubtful that there will be any results from this test, so a longer one will more than likely be needed. We just had to toot her horn!
And as an update, Great Gram went back to her assisted living home today so that is very nice for her!

WHEW!

Sorry it has been so long! It's been quite a week!
There are lots of pictures and lot of updates.
First, last Wednesday we went to Lazy 5 Ranch, which is a totally incredible spread of land that you drive your car through and feed animals. It's very laid-back and so much fun. There are zebras, giraffes, buffalo, pigs, emus, all kids of steer and deer..etc etc. As you can see, these animals aren't shy and try to get in the car with you! The only ones fenced in are the giraffes, so it's truly amazing! Sharon loved it except for the ostriches and emus...they were a bit too much for all of us!

Then we prepared for a fun weekend visit with Grandpa Baer...
But in the meantime, Great Gram (my Gram) wound up in the hospital with pneumonia. Since she is 96 (yes, 96) this is usually a pretty grave matter. So, John, Carolyn and Jen Pierce both came immediately with their families. Within a day of being admitted Gram was in pretty rare form and we were having a ball! So much for the solemn visit that we all thought it would be! We had so much fun with the cousins and the little kids. Jen and Lydia and Matt stayed at our house so Sharon and Lydia had lots of time to play and it was great! Grandpa Baer "rolled with the punches" during it all and got to know a lot of kids! We had a few dinner parties and lunches (Jen cooked a wonderful meal for all of us down here! You would have thought we had never eaten before the way we devoured it!!!). It really was a wonderful visit and it was really great for Gram to have the visitors. She's in the hospital for at least another day or so, so it was nice to have people to help keep her company! I'll keep you posted on how she is doing.

RJ and I will take Sharon tomorrow to her neurologist for an EEG. Children with CP have a 50% chance of developing seizures, and CP patients with Sharon's specific diagnosis have a 75% chance. Usually they develop between the ages of 3-5 so we're in the very scary time frame. The nuerologist agrees with me that some of Sharon's sleep issues could be seizure related so here we go. This is something i've researched and been "prepared" for, but in no way are we ready for it. We have held out hope that Sharon would be in the 25% who don't develop seizures, but so far what we are hearing isn't supporting that. Many of you will say "how come we didn't know about this"?? Because we're still very much coming to terms with this possibility and what it means for Sharon and we really aren't up for talking about it at this point. We also don't know anything to tell you more that what i have just written, so please just bear with us as we go through the next 2-3 weeks of testing (tomorrow's test is pretty much gauranteed to be inconclusive because it is a very short EEG. More than likely we will follow this one with a much longer one that will give more results). please just keep her in your prayers (a miracle sure would be nice for this kid!) and we will let you know when we have any more information and are able to share it!
In the meantime, enjoy the great photos!!!

a girl and her pets

So, i decided to post about Sharon and her furry friends since I realized that they are her playmates, therapy helpers, and just all around friends each and every day without fail.
NOTE: every one of these pictures was taken yesterday, just to show how much time she does spend with these friends each day!!
To start, the first thing she wants in the morning (after she wants to see if Daddy is home or at work) is to sit with Nobu on the couch. He is waiting outside the door to come in and see her. They chill out together until it's time to get dressed and start the day. Once she's dressed we feed the cats both inside and out and she usually wants to say hello to "dog" Dina who comes in from a game (or 100) of fetch. Both are thrilled!
Those are her two "inside" friends.
At whatever point in the day we have a chance to play outside, we are instantly greeted by the squeaks of Kuma "outside cat". I often wonder if he just lays in wait for us to step foot outside because it's eery how we hear that squeak immediately and no matter what door we use to go outside! This cat didn't really pay attention to Sharon until this year. Now that she is up and around and LOVES to play outside, he is her constant companion in the yard. He follows her EVERYwhere she goes and i know that he has saved her from some falls by being right next to her (always on the left side!) so she can grab onto him if she loses balance. (of course, he has also gotten underfoot once or twice and she has had to call for help so that she doesn't trip over him!)
And then there is "outside dog" Inu who is as gentle and playful with Sharon as possible. While Dina can have moments of wildness, Inu is nothing but gentle with Sharon.
And of course, we have the horses. Sharon goes with me each day (Dina joins us most days for the car ride and running around the pasture) to feed and water them. You can see she helps by carrying feed buckets (she takes this job very seriously!).. (and i have to say how difficult it was to get a shot with her and the horses since I was alone at the barn with her and couldn't let her get too close to them without some sort of barrier! and she thought it was funny that i was trying and kept running away!).

naughty girl

So, here's a post i'm thrilled to give...my daughter was naughty today and i just couldn't be mad. It was a moment where her new language and comprehension skills showed....
I was in the back room getting dressed and she was playing in the rest of the house. It got very quiet and i went out to investigate. She was sitting on the floor holding a ballpoint pen (and looking guilty). I said "what did you do?" (a very vague, open ended question for her). She held up the pen and said "Couch". I looked and sure enough, there was pen all over three of the couch cushions!
For her to be able to process my vague question, and come up with an answer completely separate from that question was wonderful! (and i got the pen cleaned off so all's well that ends well!) It was very cute!

And in other wonderful news, Nina got a great offer on her house yesterday! There wasn't a single showing while Sharon and I were staying there and I was so worried about it, hoping that it would sell for their sake! Nina kept saying "there's a reason it hasn't sold yet, so that you could use it". (it was on the market a long time!)...well, she sure was blessed for that faith (and generousity to us!)...6 days after we moved out they got the offer! Hooray! (anyone have goosebumps???)
I just had to share that news since we wouldn't have done the HBOT treatment if that housing piece hadn't fallen into place the way it did!!!
And i finally got some pix up: here's one of her playing piano with two hands (with no prompting at all), and of her in Panther's gear :)

We're HOME!!!

Yay! We're home! Sharon had her last treatment yesterday and we are now home. It was hard to leave the folks at the center, they truly had become family to Sharon and I. Little Jenna came just to play "one more time with Sharon". We'll get a chance to see them now and again but Sharon will definitely miss having a playmate every day!
She spent today in a flurry of finding all of her toys (i think she laid hands on every thing she owns at some point during the day!) and of loving all over her animals. She and the dogs exchanged so many kisses that it got a little gross :), and we spent the day calling for Nobu (her fat cat who has been by her side since her therapies started at 5 weeks of age)...our other cat was around and very loving, but we both really wanted to see Nobu! I was getting a little worried but he showed up at dinner time and he and Sharon sat on the couch and had a love fest. We got to visit with the horses as well. It was a bit hot, but they were happy to see us and Sharon was thrilled to pat Flare.
In the meantime, i have misplaced the camera so still can't post pictures...i'll find it once we're more settled!
Since i had thought we'd still be in Charlotte for the rest of this month, it's very exciting: we have a couple of weeks of nothing planned! I am going to get her in with her speech therapist a couple of times over the next two weeks just to take advantage of the gains we are seeing from the treatment and to make sure we don't miss any opportunities to help Sharon get more words out. OTher than that, we plan to just have FUN and enjoy the rest of the summer!! Such a bonus!!!
A lot of folks are asking what we are seeing as a result of the treatments. I'll try to lay it out in a nutshell. But i have to say, this isn't some "miracle cure" and most people who don't see Sharon on a regular basis probably wouldn't notice the changes ( i don't want to downplay what she has accomplished and the results we are seeing because they are great, but for people who don't understand this type of brain injury, i just have to interject that Sharon has a long road ahead of her, particularly with speech. The things i list here are wonderful, but they are sporadic and not consistent. It is going to take many more years of therapy and hard work for her to really be able to speak and communicate).

Here is what we're seeing:

She can walk without her AFO's (again, this is not good for her feet so she'll continue to wear them)
Her balance is much better, she stands with her legs closer together
She can just about run
She can get down off of couches, beds, chairs by herself
She is using her right arm/hand FAR more frequently and without prompting at all (and is even choosing to use the right hand even when her left hand is available!)
She is speaking more in general
She is enunciating ends of words
She has used sentences "Mom, get it", "mom get up" "Back again please"
She is initiating words that she has never used before, without any prompting
She SO PROUD OF HERSELF for all of these things! It's so great to see how pleased she is. She is absolutely aware of her gains and is more thrilled than any of us.