The Countdown is on!

So, we're truly almost through! 5 sessions left to do! After expecting to be here for more than 7 weeks, this 4 week stint is great!!!! I am so glad we decided to do two sessions a day. She really doesn't mind it and i can now truly look forward to going home (I haven't let myself get excited about it until now!). Sadly, she has begun calling the treatment center "home" (I've been careful not to use that word at all, calling Nina's place "The House", so as not to confuse Sharon). But i think since we do seem to live at the center, she has decided it's home. It's okay, she'll remember her real home and be so excited! I just can't wait to see her with her animals and toys! It's going to be very nice to watch those first few days!

In the meantime, my parents came down again for a visit on Monday (after watching the Panther practice) and then my mom came back down yesterday and brought Anna with her. Mom stayed the night and went home today but Anna is here for the long haul! She's staying until Saturday. It's SO SO nice to have her here! I know it's got to be boring for her while Sharon and I are diving, but she sure doesn't complain and is such a huge help! I think she's warming up to the kids over there so that is good! Sharon of course is in heaven to have her here! Sharon has become very good friends with the little 3 year old daughter of the folks who run the center (Jenna). It's been so nice to see her have a friend. Kids her age usually overwhelm her. She loves to be around them, but usually just watches from the sidelines because they are so loud and active and she gets knocked over alot. But since Jenna has a sister with special needs, she just "gets it". She is very careful with Sharon to make sure she doesn't knock her over, but at the same time is just a fun 3 year old who gets goofy and silly and drags Sharon along for the ride. She talks up a storm but also listens when Sharon chatters and at least pretends to understand what she's saying! I really wish we could be around her more because it's so good for Sharon to have a friend she isn't scared of! (her other friend who "gets her" and is so good with her is Molly who lives in PA so i need to find some of these types around us!!!)
Well, thanks for keeping up with us! I'll get pix and more info up soon. Just too tired now!

Still here!

So now we have completed somewhere around 25 of the 40 sessions! yay!
This week Sharon has been excited every time we park at the treatment center and can't wait to get there! She doesn't like to leave when we're done. it has made for a much nicer week knowing that she's enjoying herself so much.
Anna came and spent the night one night this week and my parents came down with Rose for the day so we have some good diversions. (the pix are of a "love fest" on the couch with Pop Pop and Namom eating water ice with the kids) RJ is here for the weekend (and i got to go see "Dark Knight" last night! what a treat!)

We are now diving at the deepest level and will stay there until we're finished the 40th session. We can't really tell a difference in the dives other than our ears popping just a little more.
In order to get our two sessions in per day we're having to do one session each day in the adult chamber. It's set up for one adult in a chair like a dentist chair (the outside of the chamber looks just like the other one). So those dives are in rather tight quarters but luckily Sharon is a cuddler and doesn't mind! We do certainly prefer the other chamber where there is room to stretch out!

Of course everyone has the question: is it working? I'll say, i had no expectations coming into this. And boy have i been pleasantly surprised! We can see a lot of differences and improvements. I don't know that people who aren't with Sharon every day would notice what we are noticing, but we sure are. It's nice having RJ come on weekends and confirm what i've been seeing during the week. Her language has definitely improved. it's still going to take lots of work and therapy for her to be able to really talk, but her ability to produce words is improving each day. She also blew me away the other day: Keep in mind, this is a girl who understands everything that is said around her and i KNOW that she has so many thoughts in her head, but because of the strokes she is unable to get those thoughts into words. We have been working for over a year on just drilling words and repetition. So, the other day she was making a mess in the car with her cup and i said "i need that, no no Sharon" and was trying to reach for it. She said adamantly "NO! Me!!!" (this was huge! She came up with those words on her own, not just repeating what i had said, and also was able to use possessive words! yay!)
She also seems to have more feeling in her right arm, complaining of pain and using it much more.
I have heard that we will continue to see gains for months after the treatment is over and that often the biggest gains come in the weeks after the 40th session so we'll see! We definitely feel that it has been worth it and was the right decision (whew!)

daddy's turn

So RJ has been here 2 days and done the last 4 treatments. The top shot is he and Sharon before they shut the chamber door. It's been a nice break for me and i've had a chance to visit with the other parents while RJ is in the chamber with Sharon. It's always good for me to be around parents of special-needs children to share information, ideas, encouragment with folks who really "get it."
The family that runs the treatment center has 4 girls. Two of them have befriended Sharon and it is making her day to be able to play with them when she gets out of the chamber. There is a 10 year old and 3 year old and they are great with her!
They started diving us deeper on Thursday. We hopefully have one more level to hit sometime this coming week and then they will keep us there until the end of the 40 sessions. Sharon now knows what is about to happen when we get to the parking lot so she gets ancy and unhappy, but is so good and able to settle down once she's in the chamber. Twice a day is a lot to ask of a 3 year old and she's being such a trooper. I wish she could understand that it will all be over sooner if we do it this way!
Thanks for keeping up with us!! It really helps to read all the comments!

one week down!

We were so fortunate to have visitors yesterday and today. Sharon and I were about going stir crazy! My parents came down yesterday afternoon and then my dad left and my mom spent the night. Then Jax and the girls came down and spent the day and took my mom back with them this evening. Sharon was in heaven. So nice to see her having some fun!
We've started doubling up the sessions (we'll do two a day instead of just one). I'll do this as often as we are able in order to speed up our return home. I was having some pain when breathing so they've had to slow down our dives a little (meaning not go as deep and take longer to get us there). I hope it clears up soon because i want Sharon to be able to get as deep as possible since the deeper we go the better the outcomes could be...
She doesn't seem to be having any trouble at all other than some tiredness (but i think that's also from having sessions at 7:30 am each day...yawn!). I'm still very tired but feeling much less foggy and groggy than i did when we started this. one of the workers at the center said that each session works our lungs/bodies as much as running a marathon! no wonder it's so exhausting! I think i've made it sound like the sessions are tiring, and they really aren't. It's very relaxing and even boring in the chamber. The tiredness is just the affects it has on the body.

Nina has stepped in and saved the day again by getting us cards to get into her neighborhood pools. There is an awesome pool with waterslides and a great kiddie pool so we've been going there each day between sessions and Sharon is loving that.
She's been using her right arm and hand a lot more in the past week and it's very apparent when she's swimming. Very cool!
And tonight as she was getting ready to sleep she said clearly "Love You"...a huge first!
Thanks for keeping up with this and thanks for watching the video...i really want everyone to see how much Sharon has worked and continues to work...she deserves tons of credit!

video

so, i finally remembered to add this shot. It's Sharon and I before our second treatment. We are in front of the chamber. Pretty cool eh? (dressing for the chamber is interesting...we have to wear only 100% cotton from head to toe, no makeup or lotions, and no jewelry. I have noticed that most parents seem to go into the chamber in their PJ's since 100% cotton clothing is impossible to find, so i will probably start doing the same!)
In the meantime, all is going well. RJ had his first treatment with Sharon today and fell asleep during it (just to show how relaxing it is!)...I'm starting to feel a little less groggy today so i'm hoping that i'm through the worst of my "cleansing" and will now start to feel better! Sharon is certainly no worse for the wear and continues to handle it all very well. We're definitely noticing some amazing things with her that we weren't expecting, but i think it's too soon to really share details yet...part of me wants to wait and be sure it's not just a "fluke"!
As many of you know, we had Sharon's Independence Party last weekend. During it we showed a video that Jason made. I wanted to post it here so that those who didn't get a chance to come could see it...
For those of you who are part of Sharon's treatment team (Whitney??), please e-mail me...i have email access but no addresses for some reason and i want to make sure to get this video to other therapists that you may have addresses for :)
Thanks! and Enjoy!! I'm fairly certain you will need to cut and paste this link into your browser...
http://www.actcasual.com/sharonmov/

HBOT

Well, here we are. Charlotte is gorgeous (total suburbia, but fun for a temporary home...it's fun to have sidewalks, neighbors, etc.! I've talked to more people on the street in two days that i have at home in a year!).
We are staying in a beautiful condo per the graciousness and generousity of Jacqueline's childhood friend Nina (those who know me from Malvern would know Nina). She just happens to have a "spare" house (on the market). It's only 13 miles from the treatment center so it's wonderful for us and we are so blessed!

So, we've had two sessions so far. it's really incredible! I have some pix but will have to wait for RJ's skill to figure out how to post them since i only know how to work my home computer :) The chamber looks like an MRI machine pretty much. I actually got a little nervous before we got in the first time when i saw how small the opening was. But Sharon was excited to watch a movie so in we went. The first and last 15 minutes (out of the total 90 minutes) is the "worst" of it. It's when the chamber is being pressurized so our ears pop. Sharon complained a little the first time but refused to drink the water i had for her so she just got through it her own way. I swallowed repeatedly and was fine. once that part is over, the 60 minutes of the actual "dive" is really nice. You can actually feel the difference immediately in the air. The word that has come to mind both times for me is "clear". It's just clean and clear and fresh. Sharon and I just snuggle up on pillows and watch movies. These first two dives were in the evening so she was in a snuggly mood. Other times she will probably want to be more active, but it's been a good way to start for us. After our first dive we were both wiped out. She cried a little at night, i'm guessing her ears may have been bothering her. Today we were both very groggy. I continue to feel like i am in a total fog. I'm tired and just feel "off". I asked about it tonight at the center and they said that is totally normal as the toxins are coming to the surface and leaving my body. I'll probably have a couple more sessions like that and then should start to feel really good, full of energy. Sharon already seems to feel great after tonight's session. She did the dive with no complaints at all and came out of it chipper and cheerful (so nice to see that she had very few toxins to get rid of!)
The folks at the center have been very impressed with how well Sharon has done!! They said "we're not used to having kids smile at us through the chamber windows!". The center is run by a family (a woman who has a 6 year old with CP, her sister, her adult daughter, her husband, and her father!) It's really a neat setting, very professional but also warm and welcoming. Sharon is going to become good friends with them all i'm sure!!
I will certainly keep you all posted and will get the pictures up as soon as i can. Thanks for checking in on us!

What a girl....

I had to add in one more picture of Rose's newest creation: corn on the cob cupcakes!






Well what a fun couple of weeks we have had! Sharon spent two weeks at a Bug Camp for speech and had a blast. It was great because i was able to observe the entire time she was there. One of her friends was at the camp with her so that was nice for both of them. Other than that, we haven't had any therapy at all this summer! Yay! We are loving the freedom of a therapy-free life!!! It's short lived so we do appreciate it.

And then this past weekend we celebrated Sharon's Independance with a big party. i had read about another parent of a child with CP who threw this kind of party and loved the idea. Sharon had to learn how to walk TWICE in the past year and definitely deserved a party! She really enjoyed herself. She did get her first bee sting at the party which threw quite a damper on her day, and then took a really tough fall on the concrete, but overall she really had fun! My good friend Kerry stayed at our house for the weekend with her hubby and their 6 month old Eli and Sharon was in heaven "taking care" of him. She woke up this morning and was disapointed that he wasn't there to play with...
(Aunt Marj, i had to stick a picture in here of your Dan's firework escapade. He called it "the encore to 2003"...we kept it pretty minimal because of fire risk, but i don't think i've laughed so hard in a long time! My dad and Martin were his assistants and held the string of fireworks...until the string burned through and it all went haywire...)
Thanks to all of you who made the HUGE effort to travel here for the party. We know that it took sacrifice and time (and lots of gas money!!!) and we really really appreciate your support and love for our girl! (Aunt Kim gets the prize for farthest distance, coming all the way from California!!) We got some great group shots with at least most of the guests, but never one that had everyone in it (there were between 50-60 people who came!). We just can't thank you all enough...

And finally, please keep Sharon in your thoughts and prayers over the next few weeks. She and I are moving to Charlotte for some intensive hyperbaric oxygen treatment. It's the type of treatment that deep sea divers need if they've got "the bends" (that's the simplest way to explain it!). Sharon and I will sit in a chamber for 90 minutes each day under high pressure and 100% oxygen. It's been used in the past as the "iron lung" and for people with significant skin burns. In recent years it's been used on children with brain injury and has proven to be effective in bringing oxygen to damaged parts of the brain. The risks are extremely minimal and so we feel like we need to at least try it out while she's still young. We're hoping that she tolerates it well and our greatest wish is that it helps with her speech and language. I am not sure what kind of access i will have to computer etc, so i will certainly be posting updates if i am able but if you don't hear from us, that is why. We will be there for 40 sessions, it could take close to 8 weeks.