Wednesday, June 4, 2008

Therasuits, spidercage and HBOT, oh my!

Well, we're on day 3 out here. It's been such a whirlwind! We drove out on Sunday afternoon and arrived at the Ronald McDonald House around 5:00pm. We walked in and the sweet smell of dinner was wafting through the house. We threw our stuff in our room, hooked up Amelia's feeding and strolled down to the kitchen to partake of an incredible meal cooked by a wonderful Lebanese family. We didn't know what to expect of these "donated" meals brought in by volunteers each nite, but let me tell good and such a nice communal atmoshphere. Everyone down at 6pm or so. You make your plate, sit down at one of the 25 or so kitchen tables and enjoy. You just have to take your dirty plates to one of the 5 kitchen stations for a rinse and put into the dishwasher.

Then on Monday, 5am, we were off and running for our first dive in the Hyperbaric Chamber. I was really nervous because I had no idea what to expect and I've never been in an enclosed space like that, locked in,for over an hour. Well, we got into our scrubs, laid down to have our vitals checked (always before and after the dives they have to take your blood pressure, pulse and check your ears for redness) and then off we went. Very scary the first time. When that door locked behind me...OMG!!! But, I just kept repeating that this is for Amelia and whatever good it will do -- I have to see it thru with her and that's that! She did really well...oh and me too! Although,I had a moment of freak out when the guy who runs the sessions, Harman, was out of my eyeline for awhile and I thought maybe he had walked out of the room (there is always someone sitting next to the chamber to make sure everything is okay) -- turns out he was in the back of the room folding laundry (whew!!!). Our dive #5, this AM was really good. Our bodies are getting used to the pressure changes (not as much ear popping for me and Amelia has tubes, so she doesn't get that discomfort) and the 75 minutes sessions seem quicker than the first few times. I made a DVD of her favorite Backyardigans, so she seems quite happy lying there, munching her fingers and watching her buddies.

After our 6:30am dives we race over to Therapies 4 Kids (8:30am) for her 4 hour intensive PT/OT sessions. Wow! What a tremedous amount of work. The first two hours are spent doing stretching and strengthening excercises. She lies on a mat,with her head on a pillow, sandbags on what ever limbs aren't being worked to keep them stabalized, then Amy, her incredible therapist, has little 5lb. sandbags attached to pullies and works each arm and leg. Then they do situps, reaching, grabbing, etc. Then she has a 15 minute break. After that she's put into the therasuit for the last half of the session. She does standing, with bungee cords to help support her, squatting, crawling and sitting. It's very exciting! Unfortunately, she has fallen asleep each day for about 10-15 minutes...each time around 11am, so we decided today to try and work until she falls asleep, then make that her break -- so she can get a little power nap. We'll see how that works. But she's responding really well and Amy feels she has really great potential and said she has really good muscle memory. YAY!

So after our exhausting sessions at Therapies 4 Kids, we race back over to the Hyperbaric place for our 2nd dive of the day. Now, you would think that she would go right to sleep, right? Wrong. The oxygen is very invigorating and keeps you very alert, it's not until afterwards, when we get out of the chamber, that she falls asleep. We've had to wake her up after about 45 minutes though, otherwise she'll sleep for hours and then not go down at night...not that she has been - party animal that she is!

After the afternoon HBOT we head back to the Ronald McDonald House, she's been asleep then and we wake her up around 3:45pm to take her around the house to play. So many places to go and thing to do there. And all the folks staying there are so nice. It's been great because we've had our angel of a nurse, Lia for the past 2 days. Today I'm actually alone, Lia works at a hospital 2 days a week and Nestor had to go into NYC for a couple auditions today, although he was with me for the 1st dive of the day and brought us to Therapies 4 Kids before taking off -- so for the afternoon routine I'll be flying solo. Shouldn't be too big a deal because it's not as much of a race in the afternoon.

So that's pretty much it. I'm sooo tired. It's amazing and exhausting! Very emotional and very exciting. What else can I say? I'll post pics and maybe video soon. Oh, weird not being able to use any lotions, hair products, make-up, deoderant, etc. No diaper cream on Amelia or even chapstick -- all because of the HBOT. You can't have any oils or alcohol on you because you are in an atmosphere of 100% oxygen and those things are flammable. I told Nestor that I'm going to be looking like the people in the movie "Batman" (the first one with Jack Nicholson -- not the more recent version) when the Joker puts poison into all the beauty care products and the newscasters come onto the TV to report, without any products on and their faces are all white and pastey, with frizzy hair and pimples -- that's me! Really pretty!)


Love, said...

You are just AMAZING, my wonderful daughter! I am sooooo excited, too.
It sounds incredible and we pray it does great things for our Amelia. We will be there to see it all for our selves.

Sophia said...

YAY! I'm so glad to read an update and hear that everything is going well. I've been thinking of you guys every day from 1:30 - 2:30 (ok, I'll admit it, I think of you guys at other times, too). Can't wait for the pics!

Carrie said...

Wow I can't believe you guys are really there. Seems like just yesterday you were telling me about this place and now its all happening. You are so brave! I hope all goes well the rest of your stay and that we see some amazing things happen!!!

Adam and Jamie said...

Sounds amazing, Deb. What a wonderful opportunity! When you say "dive," what do you mean? Are you sitting in a room or are you actually in some encasement that goes under water. Sorry--probably a stupid question...

(This is your cousin Jamie)