Wednesday, April 20, 2011

Therapy and Fundraisers

Hailey's in the middle of her first week of therapy. So far she has only done occupational therapy. Next week starts 2 days a week of physical therapy as well (this week she only has it once while they rearranged their schedule to get Hailey back to back appointments on Tuesdays). I've been sitting in the waiting room while Hailey goes back with the therapists. I think they prefer it this way. The kids are more apt to participate. My mother in law bought me a book to read while there. I took it out the first day, but just can't get into it. I'm not a reader. I'll pull it out another time and try again...someday.

Therapy has been working with Hailey on her fingers. Fine motor type stuff. The first day they made a necklace. Hailey had to get the beads out of a bin filled with beans and then string it through her string. It's a really cute necklace actually. It says her name with letter beads. It has a pattern so I am sure the therapist told her something like "Find a green bead". Otherwise it would be a mix of everything and letters that don't even belong in her name. They also worked with clothespins. Opening and closing them. This was towards the end and the therapist said after a bit Hailey started saying her hands were tired/hurt. She explained that because of Hailey's syndrome she asked her to do just one more and that was the end of that. Pushing her too much can actually cause her to regress so it's a fine line. She said until she feels Hailey is lying to use it to get out of doing something, Hailey basically runs the show.

Yesterday they worked with stickers. Made a birthday card for Hailey (her 4th birthday was on Monday!) and Hailey got to decorate it with stickers. They also worked with lacing cards. Both of these the therapist told me Hailey had a little trouble with. The stickers she had a hard time peeling off the paper, although after a few, she did get better. Hailey brought out a binder that we bring back and forth now that carries her "homework". Last nights homework was to put 2 sticker sheets on a piece of paper and also had two lace cards for her to do. Dave did these with her while I was out which was nice. It gives him the chance to watch what she can do and interact with her. He said she did great with it.

We have more occupational therapy today and then an early morning physical therapy appointment tomorrow. Then we're done with our first week...Hooray! The progress Hailey has made has been amazing. When I really stop and think about was only 1 month ago she started falling and walking funny. About 3 weeks ago she came off of a breathing machine. And today she is walking on her own (wobbly and small steps).

The first Insurance Explanation of Benefits came in the other day along with our first hospital bill from the hospital we went to first before they flew her to the bigger University Medical Center. For those of you who were wondering, without insurance, a helicopter ride from one hospital to another will cost you about $30,000. My jaw dropped at this figure. I knew expensive, but that's the price of a new car, for a 20 minute helicopter ride. We didn't even get a lousy Tshirt...however, there were great paramedic nurses in the back taking care of my daughter to make sure she arrived at the next hospital alive. That's worth it.

Which brings me to my next topic. The amount of support we have been shown has been truly AMAZING! My facebook boutique friends did an auction of all sorts of handmade products to raise money to support us while we were in the hospital. It's not cheap to eat in a hospital and of course neither of us wanted to leave Hailey's side to get something outside of the hospital. It also helped with gas when either Dave or I went home for a day to gather more things and visit with our older sons who we missed while we stayed with Hailey. It helped out sooo much! This auction was arranged by Jessica, owner and designer of One Little Bow. You can click that link to go straight to her facebook page. That auction has since ended however we've got more amazing people in our lives!

Desiree Rose is hosting a fundraiser with Pampered Chef. Proceeds from anything you purchase is being sent to us to help out with the medical bills and rehab bills that are starting to come in.

Here is how you can help!

1- visit

2- Click shop online Enter Hailey Clark as the Host

3- Shop generously to benefit Hailey!!

ALL PROCEEDS go to the Clark's! If you are interested in hosting your own show to help the Clark's and earn Free product a portion of those proceeds will go back to the Clark's too!!

Thanks so much Desiree!

Another great friend Kathy Bandy has a Scentsy benefit going on. Scentsy is a plug in smell good system for your house. They also have goodies you can use in your car or anywhere else you can think of! I own a bunch of this and LOVE it!

You can go to: and on the left side click on the "Benefit for Hailey" party. She is donating her commission to us.

All this support has been so amazing to us. We didn't realize how many people we had in our lives that support us to the extent everyone has! It's been eye opening and has made me become a better person as well. I vow to pay forward all this support everytime I can!

I will update again soon! Thanks for everyone's prayers!! It works! I'm a believer now!

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