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 it....it 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 www.pamperedchef.biz/drose

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: https://kathybandyscents.scentsy.us/Home 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!

A post from Jen!

OMGosh! I am actually sitting at a computer viewing this blog instead of on my cell phone and it looks sooo good. I can't thank my sister enough for starting this blog! A doctor in the beginning of our journey recommended doing a blog as a way to keep friends and family up to date with everything that was going on and it was the best idea! For the first couple of days, we spent every free minute texting, emailing, updating facebook, and making phone calls. Every conversation and post was a repetitive, emotional mess. I owe my sister Heather big time for making timely and accurate updates. She spent a lot of time doing this and it took time away from her own family time. Heather, THANK YOU! I feel like I could spend every minute of the next year thanking everyone and it wouldn't be enough. My own customers who never once bothered me about pending orders that are now almost 2 months old. The many emails and comments with words of encouragement, thoughts, prayers. You don't even begin to know how especially during some of the worst times at the hospital, sometimes just the smallest little comment would help. My husband's fire department who brought us dinner almost every single night, their support and gifts. GREAT neighbors who showed my Mother in Law support by bringing meals or taking our older boys out for the afternoon, or just stopping by to see how SHE was doing. My MOTHER IN LAW especially! I don't know what we would have done without her! She basically missed worked for the last month to take care of our boys and pets. Became a "mother" again for the last month...dealing with school work and behavior. I know it wasn't easy. She also has stayed with us this last week while we got accustomed to our new normal. My own family who came and visited with us at the hospital many days. A change of face to look at, a shoulder to cry on (many times), a conversation other than "medical" stuff, somebody who could be strong for us and allowed us time to not be, was so nice! There are so many of you who I haven't mentioned and I want you to know that my husband and I sincerely appreciate every thought, prayer, and donation. We are truly blessed with the people in our lives and I didn't even realize just how much! Now for what you probably came here for...an update on Hailey! This past week we had evaluations with the rehabilitation place Hailey will be going to. She continued to amaze everyone there with her quick progress! Occupational Therapy determined she would like to see Hailey 3 times a week. This is for Hailey's fine motor skills. The neurologist who oversaw Hailey's care in the hospital said he first thought Hailey's feet (walking, etc) would be the last thing to come fully back, but he now feels its going to be her hands. The therapist in fact said "The hospital sent a report of what Hailey could and couldn't do and I shouldn't have even spent time reading it because what they said she couldn't do then, she can already do 2 days later. I should have just asked you guys for a report this morning!" We also saw the physical therapist. She has determined she would like to see Hailey twice a week, one day of which will be spent in their pool. The water temperature is kept in the low 90s which is a therapeutic temperature she said. The other day will be spent either outdoors or in their "play room" working on things. It's always very interesting to watch them interact with Hailey. They would have her do things and Dave and I weren't even aware she could do them yet! For instance, she had Hailey walk down the stairs. Hailey held onto the railing with one hand and the therapists hand with the other. She had a little tykes slide Hailey wanted to go on and the therapist helped Hailey and informed us Hailey had pulled to a stand all on her own. It's like watching Hailey go through the milestones she accomplished as a baby all over again, only at a much faster pace. They are as exciting the second time around as the were the first! We now have a regular therapy schedule which starts next week. 4 days a week will be spent going to therapy sessions. We also had an appointment with Hailey's pediatrician. I can't even begin to tell you how happy I am with the practice we belong to. They quickly diagnosed Hailey with the Guillian Barre from the beginning. If she had been misdiagnosed, this blog could be about something I don't even want to think about! For something this rare, I am so impressed with how fast they picked up on it! The pediatrician is going to be seeing Hailey again in another month to keep up with her progress and refill her prescription for her nerve medication. Dave and I? We're hanging in there. I think about the events of our last month constantly. Flashbacks of the most horrible parts. I am hoping time will heal this wound and it will be a distant bad memory. Dave goes back to work this week full time. He was approved for Family Medical Leave Act so if he needs a day off to take Hailey to therapy or drs appointments if I can't, he can do so freely. He also plans to start back on his duty nights at the firehouse very soon as well. Things are getting back to "normal". A new normal. A different normal. A much happier normal than the last month. To close, I want to wish the BRAVEST, STRONGEST, little girl I know, Hailey, a Very Happy 4th Birthday! We're having a VERY small party for her tomorrow at our house. Her real birthday is Monday and we are over the moon that she is spending her birthday at home instead of in the hospital! Her immune system is dramatically weakened by the plasmapheresis treatement she endured so we have to watch how exposed she is right now, however, we had a big party reserved for her at Pump It Up...a big moon bounce filled place. We had plans on inviting all of her friends from school and the neighborhood and we plan on throwing this big shindig at some point this summer. Instead of a "Birthday" party it will be a "Hailey can jump and run again!" party! We can't wait to see everyone there! I plan on writing updates often to keep everyone updated! Keep checking back! And let me say once again.... THANK YOU FOR EVERYTHING!!!

April 12, 2011

Hailey and her family spent their first night back at home last night!  After passing her swallow study at the hospital on Monday and being allowed a "regular diet" again they discharged Hailey!

She spent the evening relaxing with her brothers watching TV!  First time they've been able to do that in a month!

After waking up this morning in their own home, in their own beds, and relaxing to their own coffee, Jen and Dave got busy scheduling Hailey's therapy.

Today Hailey had Occupational Therapy. The Therapist said she shouldn't have even read the notes the hospital sent because everything they said she couldn't do then, she's already doing now! Hailey is impressing everyone she comes across!

She'll also have Physical therapy.  They are looking at therapy 3-4 times a week at this point here.  Hailey is already scooting herself across the floor on her butt and crawling on her hands and knees to get places.  She still needs help going from floor to couch or vice versa and obviously can't walk or anything yet, but she's working those muscles so it will be no time at all till they start getting their strength back.

Can't wait to see the progess she makes as she makes it!

Hailey and Jen and Dave are on their way HOME!!!!!! Hailey has officially been released from the hospital!!!!!

Still lots of therapy and rehab in her future but she's going HOME!

April 8, 2011 10:48pm

Hailey was moved to the regular pediatric wing last night!!  In this wing of the hospital she has no monitors on her and nothing keeping her in the bed :)

Jen took Hailey to the play room today to get a few toys to bring back to the bed for her to play with. They brought back a farm toy and pretended to talk to each other with Jen being the cow and Hailey being the dog.

Therapy came by and worked some more with Hailey today. Therapy is custom making Hailey a pair of boots to stretch her achilles tendon and strengthen it.

More therapy tomorrow.

Until then I'll leave you with a picture of Miss Hailey getting ready to watch Dora :)

Ahh I just wanna squeeze her!!

April 7, 2011 12:37pm

Look at this beautiful girl!!!!

No more feeding tube!!  IV's are out!! She's even in her own PJ's!!

And look at that smile!


"Family meeting" today at 1:30pm (Eastern time) to discuss the next steps.  Let's hope Jen and Dave can take their little girl HOME!

April 6, 2011 11:09pm

Hailey is working really hard at therapy each day.  She's getting stronger and stronger.  She's being allowed to have a "soft food" diet now instead of a "pureed diet" and is allowed a thickened juice box which is like the consistancy of maple syrup.  She still has the feeding tube until she can take in more liquids. She's receiving pediasure to supplement her diet at night.

Jen and Dave have a meeting with her doctors tomorrow to discuss Hailey's rehab placement.  Jen and Dave are really pushing for outpatient rehab for Hailey after being discharged from the hospital.  The doctors are really pushing for inpatient rehab.  Having her do inpatient rehab is not an ideal situation for the family, so pray they can sway the doctors to see things their way tomorrow!

Hailey's immune system is pretty much gone and they've given her an infant roomate who we've overheard is there with the flu!  How the hospital can put someone with a compromised immune system with someone who is sick with the flu is insane!  Hopefully they can get Hailey either a private room or at least change her room mate to someone who isn't going to compromise Hailey's immune system more than it already is!

Lots of mail came to Hailey's room today and made her and her mom smile!  Love all the love and support everyone is sending them!  Such cute cards and gifts!  Thank you SO much to everyone.   I told Jen pretty soon the mailman is going to have to carry a bucket with him to deliver their mail :)