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 :)

April 5, 2011 6:15pm

Therapy came by today and decided to bust Hailey out of her hospital room for a little trip outside the PICU to the place they call the "forest".

She looks SO good without those tubes and wires!

Her immune system is still pretty much gone, so she had to wear a mask, but even with the mask you can see her smile :)

April 5, 2011 9:38am

Last night was Hailey's first night in intermediate care instead if the ICU!  Hailey was also allowed dinner last night!  She ordered beef and mashed potatos and gravy and peas.  She's on pureed foods, so it was surprising that although gross looking, the food looked so "real".

Jen stayed with Hailey last night and had said last night:

Nothing makes you jump from a dead sleep faster than when a monitor starts beeping. Initiate panic when it's flashing "Brady" by her heart rhythm. Found out this means she's in a deep sleep so her heart rate is a little low. No big deal. Someone tell my nerves to calm down!  After a few times of it going off and no one coming in I stepped out and asked and she just said her alarm settings were probably higher here than in icu and the nurse lowered them from the desk. That didn't go off again. Then her respiratory rate kept going off ALL night long! Saying 9 breaths a min. That alarm is set at 12.  Nurse said the chest things aren't great for someone who moves. It would hit 9 then jump back up to 20. If you remember the Drs in icu kept saying that monitor count wasn't accurate. I sware I got less sleep last night from the monitors in this hall than I did from nurses in the icu.

They are supposed to be repeating the swallow test today.  Lets pray for Hailey to be able to tolerate liquids so we can get that feeding tube removed!

April 4, 2011 7:40pm

Central line in her neck is now out and she's been moved down the hall! No more intensive care! Just intermediate care now :)

April 4, 2011 5:00pm

Sorry that the blog posts have lacked! Doesn't seem like there is a lot to update on lately. I think it's a good thing though!

Hailey had her swallow study done today! She is now allowed to have soft/pureed foods (ie: applesauce, pudding, yogurt, etc) she is still not allowed liquids as she coughed on small sips of water. This is due to the Guillain Barre and will go away as she gets stronger.

Because of this she will keep her feeding tube for a little bit longer until she can tolerate liquids. But they'll allow her soft foods!!!

Hailey's arterial line is now out and she's down to one IV now.

She's already asking if she can walk now and is ready to go home.

Hopefully not much longer Hailey!

April 3, 2011 7:46pm

Hailey has had a whiney clingy "grumpy old man" kinda day.  Completely understandable though!  Poor girl has been through the ringer!

She's doing good though!  Keeping her vitals stable, talking, and even moving all her limbs!  She just needs to gain some strength back to those movements! They keep putting her in the Physical therapy chair they brought for her (the carseat one).  It really helps her work her back muscles, and stomach and everything so they want her to spend some time in it each day.  Hailey hates the process of getting in it, but once she's in it she doesn't want to get out!

She's watching lots of movies and spending lots of cuddle time with mommy.

They've removed her NG line but have kept her feeding line in until she does a barium swallow test tomorrow.  They are also going to have a speech therapist come tomorrow to evaluate her as speech problems are common with this syndrome.

They will remove the central line tomorrow also and hopefully the Arterial line too.  They want to make sure they don't have to draw blood anymore before they get that removed.

Pretty soon she'll have no tubes at all hopefully!!

Still no talk on discharge or on where or how she'll do Physical therapy after she gets out of the ICU.  But things are moving along!

SO proud of you Hailey!

April 3, 2011 - PICU Nurses

The PICU nurses at The University Of Maryland Medical Center have been awesome with Hailey (and Jen and Dave!) while they've been in the hospital.  The nurses really take care of and talk TO Hailey and not at her, and always explain exactly what they are doing to her and try to calm her.  They've also made Hailey a few things while she's been there.  A couple of those items are...

The "Hailey" name at the head of her bed.  This was made by her nurse Alisha one night.

Also her nurse last night Caitlyn left her a note and a little my little pony after her "big day" yesterday!

Great nurses really do make all the difference ;)

April 3, 2011 9:40am

HAILEY WAS EXTUBATED LAST NIGHT!!!!!

I've been waiting till I was given the "ok" to say it and I was finally given the OK just now!!!

They removed Hailey's breathing tube last night!  She was immediately given a nebulizer treatment incase of any swelling.  Her first "word" when they did so was "mommy".  Then she asked if she could have a banana and then asked if she was going to school tomorrow. <3

She did GREAT all night without the breathing tube!!!  Her vitals have been great and her blood work has come back with no problems either!

She won't be allowed to eat or drink till they do a swallow study though.

One more step in the right direction!!!

April 2, 2011 7:22pm

Today has been a slow, boring, long day at the hospital.  There hasn't been much to update today as things haven't really changed.

Hailey is getting stronger by the hour though and has started flapping her legs like a butterfly.

They have spoken about extubation (taking the breathing tube out) and have been testing her to be able to do so.  There is still one criteria she hasn't met yet and we are waiting on that.

It's frustrating for Jen and Dave because Hailey keeps trying to talk to them and she can't because of the breathing tube and they can't figure out what she wants sometimes.

Hopefully soon so keep those prayers coming!

April 1, 2011 9:42pm

I just was told by Jen that we're about 20 min or so into a CPAP test!!  We don't know what that means, or if they'll take the breathing tube out if she does well, but cross those fingers!!!!

Come on Hailey show them what you can do!!

**Update**

Hailey ROCKED her CPAP test!  Woohoo!!!

April 1, 2011 9:40pm

I went and saw Hailey tonight.  The little bugger kept squeezing her eyes shut and wouldn't open them!  Jen and Dave were saying she's been doing that lately.  She thinks if she closes her eyes and pretends to sleep no one will bug her and they'll leave her alone!  She kept peeking at me real quick then closing her eyes again.  I threatened to tickle her and give her a million kisses unless she opened her eyes for me and she gave me a smile.

They put her in her little carseat type chair and she was watching Tangled.  She looks so much better than she has been looking!  They are weaning her off the Fentinal (sedation) and it is making her stay awake more, which is nice.

She is shaking her head no so strongly that she disconnected her vent tube off the connector at one point! If we could just get this vent taken out she'd look almost "normal" if you know what I mean!

April 1, 2011 8:40am

Hailey is receiving a blood transfusion this morning.  Her counts were low. The nurse told Jen she doesn't think it's a result of the plasmapheresis treatments but Jen said she remembers reading it's a risk of them.

They say she can still get the plasmapheresis treatment today, but they are going to give her half a unit of blood.

They also moved an IV from one of her feet to her wrist.