Thursday, March 21, 2013

Make a Wish Update!

We got a visit from our wish makers last night and it was a lot of fun! The night started off with a big bag from the Disney Store. Inside was one of Hailey's favorite people! Minnie Mouse!

Hailey also received a Princess Cinderella Barbie and she also received this very special Make a Wish Barbie. These are exclusively for Wish kids and she did not get to stay in her box very long. Only long enough for two pictures. Hailey loved her pink dress. Hailey let us know that Pink was her favorite color.

Our wish granters have made every necessary arrangement for us. They will have transportation to and from the airport, a rental car, some place for us to stay, tickets to the parks and even LUGGAGE! While I am sure Josh doesn't mind, I called the purple leopard suitcase and Hailey gets pink...of course!
 I can't wait to take pictures and fill up this awesome album they gave us as well! The top of it says Hailey's Wish April 2013 and the bottom is engraved with Give Kids the World!

Hailey loves looking at photo albums. I have tons of the Snapfish books I've made for her. I am guessing this will be her new favorite! 

Thank you to our wish granters Nancy and June! They have helped us with everything we need and told us to prepare to have the most memorable family vacation ever!

Even though this Make a Wish comes at such a high cost with Hailey's health we are so glad that this program exists to help families have such special moments during the time they are caring for a child with a life threatening illness. If you are ever looking to donate to a worthy cause please keep Make A Wish in mind!

April can't get here fast enough!!

Friday, March 15, 2013

Flying Questions.

So our Make a Wish trip is coming up next month and there are about a MILLION questions I have. One of them is, "How the heck is Hailey suppose to fly on a plane if she can't sit up unassisted?" Well apparently that's a pretty good question because no one I asked that I thought would know the answer did. I don't know how often "medically fragile" children fly to begin with but everyone I asked responded with, "I don't know." I found out that Hailey's special needs car seat is not FAA approved and it's too wide for the commercial seat, so that's not going to work. I can't hold her in my lap the whole time. I could fly with my arm across her chest for 4 1/2 hours, but since I don't know when there might be a bump of turbulence that won't work. So. WHAT do I do?
I did some researching on the internet and came across this:

It's called a CARES belt. Child Aviation Restraint System. Did you notice there is no E? Guess they couldn't call it a CARS? Here is an overview taken from their website

CARES Child Aviation Restraint System is designed specifically for aviation use for children age 1 and older who weigh between 22 and 44 pounds. These youngsters are old enough to be in their own seats, but are too small for the seat belt alone to protect them and provide the safety they require during airplane travel. Their bodies cannot withstand the jolts that are common in routine air travel, much less emergency situations, and they flail forward or slide beneath the seat belt if they are not held securely in place.
Each year more and more young children fly. But until CARES came along, what was missing was a convenient, hassle-free way to keep young flyers safe. Here’s what makes CARES such an invaluable travel solution:
  • CARES is the first and only harness type Aviation Child Safety Device to be certified by the Federal Aviation Administration (FAA) as an alternative to a car seat.
  • CARES is an elegantly designed belt-and-buckle device that works in conjunction with the regular airplane seat belt and provides young travelers the same level of safety as a car seat.
  • CARES weighs just one pound and fits into a 6″ stuff sack! It is easily portable, simple to install, adjustable to every size airplane seat, and usable on any window or center seat in the airplane, except in the emergency exit rows.
  • Need your car seat on the other end of the trip? Just check it through as luggage – and carry CARES on board in your pocket!
CARES is manufactured exclusively by AmSafe, the foremost manufacturer of aviation seatbelts and pilot restraints in the world. (Turn over your airplane seat belt buckle. Chances are it says AmSafe.) CARES is made of the same industrial-strength webbing as your own seat belt and is engineered to the highest aviation-safety standards.
In regards to using it for a child with Special Needs: 
CARES has been used successfully by many children with special needs. Parents should check with their physician or physical therapist to determine whether CARES provides sufficient upper body support for their child. If your child is under 44 lbs (20 kg) and less than 40 inches (102 cm), no special arrangements with the airline are necessary – just carry the CARES on board and install it as directed.
So it looks like this is the way to go as far as I can gather. I am a preparer I have to have a plan. I don't usually like surprises, I am hoping all goes well. 
We were able to fine a CARES belt here locally, but it was still VERY expensive, which is crap. It seems that anything that is for "Special Needs Children." Costs an arm and a leg and people like us have NO choice but to pay.  I hope this thing works, and it's comfortable for Hailey and the airline doesn't give us any trouble. We shall see. You know I'll let you know how it goes. 

Thursday, March 14, 2013

NEW ITEM!! Hugs for Hailey Bracelets!

There is something new we are adding to our Hugs for Hailey line. Besides Necklaces, and earrings, we now have silicone bracelets!
They have Hugs for Hailey on them along with our Facebook page address. We are selling them for $2 each. Shipping is $1 and $0.50 for each additional bracelet. If you want to place an order of 10 or more we can work out a flat rate price on shipping for you!

Theses are all packaged and ready to go!!

Hailey sporting her bracelet! 

 Even Josh and I have bracelets! This one is mine!

You can contact me by email: or through a message on facebook. I can send you a paypal invoice. Don't forget boys and men CAN wear hot pink too!! 

Tuesday, March 12, 2013

Help Share out Etsy Shop.

Over on Facebook we are running a fun little contest that will help share information on our Etsy shop. Find this post, pictured below, press the share button (where the arrow is pointing to) post to your wall, and let your friends know that Hugs for Hailey has an Etsy Shop! The winner will get to design their own Hugs for Hailey necklace!! Winner will be announced next week!

**REMEMBER** You HAVE to press the share button (share publicly) so I know who to put in for the drawing!! The Share button will keep track of who shared!
Thank you for your help, and GOOD LUCK!!

Tuesday, March 5, 2013

St. George Appointment

We had our appointment for Hailey's follow up with her Rehab Dr. in St. George February 25th. Our appointment was at 6:00pm. (odd huh?) We left our house around noon and was able to check in at 3:00pm. I am so glad St. George is so close and an easy drive. We finally racked up enough points for a free nights stay at the hotel. (It's about time!) 
So we check in, get settled and hook Hailey up for her feed. After that was all done we drive down to the hospital for our appointment. This time there was only 1 family in front of us but we didn't get into the room until 15 minutes after our appointment time. Once we get in the nurse weighs Hailey (60.9 POUNDS!) and catches up on medications and paperwork. Hailey is on my lap and out of her wheelchair and the Dr. comes in. She first notices that Hailey is sitting semi up right and is in a happy mood. She asks about Hailey's AFOs and how long she can tolerate them. She is in them from when she wakes up until she goes to bed. A funny thing about that is that as soon as the clock strikes 8pm she starts getting fussy and pointing at her boots to have them be taken off. The doctor asks about the drooling, and the sleeping, and then she wants to examine Hailey. That's when Hailey starts crying. The doctor takes off Hailey's AFOs and checks the clonus of Hailey's Muscles. Just a recap on what Clonus is: 

Clonus (from the Greek for "violent, confused motion") is a series of involuntary, rhythmicmuscular contractions and relaxations. Clonus is a sign of certain neurological conditions, particularly associated with upper motor neuron lesions involving descending motor pathways, and in many cases is, accompanied by spasticity (another form of hyperexcitability).[1] Unlike small, spontaneous twitches known as fasciculations (usually caused by lower motor neuron pathology), clonus causes large motions that are usually initiated by areflex. Studies have shown clonus beat frequency to range from 3-8 Hertz (Hz) on average, and may last a few seconds to several minutes depending on the patient’s condition.

The Doctor sees and improvement in it and decides to hold back on Botox this time. The nurse asks about therapy and I tell her that my insurance still doesn't want to provide it so we are on our own besides the 30 minutes a week at school. I tell her that I can get Hailey to stretch her hands up to her head and that we work on baring weight on her legs. She asks to see and tells us that she didn't expect to see Hailey do that. I don't know if she meant at all or at this appointment. When I put Hailey's feet on the floor and slowly get her to stand she starts shaking and can't get a hold of the spastic muscle tone right away, but after a few seconds the spasms stop and I am holding her up under her arms and she is baring some weight while I have the majority. 

Hailey just doesn't have the strength in her core to stand straight up for more then a few seconds. After I  help push a couple of steps out Hailey her knees start to buckle and Josh has to take her and put her back on the table. She asks us to put Hailey on her stomach (which is not a favorite position for her) and notices that Hailey's hips don't lay flat...still

We talk about the Baclofen and maybe trying to reduce the dose. If we can get her on a lower dose of the muscle relaxer maybe it'll help strengthen her core. By this time Hailey is screaming and crying so hard that she blows out her diaper and we have to change her and clean up the examination table. One concern I have with Hailey is that she goes above and beyond what is necessary with the crying. She doesn't let me out of her sight. I can't get up and walk away to use the restroom or grab the phone, or feed the dogs. She FREAKS! When and if I ever get a regular nurse and get respite hours I don't want her to be screaming the whole entire time. She's great at school because she's going away from me, but if I go away from her it's like an explosion of emotion with her. The doctor says she displays anxiety issues and could maybe use an anti-depressant. That seems odd to me. My 4 year old needs an anti-depressant? I am weary of adding another medication to the mix at this point. I take the prescription but I want to read up on it and see what her pediatrician says about it. If it'll make her happy and in a good mood awesome, but it's still odd to me. We also get new stretch AFOs that we need to start working on. Hailey isn't a fan.

She also says that she talked to Hailey's neurologist and he needs us to come back to the hospital tomorrow and have some blood drawn for labs. When Hailey gets blood drawn it always seems to lead to more questions and not enough answers. Then the waiting! Then what's worse then waiting is the call with so called "results."

So we are done here and have to come back again in May to check on the Clonus and see if we need botox or not. Tomorrow we come for blood work then we can head home. 

I didn't take any pictures of anything in particular in St. George but here are some I had on my phone: 

It's not often you see a picture of Hailey standing upright. She likes to "walk" but it's hard on everyone. Her legs get shaking after a few "steps" and my back is perma-huntched from holding her under her armpits. It's harder for Josh being even taller then me. We try and get her on her feet a few times a day despite all that. Her wheelchair is on the left of the picture and her rifton stander is behind her against the wall. My house looks like a hospital warehouse.

Every time we go away and come back someone is missed very much by the dog. This was actually when we got home from Disneyland, but she does this every time I put Hailey on the floor. 

This was funny. Josh had set off the fire alarm in the house and it was so loud! I told Hailey that we better cover our ears. So this is what she did. It didn't last long and she was trying so hard to hold on to the pose that she squished her face. It was very cute! 

Saturday, March 2, 2013


So I was able to get my hands on some supplies and I added a lot of new necklaces that will be priced at $10.00!!! Oh happy day!!!

You can still create your own necklace for $15.00 but if you go to our Etsy Shop there are a lot to choose from at the $10 price. As a thank you for reading our blog and taking a look at our shop you can use code NOWOPEN to get 10% off your order!! You need to enter this code at check out and it's ONLY for our Etsy Shop! Here are some pictures of the new necklaces we have listed in the shop.