Monday, January 20, 2014

Make a Wish Event - Seth Grabel

Last night the Make a Wish foundation and Magician Seth Grabel gave us Wish families an opportunity to go out as a family and create more memories! Hailey was invited to see Magician Seth Grabel, who you probably know from America's Got Talent, and she had an amazing time! 

Some of Hailey's favorite things all rolled into 1 big show. Magic and Music! There were several times that Hailey was moved by music to get out of her seat and DANCE!! So glad that no body minded the 5 year old dancing and waving her arms in the air. 

After the show Seth invited the audience for a meet and greet! Hailey loves meeting new people and Seth even had a surprise for her. He gave her a t-shirt and in return Hailey of course gave him a HUG! We got to take a picture of Hailey and Seth!

Hailey was ready to wear her shirt right away! We had a lot of fun, we laughed, we enjoyed seeing Hailey have a great time. Thank you Make a Wish and Thank you Seth for a great night. It was Magical! :0)

Hailey even gained a new follower on twitter!! YAY!!!

Friday, January 17, 2014

A special gift.

Last year was quite the year for new accomplishments for Hailey. Being in an almost vegetative state, then sitting up on her own, to barring weight on her legs, to taking steps, to actually walking with assistance. 

We purchased a more suitable wheelchair 

and then a few months down the road we got Hailey her gait trainer (giant walker) 

Our limit through our insurance was reached and Hailey needed a walker. We had a walker from a previous episode of Hailey's where she needed help to walk. She didn't use it long, but I didn't get rid of it. 

Hailey quickly grew out of that walker and needed a new one. Thankfully a little girl who attends the same Therapy center as Hailey does, was getting a new one and no longer needed her current one. She graciously let Hailey use her reverse walker. 

Hailey quickly reached the limit on the height for this reverse walker and now we were looking for a new one. One that would grow with Hailey. Insurance was a no go. Being the beginning of the year we have to reach our deductible for the insurance to pay for it, or we buy it ourselves. Even buying it through a company referred by the therapy center, this walker would cost  a LOT of money! 
I did some research seeing if it would be more cost efficient to purchase this walker directly from the manufacture. I checked all the different "adaptive" websites that sold these walkers and the best deal was eventually found!! 

In December, Josh was at work and received a gift with Hailey's name on it. This gift was given to us right at the most perfect time! 

Hailey NOW has a new walker that will grow with her for at least another 2 feet!!! The only downside according to Hailey, "It's NOT pink!!"

On behalf of Hailey, Josh, and myself, we like to thank the following people: Brenda, Casey, Peyton, Mark, Donnell, Marilyn, Mark and Lisa!!

You have given us an incredible gift and to say thank you would not be enough! Hugs to you all!!!

Wednesday, January 15, 2014

Time for new AFO's

Hailey is 5 years old and 4ft tall. She had a major growth spurt or her being more vertical has made people think she's grown a ton. Either way every 6 months we have to get Hailey fitted for new AFO's (ankle foot orthotics) and we are certainly due for them. I think we are pros at the process by this point. The hardest part of getting new AFO's is having Hailey pick what kind of plastic and velcro she wants. TOO many decisions!

 Casting for AFO's is just like putting a cast on a broken foot. I think it's pretty much the same materials even! 

 Measurements need to be taken.
 You have to hold still while the plaster dries. 

 This is the first time Hailey didn't cry. She did give the tech a sideways look when he had to cut the cast off. 

After the appointment was done Hailey asked for a lollipop. They have a lot of patients with diabetes so there are no lollipops at the office. BUMMER!
The AFO's should be ready in about 3 weeks. I'm hoping they will be done earlier so we can break them in and take them to the Walk for Wishes event. Right now the braces she has are way to small and I hate forcing her to wear them. She doesn't complain but we are going to try and only wear them when we HAVE to. Without her AFO's Hailey points her toes like a Ballerina and it's 10x's easier to get cramps and spasms. You can see in the photos that her foot is pointed when her shoes are off. This time we went with stars instead of hearts on the braces and we went with blue, purple and of course PINK! I'll let you know what they look like when we get them!

Tuesday, January 14, 2014

Just when you think things are going well...

Lately when I take Hailey places where people who haven't seen her in a while see her again I hear, "She's doing SO good!!!" She is, but hearing this repeatedly has maybe let me let my guard down a little. In December we went to Utah to see Hailey's cardiologist and she wanted Hailey to use a Holter heart monitor for 24 hours. We've done this several times. The first was when we found out about the Wolfe Parkinson White Syndrome, the second we were told the WPW is still there, so what I heard about this third time caught me completely off guard. I was expecting to hear the WPW is still there and they will still continue to monitor, which it is and they will but now there is something more...

Hailey has now developed a 2nd degree heart block. Long story short, at times her heart doesn't complete the beat. This happens at the most when Hailey is asleep. They said at 2am it really pronounced. It can cause dizziness, light headedness, fainting. Kind of like low blood pressure. She has been getting tired lately but I thought it was because all the activity that she does, maybe it's her heart. Instead of her being monitored every year we will now see her cardiologist every 6 months. If/When this gets worse, to the point where we have to interfere, Hailey will need a pacemaker placed in her heart.

This sits funny with me. I don't know quite how to explain it without sounding cold or uncaring. This disease is horrible and towards the end of the disease things progress to a permeant vegetative state of the person with the disease. My child will be trapped inside her body. I know I wrote about this next part before, but it sticks with me. When Hailey was at the hospital the trip before her g-tube was placed, I saw a child with leukodystrophy. He was in that vegetative state, in his wheelchair, with a feeding tube and with a ventilator. When I pictured how that could be Hailey one day I lost it. I don't want my child to "live" like that if that is living. I don't know if that child is or was suffering but me personally wouldn't want that for MY child. I know with Leukodystrophy children have heart issues. I guess eventually there isn't enough white matter for your brain to tell your heart to beat as it should. I think that's the final sign things are ending. That's the point where you have to make a decision as a parent. Is the question "Should I let my child go?" Or is the question, "What's best for my child?" Those are 2 VERY different questions. We, as in me and Josh decided to place a DNR (Do not resuscitate) on Hailey. My signature is the one that is on the paper, so I feel like it's actually me deciding this will take effect even though we did this together. This is all my opinion and my thoughts. I know there are people who will have to make this decision people who have made this decision.

So if Hailey is doing as well as she is now, but her heart is getting worse, what do we do? It's not that we wouldn't do the surgery, but it's something that makes me wonder if I'm interfering with the natural progress of the disease. Am I interfering when I take Hailey to therapy? Is this apples and oranges?

I think for now I need to have it in the front of my face that even if Hailey is doing very well right at this moment I can't let this catch me off guard again. When I told Josh what the Dr. had said he had to remind me that we knew that this was a possibility for Hailey. Why did hearing it, make me feel as if I was ambushed? Maybe we are doing too good of a job at living life and keeping busy, and having fun? Now that we know about the heart block the Dr. is writing up her report for us to share with the school and her therapists. She told us that if Hailey says she's tired BELIEVE her and make her rest. She still can do therapy, after all we want her as strong as we can get her.

She might not be able to walk our entire mile at the Walk for Wishes event, but toward the last few feet we will allow her to cross that finish line on her own and cheer her on the whole way. Another reason I want as many people on our team as I can get!

Friday, January 10, 2014

On our way to the TOP!!

We are 22 days away from our Walk for a Wish Event to help benefit the Make a Wish Foundation of Southern Nevada. Right now, at this moment we are #2 on the list of TOP teams! Isn't that exciting?!?! We are certainly excited and we want to get to that number 1 spot!! 

If you would like to donated to support Team Hugs for Hailey you can do so here:

Friday, January 3, 2014

Why do I even have insurance?

Since getting back from Christmas in Washington, one of the many tasks is to go through all the mail that we had accumulated. In the pile was a letter from Blue Cross and Blue Shield, Hailey's primary insurance. In the letter they state that they will no longer be covering the Baclofen Medication. Baclofen is a Major part of the medications that Hailey takes. It helps to control the spasms and the stiffness in her body. Pretty much EVERY single child with Leukodystrophy takes Baclofen. She takes it 3 times a day and it's pretty pricey. Now they tell me I will have to pay the full cost of the drug when with insurance it was over $100 a month to begin with.
Why do I even pay insurance every month when they honestly don't do much for us? It's extremely annoying because this medication isn't something we can just say to heck with it and just stop giving it to Hailey. It doesn't work that way. She needs it and we will give it to her. What really annoys me, besides the whole entire thing, was at the bottom where they say: "We apologize for any inconvenience." Well Anthem, "I don't accept your apology because it's CRAP!"

Pretty frustrated right now. 

Wednesday, January 1, 2014

Year in Review

When 2013 began I had NO idea what was in store for us. We had only been home for 2 months after Hailey's tube was placed and she was in an almost vegetative state. She wasn't talking, she wasn't walking, she was diapered but she was able to communicate by smiling and she could also shake her head no. For those of you who have followed our story this will be a year end review, for those of you who are new this will be a lot of info in a short post.

Once January came along I had told Josh that after 2012 and all of the hospital stays and all the tests and pokes and blood draws I wanted OUT! Out of the city, out of the state, out of hospitals. I needed to take Hailey somewhere happy. What happier place then Disneyland? The beginning of February we took a family road trip to California and even though Hailey was in a wheelchair and was taking her tube feeds with us where ever we went we still enjoyed every moment. Especially when my little sister surprised us with her and my niece for a whole day. We took the girls to get princess make overs and took TONS of pictures! February was the first time Hailey looked at food and didn't shutter away from it. I gave her tastes of my soups and she liked it. It was a great sign of things to come.

In November of 2012 I remember getting a letter in the mail that was from the Make a Wish foundation. It was a proclamation announcing Hailey would get her wish granted. You don't know how real your child's terminal disease becomes until you read those words. Even before then I couldn't yet say the words, "my child has a terminal disease." without bursting into tears. I almost didn't want to get involved in the whole Make a Wish process. It turns out it that was one of the best decisions I've ever made. We met with our Wish granters in February and our two choices we had was to either go to DisneyWorld and stay at Give Kids the World or go on a Disney Cruise. I ended up making picture boards and Hailey picked the board with DisneyWorld on it. I even posted the video on this blog of her making the choice. 

The Make a Wish trip was the first time we had traveled since Hailey had been diagnosed. It was quite the adventure packing for a whole week and having to take so many medical supplies with you. Feed bags, formula, syringes, gauze, tape, diapers, and medications. I must have rechecked my list 20 times to make sure I didn't forget anything. 

We had a GREAT time at Give Kids the World and DisneyWorld. Universal Studios went above and beyond. We also appreciated that Hailey's Grandparents, Great Grandparents and Uncle and Aunt that had joined us on our trip. 

Getting back from our trip is when we started Physical, & Occupational therapy and when I started looking for a place to take Hailey for HippoTherapy (therapy on horseback). 

In March I had taken the Hugs for Hailey's necklaces to a craft show for the very first time, sharing Hailey's story with complete strangers. Hoping to boost our Facebook numbers and spread awareness of my brave daughter. I may not know why others can get 40,000 likes on their child's page while I still have barely under 1300…but I will continue to try to get the word out of our story. While at the craft fair I was introduced to a woman to sold DoTerra essential oils. She was so nice to answer any and all my questions. The bottom line was that the Doctors were telling me there was no more that could be done for Hailey. If I tried using essential oils there would be nothing to lose. I read as much as I could about it and she even gave me some oils to use free of charge. I have a whole other post coming up about essential oils. It'll be posted in the next couple weeks. 

May was Hailey's birthday month where she turned 5 and I was determined to go BIG! Hailey wanted a Princess and pirate birthday party and I was excited to plan this for her. At this time she wasn't yet sitting up on her own but she was trying to communicate more. So many people helped celebrate Hailey's birthday. We even had the owner of Happy Thoughts Bakery donate a Princess and Pirate cake! Lots of family came to celebrate. Hailey's birthday happened to land on Mother's day and it was a great present for me. 

In May we were excited to be asked if Hailey could attend a Fundraiser in her honor. The fundraiser was given by Hailey's Nucca Doctors at Spine Wellness Center. There was face painting, a bounce house, great food, a visit by the fire fighters, and a great silent auction and raffle! We love Dr. Sarah and Dr. Lisa for their continued support for Hailey. By this time Hailey was lifting her arms up and she was speaking 2 words at time and was closer to sitting up on her own. She was able to sit up for longer and longer moments at a time. 

In June Hailey had surprised us all when she started crawling! Now she was sitting up on her own and she was crawling. Things were going SO well!!! Then about a week after all this progress Hailey had another episode and we were back to square one. Hailey would vomit and have endless spasms. She couldn't sit up, she couldn't crawl. I continued to put Hailey through therapy then I got a phone call that Hailey was accepted at Spirt Therapies for Horse Therapy. I was excited and worried at the same time. Hailey couldn't sit up, how was she going to ride a horse? But we decided to go forward.

Hailey's episode lasted about 3 weeks. She started taking Zofran just so that she would stop vomiting. The first lesson at Spirit didn't go so well. Hailey screamed and cried and I didn't know if I should just stop and take her home. Ms. Laurie the therapist assured me that 9 times out of 10 the child will cry at least for the first few lessons. She encouraged me to give it a chance and I'm glad she did. 

July started great. After her episode Hailey went back to where she left off! She sat up again and was using her arms and she had started to slim down from all the work she was doing. I had put Hailey in Summer School and towards the end she was barring weight on her legs. It was amazing to see her vertical after so many months of just lying on her back staring off into space and crying.

After a whole month of Summer school we celebrated Hailey's Pre-School graduation with a big party combining her graduation with Joshua's Birthday. The cousins were in town and it was time to celebrate! 

Hailey helped Josh blow out his candle & I bet you can all guess what he wished for. <3 

Hailey had completed her first 6 week lesson at Spirit Therapies and we were so proud of her. The very last lesson of the session and Hailey was all smiles and no tears. We love Spirit and the wonderful people we've met through it. 

August was the end of the summer months and we decided that we should take Hailey to Washington state to visit Josh's side of the family and I am sure glad we did. We had SO much fun. Hailey and I were given manicures and Hailey's Grandparents spent a lot of quality time with her. One night as Josh and I went out for a MUCH needed date night we come home to Josh's mom saying the words, "Hailey took 4 steps on her own tonight!!" I didn't want to cry but I could feel my eyes stinging with tears I was fighting back. SHE WALKED?! The doctors told us the chances of her ever walking again were slim to none. I've learned to take what Doctors say with a grain of salt. With every one of Hailey's episodes she'd crash and come back. Every time. Why I thought this time would be different makes me upset that I doubted Hailey.

September we were very excited to have Hailey start Kindergarten! Well, excited and terrified at the same time. At least for me. Hailey would be starting full day kindergarten and I had made sure that everyone was going to know who I was and who Hailey was. Hailey LOVES school and her teacher is great. At this point Hailey knows 22 out of 26 letters of the alphabet! 

We were invited by the Make a Wish foundation to attend Make a wish night at the baseball field to watch our local Las Vegas 51's play. It was such a fun night and meeting new make a wish families is one of my favorite things!

September we decided to continue with hippo therapy at Spirit and Hailey was thrilled to go back and visit "her horse" Pablo. Hailey had made such amazing progress. She was taking more and more independent steps and even standing for long periods of time.

We were invited by Sam Boyd Gaming to go to Disney Junior Live and we were even offered a meet and greet  with two of Hailey's favorite mice.

October was a busy month for us! I went down to Hailey's school and took some pictures of Hailey having some exciting fun on the playground. Her favorite thing to do is go down the slide!

We had 2 events in one day and first up was a wish wall dedication at the Make a Wish Offices. Our wish coordinator hadn't seen Hailey since February and to see her in October and walking kind of threw her for a loop! 

Then after that we headed to a fundraiser for Spirit Therapies. Everyone there, especially the volunteers, have seen the progress Hailey has made. We appreciate the volunteers so much. Without them Spirit couldn't run as smoothly as it does. 

October was also Physical Therapy Month. I entered an essay on behalf of Children's Therapy and Hailey and we ended up winning first place! Hailey got an iPad mini! 

Then lastly in October after a full month of voting we won the 10,000 Reasons to Save essay contest! We could not have won this essay without the help of our family, friends and readers of this blog! 

November was another special month for us! We had the opportunity to be a part of another event for the Make a Wish foundation. Rally car driver Tanner Foust spent the morning with 3 very special wish kids. This was an amazing event and Tanner was very generous to eat breakfast with the kids, take them for a spin in the rally car, and have them spend the day in his suite! Another great person we met was a fellow wish child by the name of Amanda! Hailey and her have become Best Friends! 

While there we met Brandon and Leah Jenner. They are some of the sweetest people I have ever met. They wanted to share Hailey's story and I couldn't have been happier! They even follow Hailey on Twitter! You can too @HugsforHailey 

To close out the month of October Hailey and her cousin spent Halloween together and my little Super Girl had done a complete 180 from last year!

In November I signed Hailey up to be paired up with a runner who would run on behalf of Hailey. The runner we were paired up with could not have been a more perfect match for us. Katie was assigned to us and she has done 5K's and Half marathons already. She sends Hailey the medals that she gets and Hailey hangs them up in her room. Having someone do something on Hailey's behalf is pretty amazing. Thank you Katie for running for Hailey! 

Another special person who has given Hailey a great gift, is a little girl that attends the same Physical therapist as Hailey, she donated her old walker to Hailey. Amazing generosity. 
This Thanksgiving we had a LOT to be thankful for which may sound ridiculous coming from a parent of a terminally ill child. Hailey was able to sit at the Thanksgiving table with us as a family this year. 

We also met local celebrity Criss Angel and participated in a Christmas PSA for the Make a Wish Foundation. I posted the PSA on our Facebook page and we will keep it on the DVR as long as possible! 

Before the actual act of Christmas began we had a lot of things on our to do list. First up was a cardiologist appointment in Utah. This would be the first time that Hailey was to be able to play in the snow and she LOVED it! Then after the Dr. appointment we headed down to Tuacahn and took some silly pictures. It was a lot of fun having a little family weekend out of having to be in Utah. 

We also attended the annual Make a Wish Christmas Party and that was a BLAST! Loved it! 

Every year before Hailey got sick we'd go to Washington for Christmas. The past 2 years we were not able to go. This year we decided it would be a great idea to go. We had a lot of fun. It was great to see Hailey so happy. 

So that was our year. I had no idea what was in store for our family in 2013. I can honestly say it was a good year. We've stumped our Doctors and we've lived life how we've wanted to. We did everything we could to give Hailey the quality of life we would have if she wasn't sick. We want to thank everyone who has helped us by supporting our blog, Facebook page, and twitter. The people who have continued to share our story and our Hugs for Hailey necklaces. People who don't know us personally, who email me and ask if there is anything they can help me with or just to tell me they are thinking of us. People who have sent gifts to Hailey just because they thought she'd like it. I think that means the most. There have been so many friends that I feel like I have lost during the time I've needed friends the most. There are also friends who have stood by me and kept on me when I shut down and didn't ask for help. Who didn't act differently toward me because I have a terminally ill child. Who didn't walk on egg shells around me. I appreciate that. Josh and I know that we can not do this alone, nor do we want to. We appreciate everyone involved in our journey. We don't know what is in store for us in 2014 but we do know that we will keep up this blog and Hailey's Facebook page. 

Happy New Year to you all and thank you for reading!!