Look TREES!!!

When we landed in Portland on our way to Vancouver we were in Hailey's Grandparents suburban with the windows down and the cool air blowing in. When we left Vegas it was 111* when we landed it was 66*

As we are driving down the road Hailey kept putting her hand out the window to touch the air and then all the sudden she shouted, "TREES!!!" My poor desert baby could barely believe her eyes with all the green that surrounded her. Since I grew up in Vegas, I don't care so much about trees and bugs. Hailey's granny always laughs when she says, "Jessica doesn't like nature." It's true. I'll admit it. Josh's parents will leave a door open and something will fly in and I'll go hide. One night when something flew in and I ducked I was asked why? What flew in? I said in a very concerned tone, "it was a bee the size of a small elephant." 

When we were in Washington Josh had his 20 year high school reunion. Part of the reunion was to have a family day at the park. Hailey had a ball! The kids that came were right around her age and where so very sweet to her. One of the new friends she made had a special treat for all the kids. They brought along glitter tattoos! Hailey already LOVES tattoos, but when you add glitter...WATCH OUT! 

Living in 100+ degree weather doesn't make for a fun experience at the park so in Vegas, we don't do parks. In Washington you can sit in the shade and be cool or sit in the sun and feel warm. Hailey wanted to do everything at the park. She wanted to swing on the swings, she wanted to be with all the new friends, she wanted to be a kid. Something she doesn't get to be in Vegas. Hailey was so happy that someone even brought their puppy with. *Thanks for bringing the pup Chelsea! Not only did Hailey meet new friends, I enjoyed all the new people I met as well! Thank you all who came and made this trip to the park so much fun for us!!

Strangers Helping Strangers and Friends helping Friends.

As most of you know Josh is from Vancouver, WA. Pretty much all his family lives there and within a 5 mile radius of each other. When we need them they all pull together and especially now when we need help with Hailey. They all have rallied together with local business that have helped and still are helping to spread the word of Hailey and her story. When we were up in Vancouver we got to stop into a few of the business to say thank you. If you are on facebook you may have seen the short updates. Here is a little more detail:



One of the BIGGEST Hugs for Hailey supporters is Oscar's Market. They have been there for Hailey since hour 1.

Oscar's has a display of Hugs for Hailey necklaces and bracelets, and flowers clips at the front of the store by the cash registers. It's always updated with the newest necklaces to come out.

The owners of Oscar's Market are some of the best people on the planet! If you don't already know the owner's are Josh's Mom and Dad. 

Next up, the owner of Beauty and Things, Ms. Janell! I have always wanted to take Hailey in to get her nails done. Here in Vegas I have yet to find someone who is patient enough to work with Hailey and her spasms and be caring enough to not let it bother them. Janell has helped sell Hugs for Hailey necklaces and also introduced us to  Bedford retirement home where Hailey went with her grandma to say hello to some of the residents. Hailey loves volunteering! Janell was kind enough to welcome Hailey into her salon and help Hailey and I to get matching manicures. You all know how much Hailey loves having her nails painted. Thank you Janell!! 

Another local business is Benny's Rod and Custom Pizza restaurant. The owner Benny truly cares for others when others are in need. Benny has done so much for Hailey, and all without every meeting her. We wanted to give the owner a  thank you plaque along with some Hugs for Hailey Bracelets. Thank you for all you have done Benny!

 Hailey and Josh playing some Pinball at Benny's

Nana's Tiny Cupcakes has helped during Hugs for Hailey fundraisers. We were able to stop in and pick up some cupcakes to take to Hailey's Open House.
These tiny cupcakes are little bites of yummy! To be totally honest with you I kinda wanted to take one little bite out of each one. The flavors that are offered are delicious and unique!

 Thank you Nana's Tiny Cupcakes! These were such a hit at the open house!!

There were a few other businesses that we will have to catch next time we are visiting Vancouver. Josh, Hailey and I want to thank everyone who have helped us and especially our little girl. We can't thank you enough!!

HUGS!!

A Happy Birthday for Josh

July 25th was Josh's birthday. It was the same day as Hailey's Pre-K graduation. While Hailey finished out her day at school I went home to try my hand at a Paleo birthday cake for Josh. We invited both my sisters, Hailey's cousins and then my mom over for a Paleo dinner. 

Hailey's favorite part was singing Happy Birthday to her dad and helping him blow out his special Strawberry Shortcake candle!

Now when it came time to cut and eat the cake I think that curve ball I threw at the kids was almost a cruel joke. The cake LOOKED yummy, it tasted...meh...what do you expect from a cake with ZERO sugar? I don't think a single one of them took a 2nd bite. The "frosting" was refrigerated full fat coconut milk whipped for a few minutes on HIGH. There was even a "chocolate" layer that someone (I won't say who...my mom) asked me if there was a plastic separator I forgot to remove between the layers...Well at least I gave it a go right? Josh hates cake anyway. He is a pie guy, but I didn't find a paleo pie recipe in time that I had all the ingredients for. The last time my sisters and I were together I didn't get a picture. The one time I remember to take a picture I didn't realize I didn't put any make up on that day...oy! If it's not one thing it's another! 

After cake Hailey helped Josh open his presents. Hailey bought her dad some fancy new socks and was happy to show them to him! 

Hope you had a good birthday Josh! We LOVE you!! <3  

Pre-School Graduation (ESY)

This last school year was a doozy! When Hailey started her 2nd year of Special Ed Pre-K she was just starting one of the worst episodes we would have experienced. She was only in school for 1 week until she lost her ability to walk. We didn't know at the time but the white matter had practically vanished in the central nervous system of her brain. When this had happened we had to have Hailey placed in her wheelchair and when I told the bus driver that came to pick her up they said they couldn't take Hailey to school because her being in a wheelchair wasn't written into her latest IEP. I had to call the school to request an IEP meeting to have this in place and in the mean time I was the one that took Hailey to school and put her in the wheelchair and then came back and put her and the wheelchair back in the car and took her home. This was so hard on my back and was really unfair to both of us. I had later found out that you can request an emergency IEP meeting and you can get things done a lot faster. Keep that in mind if you ever need to adjust your IEP...

After Hailey lost her ability to walk and the spasms started we were told to drive down and admit her to Primary Children's Medical Center in Salt Lake and that's where we stayed...for a while...

Hailey ended up missing a TON of school and in the end qualified for ESY (Extended School Year) This was the second year in a row that Hailey had gone to ESY but this time all was in place. She was able to be transported by bus, she had her 1 on 1 aide with her, she was a happy girl, until another episode hit. 

We had thought that summer school would be a no go with her symptoms of weakness and vomiting hitting her so hard. Long story short (which is new for me, right?) she ended up going to summer school and not missing a single day! 30 days of participation! There were a couple bumps in the road and in the end Hailey did it. 

My sister was visiting that same week and was able to attend Hailey's graduation. Hailey was SO happy to have her cousins and her aunt there and was even happier that Daddy was there too! There were children there that didn't have anybody show up for them and that broke my heart! Your special needs child graduates from pre school and you don't show up?! How is that possible? I know that there are parents that work and there are certain situations that come up, but it was very sad when I'd take a picture of Hailey and her award and a child would come up to me and ask me to take their picture too cause, "mommy's not here." It may be just a pre-school graduation but every child wants to be recognized and congratulated and feel special. Try to take the time to do that for your child. 

Thank you to my family for being there for Hailey!

The Price of Semi-Indepence

Hailey has pushed through this last relapse like a champ. She was unable to sit or crawl for about 3 weeks until her head stopped spinning and she regained her strength. We kept up with our appointments and her physical therapist, not ever seeing a child with leukodystrophy, was amazed at how far Hailey would push herself during PT. 

We had been discussing getting Hailey a Gait Trainer (which is like a large walker) before she had relapsed. We knew we would have to fight our insurance for it and they would come back and say that we could order it but if they denied it, it would be our bill to pay. Well, with a price tag of over $7,600.00 we knew we weren't going to be able to just pull that out of our hat. 

So what to do? We want Hailey to get what she needs, we are the parents that need to provide for her, insurance is suppose to help. When ever an insurance problem comes up I always ask myself what I pay for every month when they do nothing for me? Since Hailey is a minor and for some odd reason doesn't qualify for disability she (we) can apply for Medicaid. If we get the gait trainer and submit it to medicaid and they help us pay for it we will be good to go. Until everything gets figured out we went ahead and put the order in for her gait trainer. 

After a month when the GT arrived Hailey had already had and came out of her last episode. She was ready to get walking all alone.

At the end of August will be 1 year that Hailey hasn't been able to walk and has been wheelchair bound. The days, and months are going by fast in slow motion if that makes any sense. On one hand I can't believe it's been a year on the other, everyday is such a struggle and it seems like it takes forever for 1 day to pass. Especially when she had her episode that was the longest 3 weeks in a long time. 

Hailey was ready to get started with her walker. She did so good. Always with a smile on her face. She walked up and down the room. 

It is so important for us to be able to give Hailey the independence she wants so bad. It breaks my heart when she tries to get up and do something and then gets called back to reality that she's unable to walk anymore. But I am glad that she will keep trying. Who knows maybe one day her brain will communicate with her body and follow direction.

The other day at her school all she wanted to do was get out of her wheelchair and dance to the music the other kids where dancing to. Since I am around Hailey 98% of the time I have experienced the un-nessasary neglect some children show towards Hailey. I understand that they don't get "it." Why can't she walk? What do you say when a little kid asks that? She's sick? Well, kinda but don't worry you won't catch it. When there are kids that won't play with Hailey there are kids that don't see the wheelchair and will play with Hailey. It's hard when you see you child get left out of things that she obviously wants to be a part of. I've seen it and it hurts, but I don't let it get to me. I try to "fix" it when I can. Josh hasn't been around this part of Hailey's life. He's at work when she's at school and I attended school with Hailey for many many days seeing this happen several times. 

Over the weekend we attended a festival where there was music, food, and dancing. While I went to get food, Josh was with Hailey and she wanted so bad to get out of her chair and play with the little girls that were dancing to the music. When he takes Hailey to where the girls are the girls move. He helps Hailey go to where the girls are now, they move again. Hailey is getting upset wanting those girls to hold hands and dance with her, but they are moving from here to there and not including Hailey. Once I get my food and make it back I go to Josh and he asks me to take her and he leaves. I knew something was bothering him so I leave Hailey with my mom and go after Josh. He was so upset about what had happened. He tells me with tears that, "all she wants to do is play with them and she can't." I kind of think I should have prepped him for this. You never what to think that people are saying, "oh look, no one wants to play with the handicapped kid." There are people who do and there's nothing I can do about that. I've had people read my blog and actually tell me, "I'm so glad this isn't happening to me, I'm so lucky." I don't say what I want to say back and maybe I should. With Hailey I become her friend and I tell her I want to dance with her and I want to play with her, she won't be alone. Once I finished talking to Josh I went back in and my mom and a family friend were with Hailey and those same little girls were with and they were holding hands and dancing together. Hailey was so happy! 

So when things come up that cost thousands of dollars and you think there is no way for you to afford something that, that will help increase the quality of life for your child, you just go for it. If it works out, awesome. If it doesn't, well...that's life. If it takes us $20 a month for 32 years then that's what it'll have to be. You can't put a price on your child's smile. 

New AFOs

AFO stands for Ankle Foot Orthotic. I talked about them before in this blog. Hailey got her first pair in November of 2012. At first she HATED them. Her feet where always pointed like a ballerina and her spasms were out of control. She wore her first AFOs for 12-15 hours a day and they put her foot in a 90* angle position. (Neutral)
She grew out of those AFOs in April. Kids grow out of shoes so fast! I was pretty bummed when she grew out of these after only 6 months of use, it's was almost like paying $500 a month for shoes and now she can't use them anymore, and that's the end of that. Since they are molded strictly to her foot they can't be recycled.?
We took her to get fitted for new AFOs with the thought that she's going to start to use a gait trainer and will need shoes that will allow her to flex and contract her ankle to "walk" in the trainer. We got her AFOs then she had an episode and it set us back so we had to hold off on the gait trainer. We are still fighting working with the insurance to have that approved. It's been almost 2 months and apparently they can take up to 90 days to approve or deny.
So with these new AFOs Hailey has to get used to them once again. Starting off with 2 hours a day for 5 days then 4 hours then eventually all day. She wears them to school and as soon as she gets off that bus she says, "Take it off" and points. We have to distract her but she is very adamant about getting her way. These one provide more stretch which cause more cramps which cause spasms which cause crying.
These are also different because these ones slip into real shoes. Shoes that are 2-3 sizes bigger then her foot. So we had to find the brightest pinkest shoe that we could. Things that are pink are easier to tolerate!

I have the Biggest Littlest Pet Shop Fan!

Right before her birthday Hailey fell in LOVE with the Littlest Pet Shop animals! We started off with 9 but ended up with 50+ pets. There was a little girl who was done playing with her pets and donated them to Hailey. At first Hailey tried to name every single one of them, but it was getting a little out of hand and pretty darn tough to try and keep track. Now we have names like, pink bunny, brown puppy, zebra guy and fishy...

 Every time we leave the house Hailey gets to pick 1 pet to come along with us for the ride. She was kind of bummed they don't get to go to school with her.

 These pets are very loved and played with EVERY day.

They almost all fit inside of one of JOSH's old shoe boxes!