Friday, August 30, 2013

Where's my handbook?!

When you have a child with special needs and that has a terminal disease you would think that before you leave a hospital or a Dr.'s office someone would say, "Here's your handbook. Everything you will need to know about the services you will need and your child is entitled too is in here. Along with a FAQ section and a toll free number so that if you ever have any questions the person on the other line can answer them for you."

THAT DOESN'T HAPPEN! There is no one to talk to, there isn't a start HERE path you can take, there is no seeds for that money tree that you are going to need. You feel alone. I felt alone, but not for too long. Once I turned my diary into our blog I started meeting other moms. Some were in a similar situation, some in a worse situations, some that offered help every way they could. There were moms that shared the story of their child and what they were going through and I realized that we were very eerily similar. They didn't get a handbook either. I wasn't alone. It might be terrible to say, but I had some sort of peace in knowing I wasn't alone. Unfortunately having a special needs child or a chi;d with a terminal is disease is affecting millions of children. It's not just me. I don't think you get that when you first get hit with that kind of information. You get to a point where you stop thinking, "why is this happening to ME?" and think, "why is this happening to all these kids?"

After months and months and finally getting Hailey into therapy, I started to open up to the other moms in the waiting room. I can talk to anyone so I figured it's not going to hurt to ask if they had info on services. I started getting information! I learned about the Desert Regional Center I learned about Olive Crest Respite Foundation. I'm in the process now to be involved in taking part of the services they offer. Nothing happens overnight and there are papers to be filled out and medical records to submit but it's a start. Something that I might have learned about too late.

When I first opened this blog up from my diary it was all about what we were doing and dealing with, now it has transitioned into information on Hailey and information to help others in the same situation. Have you checked out our resource tab? I try to keep that updated and I am hoping it helps. If just one person gets info that I provided to them then I will feel like we made a difference. Hailey made a difference. All that Hailey has had to suffer through had enabled her to help another child. That would be incredible!
If you have information on services or resources please SHARE! Leave a comment on our facebook page!

Tuesday, August 27, 2013

Open House, New Friends, and Encouragement

While we were in Washington we wanted to invite all our Hugs for Hailey supporters to an open house at Hailey's Grandma and Grandpa's house. Hailey was ecstatic to see the group of girls that were to come see her and play. Hailey wanted to be with her new friends and would tell whoever was helping her to "walk" to let go. Although hesitant we would let her bare weight on her legs and we would let go once she got her balance. Hailey was standing on her own! She was able to go 5 - 15 seconds at a time. Longer when she would hold hands with a new friend. 
These girls were such a big influence and support towards Hailey. That smile didn't leave Hailey's face the whole open house. 

 Once the girls left you could tell that Hailey was getting tired but there was no stopping Hailey and practicing her new accomplishment! Hailey would grab anyone near by and recruit them to help her walk.
 Soon, Hailey would venture over to the railing on the deck and continue to work. By this time she was so sweaty but would not stop!
We then had a visit from a giant labradoodle and Hailey wanted to play with him. She must have been missing her puppies. 

(Oskar the friendly Labradoodle) 

Josh's mom knows me too well. After the open house she had planned for us to build a fire and make S'mores!! My favorite!! I thought it was the perfect time to snap a few fun pictures. Granny and Gramps stayed for a S'more and some snuggling with Hailey. Hailey tried her hand at helping Grandma make a S'more for her Josh and then, my masterpiece! 
 Demolition Derby at the fair
 RV Demolition Derby at the fair

I get cotton candy @ the CCF

We are getting close to the end of our trip and we aren't ready to go home yet. This was really the best summer vacation we've had under the circumstances. Hailey is full of energy and standing on her own, meeting new friends, catching up with old friends. We've been surrounded by family and support and we've even been able to leave Hailey a few times. Josh had his 20 year class reunion, we both went to the Clark County Fair and we even had an afternoon to ourselves to grab lunch together.  We loved being surrounded by so much family. It's going to be SO hard to leave!

Monday, August 26, 2013

Grampa's Truck

Hailey was very into trucks after seeing her Grandpa's 59 Chevy when we were up in Washington. She wanted to sit in it and buckle her seat belt and put her hands on the wheel and "drive." 
Josh and I took the truck for a spin and with Josh not being used to a "3 on the tree" transmission we were jerking and stalling all over the place. I was not enjoying myself, but every time we stopped we'd get comments on how cool the truck was. When Josh's dad drives the truck it moves smooth as butter. 

Hailey's grandpa let us put a vinyl Hugs for Hailey sticker on his back window during Hailey's open House. When Hailey went to IKEA she came back with 3 trucks and a rug that had streets on it. She had lots of fun inviting anyone that came over to come play with her. Lots of fun!

Sunday, August 25, 2013

Cousins and Uncle Brads Pond

On one of the days we were in Washington, Josh's Aunt & Uncle invited us over for dinner with the cousins, grandparent and great grandparents.
Josh's aunt and uncle have an AMAZING backyard. They have a HUGE Koi Pond and frogs galore! Once we were done with dinner the kids spent time by the pond and Hailey wasn't far behind. Hailey's grandma took her over and let her be by her cousins to watch and feed the fish. 

Another special person that joined us was Granny's Aunt Grace! Hailey's great great great aunt. She was happy to join us. It had be over a year since she had seen Hailey and always asks granny how we are doing. 

We always joke with Hailey that she has SO many grandmas! Another granny pictured below with Hailey is actually Josh's mom's brother's wife's mom. Did you follow that? Big snuggles and smiles for granny! LOVE! 

The baby of the cousins below getting a huge hug from Hailey. At least one of them is enjoying this hug! LOL! Hailey and her love for babies. What a good sport.

Having all these kids around really inspired Hailey to be like them. They were running around, going up and down the steps, leaning over petting fish. All things Hailey can't do but wanted to. There would be times when I'd hold Hailey up in front of me and she'd bare weight on her legs and she'd say, "let me go!" "I do it myself!" and I would think, "how do I tell her that she can't?" I would tell her get her balance and I would let go but be right by her. Little by little I could let go and Hailey would be standing by herself. She'd get to the point where she was standing for 10-15 seconds at a time! AMAZING!!
She'd smile and laugh. She was getting to the point where doing this was wearing her out. She'd be tired and a spasm would kick in and knock her down but she was doing it. Everyone would comment on how much they never realized how tall she was. Well she was horizontal for over 8 months then only crawling you don't notice those things. Once she was upright it was a different world. 

Our girl is a FIGHTER! 

****Update to Story****
On a very sad note. On Tuesday August 20th a fire destroyed a part of Josh's Uncle and Aunts backyard. There was a lot that was destroyed and now that picture that was taken with Haiey and Granny in the backyard was probably the last photo that was taken before the fire destroyed it. It was a very sad day to hear about this horrible fire. Josh's cousin took the picture below that shows the extreme damage done. Even though we are far away we want Josh's Aunt and Uncle to know that we are there for them and if there is anything we can do we will! 

On a good note. No one was hurt and their house that was just feet away was spared with minor damage.

Saturday, August 24, 2013

Spending time with Granny and Gramps

I blogged before about Hailey's love for her great grandparents (Granny and Gramps). We tried to spend as much time with them as we could while in Washington. Hailey was crawling all over their house. Granny actually plays with Hailey. On the floor, with toys surrounding them they both have a lot of fun together. Hailey is talking more and more! You could hear Hailey say, "Granny! I neeeeeed you!"
On one of the days we visited, G&G invited us to go to one of our favorite Portland restaurants, The Island Cafe. After lunch Hailey watched the ducks swim by and she'd try to quack back at them. 

One morning Josh offered to take Hailey to go to Starbucks with him. I got her dressed and they left. I thought I'd have at least an hour or more to myself. They were back in 20 minutes. Hailey wasn't wanting to do Starbucks that morning. She was a cranky pants, not wanting anything Josh or I offered. We couldn't make her happy and we were all getting towards the end of our rope. All the sudden Granny to the rescue!! Granny offered to take Hailey for a couple of hours and told Josh and I to go do something together. We decided to walk the mall and get lunch. 2 hours went by real fast.

A major positive thing about if we were able to move to Washington would be having family so close. Especially granny and gramps. To know that if I needed to I could have granny's help in watching Hailey during the day when everyone is at work. Granny enjoys it, Hailey loves it and I appreciate it!

We LOVE Granny and Gramps!

Thursday, August 22, 2013

Family Fun Day - VooDoo Doughnuts

While getting to spend the day in Portland one morning we stopped for "breakfast." One place we went to last time we were here (one week prior to Hailey's biggest episode) was VooDoo Doughnuts! They have some CRAZY donuts at this place. You can smell the yeast, sugar, and BACON all the way from the parking lot. 
Lucky for us it was a weekday and the line was only about 20 people long. Last year at the first location we went to there were easily 200+ people in line. We went to their 2nd location and there were only about 40. This time the line was a breeze! It was warm and sunny out so we opted to eat outside under an umbrella. 

When we asked Hailey which one she wanted she pointed to the Marshall Mathers Doughnut. It was covered in M&M's...Get it? LOL!! So she picked at the M&M's and probably ate about 5. That's a lot for her. She is not a sweets person. Never has been. She never liked cakes, cupcakes, cookies, or brownies. She has always loved popsicles and occasionally ice cream. 

When it came time for me to pick a doughnut I was overwhelmed by the choices. I ended up picking this: 

This is called The Old Dirty Bastard Doughnut. Isn't that hilarious? It is very odd to go up to a stranger and ask to have, "One Old Dirty Bastard please." It's embarrassing and fun at the same time. It has chocolate frosting, crushed Oreos and Peanut butter drizzle. YUM!!!!

Another yummy doughnut was this:

It's the Memphis Mafia doughnut. Not such a fun name to say, but look how delicious it looks! So Good! 
Josh ended up getting a Bacon Maple Bar. The most popular VooDoo Doughnut. It was very good too.  Sweet and Salty. Perfect! 

After breakfast we made our way over to one of Josh's favorite places. The Duck Store. Every time we are Portland this is a must. It's the only place he wants to make sure we stop at. 
(The sunflowers aren't from our Portland trip, they are from a family member that said I needed some sunshine! I love getting flowers! It doesn't happen nearly enough. Thank you Cousin Julia for the Sunshine!!!) 

After eating the doughnuts I thought we would all be in a sugar coma after not having sugar for 45 prior to this but surprisingly after our day Hailey napped on the way home. 

So we sat outside, enjoyed our doughnuts, made it to the Duck Store and enjoyed time together as a family. Memories made. Check! 

Tuesday, August 20, 2013

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!!

Monday, August 19, 2013

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!!


Thursday, August 15, 2013

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 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  

Wednesday, August 14, 2013

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!