Thursday, December 19, 2013

Ain't no party like a Make a Wish Party!!

Being that this year was our first year being a Wish Family this was the first year we were invited to their holiday party which was called "Santa's Open House." They turned the Renaissance Hotel into a Wonderful Winter Wonderland! Hailey was first adorned with a candy garland necklace filled with chocolates and sweets! 

 At the door we ran into our Wish Granter!! The last time she saw Hailey was right after we got back from our trip and to see Hailey upright and walking brought such a smile to her face. She was amazed! We all have been!

As soon as you walked in Hailey knew what she wanted to do first, Face Painting!! She picked a pink flower.

 The perimeter had games and gifts for all the children. Hailey loved ring toss! The volunteers would clap and whoop so loud even if the ring didn't make it.

 There was another ring toss and Hailey knew exactly what to do. It was a reindeer round up!

 There was also a Therapy dog! Our favorite animals are the therapy kind! This is Dog Barker and he works with Make a Wish! Such a good pup.

 There was a table that was piled high with Magic Kits donated by Criss Angel! Hailey was seriously so happy to get this!
 She had such a big smile on her face. All the fun and gifts were more then we were expecting!

 There was even a special visit from Santa all the way from the North pole! I think Hailey is starting to warm up to this guy. Every time she sees him he has something for her. This guys is pretty neat!

 Then we did some arts and crafts projects! Hailey loves arts and crafts. She gets that from me. I love being crafty!

 Hailey made a gingerbread house ornament. She was very proud of it! 

 Then the BEST part of the night was we got to see Hailey's very best friend!! Oh happy day!!

 The girls went over to the balloon station where Balloons with a Twist made these awesome balloon sculptures! We got a Snow White and Merida balloon dolls! That is some talent!! They also double as HATS!!

 After dinner it was time to DANCE!! They had a DJ and the kids were out there letting lose and having SO much fun!

 We then went up to our friend Criss Angel and had to pose for a picture. We thanked Criss for doing the PSA with Hailey and donating all the magic kits and following us on Twitter!!

 Hailey had to take her BFF to go and see Santa and let her know that if you take a picture he'll give you a PRESENT! LOL! Hailey and her hand holding. She doesn't let go!

 Time to open the gifts from Santa! 
 BARBIES!! Thank you to everyone who donated toys to the Make a Wish toy drive! 

 Hailey had a special gift for Amanda. Hailey picked out these BFF ornaments at Justice and knew she wanted to give it to Amanda. Every year we have a tree we will put this ornament up and think of Amanda and the great friendship we have made! 

 Cookie decorating station!! 

 You already know that Hailey LOVES decorating Christmas Cookies! 

Hailey and Amanda asked Criss to take a picture in the Winter Photo Booth and he was happy to do so. He even signed each one for the girls. 

It's hard to think that with all we have going on in our lives with terminal illness, medications, doctors appointments, therapy, diapers, insurance and everything else that comes with this territory, that we as parents can say that today was a WONDERFUL day. Seeing Hailey smiling the whole time she was at this party and knowing she didn't feel different and that people were happy to see her and have her there is heartwarming. I think one of the greatest things I heard was from the Make a Wish photographer that said to Hailey, "I remember you!" I love that Hailey makes that kind of an impact on people that he would remember her. I want people to know Hailey and have her in their hearts and remember her. Always. I can't say enough about how important it is for parents to have organizations like Make a Wish available to their kids. They are amazing and I can't ever thank them enough for what they do for Hailey. We feel the love!

Tuesday, December 10, 2013

Macy's Believe Campaign

This year has been very special to us as it was the year Hailey was granted her Make A Wish. Macy's department store is currently running their #Believe Campaign. If you write a letter to Santa and drop it off in a special mailbox, Macy's will donate $1 to the Make a Wish Foundation. They hope to raise $1,000,000.00 yes, one million dollars! The Make a Wish foundation has a very special place in our hearts. 
We wanted to take Hailey down to Macy's to write her letter to Santa and have it deposited in the #Believe mail box. 

 Hailey needed some help writing her letter so we did the hand over hand technique as she told me what she wanted to write.

 After Hailey wrote her letter she sealed it with a kiss! 
 In the mailbox it goes and it'll be off to the North Pole! 

Please consider having you or your child write their letter for Santa and dropping it off at your local Macy's. Help the Make A Wish foundation reach their goal of 1 Million Dollars. I have MANY posts on Hailey and Make A Wish. You can search our blog and read everything I've written. Such an easy way to help an AMAZING organization. 
We also still have PLENTY of spots open on our Hugs for Hailey Team for the Run for a Wish event happening in February. You can sign up HERE or just donate and help us reach our $1,000 goal. To join our team it's best to use a desktop computer when signing up. 
There is also time left to donate a new toy at a local Bank of America's here in Southern Nevada. Have you all seen Hailey's PSA with Criss Angel? 

Thursday, November 28, 2013


I got another call from my insurance advocate the other day. Usually when she calls I try to get the conversation over with as soon as possible. No offense to her, but having to dredge on the awfulness of Hailey's disease can be tiresome. I decided to stay on the phone a little longer this time. She had noticed that I wasn't as crass as I usually am, I was almost chipper she told me. I said that at this moment things might not be GREAT but I'm where I can handle my situations without being bitter. When she asks the same question she asks every time we speak (How's Hailey) I change my answer this time. I tell her, "you know, I have this online diary that is Hailey's website and I journal everything on there. Why don't you take a look?"

I want her to KNOW Hailey and not just know us as a name on a file that she's required by her job to involve herself with. If she's going to do her job, which is to learn and help my child, she'll need to know my child. Look at a picture of her, see how hard she works in therapy, see how much fun she has at school, see us having to go to Utah every 3 months for Dr. appointments. Read about how I felt at different times in our journey. I gave her our blog name and told her that it's her choice whether she reads or not, but if she wants to know "How's Hailey" she'll read.
I often pass on Hailey's blog to complete strangers. A few weeks back we were in Target and Hailey had a melt down. Kids have melt downs. Instead of entertaining her melt down we decided to leave Target with Hailey kicking and screaming. An older couple passed by and said to one another, "looks like THAT child could use a spanking!" I had 2 choices to make at that point. I could ignore them and continue to carry Hailey's walker out of the store and tend to my child or I could have stopped and given them a Hugs for Hailey card. I wanted SO badly to stop them and tell them, "She doesn't need a spanking. She's a 5 year old that has a terminal brain disease that often causes her to not have control over her emotions." I wanted to SHAME them. I don't know if it would have done any good though.

Sometimes when we are out and about especially driving Josh will Honk the horn at someone who cut him off and yell at the person saying they should think or maybe call them a name.  He drives like a race car driver, but everyone else either drives too slow or they are bad at it in his opinion. He likes to interfere. It's just who he is. We were at Costco getting gas and there was an older man filling his car while standing on the opposite side of the pump. A car wanted to drive down the middle of the lanes but could not because this man did not want to move. Josh explained that there is a car wanting to pass and the man said it'd have to wait until he was done. He wasn't going to move. Josh decided that this man must be told that his decision to stand and block the car trying to get by was basically stupid. I got annoyed that these two grown men had to stand and yell at each other. Call each other names. They don't even KNOW each other. The man thought he was doing nothing wrong. Josh thought that telling this man what to do was going to change his way of thinking. Neither of them gave in. They both thought they were correct. I wonder every time this happens why Josh thinks he can change the way someone acts or thinks. If you honk at someone who cuts you off does that mean they will never ever do that again? Do they even care you honked? If someone litters and you call them out, but they continue to walk away and obviously don't care what you think, will they never litter again? If I would have said what I truly thought to those people who thought Hailey needed to be spanked, would it have changed their opinion the next time they see a child having a melt down? I dunno…

Is it apples and oranges? Is Josh starting to rub off on me? I don't want to be the type of person that needs to have everyone thinks my opinion is the correct one, but I have to make a choice of what I'd do as a person. They may not want to know about Hailey, but I tell them anyway.

You never know what's going on over on the other side of that fence, with all that grass that is so green, right?

I was looking at video of last years Thanksgiving. It was only about a month after Hailey had her g-tube placed and she was lying on the couch downstairs and we all took turns sitting with her while others ate. I didn't know what I was thankful for then. She was hooked up to a machine that was going to be feeding her while we were all eating turkey, stuffing and pumpkin pie.

One year later and things couldn't be more different. Hailey will get to sit with us at the table. She'll get to taste the food everyone else is. We will be together.

I may not always understand what or why something is happening,  and I may always over think every little thing, but it's nice to know I can come here and write. Express that I'm thankful for my daughter and the lessons she teaches me on more days then just one.

I'm Thankful.

Tuesday, November 19, 2013

Ronald McDonald House - An easy way to help!

Yesterday we had a Dr. appointment for Hailey in Utah. Luckily we didn't have to drive ALL the way to Salt Lake. Even though we love SLC it's a very hard trip for us to make. Over an 8 hour drive that we have to split up over 2 days. Last year when Hailey was hospitalized at Primary Children's Medical Center we were able to stay at The Ronald McDonald House for many many days. The day she was officially diagnosed we stayed there as well. I remember them telling us depending on the day that if we could pay either $10 or $15 for our room. If we couldn't afford that there would be no cost at all. Ronald McDonald House Charities (RMHC) became our home away from home.

If you want to help RMHC there are many things that you can do. One of things we have been doing that I've blogged about before is to collect the pull tabs on aluminum cans! It's an easy and much appreciated thing to do.

If your work place has a break room where you can put a collection box please do so! You can also see if your employer is part of the Donation Match program where they will match your monetary donation.

I made my own collection box and it was extremely easy to do. If have been inspired to put one either in your home or your work please let us know!

Friday, November 8, 2013

Make a Wish Day at Rally Cross

If you follow on Facebook or on Twitter you know what an exciting day we had yesterday!! We were invited by The Make-a-Wish foundation to spend the day at the rally car races and along with that we were able to have breakfast with Tanner Foust and he also took for a spin in his car around the racetrack. This day turned out to be way more then I thought it would be. Hailey loves meeting new people, making new friends and sharing her story. I love that she makes such an impact on people that she meets. 

Before breakfast was served Tanner met with the Wish kids, and upon Hailey's turn she gave him a Hugs for Hailey bracket that he put on right away! So sweet of him!

She had lots of fun posing for the cameras (and there were a lot) with big smiles and her arm around Tanner. Hailey loved having her "special necklace" that she did not take off ALL day! 

Josh and I loved seeing how much fun Hailey was having and I think Josh was secretly getting his Make a Wish getting to meet Tanner. Josh is such a car nerd! :0)

Tanner was so personable. Sat right down, talked about anything, had breakfast with the kids. The kids were honestly too excited to even eat. They were running around all over! 
 Tanner took the kids down to the track for a ride along. Hailey wouldn't go by herself so we all hopped in the car! 

After 2 laps around the track we where told to go WHEREVER we pleased. Our credentials would allow us in the pits by the drivers or in the private suites. We took a walk around to see the other guys! While walking around we met John, the owner of Smoke'n Sams Bar-B-Que. He invited Hailey, Josh, and me to have lunch. He said, "you order ANY thing you like!" Thank you John! 

 This little girl with Hailey had become Hailey's new best friend. Her name is Amanda and she had the sweetest heart. She hugged on Hailey and played with Hailey and they never left each others side. Amanda's mom and dad were also there, and I really loved talking and getting to know this family. I talked non-stop to Amanda's mom. It's so great to communicate with someone who knows exactly what you are going through. Thank you Joann!! 

 Another person who we owe a huge thank you to is Kate (pictured below). She works for Global Rally-Cross and worked with the Make a Wish foundation to put this whole thing together. She has a passion for giving back and working with charities close to her heart. She worked so hard and I want to make sure she knows that she did an AMAZING job! Thank you Kate! 

Hailey's adrenaline was pumping after that ride around the track. The jumps were her Favorite! Thumbs up!! 

Josh thought this event was pretty awesome. It was pretty easy to twist his arm and get him to stay for the whole event and watch the races from the suite. 


While we were in the suite, after lunch, I spotted Brandon and Leah Jenner and I told Joann. She was surprised at how fast I recognized them. I told Hailey that Brandon and Leah sing music, and Hailey said, "They like Hugs for Hailey?" I told her I didn't know, but we can ask. She reached in my purse and got out 2 bracelets to give to them. We went up to them and I introduced Hailey. Hailey handed over the bracelets and gave Leah a Hug. Leah asked if it was okay to post a picture of Hailey on her Twitter account to help spread the word of Hailey and her story. I of course said YES! I was so grateful that Brandon and Leah would do something we appreciated so much. I think we gained 100 likes in a matter of hours. Thank you Brandon and Leah. Hailey loved seeing you wear her bracelets! 

This post could go on forever with details of each driver and how nice they were to Hailey and welcoming her behind the scenes and letting her in the cars and taking pictures with them, but I won't bore you!

Tanner and Kate did not send us home empty handed! Each wish child received a Puma back pack filled with fun things that were autographed. There was another person we were looking for, we knew Rutledge was at SEMA but we didn't spot him at the race. 
 Everything about yesterday was perfect. 

The way people take time to do things for others is amazing. Tracy at Make a Wish, Brandon and Leah Jenner, Kate and Tanner from GRC, you put smiles on children's faces yesterday! I can't thank you enough for that.
I will always cherish these memories!
*Special thanks to Amanda's dad Greg for some of the great pictures he shared with me!

Friday, November 1, 2013

What a difference a YEAR makes.

Last year Halloween wasn't very exciting. If was difficult to take Hailey trick or treating because she was in her wheelchair. Hauling a wheelchair up and down driveways and up and over steps wasn't easy and then we had her feeding tube going 24/7. Then you had the stares, and Hailey wasn't talking and it was just overwhelming and not fun. 

This year things are completly different. With Hailey able to take steps she wanted to go up to the houses and ring the doorbell. She is talking and she said Trick or Treat and Thank you. We only hook her up to her feeding machine during specific times of the day. She was very excited for her costume and to be with her friends to go house to house. When she got tired we put her in her stroller. She was such a trooper, pushing her body to do what SHE wanted it to do which can be difficult. 

Hailey had SO much fun this Halloween! 

 We went to every Halloween Party we were invited to. You have to take advantage of these good moments! 

People forget how tall Hailey is. She was horizontal for so long! 

 Hailey loved her Super Girl costume. She wore it half a dozen times this month! 

 Lots of fun at the School Carnival! 
 Playing games all by herself!
 Loving every moment! 

Last year I didn't expect to ever be able to walk Hailey up to a House for Halloween and have her say trick or treat. I thought my chance was gone. Hailey is always teaching me a lesson.  Whether it's to be brave, to always smile, to be determined, to keep fighting when others tell you to give up, or to be happy when you think there's nothing to be happy about. My sweet little girl has so much knowledge and she helps me grow as a person. I can't thank her enough for being my Super Hero!!!

Saturday, October 26, 2013

A GREAT Friday!

This week Hailey only went to school twice. We had a day off for parent teacher conferences, a day off for teacher in service and a day off for Nevada day! We still had therapies and a full schedule adding in a night of Trunk or Treating on Thursday!! So here is a look into what our Friday was like:

Hoping Hailey would sleep in on our day off I was thinking when I woke up it had to be about 8 am, but I looked at the clock and it was 5:45am. She doesn't even wake up that early for school! Why do kids do that? Josh went off to go to the gym and Hailey and I got ready for our busy day.

First up on our schedule was Physical Therapy. This was our 3 time this week at PT and Hailey was a bit of a cranky pants when we went last. So cranky, she didn't want to listen to her therapist and lost privileges to get to ride the big pink bike. We talked about listening and if she was good she'd get to ride the bike today. Hailey said she would listen. I was skeptical but very please to see she DID listen and earned riding the Pink Bike!

After PT we had another appointment. We headed over to the ValPak offices and we were presented with our check for $10,000 from the Reasons to Save contest we won!!! Hailey and I also got some pretty flowers and we had our pictures taken. I'm sure I'll post again when those photos go live! I've always wanted to get a GIANT check with my name on it and I DID! We had a lot of fun meeting the people behind the contest and sharing Hailey's story with them! Thank you again to everyone who voted and helped us win this!

LOVE Flowers!!

Then Hailey's grandma who works at the Mars Chocolate Factory here, invited us to attend their family Boo Bash Party. Let me tell you, there is no Halloween Party better then one thrown at a Chocolate Factory!! Chocolate. Every. Where.

There were also games where the prizes were full size M&M's, Starbursts, Skittles, Snickers, or 3 Musketeers bars! There was face painting, a hunted house, pumpkin walk, arts and crafts, and then everyone leaves with a Halloween bag STUFFED with MORE Mars Chocolate!! The bag was so heavy it made Hailey lean to the right so Josh had to help so she didn't timber over. LOL!

There was a booth for cotton candy, popcorn, bounce houses (Which we had to hide from Hailey so good thing they were in the back). There was a haunted house, and guess how many M&M's in a jar game. The answer was 1296. I guessed 1224...So close!

Take the picture below and times it by 10!! So much candy! A chocolate lovers paradise!

So that was our Friday. Hailey getting to ride the pink bike in PT, getting a GIANT check, then a Party at a Chocolate factory! It was a Great Friday! 

Friday, October 18, 2013

ValPak Blog Post

Part of the 10,000 reasons to save contest required the winner to write a blog entry that would post on the social media channels for ValPak. I turned in my entry and it went live! If you would like to read it (it's different then my original essay entry) you can do that here:

Tuesday, October 15, 2013

Spirit Therapies Event- Therapy on Horseback.

This past Saturday we attended a fundraiser for Sprit Therapies. I loved being able to get Hailey all gussied up for the event. She even allowed me to curl her hair! <3 
After I dressed her for the event in her plaid cowgirl shirt she posed for some pictures! 

I'm not crafty enough to make cute hair bows, I leave that to the professionals, but I needed just the right hair accessory for the night so I ventured out of my comfort zone and put this together for the night! I loved it! 

Once at the event Hailey mingled. I think that was her favorite part. Either that or the dancing. She can go up and talk to anyone. I had to learn to talk to people. Hailey was born with this ability. She loves meeting new friends. She used her walker the whole night until it was time to go home. It was passed her bedtime and she was tired! 

Hailey was all about the smiles that night. We got so many great pictures that night. The one below is my absolute favorite!

I was even able to get a picture taken with my favorite little girl. That NEVER gets to happen. I'm always behind the cameras. Sometimes I think people forget that I exist.

There was a great fancy dinner, raffles, silent and live auctions all to benefit Spirit Therapies!
We love being apart of the Spirit Family. When we first started going to Spirit for Hailey, things were very different. Josh had to push Hailey to the ramp because she was not able to walk to or up the ramp. She used to hunch over and she needed support holding her torso up. She used to cry and scream. The weeks went on and slowly things changed. Hailey soon held herself up nice and tall. She was able to hold on with one hand and extend her other arm out. Pretty soon Hailey could ride with both her hands up. Just recently Hailey has been able to walk up the ramp to her horse Pablo with Josh or Ms. Laurie. Hailey was just given the reigns and uses commands like, "Go!" and "Whoa Pablo." She practices her colors, reaching for flags, and laughs and smiles the whole time. We're so glad Hailey gets this great opportunity to participate at Spirit Therapies. Thank you Ms. Laurie for all you do along with the volunteers and people who donate. Without the donations this couldn't be possible.

 If you would like to make a donation you can learn how far your donation can go. It's very easy to also use PayPal to donate! Check this out:

For $50.00 : Saddle Pads & Blankets, Reigns, Muck and Water Buckets, grooming supplies, 1 lesson.
For $100.00 : Fly Masks, Hay wagon, Feed Tub with Grid, 2 lessons
For $250.00 : Sponsor a Horse, Grain for 1 month, bridles, 6 weeks of lessons
For $500.00 : Ferrier Services, Saddle, 12 Weeks of Lessons

You can Sponsor a Horse like Pablo HERE or HERE.
You can Sponsor a Rider like Hailey HERE.
You can be a Hay Angel starting as low as JUST $10 for the Horses HERE.

If you have any questions you can contact Sprit Therapies HERE.  Consider donating to a great place with great people and great horses! You can also LIKE Spirit on Facebook HERE. Tell them Hailey sent you!

Thursday, September 12, 2013

We are now official.

We would like to announce that our blog is now OFFICIALLY a dot com !! 

Josh's brother Adam has helped us to launch 
We are live and we hope to reach many more people now! To celebrate and help spread the word, I've created a coupon code for our Etsy Shop
Visit our Etsy Shop and check out all the NEW Hugs for Hailey necklaces just in time for the holidays and new items from our shop staff, HRG Designs. HRG Designs has created new and one of a kind items JUST for Hailey's Esty shop!! Thanks HRG Designs! We appreciate you helping Hailey! 

Use Coupon Code DOTCOM and get 20% off your order until 9/14 PLEASE SHARE!!

Wednesday, September 11, 2013

Bubble Wrap

With Hailey wanting to use those legs of hers to her fullest ability, we've given her the walker we got from the hospital back in January 2012. (The second time she lost her ability to walk) She didn't exactly remember how to use it. The first thing she did after we told her to hold her walker to walk was, pick up the walker in both hands and walk while literally HOLDING her walker. Silly child! 

I think she's got the hang of it now. She also has a walker she uses at school, and she really gets around. She isn't totally dependent on the walker, she still lets go and tries to walk on her own. When she is tired and still insists on walking we put the walker by her so she can use it. 

With this new "freedom" comes new anxiety for me. If I could wrap Hailey in bubble wrap so that when she fell down she wouldn't get hurt I would. I walk behind her with my arms in the "Ready to Catch You" position.  Sometimes she doesn't want to hold my hand and she wants to do it herself. Which I'm glad for the sense of determination and will but, I can't let her go on her own just yet. I don't even remember what is what like when I didn't have to watch her like a hawk.

I remember when she was a tiny baby and we didn't know of this scary Leukodystrophy word, and I would think to myself while looking at her perfect face, "How am I going to let you drive a car all by yourself one day?" "How am I going to let you go off to college and not see you every single day?" "How am I going to let you live your own life and possibly only see you on holidays or only a few times a year?" Now that those things might not happen I find myself thinking the opposite. I want her to be able to live her life and drive a car by herself, go to college, and be able for her to live her own life.

 I have to be able to let her do things on her own. If she wants a drink or snack I have to be able to say, "let's go get it." instead of "let me get it for you." If she says she wants a book I have to allow her to get to the walker and go pick a book from the bookshelf instead of me going and getting it for her. She wants to, and I kind of hold her back. Josh is the opposite. He gives her the independence she wants. She ALWAYS wants to help and even though it'll take him 10 times longer to accomplish a simple 2 minute task he lets her help. You can always hear, "I'll help you!" from Hailey.
So even though I can't just sit there and watch Hailey if she's going to fall, I allow her to make those mistakes and missteps and stumble. I show her why what she planned didn't work. We tell her when she falls that she'll be alright and to try again. She's great at crawling and with there being less of the chance of getting hurt if she does it she'd rather walk. We've got to work on those muscles and coordination. I keep thinking if it was me and I was lacking coordination, depth perception, and had muscle weakness and spasms I'd stick to what works and crawl. That's not Hailey. She doesn't want the easy way. The hard way is Hailey's way. Learning to walk again after a year is no easy task for anyone but, if you have the will you can get farther then you think. Just look at Hailey.

Friday, September 6, 2013

First Day of School - Kindergarten

The first day, even week, at school was super exciting for Hailey and super stressfull for me. School was starting on a Monday and teachers weren't at school until the Wednesday before and I know they had things to do and get in order and were going to be busy. I left a message for Hailey's teacher and was able to set up a time to go and meet the teacher. My nerves were all tangled up. It was going to be a new teacher, a new school, new nurse, new bus driver and lots of unknowns. 
When I went to the school and met Hailey's teacher I was able to breath a huge sign of relief. Hailey's teacher was interested in Hailey and listened to all my questions and concerns. She even invited us to an open house so that I could bring in Hailey and have them meet. She asked if there were special treats that Hailey likes, if Hailey get tired fast. Lots of questions that I didn't mind answering. 

There were a lot of kinks that came about that we all had to work on. In kindergarten the kids go all day. That means Hailey will need to have her feed at school and also medication. That means the nurse will have to come in and hook Hailey up and then run the feed machine. Since school nurses are assigned multiple schools, Hailey would have multiple nurses come in to do the feeds everyday that Hailey is at school. So I made sure to be there to show them how to do the feeds and medication. I think that was the hardest part of Hailey going to school. You just have to trust and have faith that your child will be fed on time and that the correct amount of medication is given. You're not there to watch and make sure.  Hailey has no idea of what and how much she needs and I've been her primary care taker for so long. You just have to trust. You have to build a relationship and an open line of communication between you and the persons caring for your child. 

Hailey wants to eat lunch with her friends. There's another problem. Hailey has a feed at school so she IS already fed by the time lunch rolls around. Since Hailey isn't able to pick up a full sized burrito and eat it she would need someone to cut up her food. The school nurse can submit paperwork to request your child's food be chopped or pureed if it's a medical necessity. Did you know that? I didn't.

School lunches aren't cheap. It adds up and quick, and maybe more then half the time Hailey won't eat it all. When you apply for a free or reduced lunch they just ask for your income and how many family members live at the house. They don't ask how much you are spending every month on treatments and medications that aren't covered by insurance, or how much you pay in hotel rooms and gas to take your child to Utah for a simple Dr. appointment that you can't obtain in the state you live in. No medical information at all. Kind of unfair. I spoke to the principal about this issue and we are working together to see what can be done about that.

The previous school Hailey attended had the WORST "customer service" front desk staff ever!! You could walk in and no one would acknowledge you. I never met or even seen the principal there once. The principal had went on medical leave right at the beginning of the year, then had maternity leave and then Hailey had surgery and then the school year was over. She never met or even knew anything about Hailey (That I was made aware of). I don't think she cared. I don't think a large majority of the staff cared even if they did know. The school nurse was incredible and I built a relationship with her. The assistant principal knew of Hailey because she was in on every single IEP we had, but she never offered help to us or asked us if we ever needed anything. There was one time when Josh called the school because of a bus ADA issue and they were quick to help then. I was scared thinking, this is how it is at all schools. When Hailey changed schools for summer it was kind of the same thing. I felt like people were just there to do their job and go. I knew with Hailey being at school all day I was going to be very involved and I wanted to again build a relationship. I wanted everyone to KNOW me and know Hailey.

 When I went to the school to register Hailey I was shocked at how friendly, attentive and helpful the staff at Hailey's new school were! They acknowledged me right away. They kind of knew of me from calling and leaving messages previously. They asked about Hailey and I gave out some cards to direct them to the blog and the facebook page. Everyday that I came in they'd greet me and ask how I was. That never happened ONCE before at Hailey's other school! It happened 4 days in a row at the new school!

I had asked about who Hailey's aide was going to be and had discovered that Hailey wouldn't get a 1:1 aide. That she would get floaters of whoever was available. I didn't like this. I didn't want to train one person how to care for Hailey and then come back to do it all over again when another floater came along. I thought the mess of last year and fighting to get Hailey an aide was behind me. Last year I had to attend school as Hailey's aid and collect data with a click counter and then after weeks and weeks they said that Hailey would have an aide, and we loved that aide, and she cared for Hailey and she went to summer school with us. Imagine how shocked I was when the Instructional Coordinator tells me that Hailey was never assigned a 1 on 1 aide. I can picture myself scrunching my eyebrows and shaking my head, "ah what?"It honestly doesn't make sense to me. I have a child who has special needs, who is medically fragile, in a wheelchair, uses diapers, has orthotics and would need help to wipe her nose, hold a pencil, transistion from a wheelchair to a regular chair and would need to be supervised while in a chair. Hailey needs to have someone there in case she unbuckles her seatbelt on her wheelchair and trys to get out. She needs someone to help her while at lunch to help get her food, feed her, wipe her mouth, and monitor how much she eats. Hailey needs assistance if she's on the floor playing and other kids are acting out and push her over or step on her or take something away from her because she can't defend herself. How can this Instructional Coordinator deny Hailey a 1:1 at school? I was told Hailey would have constant supervision at all times the only difference between that and a 1:1 aid is that the 1:1 is always the same person. One thing about Hailey's diease it that nothing is consistent. You don't know what one day brings that won't be there or will be worse the next. Hailey needs to build trust with people who are consistently in her life. I don't mind her meeting new people but I want someone who is pretty much taking my place while Hailey is at school. They need to know her so well that they can tell when something isn't right. Again, how does this not make sense to anyone but me? Am I nuts?

After Hailey's surgery, when it became time to discuss Hailey going back to school you read about all these laws that are in place for a disabled child to be able to attend school. With those laws in place we are still fighting. I have read about Least Restrictive Environment and my sister reminded me of this recently as she has dealt with similar issues. Here is the definition of LRE taken from Wikipedia:

Least restrictive environment is identified in the U.S. Individuals with Disabilities Education Act as one of the six principles that govern the education of students with disabilities and other special needs. By law, schools are required to provide a free appropriate public education (FAPE) in the least restrictive environment that is appropriate to the individual student's needs.
"Least restrictive environment" (LRE) means that a student who has a disability should have the opportunity to be educated with non-disabled peers, to the greatest extent appropriate. They should have access to the general education curriculum, or any other program that non-disabled peers would be able to access. The student should be provided with supplementary aids and services necessary to achieve educational goals if placed in a setting with non-disabled peers. Academically, a resource room may be available within the school for specialized instruction, with typically no more than two hours per day of services for a student with learning disabilities.[1]Should the nature or severity of his or her disability prevent the student from achieving these goals in a regular education setting, then the student would be placed in a more restrictive environment, such as a special school, classroom within the current school, or a hospital program. Generally, the less opportunity a student has to interact and learn with non-disabled peers, the more the placement is considered to be restricted.

Just reading the highlighted sentence I would think Hailey getting an aid would be a done deal but I was told no. I think I do pretty well at speaking up for Hailey and getting her what she needs, but after this meeting I was in tears. I'm her parent. I'm her advocate. No one will fight for her but ME and I feel as if I am failing. I felt defeated. I wanted someone to tell me how to go about getting what I feel Hailey needs. What more does Hailey not have to be able to do for herself to get an aide that is in the way of this happening? I went home in shock and in tears. I know that the instructional coordinator can only do what she is told or allowed to do. I just think more can be done. I also think she should want to help me get what Hailey obviously needs.

The next day the principal asked to speak with me. She saw how distraught I was with the meeting yesterday. She wanted to help, she said we will work on this together. While Hailey is at school she WILL be safe and she will get an education and she will have fun. I was so happy to hear that she wanted to help Hailey. The principal and assistant principal tell me they check on Hailey everyday. I was happy to hear this. Hailey is at a school where people are going to care and offer to help where they can. This means SO much to me, us. 

Another thing that happens in all day kindergarten is Library, Music, Art and PE. Well one more bump. Hailey can't do PE and PE is 2 days a week. Hailey will be attending either Music or Art in place of PE . When Hailey came home last week she told me "I have Paint at school!"

Hailey talks about her backpack all the time. Her lunch box holds her "refrigerated" medication and a few small snacks. Hailey takes the bus on a 20 minute commute. We've had to change bedtime so she gets enough rest to handle a full day of school. We try to have Hailey ready for bed by 7pm so we can have her up by 7 am. She is still getting use to the chaos of our day. Just because school is done doesn't mean we don't also have appointments ALL week. We still have Speech, Occupational and Physical therapy that we need to go to. We need to see our NUCCA Dr.s. Our day is gone by the time we get home and sometimes I think we are both cranky and ready for bed by 7. Poor Josh only gets about a 1/2 hour with Hailey before it's time for her to go to sleep. Weekends are his. He'll pack up Hailey and her feed and head to the mall to walk around and spend time together. She loves it, but Hailey only wants to go into "Girl" stores. She's like me, not a huge fan of Finish Line or Foot Locker or Dick's Sporting Goods. LOL!

So Hailey had a great first week, I had a rough first week that ended up comforting in the end. I met with the teacher, teacher's aide, Hailey's Aide (even thought they call her a floater) the front desk staff, the Physical, Occupational and speech therapist, the school counselor, the assistant principal, and the principal among others. Everyone that works at this school is great. I don't know what this school year will hold in regards to Hailey's health but I know that she'll be safe and around people who care for her. That's what I want for her.

Monday, September 2, 2013

They said she wouldn't walk. It's been 1 year.

I had this post planned for a long time, but the title has changed at least 5 times. We are coming up on a lot of anniversaries for Hailey. August 6th was 2 years since our first "true" signs of Leukodystrophy and Hailey's first admittance into the hospital with a misdiagnosis. July was 1 year that we were given her diagnosis, October will be 1 year of have her g-tube placed. Then lastly with tears of happiness I can change this sentence:

September would have been 1 year that Hailey has not walked on her own.

To this sentence:

It took Hailey 1 year to be able to regain her ability to take steps on her own!!!

She did it!! We watched her take steps with our jaws on the floor! She has taken as many as 6 steps on her own! We were told that it had been so long since she had been able to walk, and since the white matter that surrounds her central nervous system was basically gone, the chances of her being able to walk again was extremely low. I have to admit that I had my doubts that Hailey would ever take independent steps on her own. I accepted that she would be confined to a wheelchair. When I think back to all the other times she had an episode and lost her ability to do things she always fought and came back. I feel horrible for not thinking or believing that she would fight again. She has more will then any person I know. Leukodystrophy is a heartbreaking and horrible disease that can appear to be more powerful then a human being is capable of handling. It comes in so many forms and has so many unknowns. When someone tells me that they can't imagine having their child go through this I think back to that movie Lorenzo's Oil. (If you choose to watch this movie have boxes of tissue handy) That child had ALD which is a form of Leukodystrophy and Dr.s and family and friends told that child's parents to just let him go in peace. The parents fought and kept fighting even when they had no help & no where to turn. As a family they didn't give up.

Josh and I will never give up on Hailey and I know I will NEVER doubt her strength again.

Hailey wants to walk everywhere we go. She likes to hold my hand and take her steps. Most times it's not feasible, like when we go to a mall, for her to walk the whole time. When we go to therapy we park close to the door and I will ask her if she needs her chair. She will always say, "no, I walk." So I help her walk. When we see our NUCCA it's the same thing, "I walk." Now that she is at school her teacher and her aide allow her to bare weight on her legs and hold hands and walk throughout the classroom. We went to Utah last week to see the Rehab doctor and based on Hailey's last exam they planned on giving Hailey botox injections. When we got there and showed the Dr. that Hailey was taking independent steps she asked if she could record it to show the neurologist in Salt Lake.  She had never seen Hailey vertical before besides when Hailey was in the stander. Even though there were still some issues with Hailey hyperextending her right leg and having her left foot turned out she did NOT end up getting the injections.

Now I don't want to be one of those parents who take this disease for granted. I know what it is capable of. I read about it everyday. If there comes a time when another episode hits and she can't take these steps again I won't feel like a depressed sad puddle on the floor, like I usually do. I will help Hailey work to get back to where she was. If Hailey chooses that she's not able to get there again, I will accept that. I will also be happy for these moments that happen where she can be out of her wheelchair and hold my hand to take steps.

Congratulations Hailey!! We LOVE you TONS!!!!

Sunday, September 1, 2013

Summer Nights at the Baseball Field!

3 weeks ago I received an email from the Make-A-Wish foundation inviting us to attend Make a Wish night with the Las Vegas 51's baseball team. We've never taken Hailey to a baseball game but we both thought it would be something really fun. We also want to try and participate when Make a Wish has events so that we can meet other wish kids and their families.

The 51's invited the kids that attended to go out onto the field with one of the players from the team. Each child got a baseball to be autographed. Hailey wanted to walk so badly with the other kids that they also let Josh out with Hailey so that he could hold her up when standing. 

I LOVE this picture below! It's awesome. Cashman Field took pictures for us parents that were watching in the stands. I talked to some parents as we all watched out special children out on the field with smiles on their faces. 

Hailey was very excited to get her ball signed by number 24. She showed everyone she passed her baseball.
We had such a great time at this game but had to cut it short. Hailey wanted to stand so much she was so exhausted only 4 innings in. It was time for bed. There were only 4 more home games left in the season and we really wanted to take Hailey at least one more time because she enjoyed it so much. One of our followers on Facebook invited us to attend another game one week later. Hailey talked about going all day. She wanted to see "my guy" the baseball player that signed her ball a week earlier.

When we arrived at the field there were a few surprises in store for Hailey. She got another ball and this time signed by the WHOLE team, she got a broken bat, and was able to sit in the front row! What a happy little girl we had. Again, we had to show everyone our baseball!

Who knew a night of baseball could put such a smile on a little girls face? She must take after me, I was one of the official score keepers for my high school baseball team for several years,  and Josh and I always went to games before Hailey came along.

What's a trip to the baseball game without a Hawaiian shaved ice? It was a little warm and sticky out so we all shared a shaved ice. One side pink for Hailey, and green for Josh.

Hailey really wanted to use those legs to get as close as she could. She watched the players and cheered for both teams. She loved the music that played, the mini games in between innings, trying to catch t-shirts and fly balls that flew through the air, and the occasional Cosmo the mascot walk by.

Thank you to Make a Wish, the Dwyer Family, and the 51's for allowing us to have more memories with Hailey. We all really had SO much fun! The staff was great, the game was great and the new friends and memories we made are so much appreciated. THANK YOU!!!!

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.