Celebrating Halloween all October LONG!

Hailey and I (Mom) really LOVE Halloween! This year we decided to take Hailey to Disneyland with our season passes and check out Mickey's Not So Scary Halloween. Combining two things we love, Halloween and Disneyland!! I think the first week in October was when we kicked off Halloween festivities and it really did last ALL month long! 

 Disneyland was amazing as always and being October it was HOT outside! It always takes us a few days to do Disneyland and we still never do everything we plan to do. We take LOTS of breaks and we can't be in that sun for long periods of time with Hailey, so often we take turns standing in line while the other parent is with Hailey in the shade or in the AC "shopping." This place puts Hailey in such a happy mood. She is giddy with everything she sees and does. 

 This was our first time checking out the Halloween Party at Disneyland and it was pretty incredible, but I have to be honest...There is absolutely NO way to do everything in the short amount of time you have. We really wanted to see characters but the lines were SO long that it's hard to wait in line for an hour for one character! We didn't even get to see Mickey Mouse! There was no way that we were going to get to see them all and that was a bummer, but we did our best taking turns in lines and luckily it cooled down at night so that Hailey could sit in her wheelchair and wait. I just think it's harder on a medically fragile child since there is so much more that goes into taking a child like Hailey. There is only 1 first aid station where we can take Hailey to change her diaper and going back and forth multiple times is exhausting and time consuming. So glad we have such a great relationship with the cast members that they see us struggling and offer to help. 

 Hailey could go to Disneyland everyday and never get board but we had to head back home because Halloween wasn't done yet...

 We planned different activities throughout the month and one activity we planned was making Halloween masks with Grandma. Hailey is all about sparkles and glitter and coincidentally so is grandma. 

 Pumpkin carving is out of the question so we put Mr. Potato Head parts in our pumpkins. Hailey thought that was a great idea and loved looking at her creation all month long! 

 I asked around to see where all the Free Halloween events were and Josh was nice enough to take us to each one we wanted to go to. There were a LOT! One event we went to Hailey got ANOTHER pumpkin and she was thrilled! We sure did get great use out of her Halloween costume! 

 Another activity I planned was Halloween treats. We had lots of fun making treats but we weren't going to eat any of them so we packed them up and gave them to Hailey's Therapists and they enjoyed them. 

Hailey's favorite event was one she was able to go to with her cousin. 

It's not Halloween without the Boo Bash at the Chocolate factory. What child doesn't LOVE trick or treating at a chocolate factory. Hailey loves m&m's! 

Hailey had a ton of fun the whole month of October and I was having fun dressing her up and seeing her smile. Yes I tend to go a bit overboard but why not? I don't mind it and Hailey loves it. It's all about memories! 

EEG & Cardiologist news

Hailey has been complaining about being dizzy at school so I made an appointment with the local neurologist and also an appointment in Utah with Hailey's cardiologist to check things out. 

We started off with the neurologist suggesting an EEG for Hailey. We haven't had one in 3 years so I suppose we were due. When Hailey had her MRI in January they checked on her "Grey Matter" and didn't find anything alarming.

 Hailey was fine if I was with her during the EEG but if I stepped away she'd start to cry so they let us bring the iPad and all was well as we watched Frozen! 

The EEG didn't show anything that would cause concern and the Neurologist suggested seeing the cardiologist so off to Utah we went! 

Going to Utah is a monthly event for us. I think November and December will be the only months that we will NOT be going to Utah. It's so expensive for us to board the dogs, spend the gas money, and then pay for a hotel and eating out, but we do what we have to do. 

First they did a quick EKG which isn't very quick because it is so difficult for Hailey to stay perfectly still and breath normal. If we tell her to stay still she tends to hold her breath...LOL!

After the EKG they hooked up the pacemaker monitor and did some readings and the cardiologist was not pleased. 

When we first had Hailey's pacemaker placed it was because her left ventricle was sporadically not completing beats which caused her to be below normal at 59 beats per minute when 60 is as low as she should go. The pacemaker makes up when needed. She was having 2nd degree heart block. All of the sudden we are now being told that Hailey is "Pacing" all the time. Hailey is now in Complete AV (Atrioventricular) Heart Block Disease. Her left ventricle does not have a strong enough underling heart beat that the pacemaker is doing ALL the work. This is a very fast progression of this disease. Hailey's brain is having a hard time sending that message to her heart. 

This is breaking MY heart. I'm usually always in the realm of Hailey's Brain, but now we need to focus on Hailey's Heart. The cardiologist told us that when we see Hailey ataxic and lethargic we need to get Hailey to a hospital so they can check on her heart and make sure the pacemaker is doing what it needs to.  It has certain settings in place. Usually Hailey being tired or lethargic is Leukodystrophy and we just let her be because that's what happens, now we have to take a few extra steps to make sure Hailey is alright. We hate having to go to hospitals but I did hear that if you are there for a heart issue you get to cut the line..?

The cardiologist doesn't want us to limit activities with Hailey because this is about Hailey's quality of life. I think I went into over drive hearing this and planned SO many activities for Hailey. I don't want to think about the bad stuff too much. I just want to enjoy Hailey and have her do fun things so she has memories of that instead of memories of doctors and hospitals. 

Looking at Hailey she looks perfect and she is perfect in our eyes but this stuff is pretty scary and I need to remind myself that we knew this might of been something that was going to happen. The cardiologist reminded me of this but then added, "We just didn't think this would have happened SO fast!"

So that's our news as of right now. The dizzy spells might be a brain thing and it might be a heart thing, but it could also be an inner ear thing or just a random thing. We never seem to get the answers to our original question and we end up with more questions in the end. We were going to see the cardiologist every year after this appointment, but now we will continue to see her every 6 months with over the phone pacemaker transmissions every 3 months instead of every 6.

For now we will keep on doing fun things for our girl and make some extra exciting memories. Some that we've already done that you can check out on our Facebook page! 

New Necklaces in our Etsy Shop!

 We have added a WHOLE bunch of necklaces to our shop!! We will be using the money raised to enroll Hailey into HippoTherapy. Hippo Therapy is therapy on horseback. We've been off for a very long time while Hailey recovered from her pacemaker surgery. 

We got the go ahead and we are crossing our fingers we can attend this session that starts this month! 

Take a look at which ones we have and now we've even lowered the prices!! We have LOTS of new ones and we are excited to send these out! 

Hailey's Shopkins 7th Birthday Party

Sweet Hailey it's your 7th Birthday!!! Let's Celebrate!

When I asked Hailey what kind of birthday party she wanted she knew right away...Shopkins!! What are Shopkins?? You can click here for the Shopkins Website. 

Shopkins decorations that you can buy at the party store don't exist! So it was up to me to get crafty! 

There are no Shopkins clothing items available so I made an iron on for Hailey and it was pretty perfect, and it was pink! 

I was able to find Donut shaped balloons on Amazon and made a donut Shopkin. Hailey was very impressed! *So was I !!*

 An easy, fun decoration was Shopkins Crazy Straws! Easy! 

Through the Icing Smiles Organization we were given a cake that was made by Ms. Renee who we call a Sugar Angel. She made the cake and decorated it just for Hailey. 

More easy and fun decorations were some M&Ms in tube containers with Shopkins stickers (that I printed) Hailey loved the fun, bright colors! 

 I think the main decorations were the Shopkins Blind Baskets that were EXTREMELY HARD to find! I actually had to pick these up at a Target that was 191 miles away from our HOUSE! When Hailey saw this it was like she won the lottery! Such a happy girl!  

Shopkins manufacturer is Moose Toys. Another item from Moose Toys are BEADOS. These were set up as the craft activity for the kids and I've never had the house so quiet! Concentration was a must!

This is a great fun for Hailey who goes to Occupational Therapy. Lots of hand eye coordination and anything that helps Hailey's brain communication with her body is a plus! This was a perfect activity! 

More home made decorations. Balloons and stickers. Perfect! 

I even made a Shopkins cupcake stand with the help of some printables off the Shopkins website. This was a HUGE hit. Some even had Shopkins on top and those were picked first...Whoda guessed? *Wink*

Tablescapes are SO much fun and so easy to do. Here are a few decorations I put together: 

The day wasn't ALL Shopkins. Hailey is really into Tsum Tsums which are just as hard to find but thanks to great family Hailey got one as a gift! 

It's really hard to find shoes for Hailey since she wears AFO's (Ankle Foot Orthotics) and she really loved her Peach's Neet Feet Shoes. I was inspired to give this challenge my best try. One day when/if I ever get to the point where I'm good enough I really want to paint a pair of shoes for Peach's Neet Feet.  These are the Shopkins Shoes I painted by hand for Hailey for her birthday. She loved them! 

Instead of gifts and birthday presents for Hailey we wanted people to help us donate to our local Ronald McDonald House. We collected so much stuff! Lots of toiletries and lots of toys. We spent time at the Ronald McDonald House in Salt Lake when Hailey had her Pacemaker surgery in January and we know they could really use the help and we were happy to be able to do this. 

Happy Birthday Hailey! We love you TONS and TONS and we hope you had so much fun and that you enjoyed your day. We know how happy you are to be turning 7 and we are even happier. You are the most amazing daughter and you give the best hugs!

Hailey's Birthday Trip to Disneyland 2015

Taking Hailey to Disneyland is always amazing family fun! She is so happy the whole entire time. It's a magical place for her and we love that we were able to take her for her 7th birthday. The first thing we did...Disney Jr. Live!!! Last year we went to this show 5 times. It really is one of her favorite shows to see. One of the cast members, Chris, treated Hailey like a VIP and let her pick where she wanted to sit. She was excited to say the least!

Meeting characters is on the to do list. I love how this is so real to Hailey. Getting autographs and photos are such a fun thing for her to do! (I just wish the lines where shorter!) 

There is a new Frozen Sing a Long show at Disneyland California, and we saw this show MULTIPLE times as well!! It was also a lot of fun and the singing was Hailey's favorite part! 

Over at Disneyland there is another Frozen show and this was another MUST on Hailey's list. She hears the music and immediately starts singing! Again all the cast members were amazing with Hailey.

It seems to be a tradition now to have lunch with the Princesses and it's always fun for Hailey to get to Hug royalty. 

Another fun surprise we had for Hailey was that there were a few families that we originally met at the Hunter's Hope Foundation Symposium that we were able to meet up with! We always have so much fun with our Leukodystrophy family. Hailey had lots of Hugs and Kisses for everyone!

We even went on a few rides with everyone! 

Then we all had dinner together! I can't wait to hopefully see everyone this year at the symposium!!

Hailey was very excited when she was able to see Olaf from Frozen! Hailey even wore her Olaf socks with her AFOs. He pointed them out and we told Olaf that Hailey loves hugs too! 

 Anna & Elsa!! They were both great to Hailey and made sure to spend some time talking with Hailey and gave her lots of Hugs! This was so special. Hailey LOVES Frozen...still! 

Hailey had seen some YouTube videos of Disneyland and was determined to go on Dumbo. I didn't think it was a very good idea but Hailey wanted to and so we did. After, she said that she did NOT like Dumbo. I had that song from Tangled pop into my head, "Mother Knows Best." HA! 

It's a Small World was the ride that Hailey would choose 100 times if we let her. She smiled, sang, and pointed at all the dolls saying, "look at that!" 

We've never met Sofia the First before so this was really fun for Hailey! 

While pushing Hailey in her wheelchair we'd end up walking through bubbles that kids where blowing with bubble guns. Hailey laughed and smiled and really wanted one of her own. She got one and she had so much fun with it. Walking through Disneyland through bubbles is 10 times more fun! There is also a really cute video of Hailey on her Facebook and Instagram page of the bubble adventure! 

Hailey was given a button that let others know that it was her birthday and boy did she LOVE the attention! She showed EVERYONE! 

It was another great trip with our birthday girl. Disneyland, Our Hunter's Hope Families, Hugs, and smiles. I love seeing this smile on my daughters face! After the pacemaker surgery she really needed some fun and time away from Doctors and therapies, and school. 

We want to thank the families that gave us this opportunity to do this for Hailey. It was amazing and we appreciate it beyond just saying thank you! 

Easter 2015

Hailey was on Spring Break last week and since we can't go far because of Therapy 3x's a week and a Doctors appointment we had a stay-cation at home just me and her. 

I had a few hands on activities planned, but secretly I hoped we could just sleep in late just 1 time...

Hailey loves to be a chef and this week we did lots of baking! Hailey thought that these cookies with a bunny in the middle were really neat and she could do it all on her own! 

We also planned to have Hailey's cousin over to dye some Easter eggs! 

I discovered that I have never personally hard boiled eggs before...? Every year I say I need to and Josh just did it. This year was my year! 

Dying eggs has always been a very fun activity for the girls. 

We also baked and decorated cupcakes. Hailey does NOT eat cupcakes but I always try to include her and treat her as a normal child. She had a lot of fun decorating but did not like the frosting getting on her fingers and had me promptly wipe it off. 

I also saw an idea on Pinterest where you take pretzels and candy melts along with M&M's and make flowers. I really thought it would have turned out like the photo I had seen. The person who originally posted the activity was not a 6 or 8 year old...what is it called....#PinterestFail

But they had fun doing it and separating the colors of the M&Ms and that's what mattered! 

We joined Hailey's dad at his work for an Easter Egg Hunt the Saturday before Easter and that was also a lot of fun! 3500 eggs gone in 60 seconds...

Hailey had so many great people send her fun packages for Easter. This fun stuff came all the way from New York! 

To top off Easter I had been in contact with an organization called E Bunny and they wanted to make sure Hailey got THE best Easter Basket. Boy did they deliver on that! 

Everything in Hailey's basket was PERFECT! We appreciate this gift so much and would like to say Thank you to E Bunny for getting in touch with us and giving Hailey such a wonderful basket!!

Raising Canes Grand Opening 2015

There are still times when we will be coming from a Make a Wish event and Hailey has her shirt on that says she's a wish kid that people will either give me that sad "I'm so sorry look" or they will actually come up to me and say, "oh how sad..." I decided a long time ago to always take that opportunity to explain to them that it's okay to ask questions and maybe learn and take something away from this meeting. 

I've told people that being a part of the Make a Wish family is something we treasure and that we appreciate. They have helped us in so many ways. We have SO many great memories that involve the Make a Wish foundation. Because of them we are able to go to events with other parents of children that have life threatening illnesses and we can socialize and our kids can play and no one is looking at me with sad eyes saying how sorry they are that we have to go through this. We are treated like a normal family. 

So many people do not know that you are able to be a part of Make a Wish long after your child's wish is granted. They have allowed us to be together as a family and create memories I'll have for the rest of my life. We've chosen to share these memories on Hailey's blog and Facebook page and twitter account so that people can see what we've done, and where we've been and they have an easier way to converse with us. I know it's hard for people to say, "How's Hailey?" because they think Hailey was diagnosed with a terminal brain disease how good can she be... Seeing the things Hailey participates in gives them the opportunity to say, "Hey I saw Hailey got to make pizza with a real chef with the Make a Wish foundation." and we can talk about it. 

I keep trying to think back to before all this happened and I wonder how I reacted when I saw anything that had to do with Make a Wish. Did I think like how I see others? Did I think that it must have been so sad? I don't know, but I do know I want others to know that it's okay to ask us about Make a Wish events we've been to. If they have questions I'll be happy to answer them. 

We consider Hailey to be a Make a Wish ambassador and we are a part of the Make a Wish family and we are happy they have accepted us and helped us make so many incredible memories with our daughter. 

I didn't expect this blog post to start out that way, but I feel as if that is what I needed to say. Now onto the blog post: 

The Grand Opening of Raising Canes North Las Vegas

Hailey was invited to attend the Grand Opening of Raising Canes last week and it was SO much fun. Raising Canes is a supporter of the Make a Wish foundation and gave 100% of the profits earned on the Grand Opening to Make a Wish of Southern Nevada. They wanted to invite Wish kids so that they can meet the local participants and share with their employees a little bit about the foundation. 

Hailey with her hugs made a lot of new friends and we were able to share our story and what it meant to us to have their support. Not only was the Mayor of North Las Vegas there, but so was County Commissioner Lawrence Weekly. 

 Hailey was front and center with the other kids while the CEO of Make a Wish Southern Nevada told a little about what MAW does.

 When it was time for the ribbon cutting Hailey thought the giant scissors were so funny. 

The Owner of Raising Canes, Joe Micatrotto Sr. was extremely kind to all the wish kids and listened as Hailey told him what her wish was. 

 Hailey we are so proud of you and your kind heart! We love how you can make anyone's day better with one of your hugs and your sweet smile. You are one of the cutest Make a Wish Ambassadors that we know. Love you Hailey!