Wednesday, November 18, 2015

Thank you Ethel M

This year Hailey was invited to attend the lighting ceremony at the Cactus Gardens located at Ethel M Chocolate factory and it was so much fun to be included at this event. 

I wrote earlier how I wanted to plan lots of fun things for Hailey to get our minds off of the cardiologist appointment we had where we were told about Hailey's AV Block progressing and this event seemed like it was going to be a lot of fun! 

We saw our favorite m&m's and we also saw our favorite radio DJ, Mercedes. Hailey and her are BFFs and are have lots of fun together! 

After the event Ethel M gave Hailey a basket of chocolates to thank her for attending! YUM!!!

Thank you Ethel M for inviting Hailey and letting her be a part of this event. She enjoyed the face painting, Christmas songs, and the lights! We thank you for letting us make memories with our girl and hope to work with you in the future. 

Global Rally Cross - Tanner Foust's Biggest Fan

November is when the GRC Finale in Las Vegas takes place and one driver in particular has a special place in Hailey's heart...Tanner Foust! 

Hailey met Tanner 2 years ago when we were invited through Make a Wish Southern Nevada to be Tanner's special guests along with some other kiddos. When Hailey sees Tanner on tv she knows him right away from the autographed posters she has on her wall in her room. 

We didn't have tickets to this years race but I knew this was something Hailey would love to do again. The first time we went it really had a big impact on Hailey and really stuck with her. I had read on social media that Tanner Foust and Scott Speed (The drivers for Volkswagen) were going to be near by where Hailey has therapy and on a whim I decided to stop by after. 

We really don't go anywhere without Hailey making friends and this event was no different. As we stood in line Hailey was getting antsy, it was funny to see her excited for race car drivers. This little girl who loves, pink, frozen, and sparkles and she likes cars. She gets that from her dad. This is not a fluke or sudden thing either, remember how she wanted to go to the NHRA too?

As soon as Tanner saw Hailey walk up he knew her right away! He also could have suddenly remembered her because she was wearing her Hugs for Hailey shirt...wink wink...LOL! He did say that he remember her from the Make a Wish thing though and from our tweets on twitter. 

Of course there were lots of Hugs to give and to prove that Hugs make people happy check out the people in the background in the photo below. They are smiling just from seeing someone get a hug!! 

Hailey loves giving hugs and this hug was because she was given a brand new Tanner Foust t-shirt and she was thrilled!  

 At the meet and greet they had raffles and guess who one tickets to the races....????
 We were so excited to get to take Hailey again this year! 

 Hailey left the event with lots of SWAG! Autographs, tickets, hats, and shirts! 

 Look at this happy girl with her two favorite drivers! 

The day of the races came and Hailey was ready to go representing her driver! Then all the sudden...THUNDER STORM!!! It started pouring, and it was muddy, and so so so cold and windy but we bundled up because Hailey was over the moon excited to go! 

 Now these seats weren't like the VIP seats we had two years ago, and that's fine. These were out by the bleachers with no awning to keep away the rain, but Hailey did not care! In between races we went to the pits and made sure to wish our guys good luck. When we saw Scott Speed he actually invited us to get out of the rain and stand with his crew under the tent! What a great guy! 
 We actually did get great front row seats though. Hailey had to wear ear protection since she's become so much more sensitive to sound which is a common thing with Leukodystrophy kids. Hailey had smiles the WHOLE time and she'd cheer out loud and she really did love this. 
 I love seeing her so happy doing something where you could be crabby about the weather situation and being cold, wet, and muddy. Our happy girl! 
I like this photo. By the end of the races no one had to be reminded who this little race fan was. Everyone knew who Hailey was and that's pretty exciting. I wrote this before but I often think of it as being that: 
We don't take Hailey to meet celebrities, we let celebrities meet Hailey. 

Thank you to everyone who helped us get Hailey to this event. We really appreciate it. We will continue to make memories with our girl every chance we get! 

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! 

Wednesday, November 11, 2015

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! 

Wednesday, September 30, 2015

Time to dust off the blog! Summer Recap

WOW!! It's been a minute since I've blogged! Life is just always SO busy and the easiest things to forget get forgotten. I really didn't even blog about our summer so here is a quick recap. If you follow Hailey on Facebook then this won't be new news.


In June we tried to take Hailey to as many local baseball games as we could. We don't have a professional MLB team but we as a family love baseball either way. We are never able to stay for very long. Hailey's bed time is 7pm and she kinda gets ataxic if she doesn't get 11 hours of sleep. Our friends always make sure that whenever we want to go to a game we have tickets waiting for us. We're very thankful for that! We are always happy to meet new friends and we did that this year! We love that people love Hailey! She makes friends every where she goes!

We also had a special visit from Hailey GREAT grandma who visited from Peru! We were able to play and even go to a restaurant. Spending as much time as we can while she's here! My Aunt who lives in California who is my mom's sister drove down with my grandma and we really appreciate that! Hailey thinks that my mom and aunt look alike and often call my aunt "the other grandma" which I think is super cute!

Hailey is growing and growing and has passed being 4ft tall now! Which means that she needed new AFOs to help those legs of hers! We had to go to Utah too many times to count! I loved how her old AFOs used to fit into her purple converse shoes, but now I'm sad they no longer fit...
 When Hailey got her new AFOs she got some new kicks to go along with them. Without AFOs Hailey wears a 13 1/2 with AFOs she wears a 4 1/2 ! New Balance shoes come in wide widths so we had to go with long as they have some pink we're good.

The movie Inside Out was the GO SEE summer movie for us. Hailey LOVED it. I think it really helped her to understand feelings. We can't wait for the movie to come out. We put it on her Amazon wish list!

We did as much swimming as we could this summer. Every time we had to go to Utah and stay in a hotel we made sure it had a pool!  We were able to find some reusable big kid swim diapers online and they worked great!

This little fish loves the water and even wanted to learn to go under the water since all the other kids were doing it.


I LOVE JULY!!! July is when we get to go to Buffalo and spend a few days with our Leukodystrophy family. I hate that all of the children have to have this wretched disease but I'm so thankful to the Kelly Family for getting us all together.  No regular friend or family member can really know what you go through, but my Leuko family does.

One thing that happened that I really didn't want to talk about was that I had forgotten Hailey's adapter for her g-tube. I had everything else. I had the formula, the machine but the one part that puts it all to use is the adapter tubing. I had forgotten it in the car and we were about to board a plane and I felt sick. How could I forget the one thing that actually puts the food in her stomach and helps give medications?!?

As I panicked I went on Facebook to ask anyone arriving that day if they had a spare I could have and I would send them a new one when we got back. Within seconds I had at least 14 people say they had an extra they would bring for me and then they all told me not to feel bad for forgetting. I was going to the most perfect place where if I was going to forget a piece of medical equipment I wouldn't be stranded and have to scramble to find this item. Such a relief!

Hailey loves being in Buffalo and seeing all her friends, but this year we were going to be missing a lot of them too. So many babies and children had passed in that short year.  I didn't know how to explain it to Hailey.

I love to see her light up and play and hug and mingle with all the children. The ones affected by the disease and the ones that are not. Hailey loves everyone! She doesn't care if you can't talk or hug her back, or if you need suctioning or oxygen. She sees beyond that. She has a pure heart.

 I like this picture because Hailey always wants to help. She helped everyone that arrived register for the symposium!

We love the Kelly Family!! 
So many old and new friends! I can't imagine not going to the symposium now that we've been. Hailey sang again at the talent show and it was great. (Video is on her youtube channel) Our time at the symposium always flies by. Speaking of flying, on the way home Hailey asked the flight attendant if she could help him and he let her! How amazing right?!  She really loved it.
 They even made her a pretzel crown to thank her for offering to help and doing such a great job!

We are already counting down the days until next July!! 10 months to go!!! We really can't thank everyone who helped with travel expenses by purchasing a Hugs for Hailey shirt! There are many expenses that go with traveling. We have to pay for parking at the airport, for putting the dogs in a "hotel" or for picking up snacks or even eating out. We also want to thank the Hunter's Hope Helping Hand Grant Travel Assistance’ program for helping us get to the symposium this year as well! If you are looking to donate check them out at 


In August we were able to travel to Washington to celebrate Hailey's dad's 40th birthday and Granny's 81st birthday. The weather was great and all of Josh's family was together. 
 Hailey helped her dad to blow out all those candles. It was really a two person job! 
 We did our first pacemaker phone transmission while in Washington and even though Hailey looked terrified it didn't hurt and it was easy! 
 Everyone was showing off their Hugs for Hailey shirts! 
 Hailey took advantage of having Grandpa around and loved being read to while snuggling on the sofa! 
 School was coming up and this gift off of Hailey's Amazon wish list made this girl's day so much brighter!! 
 We even had Hailey's great uncle and his wife visit from Brazil!! This was the first time they met Hailey. 
 Our big summer surprise was being invited to the Hello Kitty Friendship Festival where Hailey got to meet Hello Kitty and friends!! 

And to close up our summer we took Hailey back to Utah and we saw the musical Beauty and the Beast! After the show Hailey got to meet the cast and get autographs!

Then it was time for summer to end and for school to start! Hailey is in 2nd grade and still loves to take the bus to school.

See! I told you we've been busy! That was 3 months worth of blogging all crammed in to one post. I know each month deserved it's own but I just never had the time. Now I can't believe it's already October tomorrow!!!

October should be pretty fun! We have a big surprise in store for Hailey and I might actually be more excited then her! We have appointments all over the place. We have to get a new g-tube put in, we are going to visit with a new local neurologist, I'm going to find as many trunk or treat spots as possible, and we go back to Utah maybe twice...

Stay tuned!!