Wednesday, November 18, 2015
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.
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!
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
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!