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 2, 2015

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! 

Thursday, May 14, 2015

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!

Wednesday, May 13, 2015

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! 

Monday, April 6, 2015

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!!

Tuesday, March 24, 2015

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! 

Walk for Wishes 2015

Last Saturday we woke up bright and early so that we could support Make a Wish Southern Nevada and Walk for Wishes. This is one of the biggest fundraisers of the year and they were hoping to raise $300,000 so that every child that is battling a life threatening illness could get their one true wish. 

This was our 3rd year participating and we hope to do this every year. Last year we had a HUGE team and raised nearly $4000 This year since Hailey had her Pacemaker surgery we've been back and forth to Utah and I didn't think that Hailey would be able to get a team together in time. We still asked for donations and we tried as hard as we could in the time we had to get a team but sadly there just wasn't enough people that wanted to participate. Next year I hope to do better and get another Team Hugs for Hailey started so that we can contribute more. 

Hailey got her own bib and shirt to wear that morning and she wore it proudly.

My little sister and my niece joined us in walking the 1 mile while Josh ran the 5K.

After the walk there was LOTS of fun to be had. There were characters walking around, information booths, balloon artist and face painting.

Hailey loved being involved with giving out gifts to the top money raisers with other wish kids.

  Hailey loves being with the other Wish Kids. They are all family.

Hailey has a runner in Florida Ms. Katie that joined our team and ran at the same time we walked. 3,000 miles apart for the same purpose. We also had someone who is also close to Hailey. Ms. Nicole was Hailey's Physical Therapist when Hailey first got sick and she ran the 5K with her son. So sweet of her to join us again this year! 

There was a canvas posted of Hailey when she went on her Make a Wish trip to Disney World. Hailey found it and said, "Hey MOM!! That's me. I was 4!" That was very special to see! 

Once Josh finished Hailey and him went around to see the cool other things around. This was a SWAT vehicle that was HUGE. Hailey is only as tall as the wheels! 

There was also a helicopter that Hailey jumped in to take a photo and long as we promised it wouldn't fly away.

This is one of my very favorite photos taken at the event and posted to the Make a Wish website. Hard to believe that 8 weeks ago Hailey wasn't walking and was having a pacemaker placed on her heart. She's the strongest girl I know and we are so very proud of her! 

Way to go Hailey! We love you! 

Wednesday, February 18, 2015

Hailey's MRI and Pacemaker Surgery Story

I guess it's time to update the blog! I think I'm finally able to. Not just not having time to, that's only part of it. This surgery was a lot for me to handle. I'm pretty sure I lost my sanity for about a week. It was so hard for me to grasp that my daughter needed a machine to help her heart beat the way it is suppose to. On the outside she looked fine, but the inside she wasn't fine. Not at all. Here is how our adventure went:

We were told that within a week Hailey would be having her pacemaker placed in Salt Lake City, Utah at Primary Children's. Prior to the pacemaker we all agreed that Hailey should probably get an MRI done. It's been 2 years since her last and to have an MRI done AFTER a pacemaker would have its complications. So we would leave on Sunday, take our time getting to Salt Lake and spend the night.

During our drive we stopped for lunch and while Josh ran in to pick up some food Hailey had her diaper changed and stretched her legs. Hailey had not been able to walk on her own for a couple of days. She was having ANOTHER ataxic episode. I think I've lost count now on how many she's had. I did know she hadn't had one since July 2014 and then before that January 2014. She told us she wanted to have her turn driving. She thinks it's so funny when she gets to sit in a regular chair and not her car seat. So while Josh was inside and the car was parked we moved her up front to "drive" She had such a smile on her face! #SimpleThings

 We spent the night in Salt Lake and Monday morning we would be checking into the Ronald Mcdonald House which is just a short distance from the hospital. They have a whole new Ronald McDonald House which is amazing! So spacious and comfortable. (more on the RMHC later) We would also head to the airport to pick Josh's mom up who would be accompanying us during the hospital stay and recovery. We picked up Grandma, got settled in, and the next morning would be Hailey's appointment for her MRI. I never get a good nights sleep before any procedure and I never have an appetite either. I'm pretty much a nervous wreak and this is only the MRI!
 Hailey was in such a good mood the morning of the MRI. She didn't know what was going to happen. She knew we were going to the hospital and that she was going to see Doctors. I told her that at the hospital there was going to be nap time but when she woke up from her "Nap" mom and dad and Grandma would be waiting for her.

 Before we left I took Hailey for some "Us" time in the Ronald McDonald house library where we found the cutest spot to sit and read. It was called Eliza's Library. You can read about Eliza's Wish HERE. Eliza was a little girl with Metachromatic Leukodystrophy and she loved books. You very rarely ever even hear the word Leukodystrophy but because of Eliza's wish and library so many more people will learn about it. #Amazing!

 We got to the hospital and had to change Hailey in to her hospital gown and go through pre-op. Hailey had to be put under general anesthesia for her MRI. Usually they can just sedate a child but with Hailey having heart issues they needed a Cardiac Anesthesiologist in case something went wrong they could take care of it then and there and not have to call a code and wait for a team to come in. With general anesthesia she would already be intubated.
 When they were ready for Hailey they asked her what flavor she wanted her "special mask" to smell of. She tried all kinds and in the end said she didn't even want a special mask. Poor thing. I could tell she's starting to get nervous. When it was time to put her under they said we could be with her until she is asleep. She fought the gas mask and started crying and we kept telling her it'll be over fast and that we loved her. We kissed her and she was asleep. Her body started twitching and the look on my face caused the doctor to have to explain her body twitching was not abnormal. He said that they'd be done in about an hour and then we'd see her in recovery.
In the end it only took about 45 minutes which was nice to be surprised and not having to wait that extra 15 minutes but that surprise had also caused me to think, "why are they calling us so early?" The procedure itself went well. Her heart beat did drop a few times in to the 30's but her blood pressure was always good. They never had to interfere. She was awake when we went into see her. She was sitting up and she was crying asking for me. I could hear her as I came around the corner. We gave her hugs and kisses. The nurse in the recovery had orders to discharge once Hailey's numbers were stable, but with her heart needing a pacemaker, Hailey would never be stable with her heart beat in the 40's and 50's. To be stable it has to be at 60+
Hailey just wanted to snuggle her dad while the nurses did what they needed to and take their notes and watch Hailey's numbers.

 We were in recovery for a LONG time! Each time I posted on Hailey's Facebook page she'd get so many well wishes and comments. I showed her all of them and she said she wanted to see all her friends. I gave her my phone and she was so happy to see all the faces that left comments.

 The nurse ended up telling us that there was no way that she'd feel comfortable discharging us with Hailey's heart rate so low. She called Hailey's surgeon that would be placing the pacemaker to let him know what was going on and since we had to be back in 12 hours for her surgery she wanted to know if he wanted to admit her and he did. He ended up coming in and talking to us and I was kind of thrown for a loop. Hailey's surgeon is a different person from her cardiologist who we've known for a couple years now. When I talk to the cardiologist about the pacemaker she made me feel like this was such an easy surgery to happen. She said Hailey will be in a cath lab and we place the pace maker and and she'll be good to go after 24 hours. Then I talk to the surgeon....kind of a different story. Maybe it's the same story just told with more detail.

He said that they would put Hailey under general anesthesia again and then the first part of the surgery will be to test veins and Hailey's blood pressure and decided which way will be the best and which vein would be preferred. Then the second part begins. They would thread leads through the vein in Hailey's right groin all the way up to her chest. They then make an incision on Hailey's chest to place the pace maker and plug it all together. Once it's working they screw the leads to the wall of her heart to make sure it stays in place. The surgery should be about 3 1/2 to 4 hours all together. He even showed us what it would look like. I thought it was HUGE. I was thinking it'd be the size of a quarter! It's closer to the size of 1/2 a credit card and as thick as 2-3 quarters stacked. (Side note: I may be over dramatizing what it actually looked I've been told...)
I was kinda shocked. I didn't hear anything about threading leads through her groin or screwing anything to the walls of her heart when I talked to the cardiologist!! It's too late to turn back now though. The surgeon was great though. He answered all my questions and calmed my worries to an extent. Surgery would be at 8 am the next morning.
 They gave me a "pamphlet" that was more like a short novel on What to expect when getting a pacemaker. I didn't like reading it but they told me to read the book and to NOT google it. That night Hailey slept well even thought her monitors went off approximately every 3 minutes, until I told them that we all know her heart isn't going to be normally and they needed to adjust the monitors. I think I got a total of 3 hours of sleep that night. The morning came fast and it was almost time for the surgery. Hailey asked for an Elsa braid and her and Lambie, we were ready for what the day had in store for us. So I thought.

We were all able to go to the cath lab with Hailey and she started crying again saying she didn't want another nap at the hospital. The nurse saw Hailey getting a bit anxious and told the doctor to give her a little something to calm her. We gave hugs and kisses and they rolled her into the cath lab. The tech told us that they would page us with updates and give us a pager. I gave it straight to Josh to have him be in charge of it. The tech told us to try to go relax, or go eat, that we'd probably hear from her when Hailey's was close to being done.

I decided I needed a shower. They just recently opened a mini Ronald McDonald House at the hospital. It is truly a great place to have access to. They have showers and they provide the towels and anything you need from soap, to toothpaste, to shaving cream and razors.  They also have napping rooms. You can sign up for a room to take a nap in while your child is in surgery and it's a bed that's is quiet and dark. They also have a full chef's kitchen that has a pantry with things for you to cook so you can have a hot meal without having to spend money in the cafeteria. They have computers for you to email or you can just sit by the fire and watch tv.

At the 3 hour mark I assumed they would be paging us to tell us it's nearly over. The pager didn't go off but my phone rang. It was the tech. She said that Hailey is fine but her veins are spasming to the point that they can not thread the leads. She said the plan is to first wait. Giving the veins some time to stop with the spasms and then proceed. If that doesn't work they will try medication. If that doesn't work they have to start over again on her left groin. She then said it'll be another 3 or so hours depending on the veins. UGH! I couldn't catch my breath! What happened? This is suppose to be easy. They never told me this might happen! So we just have to sit and wait...It felt like forever.

Finally we get another call. They threaded the vein. They just had to wait it out. It'll only be another couple hours. We wait and wait and then another call. It's done. Hailey is doing great! We can come see her in recovery. I thought she'd be super out of it but she was pretty awake and cognitive. She was looking around and naming the pictures painted on the ceiling tiles. A 3 1/2 hour surgery turned into 6 hours!
I've never been so happy to see this cute face! I think she's giving me stink eye!

 She wasn't in the recovery room long before going back to her room. She did have to lay flat for a while and she wasn't allowed to lift her left arm. We went back to the room and waited 6 hours before she was given the green light to sit up and she was allowed food. Speaking of food...

At the Ronald Family Room they try to get people to donate dinner every night so parents have a hot meal. This night there was no volunteers. No dinner for the families that were there with their sick children. Josh's mom took dinner on all by herself. She made spaghetti for the whole Ronald Family room that night complete with dessert, brownies. She even purchased some chicken and sweet potatoes and had those available. Josh stayed with Hailey while I ate and then we switched. That night the doctor assured me that Hailey's alarms wouldn't go off and that I should get some sleep. Grandma Brenda stayed with Hailey and Josh and I went down the street to the Ronald McDonald House to sleep. I don't even remember falling asleep but I slept the whole night.

We had our alarms set to wake up and get at the hospital by 7. I know that 's when the nurses switch and then the doctors do rounds shortly after and I wanted to be there for that. It was SO COLD that morning. It think the high was 19 with snow on the ground. This desert rat was freezing. I couldn't even take a photo without shivering!

I really wanted to get a photo of the difference in the monitors for Hailey before and after surgery. Before surgery she was in the 40s - 50's. 40 to 50 beats per minute The doctors told us Hailey was in Complete Heart Block. Hailey will always be pacemaker dependent. They also told us that instead of Hailey having a pacemaker set for 1 chamber of her heart she has a dual chamber pacemaker where one lead is in her upper heart chamber and one is in her lower heart chamber. She really couldn't have waited any longer for this surgery. 
 After the surgery her heart was beating at 120 beats per minute. They will adjust the pacemaker next month and put it in power saver mode? I'll let you know when I know what that is.

We had a few things we wanted to do. 1 thing was collect toys to be donated to the hospital so that other children could benefit. This was a fun project and Hailey loved helping with it. She would see a toy in the donation box and tell me it was for a friend she didn't know yet. I called the hospital rep and she came up and thought it would just be a small box of toys but it was way to heavy for her to carry so we asked Josh to carry it for her.

 Hailey was so happy she was going to be helping kids by giving them toys. It was pretty funny that as soon as we donated these toys someone comes in and gives Hailey a new #Barbie doll.
 We were going to be there the whole day so they put music therapy on Hailey's to do list. This is Hailey's absolute favorite thing to do while at the hospital. The fact the guitarist remembered Hailey was a huge plus, but the fact that they all sang FROZEN songs was the BEST thing ever!! The video is on Hailey's Facebook page if you haven't seen it. I love watching it!

The hospital rep came back with a Thank you note for Hailey for donating toys. It was very nice to get the note.

 The whole day and night went well. No alarms, Hailey had to get some IV antibiotics, we were loaded up with wound care supplies and they were ready to send us on our way back to The Ronald McDonald House. The nurses and the staff are always so great!

Questions just kept popping into my head. They seemed never ending! I asked if this #Pacemaker was similar to a crock pot. Do they just set it and forget it? I mean I can't open her up and look to see if the thing is working. They said that I'll get a machine that will transmit Hailey's pacemaker information to them every 3 months. They told me that it's easy to use and that I wouldn't need any help in figuring it out...we'll see...
There are plenty of things to do at Ronald House. Hailey played #Starfall quite a bit. There were people to talk to, laundry to do, and food to eat. We figured as long as we got the all clear that we would head back to Las Vegas the next day. 

I've talked before about ways to help the Ronald McDonald House. One being POP tops! Josh's parents have a drop box at their store for pop tops and while at #RMHC we had the perfect opportunity to drop a gallon sized ziplock bag FULL of pop tops! So easy to do!

The next time you are at the supermarket or Sam's Club, or Costco pick up some items that RMHC needs. 

Here are a few things: 
The complete list can be found online HERE
It's very easy and it's GREATLY appreciated! The Ronald McDonald House was our home while we were in Salt Lake During Hailey's hospital stay. They never demanded money from us, they helped everywhere they could, they fed us, gave clean beds to sleep on and hot water for showers. It's an amazing organization that is run on donations. Please help if you can. 

 Other then constantly being cold, I really like Salt Lake City, but I was ready to be home. Be in our house, in my bed, with my dogs. I was starting to feel anxious. I never want to hide anything, going through this was hard. I was worried for Hailey and I didn't want her to ever be in pain or discomfort, but there was also nothing I could do to stop that from happening. I wanted to stick to the rules. Hailey can't lift her elbow above her shoulder, no pushing or pulling on her left arm. If I wasn't there to stop her from doing those things I'd get upset at anyone who didn't catch her when I wasn't there. Even going to the restroom gave me anxiety. I keep thinking, "no one can care for her exactly like I can." I know I always do the absolute best. I was stressed and you could see it in how I was acting. I always had tears in my eyes ready to flow.

Josh and I weren't agreeing on everything and if I told Hailey not to lift her arm up he'd shut me down by telling me that what she was doing was fine, it didn't go up all the way. I'm being too over protective. I wasn't going to win if I started a fight because I believed I was in the right and he believed he was right. There were times where it was just too much to handle and I felt like a needed to get away just to cry. I didn't want Hailey seeing me cry but I didn't want to leave her with Josh in case she wanted me. I was down at the kitchen in the Ronald House and someone asked me how I was. Just in general. I don't think she really wanted an answer, she was just being polite. Who knew that her, "Hi! How are you tonight?" would turn into me SOBBING about feeling sad and anxious, and confused and I felt alone.
I was hoping that when I got home I'd feel better. I didn't. The anxiety wouldn't go away.  I've never cared for a child with a pacemaker before. What if I mess up? Cleaning her wound was not something I wanted to do even though I knew I must. Josh was going to go back to work and it was just going to be us and I didn't know if I could do it. I didn't want to tell anyone how I felt, because I didn't want to hear, "oh, you'll be fine! Don't worry!" How do you know i'll be fine and don't tell me not to worry. I had thought that my friends back home would call to see how I was doing or ask if they could bring dinner when we got back or just sit with me if I need them, even offer to take me out of the house. That never happened. It was pretty sad. I totally thought I had more friends here in Vegas. The ones that reached out were all from afar. I can't dwell on it anymore but I also can't forget about it either.

It was time to get back to reality and get out of this cold! We went from 23* in SLC to 63* in Las Vegas! Bring on the warmth! 
 It was going to be hard to keep Hailey occupied and out of school for a few weeks. We always found things to do but Hailey wasn't walking from her ataxic episode and she couldn't use her arm so it was lots of iPad and movies and snuggles. Oh and a conference call with her uncle Adam.

 I ended up getting the machine that I'll be using to transmit Hailey's pacemaker information in the mail. I still don't know how to use it because no one told me when I needed to do a transmission. We go back to her cardiologist in March so I'm sure they will tell me then. The one bummer about this machine is that you need a land line, which we don't have....I'm working on that!
The latest update is this:

Hailey is healing so well! She was never in pain. It was more of a discomfort. She never needed more then Motrin. She has begun to bare weight and take steps again!! I hover over her because falling is always an issue. She has until March 19th to not pull or push or lift with her left arm and I think I remind her of that 20 times a day. LOL! The one thing you tell her not to do is the ONE things she must do!
She saw her scar in the mirror the other day and asked if she was all better yet. I told her, "yep! all better!" She didn't like her scar but it's just another part of the story. I read that scars tells stories. She is smiling and she is happy. I know I'm repeating myself when I say, we want to thank everyone for following along on Facebook and posting comments and well wishes for Hailey. I want to thank all the other moms that left me messages and emailed me. All the wonderful care packages were very much appreciated.
It momentarily took away from the stress of wondering or even fathoming how much this is going to cost or how we will pay for it. I think about it and I worry.

We are still going to try and make this year a great one for Hailey. We know it started out rough but it's only February. Once we are done with what seems like weekly doctor appointments and 2 more trips to Utah before April we need to do something as a family away from hospitals and doctors. Hailey's 7th birthday is coming up in May and she has been talking about it non stop. Every few minutes she'll say, "when I'm sebin..." (she can't do letter V sounds) it's pretty cute. We started back at Therapy and the grandest of all is that Hailey was released to go back to school! Oh happy day. Hailey loves school. The worry I have that I'm not there will never go away though.

So that's the story. The one thing I want to add if you didn't catch it was that the whole time we were at the hospital not once did a neurologist come in to tell us the results of Hailey's MRI. Our cardiologist said that all she read was that Hailey's disease was progressing (which I think we knew) I'm currently working with Hunters Hope to see if they have a neurologist willing to look over Hailey's MRIs and offer insight. More on that later.

Friday, January 16, 2015

Hailey's upcoming surgery is approaching

Once we got back from our Christmas vacation we thought we'd have some time to get back to normal and back on a schedule. Hailey missed school and her friends. She was having a great time in Washington but Josh and I both noticed that something kind of seemed off with Hailey. She just seemed to get tired throughout the day which is very unlike her. Once we got home and she returned to school her fatigue continued and she started getting headaches. 

I received a call from Hailey's cardiologist and she said that she got together with Hailey's team and they felt that with the ways Hailey's holter monitor is reading that we really need to move forward on placing her pacemaker. I had told her that we knew it would probably be with in the next few months. She was silent then said, no no no, we need her here next week! 
I wasn't fully prepared for that. I knew that the surgery would take place this year. I didn't know it would take place within a week.

I think I was prepared to be un-prepared though. While talking to Hailey's team she also suggested a new MRI to be done. Her last one was 2 years ago and it's a lot easier to do an MRI prior to placing a pacemaker. All the doctors are very nonchalant when they talk to you about procedures for your kid. Maybe to make you feel more at ease or comfortable. It's a procedure that I know we have to do, but I don't want to do. Last time Hailey was under anesthesia she completely regressed and was vegetative for a YEAR! Now she'd supposed to be sedated 2 days in a row!? 

I've taken the advice of other parents who's children have also been diagnosed with Leukodystrophy and I have started to speak with the assistant to Doctor Escolar in Pittsburg Pennsylvania. She suggests that Hailey get a current MRI also.

There is SO much to do and so much unknown, and if one more person tells me that their grandfather also has a pacemaker I'll explode! It makes sense that an older person gets a pacemaker, but this is my 6 year old. It's different! **Side note there have been COUNTLESS people who have told me about their grandfather I'm not talking about anyone in particular...Don't take this personally if you were one of them and think I'm talking about you!! LOL! Just for laughs lets not mention this and see how many people comment on Facebook about their grandpas :0) **

I don't know how long we will be in the hospital, I don't know where we are staying (I've called the Ronald McDonald House and I'm working on getting a room there, but it is NOT easy. There are lots of families that need a room and it's first come first serve), I don't know how Hailey will come out of this, I don't know if I bring Hailey's tubes & formula or if they have it. I don't know how much pain Hailey will be in. I don't know if I'm making the right decision and pretty much forcing my child to do this procedure whether she likes it or not, whether she is scared or not. I'm scared and no one says to me that I can back out and not have to make these decisions. These are just the things that are going through my head among other things. My brain has been going non-stop. I feel so overwhelmed that the other night after therapy we get into the car to drive home and I could not remember how to turn the headlights on. I thought I was finally going crazy. It took me taking a moment and some deep breathes and I remembered. It was something that has never happened to me before. I was almost afraid to tell anyone, I didn't want the anxiety of wondering what they were really thinking of me once I told them what had happened. I know I was just super stressed and really needed a moment to focus. I decided to share because these emotions that I'm going through are real. I shouldn't hide them and put on this brave face just for show.

So we will be once again packing up and heading out with no return date given. My mom and sister will help out back at the house with the dogs and Josh's mom will meet us up in Utah, so that we have family and support near by. Hailey will be out of school and therapy for the next few months and I am working on getting a teacher to come to the house for when she is ready. I honestly don't have time to dwell or overthink things. I have to focus. Focus on Hailey and how the cardiologist said this will give Hailey a better quality of life....if she doesn't have any complications with anesthesia...I think Josh and I are both worried about the Hailey that we will get when she wakes up. I remember the last time she was going to be sedated and I just had a feeling that I needed her to tell me that she loved me and I recorded it (I've shared that story before) I kinda want to just take endless videos of her just in case. That isn't me being negative, it's me wanted to be prepared. Expect the worst but hope for the best. I would hate for her to be upset because she was having trouble doing things she could once do. I don't want her to feel as if we took away her abilities. 

I'll have to close up the Etsy shop for who knows how long, but I'll get all the orders out before I do. I'll keep new information up on the Facebook page and the rally page for those who want to follow along. Thank you for following along and your well wishes. We will be seeing you soon!