New AFOs AGAIN

Here we go again. Hailey has once again grown out of her AFOs and needs to be casted for new ones! She's also out grown her taste in pattern and had picked a more "pre-teen" pattern because she is 11 years old now and she wants to look the part! 

Stay tuned to see what the new ones look like! They should arrive in about 2 week! 

So much testing

Today’s appointments consisted of cardiology, physical therapy, and AFOs. For cardiology we go in every 3 months. Since Hailey has had her pacemaker she has gone into complete heart block. That means her pacemaker is pacing 100% of the time. Usually a pacemaker just kicks in when you need it, if your heart missed a beat. Hailey’s brain doesn’t connect well enough “electronically” to her heart. We go so often just to make sure her heart is strong enough to handle the constant pacing. There was some unexpected news but nothing that we weren’t able to catch and interviene in. There were a few adjustments made and as always we continue to monitor. The Cardiologist feels like we are no longer a step behind but we can not predict how her heart will respond, so constant monitoring is crucial! It’s extremely scary but we trust our Cardiologist.
We haven’t been as diligent with physical therapy since we are constantly out of town. Luckily we have made friends with our physical therapists who are happy to see Hailey “off the clock” or on their lunch break!
Lastly we have been working on getting new AFOs. Those are the braces she wears in her legs to help her walk independently. We had the molds done and sent off and we went in for adjustments yesterday. They will be changed where needed and we will pick them up when they are complete. In the mean time we will find new (and unfortunately expensive) shoes to go with the new orthotics. We usually go into a New Balance store and find Hailey’s new size and then order them from Zappos.com wait until you see the pattern on the AFOs. It’s totally Hailey!
After such a long stressful day we took Hailey to the St. George Children’s Museum to unwind before the long drive home. Post on that to come soon!
That’s the update for now! Testing continues and doctor appointments start up again next week. For now we have the weekend off and I will be catching up on any and all open orders in the Etsy shop! #leukodystrophy#ataxia #leukodystrophyawarenessmonth #pacemaker #disneykid#momblogger

Another year, another pair of AFOs

Hailey had trouble walking after her very first #ataxic episode when she was three. The damage to her brain from #Leukodystrophy has caused a permanent result in Hailey requiring assistance to walk independently. She has been wearing AFOs (ankle, foot, orthotics) since she was 4. She first got them right before her Make a Wish trip. There are some shoes that are especially made for AFOs, but the price is a bit ridiculous (as with any special needs items) since Hailey grows so fast. We have found that New Balance shoes that are in extra wide will fit over the AFOs but they are actually 2 sizes larger then Hailey feet without braces. First Try and just imagine walking comfortably in AFOs that are made of hard plastic for over 12 hours in a day. Then imagine wearing shoes that are 2 sizes too big for you on top of hard plastic that encases your feet? Sounds like a nightmare right? This is what Hailey endures to be able to walk independently. She isn’t the type of kid that wants to depend on her wheelchair but when the pain is too much she will comply. We found that Zappos.com will carry the extra wide shoes online since the New Balance stores NEVER have enough in stock. Zappos For Good shoes can be found on the website (from a desktop, I couldn’t find it in my mobile device) and while those shoes might work, what 10 year old do you know wants plain black, brown, or tan orthotic shoes? While shoes aren’t the only things that aren’t adaptive to medically fragile or disabled children, these extra wide shoes are a start. When Hailey got her pacemaker she couldn’t lift her arm over her head to put on a shirt, and button down shirts got in the way of her g-tube. Even most pants get in the way or press against her g-tube. She’s never worn a real pair of jeans/denim before, not over AFOs. She has a long torso so she needs longer shirts for g-tube feedings so her stomach isn’t exposed, but when you buy longer manufacturers assume you need wider as well and that is not our need. Then socks, lucky we’ve been able to find fun socks to wear with AFOs, but we need more that aren’t soccer socks that are long and colorful. Thank you to Sasha for helping w/shoes.
#zamystylemyway

Disneyland for Christmas!

We decided that the PERFECT Christmas gift for our little Disney enthusiast was a trip to her favorite magical place...Disneyland!! I'm not gonna lie, I really wanted to visit Disneyland at Christmas too, I've never been during that holiday! So we made plans and headed on down. To tell Hailey what her Christmas gift was, I made her a special present that she was able to open right before we left: 

You know me, I love an iron on!! 

We ended up having to leave our house so late in the day that we ended up arriving when it was already dark, but still wanting to head over to the park. Hailey said that she wanted to go on Heimlich's Chew-Chew-Train first so that's where we headed. No one was in line for the 20 second ride so we walked right on! Dad had to sit by himself, but Hailey assured him that next time he could sit by her and I'd sit by myself.

We simply can't go to California Adventure and NOT say hello to our favorite Queen and Princess at the Character Close up! No matter how many times we see Anna and Elsa, Hailey still gets star struck!

A special surprise was taking Hailey to see Santa Clause. Santa at Disneyland knows EVERYTHING. He knows your name, where you are from and even that you wrote him to tell him that you wanted Shopkins...Season 4 by the way! I love this photo of Hailey and Santa!

The next morning was pretty exciting! First we headed on over to Disneyland and while walking to It's a Small World, we found Alice and the Mad Hatter! We've never seen the both of them together so we just had to stop for a photo and autograph!

 We were so lucky to have met up with some of our good friends and leukodystrophy family during our trip. Katelynn's Butterfly Kisses Family showed up to spend a few hours with us that we filled with as many rides as we could. I love being able to meet up with anyone from Hunter's Hope. Love this family, and how I wish we could have met Katelynn before she passed away.

We had also planned to meet up with some of our new friends that took Hailey on a special adventure through Disneyland that was planned specifically for her. I knew it was going to so much fun for Hailey, but it ended up being a MAGICAL day for our girl!

During the Christmas Parade something pretty awesome happened. Jessie from Toy Story was in the parade and found Hailey in the crowd. She stopped, jumped off of the Army man jeep, and came over to kiss Hailey on the forehead!! We've never been able to meet Jessie and this was such a fun surprise. Jessie went above and beyond and Hailey couldn't stop talking about how her and Jessie are best friends now!

Last time we were at Disneyland we had ZERO luck in finding and taking a photo with Mickey Mouse. This time when we found Mickey he had 100% of Hailey's attention. It was so cute to see them interact and hug and when it came time for a photo Hailey insisted all her friends HAD to get in the picture too! This is a great group of people and they made Hailey's day one to remember for a long time!

After our day at Disneyland with our wonderful friends we had to say goodnight but Hailey didn't want the party to end. She wanted to go over to cars land because she said she didn't get to see McQueen and Mater yet. So we headed on over!

Hailey is NOT shy and I LOVE that about her. She likes to introduce herself, introduce mom, and introduce dad by telling everyone that he's 40!

While in line to say good night to McQueen one of his Pit Crew members stopped to talk to Hailey. Hailey started to tell her all about the terrific day we had. Hailey even told her that she has to relax a bit and use her wheelchair because her legs where tired and showed her new friend her AFOs. That led to us explaining a bit about Hailey and then Hailey invited the pit crew to learn more about Leukodystrophy by inviting them all to her Facebook page or as Hailey says "her dot com"

The pit crew had said that McQueen is ready to go back to his garage to go to sleep for the night but if we wanted to we could all walk with him. Hailey was so excited and then even more thrilled when McQueens Pit crew presented Hailey with a mini stuffed McQueen of her own!

As the park closed we strolled with McQueen and Hailey to his garage and the pit crew had told us that it is an extremely rare thing to take a photo with McQueen right outside the CARS ride Radiator Springs Racers (a ride Hailey would LOVE to go on but can't exactly handle right now, but one day she will be able to)
This was such a neat opportunity for us to be able to get to take this photo. It's another of my favorite memories that we were given, by the awesome Disneyland Cast members we've met! We thanked them all, gave out some hugs and also some Hugs for Hailey bracelets as a thank you and a reminder to them of when they made a little girl extremely happy!

The next day we had something very special and fun planned for Hailey. A very close friend of hers had given Hailey the gift of getting to go to the Bibbidi Bobbidi Boutique from Life With LOL : Lauren's Journey. We all miss Lauren so much that we all thought of her the whole time we were there. My eyes always had tears in them as Hailey was getting this fun treat. Thank you Lauren for your sweet gift!

Hailey's fairy godmother in training asked if this was Hailey's first time at the boutique and Hailey automatically said that she came for her Make a Wish when she was 4! Her fairy godmother had asked if she had this much hair when she was 4? I have to give this fairy godmother props for being able to tame this wild thick mane of Hailey's!!

Hailey could not stop smiling! She told everyone that her name is Hailey but she's dressed as Rapunzal!

 When we saw Rapunzal Hailey just had to say hello and show off her hair, nails, and dress to this fun princess!

Then all of the sudden a cast member presented Hailey with this ticket! 

 We were not planning on going to the Royal Hall to meet the other princesses but the ticket was given to us and invited us to go the the Fantasy Faire to do a private meet and greet! It was a wonderful surprise and again...tears from me. How thoughtful that someone would anonymously do this for Hailey! Thank you, who ever you are!

After Hailey's royal treatment I had said that I wanted to check out the Viva Navidad parade over at California Adventure. I am SO glad that we did! We LOVED this mini parade. The music just made you want to dance along. Since music is a huge therapy for Hailey I knew that she'd love it too! Hailey loves to Samba!

We were just in time for the Pixar Play Parade as well. If you guys remember, in October when we went to Mickey's Not So Scary Halloween we met awesome people at Monster's University. We gave one of our favorite MU Cheerleaders the heads up that Hailey would be in the crowd and where. When the MU Cheerleaders came near, Hailey started waving vigorously and low and behold we got the chance to say hello, shake some pom poms, and give a quick hug! It was so much fun for Hailey. She even told me that she LOVES all her new friends! It's such an incredibly special thing for Hailey to even just get a quick hello. We appreciate the time people take for these little opportunities!

 This next part of our story is a little confusing, but so much fun, so stay with me as I try to explain! We were at California Adventure after a LONG day and we decided to get some ice cream (even though it was cold Hailey's dad could eat ice cream in any weather). I get a text from Hailey's Aunt saying that her favorite artist, Artist Abe ,hid one of his drawings over at Disneyland and if we were near by she'd be SO SO SO Happy if we could get it for her. It wasn't just walking over and picking it up, it was figuring out where it's hidden from clues posted on Instagram. My little sister does a lot for us so I figured it would be something fun to do with Hailey for her. We high tailed it across the way to Disneyland and then got a text. The first art piece was found near Star Tours but there is still one more left. It's near Club 33...
I had no clue what that meant, and when I asked a cast member they didn't even know! (they were new) So after trying to get through the crowds with a child in a wheelchair we arrived at the spot, but we were too late! The drawing was gone!
I messaged my sister on Instagram and tagged the artist saying that we tried but we were too late and I even took a picture of us where it was supposed to have been hidden. We were so bummed we weren't able to do this little favor for my sister.
Then I get a message from Artist Abe inviting us to meet up with him so that he could give us another copy of the art that was hidden that we were looking for. He noticed that we really did try hard to get the print for Hailey's Aunt. We were so thankful for such a sweet offer. I ended up telling Hailey that we WON the scavenger hunt after all and she was all smiles.
When we met up with Abe he asked us if we live near by...only about 300 miles away. We told him that we come down often for Hailey since it's her very favorite place to be. Hailey even told him that she likes drawing too and he invited her to get a drawing of her own sketched up. Abe was extremely generous with his time and with Hailey. He wasn't in a hurry and he took his time to listen to her and asked her questions, like what's her favorite ride. She squealed, "SMALL WORLD!!" I told him that's just how she says it...every time! She could go on that ride 10 times and be just as excited the 11th time. We really want to thank Abe for his time and generosity with Hailey. He even posted and tagged Hailey in a photo and helped share our story. It was pretty incredible and in the end my little sister got her print from her favorite artist because of Hailey! Thank you ABE!!

 We had an incredible 3 1/2 days at Disneyland and it was a wonderful Christmas gift for all of us!

Every person we meet or have met becomes part of our memories and they are wonderful memories that I love sharing and blogging about so that we can look back on them. Thank you to all the Cast Members who go above and beyond. Thank you to our friend Kaylee who planned such a fun day with all her friends taking part. We loved the fun adventure that you had planned for Hailey!
Thank you to Artist Abe for being wonderful to Hailey and sharing our journey! Thank you to the Mason family for giving us these opportunities to take Hailey to Disneyland. We appreciate everyone so much it doesn't seem like THANK YOU is enough.

We love that each of you are a part of our story and are a part of our memories that we are making with Hailey!

Best. Christmas. EVER!

3 month trip to Utah. Here is an update

This past week we had went to Utah for Hailey's Rehab Doctor appointment. We go to Utah because there is not a pediatric rehab doctor in Las Vegas. The Rehab doctor manages Hailey's Baclofen medication and she is the one that would administrate Botox in Hailey's calves if needed. When we go we are traveling out of state, and staying in a hotel. Our insurance doesn't help with this cost.  Hailey hasn't needed botox in over a year but she has needed Baclofen. 

Here is what Baclofen medication does: 

Baclofen is used for treating spasm of skeletal muscles, muscle clonus, rigidity, and pain caused by disorders such as multiple sclerosis or Leukodystrophy. It is also injected into the spinal cord (intrathecal) for management of severe spasticity.

This doctor also manages Hailey's AFO's (Ankle Foot Orthotics) In the past we did try to have her AFO's done in Las Vegas and they were done incorrectly EVERY SINGLE TIME! That was unacceptable so the Rehab Doctor handles that as well as the physical therapist in Utah. The last pair of AFO's ended up stretching at the block (the block helps Hailey to NOT hyper extend her leg) this was the 2nd pair that did this. We finally picked up a pair that will help this to not happen again...hopefully.

At the appointment the Rehab Doctor was very impressed to see Hailey doing SO well. Again she took a video to show the neurologist in Salt Lake. I finally had spoken up to let her know that I feel as if the Neurologist in Salt Lake has lost interest in Hailey and her case. I feel as if he is telling me, Your child has a terminal disease, nothing you can do, have a nice rest of your life. Of course he has never said those words to me this is just how I am feeling. I do want her to report what I say to him. I don't feel as if he has listened to my concerns or questions. 

When the doctor and the physical therapist put Hailey's new AFO's on you could really see the difference in her walk. Right now, until she gets used to it, her walking is a little unlevel and she has a very wide gate to be balanced. When she uses her walker she does a lot better. When she walks without her AFO's and without her walker she is VERY unsteady, has a very wide gait, and I feel as if I'm playing catch. She doesn't stay upright for very long without them. These are a very necessary piece of medical equipment. 

During the appointment the doctor really stretches and sees what Hailey's range of motion is. I remember the first time we had went to this appointment and Hailey was SO stiff and she would scream and I hated watching her struggle. Today is so different from 2 years ago. Hailey's range has improved so much. Hailey works so hard in physical therapy and when she goes to horse therapy. We can see a difference.

You can't go to the doctor without getting a prize, but this time I had a VERY special prize for Hailey. Hailey loves My Little Pony and she loves blind bags. Something about not know which pony you're going to get is very thrilling to Hailey. There are toys called Fash'ems. For the most part you can purchase these at a store called Justice, but our store NEVER has these available and when they do they are $5 each when they are on sale!

I happen to have 2 Fash'em capsules in my purse just for Hailey. When I gave them to her for being a good patient the smile on her face was priceless! 

Such a little toy that brings such a BIG smile to my girl. The surprises didn't stop there! After the appointment I surprised Hailey with tickets to see The Little Mermaid in Tuachan. When we did leave the appointment and walked to the car there were puddles of water everywhere! It had rained while we where inside. The weather had called for scattered thunderstorms...Oh NO!!! I had my fingers crossed that would be the end of the rain....

Hailey was one happy girl when we arrived at the show. We had excellent seats and right away Hailey started with introductions to all who sat with us. Here is her conversation: 

Hailey: Hi I'm Hailey, This is my mom, mom. Mom, say hi!

Me: Hi! 

Hailey: This is my Josh. Josh is a boy. Josh say hi! 

Josh: Hi! 

She is our social coordinator. I love that she makes friends wherever she goes. You can be 8 months old, 8 years old, or 80 years old. Hailey's going to befriend you.  

The backdrop to the show is AMAZING. You are placed in a mountain. 

Right before the show starts the stage FILLS WITH WATER!! Yes! Fills with water! The music starts and then Ariel pops up. Hailey is frantically waving and is smiling ear to ear! 

Then...we hear Thunder, see lots of lighting, and then it starts POURING rain! On the tickets it says that if the show is cancelled BEFORE the intermission you get your money back. If the show is cancelled after intermission you get a voucher. It is POURING and they just keep on going with the show until intermission and then they cancel it. It felt like an interactive play...

 Due to inclement weather the show was cancelled. I was SO bummed. Hailey just thought the show was over. We were soaked!

One of the people sitting next to us was an instant friend of Hailey's! She is a teacher for special needs children in California and came down with her parents to see the show. It was great meeting her and her family!! 

So we got in the car and drove to the hotel so we could dry off and get to bed. Overall the appointment went great. I'm very glad we finally got Hailey's AFO's correct! I'm bummed about the play and I'm waiting to hear about what our options are going to be. Hopefully we get to see the show in it's entirety but if we don't I know Hailey was content in what she did see. She really loved the music and the characters!

Next time we go we will have to also see Hailey's cardiologist as well as the rehab doctor. The cardiologist ALWAYS makes me so nervous. She is the one person that has not had great news to report back to us. Hailey will need another holter monitor and EKG. She's not going to be a happy camper. 

I better make sure I can get my hands on a few more Fash'em capsules!

That was a quick 3 months

Earlier this month Hailey caught a cold and that little cold had lead to a bout of Ataxia. Hailey wasn't able to bare weight or even walk with her walker. She was extremely weak and it was heartbreaking! As you all know, my daughter is a fighter. She knew she couldn't get up grab her walker and speed around like she could a week before, but that didn't mean she didn't try. She didn't want to hold hands and she continuously lost her balance and we'd have to catch her before she fell. We used our stroller to take her anywhere because in a way if I know she can't get around it's easier on me to put her in a stroller even thought I know not using what she has left will be even harder in the long run. She hasn't been Ataxic since last July and that episode was a pretty bad one. I hate that as soon as we get comfortable with what we are dealing with BAM! Ataxia strikes again!

Hailey ended up needing new shoes for the new AFO's she had received. I have a funny story about someone saying that their orthotics cost $600 a pair and they just look like regular shoes. I told them the orthotics we use cost $4,600 but I'd trade him if he wanted to? NO? Okay then…LOL!! So we went off in search of shoes that 1) fit over the AFO's and 2) that Hailey would like to wear. Thank goodness there isn't a shortage of pink athletic shoes!

During Hailey's Ataxia we continued with hippo therapy. We were told by our Rehab/Osteopath that hippo therapy is THE best proven therapy we could involve Hailey in. Her therapist noticed that Hailey was extremely tired but Hailey still enjoyed her time with Pablo. Thank you to Swigart Photography for taking this photo of Hailey with Pablo and the volunteers!

Speaking of Rehab Dr.'s the last time we were in Utah was November so that meant it was time to head back already. It's not so bad going to Utah I honestly enjoy the short family trips. We appreciate the help people offer with the hotel and meals. Also the community there is amazing! They follow Hailey's page and when they find out that we'll be down they invite us to have dinner. Pepper's Cantina heard Hailey was coming down and invited us to the restaurant. They told us that they'd take care of us and our meal and it was great!

 We want to make sure that they know how appreciative we are for the generosity. Hailey certainly has fun meeting new people and trying to order off the menu. I told her that if she'd eat it, I'd let her order it. We haven't had very much luck in the eating department, but we will keep trying! Thank you Pepper's Cantina! Dinner was great!

Speaking of great! Hailey was a great patient at her appointment. It's not fun to be stretched and pulled and measured, but as soon as Hailey saw the toys in the treasure box she allowed everything willingly. We had Botox on tap, but decided against it. Children with Leukodystophy can be stiff and ridged. Botox helps those stiff muscles relax so they are not in a permeant state of stiffness. We think that with Hailey and how she hyper extends her legs with the walker it would be more harm then help. I had really wanted to show the Dr. how well Hailey had been doing but with the Ataxia days before she had regressed to where she was the last time she was seen.

 After the Dr. gave the okay Hailey headed straight for that treasure box FILLED with amazing full sized toys! Josh and I both had a hunch that Hailey would pick the Play-Doh. She's amazed by this stuff.

We weren't in the hotel for more then 2 minutes before she wanted me to open the Play-Doh. It did keep her busy while Josh and I packed up to head home.

We planned on leaving after Hailey's medication, so that gave us a few hours to spend window shopping. Hailey saw the storefront of the SweetTooth Fairy bake shop and asked to go there (she didn't have to twist my arm!) I personally LOVE the cake bites and Hailey loves the handmade lollipops. This time as soon as she saw the funfetti cupcake with PINK frosting and a gum ball on top she immediately started with the PLEEEAASSSEE MMMMOOOOMMM!!!??? I knew she wasn't going to eat the cupcake. She'd just end up looking at it. I didn't want the man behind the counter to think that I was being harsh by saying no, so I told him that she has a feeding tube and she's not going to eat it. He asked what brought us down and I explained about how Hailey's doctors are in Utah but we live in Las Vegas and I explained a little about Hailey. I think somehow I ended up talking myself into getting Hailey the cupcake even thought she would not eat it. When I went to pay the man behind the counter said that it was on him. Hailey gave him a Hugs for Hailey bracelet and proudly took her cupcake home without ever taking a bite of it.

See what I mean about an amazing community? It's not just where you live either. I know a person I communicate with through Facebook and even though she is going through her own trials she still asks me if there is anything she can do for us or if there is anything that Hailey needs. It means so much to me that she offers this. I wish she lived closer, I know we'd be great friends and a great support to each other. We don't get this in Las Vegas. We get stares when we go to malls and Hailey's in her walker, we get in arguments with people who park in handicap spaces that don't have placards (yes this happens often!), we hear the whispers when Hailey isn't cooperating and cries. If there was a job for Josh is Utah, I'd say LET'S MOVE! They even have Katie Beckette Medicaid! I'm also not saying that Las Vegas is always a pain, just 85% of the time…LOL!

Josh of course wanted to look at the golf store next door. Poor guy, I feel like he's torturing himself. He LOVES golf, but NEVER gets to play. If he's not working, he's at the gym or with Hailey or at an appointment for Hailey. When Hailey was born, he said he'd teacher how to golf. Not saying he couldn't still do that, it'd just be harder then it should be. Hailey would be all for it.

Then before Hailey's medication was due it was nearly lunch time for Josh and me. We've been going to Utah for 2 years now and we pass this "drive in" type lunch spot every time and finally decided to stop! The food here was great! Super yummy!

So that 3 months since the last time we were there flew by and I'm sure the next 3 months will as well. Next trip we'll have to also see the cardiologist to check on Hailey's heart block. In the mean while we have a G.I Appointment, therapy, and of course Hailey's Make a Wish Anniversary, then her BIRTHDAY!! Even though 1 day can be rougher then the next you have to keep moving forward. So that's what we will do. 

Time for new AFO's

Hailey is 5 years old and 4ft tall. She had a major growth spurt or her being more vertical has made people think she's grown a ton. Either way every 6 months we have to get Hailey fitted for new AFO's (ankle foot orthotics) and we are certainly due for them. I think we are pros at the process by this point. The hardest part of getting new AFO's is having Hailey pick what kind of plastic and velcro she wants. TOO many decisions!

 Casting for AFO's is just like putting a cast on a broken foot. I think it's pretty much the same materials even! 

 Measurements need to be taken.

 You have to hold still while the plaster dries. 

 This is the first time Hailey didn't cry. She did give the tech a sideways look when he had to cut the cast off. 

After the appointment was done Hailey asked for a lollipop. They have a lot of patients with diabetes so there are no lollipops at the office. BUMMER!
The AFO's should be ready in about 3 weeks. I'm hoping they will be done earlier so we can break them in and take them to the Walk for Wishes event. Right now the braces she has are way to small and I hate forcing her to wear them. She doesn't complain but we are going to try and only wear them when we HAVE to. Without her AFO's Hailey points her toes like a Ballerina and it's 10x's easier to get cramps and spasms. You can see in the photos that her foot is pointed when her shoes are off. This time we went with stars instead of hearts on the braces and we went with blue, purple and of course PINK! I'll let you know what they look like when we get them!