Playing Ice Hockey

Yesterday was such a fun night for our family! I signed Hailey up to participate in a ice hockey activity with the Paralympic organization! Her adaptive PE teacher invited us to attend knowing Hailey would enjoy it. She had SO much fun and even made a goal! It was great to see her be able to “ice skate” and be with other children of different abilities. I (mom) have never been in ice skates before had to learn pretty quick so I could take her on a few laps around the rink. Hailey was hesitant at first but when she saw other kids out there and waving and smiling she wanted to give it a try. We spent about an hour and a half on the ice with smiles the whole time. What a great organization!

Bathtub safety rails

Through Amazon we were able to order some portable handrails for the bathtub for Hailey! It has made a world of difference. This is an example of something I would say is a medical necessity for safety reasons that insurance does not pay for that we have to pay for out of pocket. Thank you to those of you who send us Amazon gift cards to help with this cost. 

For some fun surprises or for gift cards Hailey has an Amazon wish list here: http://amzn.com/w/MYVW5QFJV9ZL

After the EEG

The nurses do a great job about wanting to know your child. They ask about likes and dislikes and try to provide what they can that’ll make the hospital less scary. When Hailey told the nurses that she loved dogs they asked her if they should call for a therapy dog to come visit. Hailey was so happy that a puppy was coming to see her. The therapy dog that arrived was named Ava and right away knew what Hailey needed after that crazy life flight and a 24 hour EEG study. Hailey just needed some calming puppy snuggles. At the end of her stay it seemed that even Ava was sad to have to leave. 
Therapy dogs will come and visit your child at Primary’s, it’s another amazing part of the hospital.

We will check the seizures with an EEG

Once we were all settled in after the life flight crew dropped us off, the EEG was set up and it would run for about 24 hours. It would also audio and video record Hailey during this time. If you or your child ever had an EEG done, you know that the glue/goop they use is pretty though to wash out. We had the help of a nurse tech and after the EEG was done we washed Hailey’s hair. Hailey has the hair of a little lion. It’s so thick and we must have worked on shampooing, scrubbing, and de tangling it for at least an hour, and that’s with 2 of us working on it. With as many people that have EEGs every single day you’d think they’d invent an easier to remove goo. While I was speaking to doctors after shampooing Hailey’s hair with the tech, hailey had said she wanted Anna braids in her hair. The nurse tech was so amazing that SHE braided Hailey’s hair for her! They talked about favorite animals, favorite colors and just had a sweet little spa day moment. This hospital is honestly incredible, but it also takes incredible people to be that way. Our nurse tech was amazing!

Our second flight for life trip to Salt Lake

After Hailey finally really woke up from being sedated after her seizures, the Las Vegas doctors called the Utah doctors and we went back and forth on where Hailey should be treated. Hailey had a bad night with crying, headaches, and vomiting and even though they ordered an EEG to be done the tech just never showed up, it didn’t get done and I think that’s when Utah decided to accept Hailey as a patient. We’d need help though, especially with insurance since the hospital already agreed to take Hailey. Fortunately through the  Hunter's Hope Foundation we have a health care coordinator for the LCN (Leukodystrophy Care Network) I emailed Emily and she took care of everything! In less then 6 hours we were going to have a medical transport for Hailey.
I debated back and forth for those 6 hours if I would fly with Hailey and her dad drive, or if her dad would fly. The last time I did that flight I got SO sick, then Hailey got sick, then there was vomit everywhere. Finally Hailey decided that she needed mom. So I sucked up and went with her. 🤢 then I promised her dad that if we EVER had to do this again it’s all him and I’m driving.
Emily was at the hospital and so was the tech for the EEG. Things were happening NOW! Emily asked me what I needed and she started a list. Besides having the EEG and seeing the neurologist, we will need to see Cardiology and check Hailey’s pacemaker, we needed a referral for physical medicine, a teacher/school note and recommendations, medication counseling and the list goes on. Emily put it all into place. I didn’t have to jump around to find the specialists, they were all coordinated to come to us and they were all a part of Hailey’s team. Thanks to the amazing people and parents who work to put the LCN together our stay at Primary Children’s was going to be so much less stressful. We really want to thank Emily for all her help! Tomorrow I’ll talk about the EEG and how that went.

Seizure Hospital Stay LV day 2

Thank you for all the kind, sweet comments in regards to Hailey. While these pictures are from last week know that Hailey is nearly back to her baseline as I type this. She is weak and not walking on her own with AFOs, but she’s talking and eating on her own. Walking ALWAYS takes the longest! 

While she was unconscious for nearly 24 hours there wasn’t much we could do. I stayed with Hailey while I sent her dad to go home and get some sleep and then bring back anything we needed. The Ronald McDonald House Charities of Greater Las Vegas made sure that the parents in the PICU and NICU had lunch. I want people to know that The Ronald McDonald House doesn’t just help families out of state, which I think a lot of people assume. They will help anyone in the Las Vegas Community that have a child in the hospital. 

We learned the second day that it would be better if Hailey had a medical transport to Salt Lake City where the doctors familiar with her and familiar with Leukodystrophy could take care of her. That’s were the LCN (Leukodystrophy Care Network) comes in. I’ll explain our experience with the LCN and the 2nd flight for life we’ve had to take tomorrow.

Hailey started having seizures

This will be difficult to write, but know by the end things are under control.
Last Tuesday Hailey had 3 big seizures. The paramedics were called and she was taken by ambulance to the Las Vegas Children’s hospital. The seizures were stopped by giving her a sedative. She was unconscious for almost 24 hours in the pediatric intensive care unit. The longest 24 hours of our lives. Very long story short, we had to do a flight for life to Salt Lake while her Dad drove. (More on that later) Hailey is now taking anti-seizure medication for the rest of her life. After stays in 2 hospitals in 1 week we are recovering at home now. Last night was our first night back. Even though I was exhausted I was also terrified wondering “how do I sleep and monitor Hailey at the same time?” I was told the first 3 months are what determines if the dose is correct for seizure management, even though it initially goes by weight. We’ve NEVER had to deal with seizures, but as her disease progresses new things are certain to pop up. We were doing so great for so long! We were NOT prepared for this but now we have to deal with it. Hailey is a bit weak as expected but still smiling and laughing at the silly things we do to try and move forward. We will slowly but surely get into a routine, but the last week has been extremely rough on all of us. August is just not our month, never has been. 

I’ve had the Etsy shop closed while we’re getting back on track but I will do what I can for custom orders I’ve started when I can, but Hailey always comes first.

Getting ready for the Rock the Socks Event

Our experience with the Ronald McDonald House goes back a long way...

When Hailey was diagnosed with Leukodystrophy in July of 2012 she was only 4 years old, and the only place we could go for her medical needs was Salt Lake City, Utah. We currently live in Las Vegas, Nevada. The constant back and forth is financial draining. We were so far away from home and we didn’t know how long our stay would be. We had no family near by and wouldn’t be able to afford a hotel for an extended period of time. Our social worker connected us with The Ronald McDonald House in Salt Lake and  that would become our home away from home for many many visits to come. We stayed at the Ronald McDonald House again that same year in October when Hailey had her feeding tube placed in her stomach. Salt Lake was where all her doctors appointments would take place from then on. In January of 2015 Hailey had surgery to have a pacemaker placed and again we stayed at the Ronald McDonald House. Just knowing that we could be close to Hailey but had somewhere to sleep, shower, and a warm meal at the end of the day was such a burden lifted. I couldn’t even count the number of nights we’ve stayed at the Ronald McDonald House or the number of meals that were made for us and the other families that had children in the hospital like us. We currently have to go to Utah for Hailey’s appointments about every 3 months and we stay at the Ronald McDonald House. We know that we are safe there, we can be together as a family, and we can focus on Hailey’s needs. 

Even though we don’t stay at the Ronald McDonald House in Las Vegas we wanted to give back however way we could. Hailey collects pop tops and asks her family and school to do so too. We’ve donated to the food pantry, and we’ve decorated lunch sacks.  We decided last year that we would cook a meal for families staying at the Ronald McDonald House in Las Vegas for Hailey’s birthday. To not have to worry about where you’re going to sleep, shower, or eat is such a burden that is lifted by the generosity of Ronald McDonald House Charities. Giving back when we can, even if it’s by sharing our story, is the least we can do. 

We will be helping to raise money for our local RMHC soon! As soon as I have the link to post for donations I will do that! 

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

How many times

I can’t tell you how many times I’ve walked into this hospital. I can’t tell you the number of nights I’ve spent trying to sleep in an uncomfortable hospital chair either in Hailey’s hospital room or the waiting room. How many hours I’ve spent waiting on updates from nurses about Hailey’s surgeries, MRIs, and procedures. How many times I have given my daughter to doctors who are really strangers and allow them to care for her during the times when she vulnerable or was unable to speak or care for herself. It’s unimaginable for some and it’s reality for so many. If we didn’t have this hospital available to us (even though it’s 400 miles away from home) I don’t know where we’d be today. The doctors here diagnosed Hailey with Leukodystrophy 6 years ago. They work as a team to try to understand and predict what Hailey’s future, our future, will be like.  Primary Children's Hospital is almost like our second home, and even though I’d love a second home anywhere but there, this is our journey, and these are our memories. You have to try and remember the good and try to forget about the scary. As long as we need to we will continue to make this walk into this building as a family. 

#leukodystrophy #ataxia #whitemattermatters #leukodystrophyawareness #primarychildrenshospital