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.

How we spent the 4th of July

Where were we on the 4th of July? We were in Ridgecrest, California! Quick little Story time: our very close friends live in Ridgecrest and were having a birthday party for their daughter who Hailey absolutely adores. We decided to make a weekend out of it and head to California. During our drive my friend called me to ask if we’re alright. Confused I say we’re totally fine, we’re about to pull up to the house in about 2 minutes, but I wonder why she’s asking. She said they just had an earthquake! We get to her house and the news was on but everyone was pretty calm. Seemed like everyone had experience with earthquakes. I have not. Living in Las Vegas we will usually get the rumbles from California earthquakes but the last one I experienced was when Hailey was in Second grade, for maybe 5 long seconds. I do remember waking up during the Northridge quake when I was a kid. I thought my sister was shaking the bed to wake me up, she wasn’t.
While we were in Ridgecrest I did experience aftershocks and just those terrified me but what could be done? Nothing. Luckily I had friends there and my friends family there so they kept asking if I was alright. I appreciated their concern because my anxiety was on high. We did stay for a few hours but at the end of the day we headed to our hotel by Knotts Berry Farm. I always have Hailey’s medical Alert bracelet on Hailey and in the car we have the medical alert pads I make. Driving on the road after listening to the news, even though I was worried, I am glad I had it on her. I know I did NOT experience what the people of Ridgecrest and what my friend experienced by any means. They were directly involved. I was just a “bystander.” I still have this great worry though. I keep wanting updates from my friend, I want to watch the news, and I also wanted to get home. We stayed in a hotel for the rest of the trip and we did go to Knott’s Berry Farm (are you thinking we were crazy for staying?) and we did feel the effects of the 7.1 that happened the next day. We are home now, but I’m still thinking about it, and still thinking about my friend and her community. What are the odds that we were where we were? 

Look who had a birthday!

Hailey has turned 11 and for her theme she wanted to have a Jojo Siwa party! This DIY birthday party was A LOT of fun to put together! Here are the photos from our day! 

We want to thank Icing Smiles for helping us out with the cake and Raising Canes for the wonderful food that was of course Hailey's must have item! 

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! 

She believed she could so she did

Congratulations Hailey on Graduating 5th grade! All the times the Doctors looked us in the eye and told us all the things you would not be able to do because of your diagnosis. You proved them wrong!  You can read 56 out of 100 first grade sight words! That's an incredible accomplishment and we know you will just continue to defy leukodystrophy. 

I hope you know how incredibly proud we are of you!

 I made this graduation cap for Hailey and I love how it turned out. Lots of times it's very difficult to decorate a graduation cap. We received so many compliments on this cap. Just remember even though you don't see it on our ETSY page doesn't mean we can't do it!