Friday, August 30, 2019

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.


Sunday, July 7, 2019

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? 

Monday, May 27, 2019

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!

Thursday, April 11, 2019

My opinion on a new Theme Park we tried out

This weekend was the first time we had thought about taking Hailey to Knott's Berry Farm. I've only had one experience with KBF and it was an email communication asking if anyone could answer some questions I had before we spent the time and money going. It was a very short conversation as they didn't really answer any of my questions without suggesting that they couldn't / wouldn't be able to tell me yes or no. Everything was "Up to me" to figure out.

Knott's Berry Farm was never on our radar. When Hailey had her Make a Wish to Disneyworld, we also got tickets to Universal Studios and Sea World. I personally am NOT a fan of Sea World or any theme park that is zoo like. I understand learning from animals and healing and rehabilitation of animals but I watched too many documentaries and it's just not my thing. We went the one time and it was perfectly fine, but we never felt like we have wanted to go back. Disneyworld was awesome and we frequent Disneyland about every 3 months. That place makes Hailey so happy! Universal Studios is AMAZING with kids who have special needs. Hailey could not ride one single ride at Universal but the character experience is what she enjoys.

I had wondered why we never hear anything about Knott's Berry Farm and Make a Wish. I may be completely wrong (This is my opinion after all) but I don't think Knott's has a relationship with Make a Wish to give complimentary tickets out. Them not having a relationship with Make a Wish could make it so that I wouldn't want to go there ever again.

We decided to take a chance with Knott's Berry Farm. All I have known was that they have Camp Snoopy and that should be kid friendly right?? Well...Not exactly.

As you probably know Hailey has a g-tube and she has a pacemaker. She wears AFOs on both legs, she wears glasses, she's developmentally delayed and she's 10. So she loves the little kid rides but she's TOO tall to be able to ride them. Physically Hailey is a taller then average 10 year old but mentally she is about 5 or 6 years old. So while Camp Snoopy did have rides she would love to go on she wasn't able to because she's too tall. The rides she was tall enough to go on were to intense for her and in the end there were not very many rides in the Camp Snoopy area. We tried to see every single show and we rode 2 train rides.

The price point for Knott's Berry Farm would be amazing for an average "typical" child but we just couldn't do much. We are at the point where we can make anything work so that's what we did. We took our time, we walked around, we saw the shows, we talked to the employees, and saw characters.

The one thing that was great at Knott's was you don't have to fight for a disability pass.  It's pretty much a no questions asked type of thing. Well, at least for us. The employee did see Hailey was in a wheelchair. At Disneyland they will try every which way to deny you a disability pass. You really have to argue your way through the conversation to help them understand why your are "worthy" of obtaining one. In my opinion that's Disneyland's one downfall.

In the end if I could decided to go again after what I now know I probably wouldn't spend the money. If I could suggest things to Knott's Berry Farm it would be the following:

*expand Camp Snoopy to include more for kids of different abilities.
*all the rides are outside and they should have at least a couple to get out of the sun
*I didn't enjoy how many times LUCY called Snoopy "Stupid" or a "Stupid Dog" I tell Hailey not to call people stupid.
*They need more companion bathrooms or family bathrooms and they need to inform their employees what those are and where they are located.
*The bathrooms were not constantly being cleaned like they are at Disneyland. I've never been in a dirty bathroom at Disneyland.
*there didn't seem to be a lot of places to cool off. Universal Studios has misting machines with fans going every few feet, which helps a lot!

So that's about it. It's just my experience and my opinion. I thought it might help anyone that's in our situation on similar to know these things or at least have an idea about them. I feel like we went in completely blind and I couldn't find anyone to help me out. Hopefully this gives someone a bit of insight to ask more questions before they pick a theme park for their family.



New items are in the shop!!

We had our shop closed for a few days so that we could update what we were working on! Here are a few of the custom orders we did! 









Sunday, March 10, 2019

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!