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! 


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! 

Friday, September 21, 2018

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 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