Category Archives: Special Needs

Special needs ranging from learning disabilities to physical disabilities. (Spina bifida, wheelchair, Tourette’s, learning disabilities, etc)

Home away from Home – Ronald McDonald House Charities

Home away from Home – Ronald McDonald House Charities

If you have never heard of the Ronald McDonald House Charities then you are in for a treat. Ronald McDonald House Charities (RMHC) was started in 1974 through an unlikely partnership between an NFL Team, a children’s hospital and a restaurant chain. Since then, it has grown to be an international charity.

home away from home

Because I am a brand ambassador for McDonald’s I get to talk to you about cool things like the Ronald McDonald House. While I am being compensated for this post, my love of the Ronald McDonald House is all my own. All opinions are also my own :)

History of the Ronald McDonald House Charities

When Philadelphia Eagles Fred Hill’s daughter, Kim Hill, was diagnosed with leukemia at the age of 3, her parents spent many nights at the hospital sleeping in waiting rooms and eating from vending machines. They saw other parents doing the same. Some families traveled for hours to be with their children. Most of these families stayed at the hospital in waiting rooms or on hospital benches as it was unrealistic, and costly, to travel back and forth on a daily basis.

I can relate to these families. When Aloshua was in the hospital waiting to come home on his vent, I was unable to stay with him. The rooms were not set up for parents to stay. Instead, I spent countless hours on a chair beside his bed and relied on vending machines for most of my meals. Not only was it stressful, but it was bad for my health; emotional and physical.

Hill recognized the need for change and along with his teammates, came together and raised funds to help families in this situation. With the support of the team’s general manager and an idea of a temporary housing unit for families of hospitalized children, formed by Dr. Audrey Evans, head of the pediatric oncology unit at Children’s Hospital of Philadelphia, a plan was set in motion.

Philadelphia McDonald’s owners/operators donated the proceeds from the sell of shamrock shakes to the cause. Within no time, the first Ronald McDonald House was built allowing families to stay close to their children while receiving treatment at local hospitals. Since then, numerous other houses have been built with the same idea in mind. There are currently over 300 houses spread out over 30 countries.

Ronald McDonald House Charities comes to Arkansas

In 1980, Little Rock opened an 8 room house to help serve families. Since then it has grown to 28 rooms and serves over 1,000 families each year.

Ronald McDonald House Charities Arkansas Little Rock

What you may not know about RMHC is that they are a non profit organization, independent from the hospitals they serve.  This means that they do not receive funds from the hospital. Instead, they rely on donations. Being McDonald’s charity of choice, they receive a large portion of their funds from there, however even with large contributions from McDonald’s, they are not fully funded. RMHC relies on the community’s support, donations, and in-kind contributions to keep going.

Want to know how you can help?

Are you curious how you can help? I recommend first calling your local RMHC and asking what they are most in need of. Little Rock’s RMHC  just posted a wish list asking for dryer sheets and disinfectant wipes. While yours may not need the same thing, you can get a good idea of what they do need by asking. Here are some other ways you can help:

Monetary contributions – These funds can be used to purchase everything from food to toiletries.
Supper Club – Volunteer time to cook a meal for the families at the house.
Donating – Hygiene products (soaps, shampoos, deodorants, feminine hygiene, etc)
Collecting – RMHC collects soda pop tabs which are then recycled for money.
Toys – Some families stay in the house for months at a time, having new toys lifts their spirits.
Food – By participating in the supper club you can help provide a meal, but you can also donate food and snacks for the families to have in between meals. RMHC does not provide every meal and some families do not have the funds to “eat out” constantly.

Because I lived so close to the hospital at the time Aloshua was waiting for his home vent, I was unable to stay at the Ronald McDonald house, but I saw first hand how much the house helped other families around me. Every year our local house has multiple events for the families staying in the house. I am able to attend some and see how RMHC is helping my community and families in it stay together through some of the hardest times in their life.

If you have a chance, see how you can help support the Ronald McDonald House Charities.

Losh update – 1 year post trach decannulation

Losh update – 1 year post trach decannulation

Approximately one year ago Losh got his trach out. I wanted to give a little post trach decannulation update:

Trach Decannulation Day – June 4th, 2014

The doctor assured us that within a few months the hole would close, and if it hadn’t closed near the 1 year mark that they would discuss surgically closing it..

Immediately post trach decannulation

ENT continued to monitor the stoma and by the six month mark, his hole was still ever so slightly open, but the Dr. decided to go ahead and discuss surgical closure.

Nearing the one year mark.. Hole still open, but only slightly.

Nearing the one year mark.. Hole still open, but only slightly.

Because he was already scheduled for a surgery at the end of April, ENT decided just to tag along with that surgery and close it then.

So, on the 28th of April, Losh had his stoma surgically closed.

In Pre-op waiting for surgery...

In Pre-op waiting for surgery…

In recovery (Click the image to see the VLOG on youtube)

In recovery (Click the image to see the VLOG on youtube)

You can click the image to view the vlog. It goes into a little more detail, but surgery went well. He had some oral work done (sealants, crowns, and a root canal), bronchoscopy, and stoma closure. Recovery didn’t go as well. He was upset because he woke with a bad taste in his mouth and he wanted me. He kept dropping his sats and needed to be put on oxygen. They kept him on it overnight along with an apnea monitor. In the morning, they downloaded the results, took him off of the oxygen (which he kept placing on top of his nose anyway) and told us we could go home!

He is almost 2 weeks post-op and doing really well. There have been no complications. The site is healing up nicely. In a few more weeks he will just be another kid in a wheelchair instead of a “trach kid”.

That is an awesome feeling!

Aybra’s Favorite Things 2015

Aybra’s Favorite Things (2015)

aybras favorite things
Aybra’s birthday is tomorrow. I wanted to give her a birthday shoutout and post a little about her favorite things. According to her, her favorite things are:

Food – steak
Color – red
Name – Dakota
YouTuber – Dan (The Diamond Minecart)
Fruit – orange
Vegetable – carrot
Number – 6
ToDo – hug mommy
TV Show – TDA Total Drama Action
Toy – stuffies

And as a bonus, I asked her if she had a million dollars what would she do with it and her answer was pretty basic. “Buy sweets and vegetables and clothes”.

Dear Readers, if you had a million dollars, what would you do with it?

What’s your super power? – I look good!

What’s your super power? – I look good

I guess you could say I impress people. Or at least, I am often told that people are amazed by me. I hear “How do you do it?” so often that I should just print out a business card of sorts detailing my ways.

What is so impressive you may ask?

I am the mom of a special needs child and I look good (sometimes). Apparently that is pretty impressive to some people. I never really understood why, until I tried to look presentable on some days when time didn’t seem to be on my side and failed miserably because being a “mom” got in the way. Add to it the extra time that getting a special needs child ready entails and it gets downright crazy sometimes.

I am often left with the choice of either fixing my hair or makeup. I hardly ever have time to go all out and do both. This particular day I chose to do my makeup. I don’t even think I dried my hair, instead just let nature take over (and let’s just say it didn’t end pretty).

NYCBigBold Influenster voxbox - I look good - selfie

 

I’m pretty sure I chose makeup because I received the #NYCBigBold voxbox from Influenster and was excited to test the products out. I tend to stick with what works for me and lately that has been Maybelline eye products. I don’t mind trying new things, but once I find something I like, I get hooked.

With that being said, I am trying to learn how to perfect the winged eye look and find my current eyeliner a bit touchy. It is a very fine felt tipped liquid liner. I like it, but the tip is so fine that sometimes it wiggles in places where I don’t want it to go! I end up with messy lines. I was excited to see that the NYC liner in this box had a sturdier tip. (Check out Caitlyn’s blog about her box to see the tip up close.) It is much fatter and shaped differently than the tip I have been using. I thought it would be great, but instead it just means I have an even bigger crayon to color outside the lines on my face. Disappointing! I also found that this particular liner doesn’t work well on my water line. I resorted to using my Maybelline favorite instead.

So, what does this have to do with being impressive? Well, a few days ago we arrived to therapy and I had my hair down and fixed. Let me just say, it doesn’t happen often. One of the receptionists commented on my hair and said it looked good. That ended with me replaying comments in my head that I have received about my appearance.

“Your makeup looks great”
“You hair looks nice”
“Nice outfit”

I am hardly ever complimented on an entire look (hair, makeup, and outfit).. I admit, I don’t dress to impress. I tend to stick with jeans and t-shirts because that is what fits my squishy body best right now. I have never been into makeup like most girls, but sometimes it is nice to be complimented on entire looks. And that lead to me replaying more scenarios in my head where I have been put together from head to toe only to hear

“What are you dressed up for?”

People seem to think that because I am a single mother with special needs children that I am not allowed to spend time on myself or look good, and when I do it is impressive. I don’t know whether to laugh or be offended.

I look Good - special needs mom vs regular moms

I know that non-special needs moms have this issue too. Instead of being impressed when they look good, they are often seen as having their sh*t together. Somebody please enlighten me. Why are special needs moms treated differently? We aren’t any different than regular moms.. we just do things different.

What’s your super power? 
Apparently, I look good when I should look dishelveled.

Do you wear makeup/a winged eye?
I am trying… I suck. Usually one eye looks ok and the other looks really bad. Still learning!!