Sunday, June 9, 2013


There are a lot of things that we have bought or were given for Hailey that I would have never known even existed. With the help of friends, family, strangers and the internet we have found the things we've needed. I thought I'd share the information that I have gathered in case someone else out there might need it. Here is what I've come across:

*The items listed below are ones that we use in our home with Hailey. Items listed below have a description of the item and our opinion of the items. If you have a better item or a better price on an item we'd love to know about it!

The oils that I use on Hailey are DoTerra Oils. You can order them HERE

I use:
Melaleuca & DDR Prime - Daily (Has Regenerative Properties)
Frankincense - Daily (I put this on the brain reflex points on the feet and brain stem) 
Breathe - If she is congested
On Guard - Daily
Balance - Daily
Melissa - If someone who's been sick is around her. 
Clove - Muscles
Peppermint -- Muscles
Lavendar - Heart
WinterGreen - Rubbed on her calves with Fractionated Coconut oil. 


A few times when we are out somewhere with Hailey and she isn't in her wheelchair often times someone says, "ooh, that's the kind of stroller I want." I often think to myself, " you don't." Not because it's not a good stroller, but because it's a special needs stroller and because it's EXPENSIVE. Well everything that has to do with special needs or kids with disabilities is expensive. You just got to get over it and do what you have to do.

When we were looking for a stroller for Hailey we didn't know where to start looking. When we were at Primary Children's Medical Center Josh saw a stroller that would work for us and the brand was called Maclaren. When looking at the Maclaren websites the strollers were reasonably priced. Reasonably in terms of being for special needs, but the ones on the website weren't  for special needs...My mother in law was the one who did the leg work on the stroller for us. She found the website and found the Special Tomato EIO push Chair:

 on the website they even have a comparason between the Maclaren and the EIO:

So after doing the research and based on Hailey's size and weight and how much use we'd get out of it we went with the Special Tomato EIO. The only time Hailey uses her wheelchair is to go to school and when we sit at the table for "dinner." All the other times that we are out and about or when I take her to therapy or appointments we use the push chair / Stroller. It folds up KINDA small and it's not TOO heavy. It works for us!

When we brought Hailey home from the hospital in October after her g-tube was placed she laid on the couch or in a bean bag chair, but mostly the couch. I hated having her constantly laying down but she didn't let me hold her, and she couldn't sit up on her own. At the hospital they let us use a Tumbleform chair which allowed Hailey to sit up on her own. I knew as soon as I saw that, it would be beneficial to Hailey. One thing about these chairs is that they are made to order, I haven't found a place that sells them ready made. By the time I found this chair and we had the money for it it was February before we got it. Hailey uses this every day. She does her feeds in the chair and it works great.


I wrote a post earlier in this blog regarding how we bathe Hailey. We have this bathing chair, and fortunately we didn't have to do any research on it because it was donated to us! We were extremely thankful to be given this gift for Hailey. Bathing can not happen without this chair!


Britax Traveller Plus Special Needs Car Seat:
We were able to get this Special Needs Car seat for Hailey thru PCMC in Salt Lake. You can also order one online...Not cheap, but necessary!


 In the hospital during therapy Hailey would use this Rifton Stander. The Rehab doctor said that this would be the most helpful thing for Hailey to stretch her calves and hamstrings and to help aid in digestion. The only thing with this was that it caused Hailey's Moro Reflexes to go CRAZY. She hates the stander, but we have it, and it was NOT cheap!!

We've had 2 wheelchairs and the original company that suggested her first one didn't do a very good job at it. She grew out of it with in months and it also wasn't one that "grew with her disease." I did the research on this one and found that this one made the most sense. My complaint against it is that it doesn't fold and it's SO FREAKING HEAVY!!!!

When Hailey had her tube placed they told me that I should just use split gauze under the button above the skin and tape. Hailey has an allergy to tape and the gauze didn't stay without it. My friend Mary told be about g-tube pads and we haven't used gauze since!! G-tube pads are absorbent, functional, and stylish. There are a lot of companies, especially Etsy ones that sell these. I've used:

3 Tiny Blessings
Belly Buttons
Make Lemon-aid (not active any longer)
If you just google it or look on Etsy you will find tons and some are REALLY cute (and expensive)


Hailey had used these wedges when she slept and we bought them on Amazon. Amazon is a great place to get almost ANYTHING you need! A few other things we have bought or received on Amazon are:

Tranquility Diapers - These diapers are velcro and super absorbent. They don't make diapers that fit Hailey that you can pick up at Target or Walmart and these are delivered to your door!

No Rinse Body Bath - When there are times that Hailey needs a good scrub, but we aren't able to bathe, this stuff comes in handy!

Pressure Pad and Pump - When Hailey wasn't able to rotate herself in bed this pressure pad was awesome at preventing bedsores!

Chux Pads - We use Chux pads everytime we change a poopie diaper. It's just too messy not to and these help out with the mess.

Wipes - Another Amazon saver are wipes. We are not wipe snobs we don't care which ones we use/get but buying the bulk qty can be a money saver.

Other resources:

HippoTherapy: I'll update this once I decide if I like the place we are going to or not...LOL!!

Make a Wish Foundation 

Give Kids the World

Children's Therapy Centers - 750 Coronado Center Drive, Suite 120. Henderson NV 89052. Phone number is 702-564-4116. *The reason I put this down is because the first 2 rounds of Therapy Hailey was given we had no choice in the place we were to take Hailey through our insurance. We were sent 
to a geriatric rehab center that was not the place she belonged. This place is GREAT! 

There are still a lot of places I need to find out there. These places are on my list of TO FIND:

Swimming/Water Therapy

Day Camp or Day Care for Special needs/medically fragile children. (I want Hailey to interact with kids during summer)

I want to find a PVC or Water Wheel Chair so I can take Hailey to the Splash parks

Gait Trainer