Add snaps to your daughters swimsuit

Changing a brief (diaper) is no fun with a wet swimsuit in play.  

Buy the suit 1 size larger than they actually need.

Cut the swimsuit along the bottom seam.

Fold the material back 

Use a snap setter to put in some plastic snaps (plastic so they won't rust).

Put some swim shorts on over the top

Wah-lah!

Bring the umbrella in the pool with you

Ellie sunburns very easily.  We just bring our own shade!

How do you make swimming more enjoyable for your child with disabilities?  Comment below

How to pack for a road trip (not camping)

10 tips for taking a roadtrip with your child with disabilities

#1)  Have a bag of things you will need while on the road (diapers wipes, change of clothes, food for the one day, any meds they get during the driving time, etc...).  Keep this bag accessible.

#2)  Pack the rest of the items by placing like objects together.  So feeding and formula together, diapers and chux and enemas and caths together, clothes together, etc.

#3) Place these grouped items into clear bins with lids.  They stack nicely in the hotel room.  It is easier to find items in clear bins rather than in suitcases.

#4)  Stop and get child out of wheelchair every hour and half to prevent bedsores.  We carry this yoga mat and can lay her down on the grass or a the top of a picnic table.  Our rule of thumb is that she needs to be out of the wheelchair for at least 20 minutes every hour and a half.

#5)  Get a EZ on vest if you have a bench seat.  This allows the child to lay down and still be buckled up.  Then you can alternate between the wheelchair or carseat and laying down.  You can borrow one from the carseat clinic at Primary Children's Hospital and then if you like it you can buy it from them.  Just call the main number 801-662-1000 and ask for the carseat clinic.

EZ-on modified M203 is for kids ages 2-5 and EZ on modified 101 M2 vest is for older kids.

Here is a brochure http://ezon.impactfulmedia.com/wp-content/uploads/2013/05/EZONvehicleCatalog_2005.pdf

And here is the website.  http://ezonpro.com/

#6) To protect her privacy while changing her brief (diaper) we lay her on the yoga mat listed in #4 and cover her up from the chest down with a flat sheet.  Mom goes under the flat sheet and takes care of business.  I'm sure it looks ridiculous from the outside...but it works.  Or if we can find a corner...I can have 2 traveling companions hold the sheet up hiding us in the corner.

#7)  If your room doesn't have a freezer...and your formula needs an icepack at night or you need to carry formula (and keep it cool) during the day use doubled up baggies.  Use the hotel icemaker and do a baggie inside a baggie.  (Only the inner baggie has ice).

#8)  Do not get a disabled hotel room.  They typically only have 1 bed.

#9)  Bring extension cords and power strips to plug machines into.

#10)   Bring garbage bags so you can take your stinky trash out of your hotel room to the dumpster without it smelling up your room.  You may also want to bring some M9 or other air freshner.

Please comment below with other suggestions you have for packing for a roadtrip!

Wall Mounted Hand Sanitizer

We got this Schwinn Bicycle Water Bottle Holder from Walmart to hold our Avagard D (Hand Sanitizer).   It's width is adjustable, so it was easy to adjust it to hold the hand sanitizer.  It mounts to the wall or inside a cupboard easily.  I think it was about $15.

Avagard sells their own version for about $80.

What tips and tricks do you have for organizing your medical supplies?  

Please subscribe to this blog to see future posts.  Feel free to share this blog with people you think may be interested.

We would also love it if you would like our FB page.  https://www.facebook.com/SupportedInOurTrials/

Wall mounted glove holder

I got this wall mounted glove holder for $15 on sale from Harbor Freight.  They go on sale a few times a year.  If you subscribe to their mailing list you will see them in your monthly ad.  Easy to put on the wall or inside a cupboard.  Regular price is $25 or $30 I think.

What tips and tricks do you have for organizing your medical supplies?  

Please subscribe to this blog to see future posts.  Feel free to share this blog with people you think may be interested.

We would also love it if you would like our FB page.  https://www.facebook.com/SupportedInOurTrials/

Hospital gossip (Primary Children's.)

The current Ronald McDonald Family Room is 3500 square feet and is the largest family room in the world!  Wow!

 

They are making a 2nd Ronald McDonald Family Room at Primary Children's.  It will be on the 2nd floor where the current PICU waiting room is.  There will be...
-A shower (good, because the existing ones are disgusting)
-Laundry facilities (good because there are no current options for PICU except on the 3rd floor in the existing family room.). 
-Some sleep rooms (good because it is hard for parents to sleep in PICU)
-And a small PICU waiting room.

 

Just south of the parking lot between PCH and Moran they are making a School of Medicine.

Getting to The Point ( cafe at Huntsman Cancer Institute)

There is a really yummy cafe on the top floor of the Huntsman Cancer Institute.  They are open for lunch until 2 PM.  It is slightly pricey for hospital food, about $8 for an entrée.  But it is yummy.  There are soups, salad of the day, sandwich bar, entrée of the day, they have a visiting restaurant of the day, scrumptious desserts and a Starbucks.  There are large windows overlooking the valley with unbelievable views.

 

Primary Children's is connected by bridges to the Moran Eye Center, University of Utah Hospital and Huntsman Cancer Institute.  So you can walk all the way to "The Point" (at Huntsman) without ever going outside.  

 

Here are some instructions that Rainbow Kids (a program here at Primary's) put together and then I made some modifications and clarifications.

 

To get to The Point

1.  Go to the 4th floor of PCMC.  

2.  Go to the South end (by orhtopedics and ophthalmology).

3.  Take the sky bridge to University Hospital.
4.  Go through the lobby area to the right of the escalators (DO NOT GO UP THE ESCALATORS).

5.  Take the A elevators.
6.  Take elevators to the 3rd floor.

7.  Turn left off the elevator.

8.  Then left down the hall.

9.  Follow the hall past Surgery Waiting Room.

10. Go over the glass bridge into Huntsman Cancer Institute.

11. At the end of the bridge (you will see a red brick wall) turn right

12.  Turn left.

13.  Follow the hall to the end.

14.  The elevators will be on the left.

15.  Take the elevators to the 4th floor.

16.  When exiting the elevator, stay in the building and turn left.

17.  Follow a long hall with great photography.  

18.  When you come to the end of the hall, turn right and go down the hall with more photography.

19.  At the end of the hall turn left and take the elevator to the 6th floor.
20.  Turn left when you exit the elevator and you are at "The Point".

 

To come back to Primary's

1.  Go back to where you entered the point (very important)

2.  Go to the elevators that say "Lower Level & Floors 1-6) above the elevators (very important).

3.  In the elevator go to LL

4.  Follow the 2 art halls

5.  At the elevator go to level 1

6. Follow the hall and you will see the red brick.

7.  Half way down the red brick wall turn left and go back over the glass bridge.

8.  Go past surgery waiting room.

9.  DO NOT go to the end of the hall.  When you see a large sign (by ceiling) saying ELEVATOR, follow that to the left.

10.  Take the elevator to level A.

11.  When you exit the elevator turn Right.

12.  Go back through the lobby past the escalators.

13.  Keep going straight and exit the double wooden doors which lead you onto the sky bridge.

14.  Go on the Sky Bridge and you will end up on the 4th floor of Primary Children's

 

Did these instructions work for you?  What clarifications need to be made?  Please comment below.