Cooler Ice pack

 We make all of Ellie's formula for the whole day at one time in a pitcher.  So when we will be gone for more than 3 hours, we need to take additional formula with us.  We have tried several containers over the years and this is the system we have settled on.

We put formula in cheap plastic baby bottles with lids.

 

Then we use this icepack from Walmart (made to keep a six pack cold).  It fits the bottles perfectly and keeps them upright in the cooler bag.  You can find the icepack by the coolers in sporting goods and it costs $2.

The ice pack fits into a neoprene cooler bag perfectly and can easily hang on the wheelchair on a carabiner.

We only put 3 hours of formula in her feeding pump bag at a time.  So we fill each bottle up with 3 hours worth of formula.

(The products listed below are not the exact items I have except the lids...but they look similar)

Medela Bottle lids $6 for 6 here
Cheap Baby bottles $11 for 12 here
Neoprene lunch bag $12 here

Six pack ice pack $9.50 on Amazon here or $2 at Walmart.

How do you keep your formula cold.  Comment below

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Odor Eliminator

Let's face it...have a child with disabilities can be stinky!  We're talking...clear the room so you can breathe... stinky.

I don't know about you, but air freshner just covers up the smell and it makes me sneeze for several hours after.

Cue...M9.  This odor eliminator is a lifesaver.

It actually ELIMINATES the odor.  I'm serious.

It comes in unscented or apple, I have only ever tried unscented.  There is literally no smell and truly eliminates any unwanted odors.

Seriously...LOVE IT!

Here is an 8 oz spray for $14 on Amazon  here

Or a 2 bottles of 2 oz spray for $8.40 (to stick in your GO BAG...for on the go smells) on Amazon here .  (The bottle pictured is the 2 oz bottle)

Both links I listed are for the unscented version.  If you try the apple scent, let us know how it is.

There are also some M9 DROPS on Amazon...it sounds like maybe you put them in your underwear/brief to eliminate odors...but I am not 100% sure on this.  If anyone has any more info on the drops, please let us know.

What do you do for unwanted odors?  Comment below

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Breaking pills by hand

Almost all pills (if not all) can be broken in half by hand, without a pill splitter.  They usually have 2 little lines along the edges, it breaks easiest along these lines.  (But I don't always use the lines...they will still split really well even without using the 2 little lines).

Try it.  Let me know how it goes for you.  

How do you like to split pills? Comment below.

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How to clean syringes and feeding tube extensions (G-tube)

Syringes and tubes can be a bugger to clean.  Here are some tips we have discovered over the years.

Cleaning Syringes

(This first tip for cleaning syringes goes to my husband who invented it)

When you are being discharged from being inpatient there are usually a few of these laying around.  They are called hemostats.  They are like medical pliers.  At our children's hospital they throw them away, they are not sterilized.  So I just ask if I can take them home.  They have no problems with that.  It looks like you can also buy them on Amazon for under $5.  https://www.amazon.com/Aven-Stainless-Hemostat-Straight-Length/dp/B003E48ETS/ref=sr_1_5?ie=UTF8&qid=1495677863&sr=8-5&keywords=hemostat

Cut a small piece of rag (it might take a few tries to find a good size) and lock it into the hemostat.  This is now your cleaning tool for cleaning out syringes.

It works on 10 mL, 12 mL, 20 mL, 30 mL.  (I am not sure about 3 and 5 mL...I don't use that size of syringes.

\

When the rag gets old or smelly, just cut a new small piece of rag.

Cleaning large (60 mL) syringes

We use a normal baby bottle cleaning brush to clean 60 mL syringes.

Cleaning Feeding Tube Extensions

This is called a "Peg Cleaning Brush".  You order them from your DME where you get your extensions from.  They do not require an additional RX.  Insurance/Medicaid will pay for 1 per month.

Unlock the tube (if locked) and push the peg cleaning brush through the tube a few times to clean it out.

 The end should have this little tail on the end.  The tail eventually falls off and looks like the next picture. 

 

The tail has fallen off of this Peg Cleaning Brush above, it is time to throw it away.  (They still work without the tail, I just use it as my sign that I have been using it for a while.)

I also use the Peg Cleaning Brush to clean out the tip of the syringes.

I use a  regular baby bottle nipple brush for the catheter tip end of a feeding tube extension.

The tools of the trade!

How do you clean your syringes and feeding tubes?  Comment below.

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Neck roll

I have purchased probably 25 different neck pillows and support over the years.  This is the one that works for us best...a rolled up blanket...ha ha!

You can wash it easily.  Once you find a good size blanket it supports just right.

I place it behind her head and grab both ends of the blanket and pull up slightly to tilt her head to the right angle.

What is your favorite neck roll/neck pillow?  Comment below.

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I love this camping chair

This is a regular bungee camping chair I found at our local sporting goods store.  It was $80 new and I got it for $50.  It already has a recline built in.  Ellie is 65 pounds and is 4.5 feet tall.  I do have to put a rolled up blanket behind her head and a blanket under her knee pits (the edge seems a little abrupt).  Ellie has basically no trunk or neck control and this chair works great.  It also folds flat for easy storage.

Unfortunately the sporting goods store I bought it at has gone out of business nationwide.  This one on Amazon looks similar.  It is $50.  Just make sure you check the height with the height of your child.

https://www.amazon.com/Oversize-Bungee-Outdoor-Furniture-Camping/dp/B00PXCFFZ0/ref=sr_1_11?ie=UTF8&qid=1495676667&sr=8-11&keywords=bungee+chair

What chairs do you have for your child?  Comment below.

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Caribiner/hook for hanging things on wheelchair

These large carabiners are $1 at Harbor Frieght.  They are great for hanging bags/feeding pumps/etc.  

How do you like to hang bags on the wheelchair?  Comment below.

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Replacing handlebar foam on stroller or wheelchair

So the foam on your wheelchair or stroller has ripped...what can you do about it.

Here's what I did...I went to a local bike shop and asked for their help.  They suggested cushioned handlebar tape.  This one is by Bontrager and is called Double Gel Cork Handlebar Tape.  It is also available on Amazon.

The bike shop installed it for me for about $10 and the foam itself was $20ish.

If you are going to do it yourself, they used black electrical tape on both ends to hold it securely.

Tada!

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?  

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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?  

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