Girls swimsuit with snaps (changing a diaper easily with a swimsuit)

This is genius.  A girls swimsuit with snaps that you can change diapers easily.  It looks like it goes up to a size 10.  Fairly cheap too...around $25-$35 .  It is called Fasten.

Click here to view.

Wish Granting Organizations

Here are a list of wish granting organizations.  They all have slightly different rules, so you will need to do a little research on your own.  I have not used any of these myself, so once again you will need to do your own research.

Charity Navigator.org rates charities, so you may want to check it out before donating.

Here are the wish granting organizations I found through a little digging...



Angel's Hands

Angelwish

A Special Wish Foundation

Bianca's Kids

Children's Wish Foundation International

Dream Come True

Dream Factory

Dream Foundation (Adults only)

Granted Wish Foundation

Jason's Dreams for Kids

Kids Wish Network

Make a wish

Sunshine Foundation

Wishing Well Foundation USA

United Special Sportsmen Alliance (provides outdoor experiences)

Weber School Foundation (Only for students being educated in Weber and Ogden School Districts in Utah) (They grant wishes such as bikes, hearing aids communication devices, switch toys, etc...  up to $10,000.  Can use more than once)

Wishes and More (only for Minnesota and surrounding areas)



Do you know of any additional wish granting organizations?  Please comment below

Have you used any of the above? Please comment below and tell us about your wish

Can you go swimming with a g-tube?

Yes!

G-tubes really don't get infected. Any bacteria or other yucky stuff that gets in while swimming is killed by stomach acid.

A person with a g-tube can go in lakes, swimming pools, rivers, bathtubs.  With no problems.

You DO NOT need to cover the g-tube with anything.  (No gauze or plastic or mepilex or anything.)

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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