IV Pole Storage

Many special needs families use IV poles on a daily basis.  For us Junior has one attached to his medical cart which holds his feeding pump and farrell vent bag. 
The stand alone IV poles take up quite a bit of space because of the legs and I recently saw a picture of a pole with a bucket on the bottom to hold supplies.   I thought it was a fantastic idea and in the picture it was a very cute little bucket with lid.  For me I did not want the lid and also wanted something bigger so decided to see if a storage bin I had on hand would work. 

I first removed the top of the IV pole.  To do this I completely unscrewed the portion that tightens or loosens to adjust the pole height.  When you completely loosen it the top of the pole can be slid completely off the bottom portion.  I then used a sharp knife to punch a hole in the bottom of the storage bin.  This was far easier then I expected and after getting a small hole I then carefully carved it bigger until it was just large enough to slide over the pole. 
(pardon the mess in the pic, I was in the middle of cleaning out the closet when I found the storage bucket and decided to stop and try this out). 

I then put the top of the pole back on and your done.  Junior thinks everything is better with Spider-man or Minions so we added a big Minion wall sticker to the front of the bucket. 
At the moment this is our spare IV pole and gets used for a variety of things from medical items, to holding his ipad arm, his felt board, switch toys, etc.  Right now it has Junior's basketball hoop attached to it so we put basketballs, various other balls, and his basketball ramp in the storage bucket.  If we were using it for his feeding pump it would easily hold the months worth of feeding bags and likely could also hold his months worth of farrell vent bags.

 

Music

Junior is currently doing a music themed unit in school.  He is loving the musical activities and especially the crafts.  Feel free to click on over to his reg blog to check it out.  I will try to share a few of the ideas over here as well but things are very busy so it may be awhile. 

He is learning about a new instrument each day and here is enjoying the piano with his piano mat. 

 Learning about the drum and then painting with his drum sticks while playing(his drum is under the paper).

 Using his ipad to listen to various instruments.

 

Click on the link for his reg blog to see more of his music fun.  

Junior's Amazing Journey

A Few New Things

Wow, it has been so long since my last post.  Very busy summer and with the many fires in CA the air quality is bad which is hard on Junior. 
Recently we have been struggling with Junior getting lots of bruises because the seizure meds he is on cause low platelets.  I have been trying to find ways to keep him from getting the bruises which is a challenge. 
Not too long ago he got a wonderful new wheelchair and though it fits him nicely and he is very comfortable in it, I realized the tray and arm rests are the culprit for many if not most of the bruises.  When he attempts to move he presses into the tray or armrests and just that small pressure causes problems. 
Time to bruise proof his chair and tray.  I thought I would share here in case others have the same issues. 
I used 1 and 2 inch foam for these(found at walmart and very reasonably priced) and Junior's choice of fabric.
For now I am just going to share what we did for the padding and will try to do a few others posts with the step by step directions.
 First off his stroller/transport chair.  He is not comfortable in shoes and without them the foot plates hurt his feet. I used a large piece of 2 inch foam cut to the size we needed then covered with a fleece cover.  On the bottom is a pocket which allows this to slip over the foot plates easily so it can be removed quickly when the chair is folded for transport. 
We then made some fun covers with Junior's favorite fabrics. When it is cold Junior's feet can go inside the covers to stay warm. 
 
The slip covers can either be velcroed on top to act as a foot "pocket" or put over the whole thing when it is hot.

  

It has made a huge difference in his comfort

 

Next his wheelchair tray

For this I used 1 inch foam cut to the size we wanted. I wanted the pads large enough so his entire forearm is resting on the pad when his tray is used.   I used a piece of heavy duty velcro on the tray where the pads attach and then stitched velcro to the bottom of the pad cover. 

His wheelchair after bruise proofing.  I added a 2 inch piece of foam to the bottom of his foot box and also a piece on the back.  Neither are "attached" to the box itself because we often move and adjust their angel.  For the arm rests I used a strip of 1 inch foam covered in flannel material and then added velcro so it can wrap around the armrest and stay in place. 

Lastly Junior needed a "soft" tray to use when he sits in his recliner.  Typically we use his wheelchair tray but it is heavy and hard to get positioned just right.  Junior has his sensory tray which he loves but needed something to use when he wants to play with other toys or do activities in the chair.  

I only had 1 inch foam on hand so stacked 2 and added a thin piece of cardboard in the middle so it was a little more stiff.  I used a hot glue gun to secure the foam and then cut out the center so it would fit around Junior.  

I measure my material and stitched it into a cover leaving it loose around the center. I stitched velcro to the top edges so we could pull it tight to keep it in place.  

After sliding the foam into the cover I then used pillow stuffing around the edge that would be against Junior.  This way the tray can be snug against him without risking it pressing on his tubes or causing a problem.  I added extra stuffing to the bottom of the tray then velcroed it tightly closed. 

 Kind of like a boppy pillow except larger and has a flat surface for Junior to use for toys, books, ipad, etc.

Mini Basketball Hoop and Ramp

Now that Junior is older the typical Easter basket is not something he gets very excited about. He can't eat candy and it can be hard to find things to fill his basket that he will actually use.
I did a little hunting and happened to spot this mini, over the door, basketball hoop on clearance.  My first thought was "perfect Junior will love it".  Then I got it and had to figure out how in the world I could adapt it so he could reach it and actually enjoy it.

The basketball hoop is THIS one which can be found on Amazon. 
I discovered that an IV pole was perfect to make the hoop accessible for Junior and then the height can be adjusted. 
The challenge was how to hang the hoop.  I found a large dowel in my closet from something we weren't using(PVC might work as well if it wasn't too thin).  The pieces on the back of the hoop which are made to go over the back of a door easily hook on the wooden dowel.This set up can also be easily removed from the IV pole in case you need it for something else.

 I put the dowel with the basketball hoop attached over the upper cross bar on the IV pole.  Then I used two elastic straps with velcro stitched onto them to hold it in place.  It stayed in place without the elastic but I think with much motion it could be knocked down.

I could help Junior throw the ball but I like to allow him to do as much independently as possible.
He can push with his arm so with minimal help he can roll the ball into the hoop with a ramp.
He has a larger bowling/basketball ramp that we use outside for his larger hoop or inside for bowling but it is too long for this one.  Here is a post I did several years ago about how to make our original larger ramp.  This new one is made exactly the same way only shorter.   You could adjust to the size your need.
Here is a picture of both ramps side by side so you can see the difference in size. This time I wrapped the ramp in Ninja Turtle duck tape instead of the orange. 

  

This basket ball hoop has a spring so propping the ramp on it is not an issue.

 Finished product.

Can't wait to show Junior his Easter surprise tomorrow.

Update:  Now that Junior has played with his new hoop I will give a quick update. 
He loves it and it worked well.  Our only glitch was when I was lowering the hoop the bottom edge caught on the bolt on the iv pole and lifted enough to dislodge from the dowel.  Secure during play so not a huge issue but I am going to figure out something to either put over the pieces on the back of the hoop that are over the dowel or maybe put some of the industrial strength velcro on the dowel and underside of the pieces.  Velcro is likely easiest and should hold well. 

3 D Spiderman Light Adaption

Anyone who visits Junior's blog knows that he loves super heroes with Spider-Man being his absolute favorite.
Last week I found a 3D Spidey light and adapted it for him for Valentines.  It is made to be mounted on the wall but I wanted to switch adapt it and also wanted to be able to move it so Junior could play with it anywhere.

I didn't take step by step pictures but it was fairly easy so I think I can describe it well enough.
We used a Spider-man 3D light - this shows it on Amazon but other stores also carry it and we were able to find it on a good sale.
I also picked up an oval shaped painting canvas at Hobby Lobby.  It is the 16 X 20 inch size and was the perfect size/shape.

To start I place a couple strips of white duck tape across the area on the painting canvas where we were going to be mounting the light.  You have to put screws in to mount the light and I was concerned it might tear the canvas. 
Next I took the large wall sticker that came with the light and put it on the canvas.  I put it right over the white duct tape and with the canvas also being white you cannot see the tape(unless you get right up close and look for it).
I put a couple small pieces of cardboard behind the canvas so we would have something to screw the screws into.  I realized the cardboard would likely not hold long term so put a plastic lid between the 2 pieces of cardboard where each screw would go in.
Here is a picture of the container I used the lid from(I used 2 lids, one under each screw). I just broke the lid off so I could use it.

The wall sticker has marks where you need to put the screws in which makes it easy.  I put the screws in and then put duck tape over on the back of the canvas over the cardboard just to be sure it held.  I don't think it was needed but did it just to be sure. The light weighs very little so isn't pulling at all when mounted.  The spidey light has small slots for mounting and can be taken on and off as needed.
Here is a pic of the back of the canvas.

 This is the front of the canvas after putting on the wall sticker and putting in the screws.

 I then use a battery interrupter to switch adapt the light.  Click HERE for directions on using the battery interrupters.  I cut a small notch in the battery compartment for the cord then mounted the light on the screws and it was done.

I used 2 of the clamps pictured to clip the canvas/light to Junior's tripod.  I had an "arm" from something he no longer uses which I clamped to his tripod and then used the clamps to clip it to the bar on that so it sticks straight out.

 This pic shows it with the switch being used and the light on.

 Junior was on his bed when I showed it to him to first time and the tripod allowed me to put it in a place he could see it great and use his switch to activate it.  He loves it. 

 

There are several of these 3D battery operated lamps in various super hero themes available.  I may have to see if others will fit on this same set up.  That would be great and we could vary them without having to make a new canvas to mount them on. 

Making Sleeves

This is not my original idea and I am sure if you google you will find other tutorials but I thought I would share how we make our sleeves.

Junior hasn't worn long sleeved shirts for years.  He gets hot easily and is often at doctors appointments so it is much easier to use short sleeve shirts with sleeves added.  When he was younger we used Baby Legs , leg warmers, as sleeves.  As he got a little bigger the baby legs no longer worked and we happened upon another place that sold a bigger version.  I knew those would not last him forever as he grew so was thrilled when someone showed me how to make my own sleeves for him out of long socks.
This is Junior wearing a pair of "sleeves" at a doctors appointment.  These are great at appointments because they can just be pulled down for things like taking a blood pressure.  

Our biggest problem now that Junior is bigger is finding long enough socks to work.  Regular knee socks are no longer long enough so we need "over" the knee socks which are difficult to find in patterns that are not too girly.  Yesterday at Joann's craft store I found a selection of St. Patricks Day over the knee socks and one of the pairs would work for a boy.

To start we cut the foot off the sock.

 Then cut the toes and heel off so you are left with just the middle.

Fold that piece in half. You now have a loop with the cut edges together on one end. 

 Slide over the cut end of your sock with the cut end of  your loop from the foot of the sock pointing up.

Stitch around the sock near the top.  Fold up so the cut edge no longer shows and that is your cuff. In this picture the bottom sock shows the sock with the "cuff" and the top sock is the opposite end that will be at the top of the arm when worn.

 Junior wearing the sleeve.  These "over" the knee socks make the perfect size sleeves for him and are not too snug.  They are slightly long but not enough to be an issue and will allow for some growth. 

Another pic of him with his sleeves on.  In this pic he was helping make rice crispy treats.  The mask on over the trach is just in case he coughs while we are mixing everything.

"How to" booklets

Junior has a lot of medical equipment and of course each thing has a specific way it is used. 
Using it all is second nature to me but what if someone else needs to help.  If I were sick or had an injury that prevented me from doing everything myself.  Also we have nurses a few hours a day and though I train them very carefully on each machine sometimes having the visual reminders would be very helpful. 

A couple weeks ago I took pictures of his machines along with step by step pictures on how to set up and use the machines.  I then edited the pictures and added arrows and words.  I sent them off to walmart to be printed and enlarged and got them back late this past week. 
I laminated each picture using contact paper and then made a "cover" page for each machine that had step by step directions for use. 
Punched a hole in the corner of each card and added a ring.  Now the booklets hang with each machine(so far there are eight booklets but I realized I need to add a few more) .

Here are some pictures showing the booklets.  The cover page is followed by 2-9 pictures depending on which machine.  The nebulizer book only needed 2 pictures but the ventilator book needed 9. 

The front of one of the booklets(Junior was helping so Spider-man stickers were necessary).

 The pictures inside the book, this is just showing one of the 3 pictures for the feeding pump.

 The feeding pump booklet hanging just below his pump. 

 Junior's Trylogy ventilator with the booklet hanging with it.

 The first of nine pictures included in this booklet.

 The IPV booklet

 

 The booklet you see in this picture is for the airway vest which is on the bottom shelf of the cart.

Here are a few examples of some of the pages in the various booklets.