"Can't Live Without" - Tripod

I would love to have others share their "can't live without" items.  Just email me, I would be so happy to have you do a guest post.

This is an item we use so much that I almost over looked it when I was working on this series.
It is our tripod.  I picked this up at Orchard hardware store about 10 years ago and it is rare that a day goes by without it being used.  It is made for lights to be able to be attached to the top at construction sites. This one had a screw in the top which I removed awhile back and instead attached the piece you see in the picture.  It is an ipad holder.  The tripod can be fairly short or tall enough for Junior to use while in his stander.

 With his switch attached to it.  I have attached the switch to many different places on the tripod.  Even to the leg when Junior wanted to use his head switch while on the floor.

With his ipad arm attached.  Though we have the ipad attachment also on the top of the tripod it only works in certain situation because of the limited motion.  The arm allows us to put the ipad wherever we need it.

Now some pictures of the tripod in use.  holding a switch(hard to see but it is behind Scooby-Doo

In these pictures it is being used to hold the ipad during activities.

   

In these pictures Junior is standing in his stander so it shows how high the tripod can go.

now using it while in his recliner

"Can't Live Without" - Power Link

If Junior were to make his own list of "can't live without" items I am quite sure the Power Link would be fairly close to the top.  The Power Link can be found in most special needs catalogs and websites.  It allows an item to be plugged in and then operated by a switch, most anything can be made switch accessible. It also allows you to set the type of switching you want done or the amount of time you want an item to run after the switch is hit.  For certain items we set it so that hitting the switch turns the item on and it then stays on for a set amount of seconds before turning off.  For other things like the sewing machine the switch must be continually pressed to keep the item running.  With multiple plugs he can have several items attached at once.  He loves to listen to his stories and play with his "space ship" lights at the same time. 
 
Junior uses his powerlink for many, many things.  At Christmas time we plug the tree into the box so he can control the Christmas lights.  His solar system is often plugged in so he can control those lights.  For kitchen activities a mixer or blender can be turned on with a switch(allows him to take part in cooking but also stay a safe distance away from certain appliances).  I plug his tape recorder/radio into the power link so that he can listen to music or stories using his switches.  His all time favorite activity using the PowerLink is sewing.  He loves to have me plug the sewing machine into it so he can use his head switch to sew.  Click HERE for a blog post of him sewing. 
Here are some pics of him playing with multiple items with his switches.  Click Here to go to the post which will explain more about what he is doing(he has 4 different items going with his switches)

"Can't Live Without" - Blender

Junior is on the blended diet which means that he eats the same foods I do but they are blended and put through his feeding tube.  The foods he gets are put through his feeding pump and Junior has a j-tube so the food must be very smooth or it will clog the tube(for a child with a g-tube they can sometimes bolus feed). 
When Junior started this diet a year ago we were using a regular blender and it took me hours to prepare his meals.  Finally a few months later we were able to purchase a heavy duty blender and it is absolutely a "can't live without" item for anyone using the blended diet.  There are a few different brands that I have heard great things about and we went with the Blendtec brand(Vitamix is another brand commonly used with the blended diet). 


I can take a meal like this and add some coconut or almond milk 
  Put it through the blender, strain it and it is ready to go in the feeding bag
In the feeding bag

Packed in the back pack with ice packs and ready for the night
I also prepare many foods ahead now and freeze them.  Here are some servings of many different vegetables all blended and ready for the freezer. I also do this with grains, meats, fruits, etc.  I also fix full meals and freeze them for those days when things are too busy.

Quality of Life, MJ's Perspective

Great post written by a friend who has SMA. Quality of life is something that is frequently brought up and MJ does a great job sharing her view on this.
We have dealt with this question on many occasions. People don't seem to understand that because you are disabled doesn't mean you can't be happy and have amazing quality of life. Because my child's life is different does not mean it has less quality or value. Junior is the happiest most determined child I know and loves life with a passion that few able bodied people can even comprehend. Yet many people miss that and only see what he can't do or the struggles he has.
http://smileshoelace.blogspot.com/2012/04/ignorance-is-bliss.html

Behind a Shoelace & a Smile: Ignorance is Bliss

smileshoelace.blogspot.com

"Can't Live Without" - IPV

Junior got the IPV machine just this past Thursday but I am already seeing it become one of our "can't live without" pieces of medical equipment.
Even with the weather changes right now and constant asthma issues Junior was on no oxygen all day yesterday and last night. I saw his oxygen levels hitting 100% while on his bipap during the night. Even this morning after removing his bipap he is on room air and I have seen oxygen levels around 98%. With Junior's chronic lung disease when he has asthma issues he usually immediately needs his oxygen. Even when doing well his oxygen levels are typically around 95 so this is amazing considering he is having some asthma issues at the moment.

I am just going to copy the post I put up on his reg blog about the new machine(this was posted 4/13/12, the day after we got the IPV).
IPV is in the House

This machine pushes small puffs of air into the lungs which basically does percussion from the inside. It also acts to push his airway medication deep into the lungs where it is needed.
Junior has now had a few treatments and we are already seeing a difference in his oxygen levels as well as the amount of secretions he is clearing.

The first thing I had to do last night was rearrange Junior's medical cart so the IPV would fit. The cough assist is now on the bottom shelf. The IPV is the big green machine(for those not familiar with the equipment the top shelf is his airway vest and IPV, middle shelf is airway meds and bipap/avaps along with bipap supplies, bottom shelf is nebulizer and cough assist as well as a box with items for taking vitals.
IPV set up and ready for use
The mask that goes on Junior's face, the yellow cup is where the airway medication is placed
Getting a treatment, we quickly found that this mask is too large so have switched to a smaller one
All done and having his regular nebulizer treatment

"Can't Live Without" - Giant Toy Bar

Junior loves his toys but has a hard time holding onto them and getting them up where he can see them. Several years ago we used some pvc and made a giant toy bar. I posted about how we made it in a past post so click here to see that post. His toy bar definitely falls under our "can't live without" items, it gets used almost daily. Almost 2 years ago Junior was doing a school unit on space so his toy bar became a planetarium complete with planets, stars, and rockets. Prior to that we would change what was on it frequently but since then he hasn't wanted me to change it. He loves his planetarium and will relax and listen to music while he enjoys it.

3ELove

This is not an adaption but just in case you haven't seen the 3ELove gear, I had to share. Be sure to check out their website and see what they are all about and also check out their cool shirts and other apparel. 3ELoves wheelchair heart - embrace, educate, empower

Junior sporting a 3ELove shirt today.
Too cool to smile for this pic
Catching a nap while waiting for therapy
Of course there has to be a smile pic. watching tv tonight

"Can't Live Without" - Organization Shelving

Again not your typical "can't live without" item but with our limited space and the amount of medical supplies and other necessary items they have made a huge difference. I know there are many other shelving units and setups but I will share what has worked for us.

First our shelves in Junior's room. I love these tall shelving units and they are very stable and can hold lots of weight. We used the clear shoe boxes for large medical supplies and then the little tool boxes with the tiny drawers for small things. We have a unit like this in our school room as well and it holds all his school stuff, games, etc. We purchased this unit at Target but I am sure they have similar things other places.
Junior's room
The School room
In Junior's closet we use a variety of things to organize.
These boxes hold larger supply items like diapers, suction supplies, etc. These boxes and the shelf came from Target.

Would love to hear/see how you organize all the medical supplies. Always great to see what others do and learn other great ways to organize.

"Can't Live Without" - Medical Cart

This "can't live without" item is not a piece of medical equipment or mobility equipment but it is something we use every single day.
It is our medical cart. The cart that moves to wherever Junior is in the house and holds his machines and various other items.
We started out with a microwave cart but quickly realized it could not handle the weight of Junior's machines and we risked flipping it over anytime we moved it.
That cart is now his "switch" cart and holds some of his adapted toys and various switches and switch adapters. The tiled top is something Junior and I added for fun.
Junior's medical cart is actually a food service cart and can hold about 500 lbs. It has large wheels so rolls fairly smoothly even on our carpets. Each shelf has a hard plastic shelf liner(came with the cart) so things are not on the metal. We purchased this cart several years ago at Sam's Club but I am sure they have them other places. At the time we purchased it, it was very reasonably priced and after using it for so long I can say it was worth every penny. Hard to believe I used to actually carry that vest out of his closet 4-5 times a day for each treatment. This picture is with it next to his bed and it is ready to start his night treatments.
For those wondering what is on the cart. The top shelf is Junior's airway vest and cough assist machine. The little box in front of the vest has one of his nebulizer meds and there is a small rectangular box between the machines for trash. Second shelf has baskets with nebulizer meds, bipap masks, emergency meds, and his bipap machine. Bottom shelf has a small tub with items for taking vitals, 3 nebulizer machines, and on the back a heavy duty power strip is attached. We added the power strip so everything on the cart could plug into that and I only have to plug one cord into the wall(these machines are not all running at once). We also used zip ties to add a hook on the side for hanging an ambu bag. We hang the cloth portion of the airway vest over the handle of the cart. So as you can see it holds a lot and each of those machines weighs quite a bit.
This pictures is the cart in the living room next to his chair.

Sick

I had planned to do a bunch of "can't live without" posts but Junior has a bug so the posts will have to stay on hold for a few more days. After a few fabulous days he got hit with something quite hard. Today is a little better and we pray he will continue to improve and we can avoid any trips to the doctor.
I apologize for the wait and we will get back to regular posts in a few days.

"Can't Live Without" - Cough Assist

When I started this set of posts on things we "can't live without" I had not planned to include medical machines. I decided that with the huge impact the airway vest and cough assist have had on Junior's health I would include them. I know most of what I am sharing in our "can't live without" posts are not adaptions but it lets others know what is available and what we(or others) have found most helpful.

My last post was about the airway vest and this post is about the cough assist which goes hand in hand with the vest. After Junior's nebulizer and vest treatment he gets a cough assist treatment.
The vest treatment loosens the gunk in his lungs and helps it move to his upper airways. The cough assist helps get it out. The cough assist has a mask that fits over Junior's mouth, air goes into his mouth then is rapidly sucked back out mimicking a cough. This should make Junior cough though it often does not. Even when he does not cough a huge amount of mucus is pulled into his mouth so it can be suctioned away.
Junior doesn't mind and in fact likes his other treatments but the cough assist he can't stand. Thankfully it doesn't take much time and if we count each "cough/breath" he tolerates it okay. Now that he has his tubie monkey it helps a great deal for us to pretend monkey is also getting a treatment. monkey getting his cougher

What "can't you live without". I would love to have you share.

"Can't Live Without" - Airway Vest

The next piece of equipment in our "can't live without" series is Junior's airway vest. This is a piece of medical equipment and of course not something most kids need. But it is such a huge part of Junior's life and one of our "can't live without" items so I wanted to share. With Junior's lung disease it has been a true life saver. Junior's lungs create a huge amount of mucous and to clear this gunk we have to do percussion. Percussion consists of using a cupped hand to hit his chest and loosen the gunk so it can clear. The airway vest does this percussion for us. With the vest we start at low speed to loosen the secretions and then move to high speed to get those secretions moved into the upper airway so they can be cleared. After the vest we follow with the cough assist machine to completely clear those secretions but I will share about that machine in a separate post. The hoses on the front push air in and out of the vest rapidly to create the "percussion".
This is the vest that Junior wears during his treatment.
I had to cover Junior's hoses with foam and fleece which is why they look strange. Junior has learned how to disconnect his hoses but without the foam he bruises his arms as he works to get the hoses off. (the piece of cloth you see tucked under the shoulder piece on Junior's left is to protect his port during treatments)
When he is full of energy we even have to add a blanket across the vest to keep him from taking off the hoses. A very smart guy who thinks it is quite funny to make us all come running.
Junior uses the full chest vest which inflates and percusses front and back. There are other vests one of which is the chest vest which looks much like Junior's but only inflates and percusses in the front. Another is the wrap which just wraps around the chest and does not go over the shoulders like a vest. When Junior was in the hospital we had to use the wrap because his port was accessed and we couldn't put the shoulder piece over it.
Here is our little buddy ^Drew^ using the vest wrap.

Junior getting all shook up

"Can't Live Without" - High/Low Chair

I have been sharing a few of our "can't live without" pieces of equipment.
Another piece of equipment that we have found to be so very helpful and gets a huge amount of use is the Leckey high/l0w chair. Leckey also has a lot of other great equipment and are the makers of the Kidwalk which we are currently try to get for Junior. This chair can be lowered down to near floor level or up to counter level. It is perfect for schooling and other activities. It reclines and the foot rests can be adjusted to several positions, there are also many extras that can be needed depending on the childs needs.
One of our favorite things is the padded chest strap that holds Junior in a proper position even without his back brace.

This is the 3rd item we have shared in our list of "can't live without" equipment(this will include toys, medical equipment, and mobility equipment), earlier we shared about Junior's overhead lift and shower chair. Tomorrow I plan to share about Junior's airway vest.

Making Your Own Wipes

Awhile back someone shared a recipe for homemade wipes. I finally had a chance to try it and was very pleased. These are great for diaper changes and do not burn like regular wipes do if there is diaper rash. We also use them on Junior's hands.

To start you need a roll of Bounty paper towels(other brands fall apart once wet) and a round airtight container.
Cut the roll of paper towels in half so you have 2 short rolls. Place one roll in your round airtight container.
Mix: 1 1/2 Tbs of baby wash, 1 Tbs of baby oil, and 2 Cups of water
Poor over the roll inside your container. Cover and let it sit so the fluid soaks completely into your paper towels.
Once the paper towels are wet the cardboard tube in the center will pull right out.
then you are all set and your wipes are ready for use(be sure to keep an airtight lid on the container so they don't dry out)