Happy New Years

Light Box

I have been wanting to get Junior a light box for a very long time but after checking around I found they are very expensive. I was thinking about it again as Christmas approaches and decided that though they are far too expensive for me to purchase maybe I could make one. I did some online searching and came upon this fabulous blog which has some "do it yourself" ideas for light boxes.

I figured out what we would need to make it work for Junior and today I finally had some time to put it together.
For the light box version we made for Junior you will need: a under the bed type tote(we used the 28 quart, 6 inch high size), an under the cupboard light, white spray paint, silver spray paint(both the type for painting plastic), white duct tape, painters tape, paper, and some type of tool or knife to cut a notch in the tote for the cord.

I thought I had taken pics before painting the tote but I didn't.
I cut a notch out of the edge for the light cord before starting. After the notch was cut I put tape around it so there were no sharp edges, you could also sand it.
(I did not get a before pic so this was taken after the box was painted)

Place paper in the bottom of the tote and use the painters tape to hold it in place.
Then spray paint the inside of the tote with the white paint. Let it dry and paint it with a second coat of the white.
After the second coat dries paint it with a coat of the silver paint(I used two coats of the silver as well)
Once the paint is dry, carefully remove the tape and paper.
There was a issue with my white spray paint so I had some spots where it dripped and got past the tape. That is why in the picture you see a white line around the bottom. I wanted the edges to be straight so I put white electrical tape around the edge(inside of the box).

Place the light diagonally across the inside of the lid and secure it with the duct tape.
place the lid on the tote and flip the whole thing upside down. Because of the damaged spray paint nozzle on the white paint I had an issue with it not coating well so the silver showed through in several places around the top edge(that would be bottom of the box). I wanted it to look nice so put a layer of white duct tape around the edge.

I had somehow managed to get a bit of paint on the bottom so had to use some alcohol and scrub what I could off(beware, paint for plastic dries quickly and is very, very difficult to get off things including your skin, I still have white painted fingers tonight).

This next part is optional
I decided to decorate each of the sides with something Junior loves.
Here is the baseball side(the camera flash made the light look a bit strange)
the other side is fire fighter
A picture without the camera flash

I really had a great time making this and can't wait until Christmas morning when Junior gets to see it. I am considering switching the duct tape holding the light in place to velcro. That way I can purchase some battery operated lights for those times when we are not close to a plug in. I can then just swap lights depending on our needs. I will post an update once I get that part done.

Go Army

Junior taking a break to cheer on the Army Black Knights

Christmas Ornaments

Today Junior made a couple of Christmas ornaments during his stander time. The idea came from this blog, be sure to click on over and see some of the other awesome ideas found on the blog.
These are called I Spy ornaments. Junior had a blast making them and has been playing with them all afternoon.
I thought I would share Junior making his version of the I Spy ornaments.
We started by coloring some epsons salt for our "snow". Junior wanted one ornament with green and one with blue snow.
We then poured the snow into one of the ornaments(these are plastic ornaments that I picked up at our local craft store). That is the only funnel I had and it looks huge next to the ornament.
Ready to put the "snow" in his ornament(actually colored epson salts)
I raided our craft closet and also picked up a few things at the craft store(got to love a clearance sale)
Junior then picked what he wanted to put in the snow.
Junior loved telling me what to put in next.
We did two ornaments and this one was taller and thinner. We actually liked this size better.
After adding all the items to our ornaments we glued the lids on so we could shake and play with them without the top coming off. I also wanted to be sure the top didn't come off while they were hanging on the tree.

I was having a really hard time getting a good picture of the ornaments, I kept getting a glare.
One of them on the tree, though it won't stay there. Junior likes playing with it too much.

Sick Kid

Sorry for the lack of posts lately. We were very busy and now Junior is sick. He is slowly moving in the right direction but it will most likely be another week or so before I get another post up.

In the mean time check out this very cool blog. It is not "special needs" but there are some awesome ideas which can easily be adapted for your child's needs.

Noodle Pillows Update

I did a post about pool noodles over a year ago but now the site that sells them is no longer available. I have looked all over for the noodles with no luck. I am reposting the old post with an update.

Noodle Pillows are something we use every single day. They are tube shaped pillows which are nearly six feet long. These blue camo are Junior's favorites but they come in lots of patterns and colors.
In bed Junior has them next to him for support and positioning. In his recliner we use one noodle and put one end under his arm pit then it loops down under his knees and up to his opposite armpit for full support. Under his arms in his wheelchair when he is relaxing, in the car he always has one around him to support his arms.
We have found a never ending number of uses for these pillows.

UPDATE: 11/2011
The noodle pillow site is no longer available but I did find a lovely lady on fb who made Junior one. Busy Bee Sewing for SMA, she does wonderful work and by purchasing from her you are supporting a good cause. She made us the noodle pillow as a special order but she has many other items she makes. Be sure to click on over and see what she has.
Here is Junior with his cool new pillow, we even have a matching pillow case and oxygen tank cover.

Wider Arm Slings

I did a post about how we made Junior's arm slings and you can see it here.
We use the arm slings daily and love them. Our only issue was that they slid off his arms easily. Recently I found some wider elastic and made him another pair. These are just right for Junior's needs and stay on much better.
Junior's new and wider slings
The old pair and new pair
Hanging from the lift motor with fleece covers in place

Age Appropriate Mouth Cloths

Junior doesn't have trouble with drooling(unless he is on his tummy) but with all his coughing we need a mouth cloth nearby at all times. He is 13 so pulling out a baby cloth or bib is just not cool and Junior is very, very aware of what is "age appropriate". These mouth cloths get used for a lot of things. At therapy they go under his head so no germs can get on him from the equipment. They wrap around his suction catheter to keep it clean between uses. We also keep one over his pillow since he sweats a lot. Of course wiping his mouth after a cough is the main reason we use them.

The mouth cloths I make are super simple and take no time at all. Junior loves to pick out his own patterns. Here is the latest material he chose(I also just made some spiderman, military, and football cloths)
I just do a zig zag stitch around the edge and they are done. You can make whatever size works best. Ours are about the size of the top of a regular pillow.
These are a few of the patterns we have. These are several years old and I just finished making a bunch of replacements.
A few of the cloths in use
His new spiderman cloth
The football cloths(Junior was trying on the sleeves I had made from cutting the foot off of a long Christmas sock)

Pool Noodle and Duct Tape to the Rescue

Junior has chronic low platelets because of his seizure medication.
Recently I noticed that his vest treatments are causing a great deal of bruising on his arms because he has learned to stiffen his arms and knock off the hoses.
This may be an idea that no one else can possibly use but thought I would share what we did to make his treatment bruise free.
I place a piece of pool noodle around each hose, duct taped it in place and then covered it in a fleece pocket. I wanted to use velcro to hold the fleece to the hose but the hose ridges made that impossible. Duct tape to the rescue again.
Junior getting a bruise free vest treatment(the blanket across the vest is to avoid bruises from the clasps that hold the vest in place. Junior's platelet levels flux up and down, while up none of this causes bruising but when down everything does)

Tight Space

We live in an apartment so space is tight. Add to that having a mini picu here with all the medical equipment and you can imagine how things can get. Staying organized is essential and every so often I go through everything and reorganize. The past few days I have been attacking each room. First in line was Junior's bedroom and closet. I thought I would share how things look now and what we have done to keep things organized and as "small" as possible.
The pictures actually make his room bigger then it is.

When you walk in the door and look straight ahead you will see these shelves. This is actually a garage unit but works perfectly and we don't have to worry about how much weight is on it. The bar with the motor hanging on it, is Junior's lift.
The tubs and organizers on the shelving unit
To the right is Junior's closet. I love his closet and I love how big it is especially considering it is in an apartment. There are a lot of medical supplies in the colored cubes you see in the closet.

The shelf between our beds with his stationary suction machine and oxygen monitor. The drawers have the supplies for those two machines
Junior patiently looking out the window while I clean and reorganize.
Feeding pump, his tv, and more supplies. All those cards are the ones he got for his birthday. He loves waking up and being able to see them around his room.
His medical cart. This is where most of his main machines are. It is on wheels so I can move it to wherever he is in the house.
Good night Junior, actually he wasn't quite asleep yet or he would have his bipap on.
Not a real exciting post but Junior thinks it is cool that I shared his room.
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Maple Leaf Mission

A few weeks ago a wonderful lady with a group called the Maple Leaf Mission came out to do a photo shoot with Junior. The Maple Leaf Mission does photo shoots for those with chronic/life threatening medical conditions. Be sure to check out their website to learn more about this great group.
The photographer did a fabulous job and I love all the pictures(Just a couple of the many pictures).