Feeding bag adaptions part 2

My last post I shared how we had made a cover to hold Junior's feeding bag while at home. 
I used it for a couple days then changed a few things to make it work a bit better and made another one.  Hopefully these step by step pics will show a little more clearly how it was made. 

The first one required more frequent changing of the ice brick so one of the changes on this one was to put a double layer of fleece in the center before adding the PUL(water proof fabric).  I also made the bag a little wider and used more velcro so the bag was much better insulated.  I gave the bag a test run today and the ice brick now stayed frozen even longer then it did with the insulated back pack. 

So to start with I figured out the length and width I wanted the bag and cut 2 sets of matching fabric(also a change from the previous bag).  I cut the outer fabric and inner fabric to the same measurement but then cut the fleece shorter.  I laid the fabric with the fleece on the bottom then the PUL then the outer fabric(inside out).  Pinned the edges then stitched along both sides leaving the top and bottom open. 

The layers of fabric, this pic they have been flipped so the fleece is on top. 

 This pic shows how the fleece is not as long as the other fabric. 
 
Ends are left open.

 Then turn fabric right side up so the flames are now on the top and the PUL is on the bottom(you no longer see the fleece). 
Hem the ends of each(I folded them under then stitched across).

 Do this on both ends of both pieces.



Now place the end of your two pieces together(lay them one on top of the other) with the PUL fabric on the outside and stitch part way across from each side(just on one end).  This leaves  an opening for the top of your feeding bag.  I just slid the feeding bag in place then marked the fabric so I knew how big I wanted the opening.  The fleece being shorter then the other fabric meant I wasn't trying to sew through so many layers when I did this part. 

 Now flip the fabric so the patterned piece in this case the flames are on the outside. 

 Shown with the feeding bag end coming through the top. 

 With the feeding bag laid on the inside I figured out where I needed the pocket for the ice.  Then I cut a piece of the PUL fabric, hemmed the edges and stitched it to the inside of the bag.

 Figuring out the size.

 Pinned in place for stitching.

 Pic is sideways but this shows it with the ice pack inside it.

 Once I made sure it was how I wanted it by putting both the feeding bag and ice pack in it to test it I added the velcro. 

 I lined the bottom and sides with velcro.

 I then added a loop just using a piece of black shoe lace.  I made it fairly short so it keeps the cover up snug around the neck of the feeding bag.

 In this pic you can see both the bag covers I have made and how the flame one hangs higher up on the feeding bag neck then my previous one and is wider.  With the velcro lining the edges it is very easy to get the bag in and out and to swap out the ice brick when needed.  it also allows you to run the tubing out at whichever spot you need to.  After using this for a few days I am really liking it and finding it keeps the food cold and it is actually much easier to use then the back pack we had been using. 

Hopefully this wasn't completely confusing.  I basically just used the feeding bag as my measuring guide as I went so don't have real measurements for this.

Feeding Bag Adaption

Junior is on continuous feeds so we keep his feeding bag in an insulated back pack with an ice pack at all times.  The back pack came with his pump and is made just for the bag and pump and allows us to easily go out with it.  Problem is that we use ours all the time not just on outings so they wear out.  These back packs are very pricey because of their "medical" label and not easy to replace.  I decided I needed something else to use while at home, so the back packs can be saved for outings and will last.  I pulled out my fabrics, velcro, etc and tried making something to hold his feeding bag and an ice brick while at home. 
This is a "rough draft" and I just kind of figured it out as I went so it is far from perfect.  I will test it out for a few days and if it works well I will make another one and then post step by step pics when I do that. 
For now here are a few pics of it and the short version of how I made it.  Does anyone make insulated bags for their feeding bags?  Any ideas on the best way to make them.

I used 3 layers of material the outer is denim(I am sure you could use something different for that), middle is fleece and inner layer is PUL(the waterproof fabric used in cloth diapers).  I turned them inside out and sewed a tube then turned that right side out and folded the tube in half.
I used some more of the PUL fabric to make an inner pocket to hold the ice brick.  Cut a hole in the top which I then edged with some bias tape and I ended up putting bias tape along the edge of the entire bag.  I then lined the sides and bottom with velcro and thats about it.  I also made a loop at the top to hook to the iv pole so the cloth wasn't getting pulled too much.
That may sound very confusing but when I make another one and post again I will have better directions and step by step pictures.  As I mentioned before this was just a rough draft.

 I was going to just have the bottom open but realized that would be a real pain when it came to putting the feeding bag in and changing out the ice pack.  Instead I lined both sides and the bottom with velcro so the entire bag can open for easy access.

 After putting in the feeding bag, the ice brick is also in the pocket though it can't really be seen in this pic.

 Velcro closed and ready for the iv pole.

 Hanging on the pole and being used.  After a few days to testing I will see if any major adjustments are needed before I make one more for him.  I need to see if the fleece and PUL are enough insulation so the ice brick keeps the feeding cold for several hours and if I can easily fill the bag and replace the ice brick while it is hanging. 

update to come......

School Time

School should have started this week but Junior's asthma hit hard and we have needed to put off starting school until this next week. 
We are starting a unit on space(solar system and space exploration) and I have had a great time hunting down activities and projects.  I will post some of our activities here and you are of course welcome to follow along on our regular blog.

Just for fun here are a couple of the sensory activities that are ready for Junior.  A space sensory bag and a sensory bin.  The sensory bag is the same as others we have done click here to see a post on how we make these.  This one has stars and I found a pintrest post where the person had put black paper behind it to give it the space/night sky look which was a great idea.
Secondly the space sensory bin.  I found this idea on pintrest (Galaxy Sensory Bin) and then adjusted it to meet Junior's needs.  I used a piece of "space blanket"(emergency blanket which can be found in the camping section at walmart) instead of the tin foil because I knew Junior would tear right through the tinfoil when he stiffened his arms to push them into the items. The black part you see is black beans then a set of planets as well as a space shuttle and some other "space" items we had on hand.  The planets are fairly large but for Junior that works well.  

Joni and Friends Family Retreat

We just returned from an amazing week at Joni and Friends Family Retreat.  Feel free to jump on over to Junior's regular blog to hear all about our adventure.  So far I have part 1 up and am working on part 2.  http://heidis-place.blogspot.com/2016/06/joni-and-friends-family-retreat-2016

Eagle Eyes

 I wanted to share this post here.  It is from a couple weeks ago when Junior and I took the Eagle Eyes training.  He is loving using Eagle Eyes and it is so exciting to see him able to do so by himself.  I wanted share here so others with children who might benefit would be aware of the technology. 
After copying this post here from our regular blog I realized the videos did not copy.  So if you would like to see the technology in action here are 2 posts that each have videos of him using Eagle Eyes.
Here and Here

This week Junior and I were able to learn about and experience some truly amazing technology.  Something which has the potential to open a whole new world for Junior.  A system that uses eye motion as a replacement for the mouse on your computer.  You can click HERE to visit their website and learn more.

We were introduced to Eagle Eyes back when Junior was very small.  At the time it was fairly new and we would have needed to go to their facility to do the training and let Junior try it out. With his health this was just not an option for him. 
  As much as we love his ipad and the ability to communicate that it has given him I have always wanted him to have a way to feel more independence in  how he accessed technology.  He is a teen and gets frustrated at times because he wants to do things himself but in his world that's just not an option with most things.

Our local school district agreed to bring Eagle Eyes out for a training and to see if it would work for Junior.  The last two days we spent learning to use the system and then trying it out.  The Eagle Eyes trainer did a fabulous job teaching us about the system and how it works.  Probes are placed on the face which track the motion of the eye and transfer that to cursor motion.
I tried it out first and wow what an experience, I would have flunked if it was a test.  Trying to use my eyes to move the cursor and not move my head was not an easy task.  Junior on the other hand has always had limited body movement and depended on his eyes for everything.
Something like moving the cursor completely across the screen had been close to impossible for me but he did it without a problem. 

 There will be a learning curve as he learns to use the system and control the cursor and it will take time for him to move from the simpler to more advanced activities.  But watching him use the system for the first time and seeing the smiles and excitement when he realized he was in control and making things happen on the screen all by himself was nothing short of spectacular. 
 Junior all hooked up to the Eagle Eyes system


Learning to move the cursor with his eyes. 

A a video of him learning to move the cursor with his eyes.  He had to move the cursor to the target to get a music video to play.

Another short video this time he is shooting aliens.  We discovered he has a huge peripheral vision field.  So though he looks like he isn't even looking at the computer screen he was seeing it just fine(so neat to have the probes attached to him and get such a great picture of how he "sees").  This explains so much about his vision.  Often he will appear to not be looking at the tv yet is laughing and carrying on as if he is watching it.  We have always assumed his response was because he had seen the shows often and was just listening but now we know he can actually see from that angle and in fact seems to prefer seeing from that angle.

Our training team minus his teacher who had left before the pic.  Thank you to Eagle Eyes for an awesome training.  We can't wait to see the impact this technology will have on Junior.

New Transfer Seat for the Car

This is a post from Junior's regular blog that shares about our new seat which is definitely and adaption/modification so I wanted to share it here as well.  This is from a few weeks ago so I am including a quick update at the end to share how we like it now that we have been using it longer.

On Friday we had the new seat put in my car for Junior.  He is now about 90 lbs and we had been trying to figure out a better way to get him in the car for outings.  A wheelchair accessible van would be optimal but is not a financially feasible option so we needed to find something that would help and not require us to purchase a new vehicle.

A few months ago an assessment was done and they looked at our current vehicle and Junior's needs and the options available to help.  We discussed that it is not the lifting that is the big issue but the leaning over into the car while lifting my 90 lb boy.  They recommended a rotating transfer seat(called a Bruno Valet seat), something I had heard of but did not think could be put in a small car.  This seat rotates and slides forward so that Junior is for the most part outside the car for transfers.  It removes the need to lean over into the car while lifting him.   He has used it a couple times now and we are learning the ropes and how it works best for him.  The first time we tried it I was concerned because it took some serious maneuvering to get his feet into place during the seat rotation.  Since then I have had a chance to play with things a bit and learn that the seat does not have to be so far forward to rotate out of or into the car.  Yesterday he had an appointment and transfers were much smoother and I was pleased with how it worked for him.  I can now lift him from his chair turn and sit him down on the car seat.   It allows me to be in a proper position to lift and transfer him and my back is oh so much happier now.
Junior was exhausted after his appointment yesterday, as you can see in the pics, but this gives you an idea of how the seat functions.  Once the weather is better I will get some pics/video of it in action.

So thankful for a program like Regional Center which provided funding and gave us this new tool to help Junior live life to the fullest.  We are blessed.

*Update*  3/19/16   We have had a busy few weeks with doctors appointments so Junior's new seat has gotten a great deal of use. Junior is on the short side at 4'8" and I noticed he seemed at a bit of an odd position when in the seat.  When I realized it was from the lumbar support hitting him high I ran to Walmart to see what we could figure out to help.  They had a memory foam seat cushion specifically for the car so I gave it a try.  Just 2 inches of rise to his seat and he looks far better and is now quite happy and comfy in the seat even for our lengthy drives to appointments.  The difference in lifting him is huge, not that he is any lighter but not having to lean into the car to transfer him is such a difference.  I was curious to see if it would really make a difference in things with repeated use and it absolutely has.  I get back from a day out where I have needed to transfer/lift him multiple times and am not completely exhausted.  I have also learned that putting his car harness on while he is in the "out of car" position in the seat is much quicker and easier.  Getting out is less stressful meaning we feel like we can get out more often and enjoy life with Junior. 

Junior enjoying his seat, he has his back brace on which is why he is able to sit so nicely in the seat like that.  Also with him being short we use a head rest from his old car seat which is the blue you see behind his head. 

Way Behind, Junior's Favorite Toys 2016

Wow, it has been a few months since my last post.  Things have been crazy and it has been a very tough winter medically for Junior.  The last couple weeks have been much, much better so we hope the winter time illnesses are over. 

I thought I would share some of Junior's favorite toys/sensory items.  Things that are favorites right now.
Of course at the top of his list would be his Ipad but that is something not new to our list and more a communication device then a toy.

Switch Toys - with his current favorites being his Fart Blaster, talking Minion, nerf dart gun, and disco ball
The fart blaster and talking minion were both given to him by a program called Santa's Little Hackers.  This amazing non profit group gives switch adapted toys to those unable to use toys the typical way.   Visit their Face Book page for more information Santa's Little Hackers
  (the thing hanging above his fart blaster is a switch adapted light saber which he also really enjoys)
 

His switch adapted dart gun, you can find the directions HERE

We purchased this disco light on Amazon and plug it into his powerlink box to make it switch accessible.  HERE is the Amazon link for it and HERE is a post about the Power link.

Junior has lots of toys he loves but I will just post a few of his top favorites and newer ones.
Here he is with his chimes, we hooked his extendable stylus from his ipad to his head so he could play them independently.  We found these on Amazon and I am not terribly pleased with their sturdiness but there were several other options when you search chimes(these were the cheapest so we got what we paid for though the sound is great).
 
He got this awesome R2D2 bubble blower for Christmas and it has been a huge hit.  It makes all the R2D2 sounds, the head moves back and forth and then blows bubbles.  Click HERE to see this toy on Amazon.

Another favorite which he got for Christmas is his Zoomer dog.
We put it in his inflatable sensory tray and set it next to him and he loves watching it run around, roll over, and do lots of other things. It also has light up eyes and barks.  HERE is an amazon link to see more about this toy.

This past week we visited Build A Bear and he got something he has wanted for a very long time. A wheelchair for his tubie monkey.  He loves it and was so excited to get it. 

At the moment Junior also loves all things Star Wars so his mini sensory tray currently has star wars characters on it.  For a post with more about the sensory tray click HERE

His basketball hoop and ramp would also have to go on this list though it is something I have shared about before.  Click HERE for more about the ramp and hoop set up and HERE for a more update version.  In the second version we replaced the pole with a piece of pvc covered in pool noodle and used velcro to secure it to the top of the IV pole. 

 

The loved switch adapted game spinner.  Here it is being used to play the board game Sorry but we use it for many other games and activities as well.  HERE is a post where I talk more about the spinner and where to get it. Here are links to posts we have done about adapted games. 
Cars Tip the Tractors , The Farm Game , Hi Ho Cherry O , Sorry , The Jelly Belly Game  , Trouble , Candy Land  , Chutes and Ladders   , The Toy Story Game   , Angry Birds , Puzzle Board(I guess puzzles sort of fall under the game heading), Smurfs , Cat In The Hat , Memory .  We are always on the hunt for adapted games or ones that we can adapt so if you have found a way to adapt a game we would love to hear about it.  Junior loves games and is very competitive.


Now on to his favorite sensory items.
We have used weighted blankets for many years and wanted one to take out with us.  This is his mini lap size version of his weighted blanket and it has become something that goes with us everywhere and really helps him when he is stressed.


The mini weighted blanket is what you can see folded on his lap in these pics at a doctors appointment. 

Mini Finger maracas, these are perfect for Junior.  The center is soft rubber so he can hold them and anytime he moves they make noise.  HERE is the Amazon link for these

 

Insta snow and water beads continue to be favorite sensory activities along with foam soap 

 

 

Moon sand, another favorite which we have talked about many times. 

 

Also can't forget his giant toy bar turned planetarium which continues to be a favorite spot to relax.
HERE is a post about his planetarium and HERE is a post about how we made the giant toy bar itself. 

  This list could go on and on with both toys and sensory items but this list hits his current favorite items or at least most of them.