Junior's 2011 Update

Wow, I didn't realize it had been so long since our last post. Things have been so very busy. Junior's asthma has been bad and he has also been dealing with a sodium issue and will soon see the endocrinologist. This is a tough time of year for Junior with all the weather changes.
A couple weeks ago the ipad had a major crash and I thought it was done for. I had hooked it to the computer for the latest update to IOS 5. After the update I picked up the ipad and turned it on. Everything was gone as if the ipad was new, not one app remained. I had to redownload everything and start over(though I had gone through all the same steps I took in the past to ensure it is backed up and saved all was gone). I still don't have his communication app fully back to what he needs but at least it is set up enough for him to communicate his needs.

Recently at a visit to Shriners Junior discovered yet a new way to activate the ipad.
We were waiting on the orthotist and playing Snakes and Ladders on his ipad. Junior wanted to roll the dice himself so I put it up next to his face and he would turn and touch the screen with his chin to roll the dice. Its all about finding a way to make it work for you.

Last night I emailed out Junior's yearly update so thought I would share it here as well.
Update 2011

Dear Friends and Family,

It is hard to believe that Junior is now 13. He has had quite a busy year with many ups and downs but overall is doing well. He continues to inspire me with his determination and love for life, his joy bubbles over in all that he does. I am blessed and honored to be caring for Junior and thank God for placing him in my life.

I wanted to write a quick update on how things are going but wow that is not an easy thing. Just so this doesn't turn into a book I will only hit on the highlights from our year.

First off Junior continues to amaze us all with his communication using his ipad. He can not only tell you what he wants/needs but even use it to talk on the phone, or joke. The school district recently got him a switch interface for the ipad so he is learning to use his head switch to activate it. This allows him to use the ipad with much more independence. The ipad has changed his life in so many ways and has given him a voice.

The highlight of our summer was the gift of being able to attend the Joni and Friends Retreat near Santa Cruz. A huge thank you to those who made that possible. This was an experience we will never forget and we all had a wonderful time. We walked away feeling like we had experienced just a little piece of heaven here on earth.

On the health front Junior has his typical asthma struggles but fights through it like a champ. There are always those bumps in the road and things that make me nervous but for Junior thats just part of life. He doesn't want me to get bored. He started using the AVAPs(a more advance bipap) at night and his oxygen need has dropped considerably. He also continues to be oxygen free during many days and even some nights(miracles really do exist).
For several months he was dealing with a huge amount of stomach pain and discomfort. After being at a loss to figure out what was going on I spoke to a friend whose child was on a blended diet. At this point we were desperate so decided to give it a try. We started by introducing a few foods with his formula and quickly saw a change for the better.
After discussing it with his GI and getting the all clear to move to a completely blended diet(the same foods we eat just blended so they can go through his J tube) we stopped all his formula. Within 24 hours his stomach pain had completely disappeared. After a month he no longer needed any meds for his bowels and for the first time in years his protein levels were normal. I am noticing a higher energy level and a quicker bounce back after illnesses. I never could have guessed that taking him off formula would make such a drastic difference in his health.

Junior has been getting PT weekly for the past few months and absolutely loves it. His favorite thing is the special gait trainer which fits over the treadmill. He also loves riding the therapy bike. After hearing for so long that he was "too old" to progress we are finding that, that was so very wrong. He is making slow but steady progress and showing everyone what he is capable of with a little help and encouragement.

His most recent struggle is low sodium levels. Increasing his intake has not helped the problem so we will soon see an endocrinologist to get this figured out. Please keep this in your prayers. A seizure from low sodium is a very scary thing, something Junior can tell you from experience.

Just over 10 years ago Junior became part of my family. At times it is a roller coaster ride with many twists and turns and some scary drops but I wouldn't trade it for anything. Junior continues to teach me so much and has changed my life more then I could have imagined. Junior has taught me to seize the moment, and find the joy in the smallest of things. Life is a gift, never take one second for granted.

God's richest blessings on all of you.

Love, Heidi & Junior

Here are a couple pictures from Junior's recent photo shoot with The Maple Leaf Mission

Having Fun Today

Finishing up his craft today(still needs to paint the center orange).
Playing animal sound memory(this app is called Animal Sound Chaser).
Junior is really good at this game. You match the sound to the correct animal.
This evening he was using his computer to chat with grandma and David(the older of my two little brothers)

App Party

Starting tomorrow there is a party going on over on FB so be sure to check it out. A4cwsn is throwing an app party. You could get some great apps and will be supporting an amazing cause. A4cwsn is working to get ipads into the hands of special needs children across the US and even in other countries.

If you are looking for appropriate apps for your child be sure to check out their website
http://a4cwsn.com/ . There are videos of many, many apps in action to give you a good idea of what will or won't work for your child. Their site has saved me a great deal of money by allowing me to see apps before buying them.

No post is complete without pics of my happy boy and his ipad, busy day so haven't had time to download new ones. Here are a few of my favorites from the past month.

Combining technology. Playing baseball on the computer with his head switch and using the ipad with his eye gaze to tell me whose turn it is and when he is winning.
Using his ipad during a craft project in school
Using his head switch to activate an app on the ipad for the first time. Sounding board is the app he is using, he loved being able to tell me he wanted to watch tv all by himself. He didn't need me to "read" his response(the cord is from his speakers, the switch is connected by blue tooth).

Ipad Saves the Day Again

This morning our weather is doing what it does this time of year and changing yet again.
For Junior this means asthma and the dreaded sinus headaches.
He was a mess this morning, very unhappy and crying and telling me "ow, ow, ow". One of those moments I am so very thankful for his ipad. Prior to having it this could have taken a very long time of yes/no answers as we tried to figure out what hurt.
Instead I grabbed his ipad and he quickly looked at "Upset", which took us to his board which lists things that might be making him upset. He looked at "I hurt" to get to his boards so he could show me what was hurting him.
Amazing how quickly he calms down when he knows I know what is going on. He waited very patiently while I went to fix his tylenol
The big smile when I came to give him his medicine

A few pictures from earlier in the week.
Using his ipad during a craft project
Just so you can see what he is working on.
A couple weeks ago we visited the Grape Festival and Junior got the biggest kick out of these big murals made from grapes, nuts, grains, and other foods grown in our area. So we decided to make our own using dried beans. Ours is nothing like the ones we saw at the festival but Junior is having a great time.

Birthday Boy

This is almost a week late being posted.
Happy Birthday Junior!!! I have a teenager in the house now.
My sister surprised us with a birthday notice in the local newspaper.
Junior loves hats and he got this one for his birthday from his friend Carol
Of course with this being Junior's ipad blog we can't have a post without his ipad.
Here he is staying distracted with a tv show while at Shriners having his casts changed.
Junior is feeling better and seems to be over his bug. He is going through serial casting on both legs which is one of the reasons posts are sparse at the moment.

IPad With a Switch

Junior got the switch interface for his ipad a few weeks ago but it took us awhile to get it figured out. The directions were very poor and it wasn't until I called the manufacturer that we figured it out. Now if there were only more switch accessible apps available.

Junior is feeling much better and was ready to give his ipad and switch a try today. We started out
with an app called Tap Sequence. I had recorded one of Junior's Transformers into it and the switch allowed him to turn his own pages. As you can tell by the pics I need to take pics of the actual book so we aren't stuck using the available pics. Junior was so excited to be able to turn the pages all by himself that he didn't mind the nutty pics(though from his expression you can tell he thought they were definitely not what they should be). This race car looks nothing like Bumblebee from Transformers.
Then we tried out Soundingboard. It is a communication app that is switch accessible. This is not the one Junior uses regularly and was not programed for him. We used one of the pre made boards and I explained that he needed to hit his switch when the correct symbol had a box around it. I then walked him through it a few times. This is the very first time he has used this program. After that I pulled up a board for leisure activities and asked him what he wanted to do after his stander.
He used his switch to say " I want to watch tv". I was surprised that being his very first time he did so well and thought that maybe he just hit the switch and that was what it was on. Well I asked him to please tell me just one more time what he wanted. He sat and waited until it scanned back to "I want to watch TV" and quickly hit his switch again. We will work on this for awhile and then move to 2 switch scanning. This will allow him to use one switch to move the box forward and the second switch to make his choice. With one switch scanning he hits the switch to start the scanning and then every 3 seconds(or however long you set it for) the box moves to the next symbol. He clicks his switch when his choice is highlighted.
I then pulled up the yes/no board to have his tell me if he was ready to get down. Not sure what is up with them using a blacked out box for yes but Junior didn't mind. He told me yes several times just to show me he got it. a very proud guy

Ipad and Computer

Wow it has been over two weeks since I last posted on this blog. Junior has been ill and is also going through serial casting on his legs.

Junior finally got his computer from the school district last week. A few days later the mouse on it died. Junior's teacher brought by an external mouse to use until tomorrow when she can take the computer into tech support.
Today we hooked up his head switch so he could play some games. I set his ipad up also so he could tell me whose turn it is and if he needs help.

Baseball time(I was playing against him and he is one competitive kid)

A couple innings in he scored a run and then looked over at his ipad to tell me "I win". I guess it is a good thing because right after that the computer froze so we had to stop playing.