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
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