Doing Things My Way

Junior loves to do things his own way. He loves to tease and "get you". Today he was using his head switch to play with his fire truck. He was turning his truck off and on and hitting his switch just perfectly, that is until I pulled out the camera. You will see on the video that he starts to lean for the switch but then decides he will tease me and hit the switch in his own special way.
This was taken this evening and you can tell by his movement that he is tired.
First a picture of him hitting his switch the typical way.


The past few months I have discovered that Junior loves country music. I am not a big fan but Junior starts singing and laughing whenever it plays.
Today he was trying to sing and dance with Shania Twain.


I just realized that in a little over a month I will have a teenager. Wow, it is hard to believe Junior is nearly 13. We are truly blessed.

40 Years

Happy Anniversary Mom and Dad. Thank you for being such amazing parents. We love you and hope today is very special.

Junior sends extra big hugs and smiles.(this pic is from 2 years ago but still one of my favs of Junior and a-ah)

Whats in the Bag

It takes more time and a great deal of work but I am really enjoying cooking for two. I also love knowing that Junior is now getting food that is good for him. A bonus in all of this is that I am finding myself making much better food choices as I research Junior's nutrition needs. A new journey where we are both eating much healthier foods and finding that eating better means feeling better.

Instead of a formula that was 53% corn syrup solids this bag now holds bean and rice soup, a wide variety of vegetables, and rice milk(for thinning). He also gets an afternoon feeding and gets his fruits during that time.
This is his overnight feed so the bag is only hanging like this for the picture.

Here is his bag prepared for the night(it is surrounded by ice packs to prevent spoiling)

Day 4

Junior started the blenderized diet on Monday and is doing well. We have already seen some positive changes in several areas. Mainly in his intestinal health but I have even seen an improvement in his oxygen levels. Amazing how with Junior everything affects his lungs. The stomach pain/cramps that had become so frequent are all but gone. I am curious to see how things will be in another couple weeks.

Today was Junior's SSI review. The review went fine but Junior spent nearly the entire time we were there in tears. There was a very cute and happy little boy sitting across the room who kept squealing and giggling. Every time he squealed Junior started to cry. Junior usually thinks such things are funny but something about the pitch of this little boys voice was actually painful to him. He was even telling me "owww, owww" when the little boy would squeal.
He remained out of sorts for awhile once we got home but finally calmed after a chat with grandma, though poor grandma had him telling her all about it and crying in her ear.
Junior using my blue tooth to tell grandma his very sad story.
A short time later Junior was laughing and watching his shows.
(his eye ointment is the shiny you see on his face)

I have a question for all the parents out there using a blenderized diet through a G or J tube. What type blender do you use? I just have a cheaper model and it takes quite awhile to blend and strain all Junior's food. We are going to start saving for a nice one that can blend up more types of food in less time. I would love some recommendations for a really good quality blender which can blend pretty much anything.

A Blenderized Diet

As most of you know Junior eats through a feeding tube in his stomach. Actually the tube he has is called a J-tube,it bypasses his stomach and goes straight into the top of the intestine.
When Junior got his J-tube a couple years ago we thought that it was no longer possible to give him real food and he has been on a special formula. I have wanted him off the formula for a long time and over the past month or so we have tried small amounts of real food(blended) through his tube. He did great and in fact as we increased the food his frequent tummy aches decreased. Today we met with the GI and I came in prepared to argue the benefits of a blended diet. Most docs seem to think I am crazy for even considering attempting this through a J-tube. Wow did I get a big surprise when our amazing GI told me to go for it. She didn't just agree she was excited and thought it was a great thing. We discussed the things we would need to be sure he got and that it would be a good idea to avoid meats. He will get his protein through grains and beans with olive oil added for the fat. She told me to focus on giving him lots of bright colored fruits and veggies(everything will need to be blended and strained so that it is formula consistency and can run through his feeding pump). The doctor thinks we could see a large decrease in his secretions now that we are removing all dairy products from his diet.

Tonight Junior starts a brand new step in his journey and I look forward to seeing how it works out.
Praying this goes well and helps Junior stay healthier.

Gone Fishing

Junior focusing on catching a fish
I got one, now to reel it in
Look I caught a big one
Trying to catch another fish
I caught them all

Relaxing

Last night when we returned from our special gathering the kids enjoyed being silly and relaxing. It was so much fun having Sarah, Jerry, and their kids visit. We hope they will make it back very soon.

Emmie is such a sweetie
She loved Junior's ipad
Junior was so tired by this time but when we put Drew in his lap and asked him to hold him, so we could get his treatment ready, he was so proud of himself.
two buddies getting their treatments




This morning I got an email from my mom and was saddened to hear that a new cadet at West Point had died during a training exercise(cause of death is not yet known). This young man wanted to serve his country and had put his all into getting accepted to West Point. Our prayers go out to the family of Jacob Bower and to all the cadets at West Point during this very sad time.

A Very Special Gathering

Yesterday we headed to Sacramento with Sarah and her family. We were were on our way to meet several other families, all brought together by our amazing kids and an internet support group. We had never met in person but as the families arrived you would have never known this. It was more like a family reunion. A family where everyone "gets it" because they are walking much the same path.
An experience none of us will soon forget.

Now for some pictures of our get together.
Junior was a very worn out guy but still had many smiles to share and loved meeting so many new friends.
Abby loved all the kids and had a wonderful time with them.
The kids
Moms
Dads
The Paparazzi
This sweet little princess does some sign language and this was her sign for all done. She had, had enough of those pictures
So many beautiful kids and parents to

Junior trying to decide what he thinks of this sweet little lady.
He decided she was pretty neat

sleepy princesses
A tired boy chatting with Kim before we headed home.
there were so many pictures taken but there is no way I can post them all.
I look forward to meeting everyone again.