Tuesday, February 28, 2012

Blue and Gold.

Saturday evening our family gathered together to watch as Wyatt moved onto the next rank of Cub Scouts at the annual Blue and Gold banquet.

He has now completed his year of a "Bear" and has moved onto being a "Webelo." A Webelo, as I understand it, is half way between a Cub Scout and a full fledged Boy Scout.

We ran into a slight hurdle this last week as we tried to put on his Cub scout shirt, the official "class A" uniform. After nearly ripping out the side seam as we pushed and shoved his arms into the sleeves, we then realized it was a few inches too small down the middle also. I was hoping it would be close enough that we could fake it, however the buttons weren't even close to touching. The shirt fit well in September, but with all of the extra fluid his body has been hoarding the last few months, he has stretched and "grown" a lot. So, what were we to do?! Well, we made a Class A snuggie, of sorts.

Taking a pair of scissors and slicing up the entire back of the shirt, length wise. It worked great and no one suspected a thing as he sat in his wheelchair looking so handsome and put together.

Wyatt made it through the first portion of the ceremony but began struggling to get through the last half. We decided to cut the evening short due to how he was feeling.

Cub Scouts has been a great activity for this boy. He enjoys spending time with the other boys and partaking in the scouting activities as he's able. Unfotunately, due to his health this year he hasn't attended many of the meetings or events, but he worked through his cub scouting book with Bryan and attended what he could. He's looking forward to this next year in scouting. And we hope that in one way or another we can make it happen for him.

The girls also attended the ceremony (and were not too terribly upset at the mention of leaving early). Jilly commented that there were "too many boys!"

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Friday, February 24, 2012

A more thorough update.

 As promised, a more thorough update of the last few weeks...

Wyatt's been keeping us on our toes with several new, colorful issues recently. The boy's body appears to be stressed. He's tired and not sleeping well. At times he's very pale and the circles beneath his eyes have grown. The circulation of blood throughout his body is proving to be difficult for him to keep up with these days, creating drastic color changes in different areas...purple, blue, grey. We've seen a little of this before, his circulation has never been perfect, but not to this extent. Earlier in the week he began to drain a very interesting, dark purple colored bile from his J-tube, as well. I'm not sure what to make of it, but it's since stopped and we're back to the usual brown/coffee colored stuff that we're used to. He has also begun to experience issues with his supra pubic catheter and/or bladder that we're currently trying to sort out with his urology team. Our go to doc, Dr. R, is currently out of the country, sharing his medical knowledge else where. Which is a wonderful thing that he does, but right now we're missing that knowledge and looking forward to his return! 

We recently purchased a new seating system for Wy, the Special Tomato Soft Touch Sitter with mobile base. A similar brand and set up was originally ordered for him and processed through our medical insurance but was denied. While we could have appealed repeatedly and "fought" for what our son needed, we knew it would likely take months. Time that could very possibly not be on our side. The week I was talking with our DME about the insurance denial was the week that Wyatt was feeling so good, which was a bit frustrating knowing he could be greatly benefiting from this seating system now.

I then hit the Internet looking for prices, sales, discounts, comparing brands. I found the Special Tomato seating system on sale with a discount and a few days later it arrived to our door. We are so incredibly pleased that we purchased this chair when we did. It's perfect for our boy and his current supportive needs. His feet touch the ground when sitting in the chair with the mobile base, allowing him the chance to slightly push and move himself with his own power. Of course, he's still "tied down" with the multiple IV lines and tubes, unfortunately his equipment doesn't fit on the chair with him. But it's motivating for him to feel and see that he can still move himself in one way or another.

What makes this system even better...the seat itself can be removed from the base and used in a variety of ways. (Forgive me for sounding like an advertisement!) We found it works well on our dining room chairs. And this week, I remembered the net-swing that we bought many years ago. Specifically for the purpose of giving "Mr. Sensory Seeker" (Wyatt) an appropriate outlet for sensory feedback when he was a toddler. All three of the kids enjoyed this swing incredibly in their toddler years. So in a spur of the moment inspired thought, I hung it up, lowered the chain and placed Wyatt's special tomato seat in it. It works perfectly!

Wyatt's able to push himself with his feet and swing gently, providing him another comfy spot in our home and the ability to move his body with his own strength in another way.

So, while we are juggling concerns and waiting for the doctors return, we've been "making it work," words that describe my feeling about our life the last several months. We've been given this beautiful family, this wonderful life...it's up to us to make it work. Being happy and grateful to be living life, even within the constant medical chaos.
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Thursday, February 23, 2012

The Zoo.

I realize it's been a couple of weeks since I last updated and many are wondering what we've been up to. The days have been busy, as usual, in the DeStephano house. Monday, while the kids had off school and with the winter weather being as mild at its been, we took a trip to the Zoo...everyone in our home loves the zoo.

On Monday we found several animals actively enjoying the day. Except for the one bear that decided to hibernate next to the large glass viewing wall. His butt snuggled into his large nest of leaves and right up against the glass, sprawled out on his back, his belly comfortably exposed, snoring away. His floppy lips quivering with each of his slow deep breaths. A very funny sight!

While the bear was missing the winter months, we moved on down the path to visit some of his more active and entertaining "friends."

The polar bear was soaking in the sun and attention, almost appearing to smile at his fans. The Tiger was kitten-like and playful, the mokeys were active and engaging. And the gorillas, they were clearly showing off!

My own three little animals greatly enjoyed the warm winter day together. We look forward to returning to the Zoo again soon.

More of an update (and more pictures) coming soon, I promise!

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Thursday, February 9, 2012

Summing up the week.

These pictures sum up much of the week in a lot of ways. Wyatt's lost the "spunk" that we were relishing in last week.


He feels as he looks. Not terribly "bad", but not "good" either. His body has been stressed, leaving him floppy and tired.

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