Monday, November 24, 2008

Tiny Dancer

Braden seems to be finding more energy all the time to try new things. Some of them really crack us up... we feel kind of bad for laughing at our own kid sometimes, but it's a laughter of pure joy that he's picked up a new "trick" or met another milestone.

His newest protest to vest treatment is holding both arms up in the air like he's riding a Harley. Funny thing is that with the black vest on, he does kind of look like a motorcycle rider:-) This weekend daddy had put him on his right side to lay down. Braden kicked his way onto his tummy... over and over when we would place him on his side. He looked so uncomfortable, which is why we kept moving him back to start, but he would "dance" his way back to that position - it was so funny to see him show attitude and put himself right back where he wanted to be!

We had a busy weekend preparing for our friends the Heckerts to come stay with us Thanksgiving night, so mommy Kodi and mommy Doris can get up before the crack of dawn to hit those fabulous sales on Black Friday. Mommy laid about 120 square foot of new decking up in the attic to make room for Braden's old baby stuff and clothes he can no longer fit into, and toys and swings he is just too big for, so the guest room could actually hold guests:-)

We had some family pictures taken this weekend too... trying to get them all in while he is healthy and out of the hospital. We will post some in the coming weeks. Braden is a healthy and mostly happy boy these days, who even will open his eyes wide open a few times a day, an alertness we've not seen in him before since he was very small. It's exciting to see him develop and do new things. We thank God for every day we get to still be his parents.

Kodi, Brad, & Braden

Wednesday, November 12, 2008

Home Routine getting into swing

So we didn't want to "jinx" our return to home, so sorry we've waited to post. Braden has not made the easiest transition. His past ability to adapt quickly seems to have diminished on some levels, but no explanation nor situation is ever simple. Mommy and Daddy have had to readjust their expectations from our bouncing baby boy who has always been so resilient. Progressive brain damage is something we are all learning to adjust to. We have had issues with the heated humidifier and the in-line humidifier that has taken him some time to adjust to. While we were wondering if we will ever be able to live outside the hospital again, Braden has turned the corner.

Last night and this morning, we have met the upgraded version of Braden, Braden 2.0. He is a spunky little mess who kicks his legs around like crazy (a new talent) when he is not content with position, hunger status, gas pain, vest therapy, etc. This new wiggle worm is harder to get dressed and change diapers on. It cracks us up to see him wiggle around like a "wild man". I will have to try to catch video of it.

He is wide-eyed the past 2 days, looking more alert than we've almost ever seen him. Maybe the energy he is getting from his "mito-cocktail" of vitamins is allowing him to find more energy to use:-) He has figured out how to move his left arm around with fervor and in all directions, and the right one he will stretch out to the side. These are all new post-trach developments.

We hope to have fun cutting hair this weekend, it's getting long on him again. Don't worry, the curls aren't going anywhere. Thanks for the patience as we try to readjust to life in the real world again.

The Wilson's

Wednesday, November 05, 2008

"He's My Son" - home this weekend?

It looks like we might get to bring Braden home this weekend if all continues to go well with the vent. Braden seems well by all accounts, but he has lots of lactic acidosis that his body is not compensating for, and so it's not looking likely that we will get to take him off the ventilator for sprints like we were before. I don't think things look any worse, but he started doing some strange breathing patterns this week, and therefore, they have taken a closer look at his blood chemistry levels and based on past readings have come to this conclusion. While it's hard to hear, we know it's the right thing for Braden to keep him comfortable so that his body doesn't have to work so hard to overcome itself.

We are still waiting on more orders from the geneticist at Texas Children's to see what next. This disease 15 years ago was diagnosed once the patient passed and an autopsy was done... we are lucky to still have Braden here to help give us more answers! We will keep you posted on that too... but those tests take about 2 months to come back, so don't be in a hurry to get the answers.

As I was driving home the other day, I heard this song on the radio. While it brought tears to my eyes, I think it's beautiful, so I wanted to share. It's called "He's My Son" by Mark Schulz.
down on my knees again tonight
hoping this prayer will turn out right
See, there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure You can understand
Each night, as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes

Can You hear me
Am I getting through tonight
Can You see him
Can You make him feel alright
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God, who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there

Can You hear me
Am I getting through tonight
Can You see him
Can You make him feel alright
If You can hear me
Let me take his place somehow
See he's not just anyone
Hes my son

Can You hear me
Can You see him
Please don't leave him
He's my son
The Wilson's (Braden, Kodi, and Brad)

Saturday, November 01, 2008

Hospital Halloween

So we had another holiday in the hospital, let's hope this will be our last for awhile. We took our little "lord" for a battery test on our new vent, the LTV 950. (We thought since the vent would make loud breathing sounds, that Darth Vader would be an appropriate costume for Braden - why not play up your assets?). The hospital had a little halloween parade, and our friend Millicent got to join us for her first time off the vent on an HME:-) Her mommy brought her two outfits for her first Halloween, she was dressed like a kitty cat for the parade, and then she got dressed in her Minnie Mouse costume.

We hosted a few trick or treaters at the hospital. JazMyn had come to the hospital Thursday with a special delivery for Braden - a big stuffed frog she had beat adults for at the state fair! She first won a parrot but convinced her parents she had to have the frog for Braden, so she played again to win the frog. We promised JazMyn if she came to trick or treat, we would let her push Braden around in his stroller in the hospital (for a second battery test on the vent t00). What a great surprise to see her come dressed as a beautiful bumble bee!! Little miss pushed Braden around for over half an hour - she was so proud she could be "in charge" of her little man for awhile. Braden's Darth Vader costume didn't seem to scare her one bit:-)

Our friend the Heckert's came by with little Jackson in his punk rocker outfit to see Braden too. He was happy to see his little friend as they shared a few moments together.

Thanks to our friends who have sent cards and e-mails of support, and thanks to friends Dianna, Courtney, Kelly, and Debby & Jim for giving us a reprieve from cafeteria food!! After more than two long months of living at OLOL, the menu has grown tiresome. It's not great food to begin with, so after such a long time, eating here can be a real drag and even a downer. So the little breaks our friends have given us have been a welcome change and blessing and a lift to our spirits too!

Today mommy and daddy did some extra training with the Respiratory Therapist on the new vent and some of our home equipment. Tomorrow our plan is to take Braden and a nurse outside to experience some of our beautiful weather and give the battery another, longer test. We will probably stay another week in the PICU on our own vent and own heated humidifier equipment just to be sure Braden's body is responding well. HE IS STILL OFF OXYGEN SUPPLEMENT ON THE VENT!!! We are so proud, and not surprised by our strong little hero. Given our diagnosis, we just want to take him home and love on him and make life as normal as possible. I think I might pull down all the Christmas stuff soon this year, and put up all the colored lights I can find for Braden to enjoy as long as possible. I wonder if I can find some Christmas lights that change colors...

Thanks for visiting.
Braden Wilson & Proud Parents Kodi & Brad