Sunday, April 18, 2010

Charlie's With Me

Char's uncle Juan found this video a little while back and Char's superannuated auntie felt it prudent for his blog. Respecting my elders, as I always do, here it is. This is by Collin Raye who wrote about his granddaughter who recently passed. She was also infirmed much in the same way as Charlie and should I ever be privy to the presence of The Almighty I'm certain it will only be because Char said, "He's with me."

I used to be the guy that gave the awkward stares and wasn't sure how to act around those more pure, but now I don't even really notice when those stares are directed at Charlie. We get them to be sure but Britt seems to be the most in tune with the attention Char gets in public. It's pretty humorous when Britt sees someone eyeballing his little brother and he'll stare right back and very nonchalantly mention, "He's my brother and he has a brain injury."

Here's the lyrics, mostly for B-Low who won't be able to hear the song.

She’s with me
I proudly tell the maitre de as we arrive
He seems surprised
In a clumsy moment as he looks for room, for her blessed chair
A table stares, and their eyes show only pity
as they try to sympathize
Oh, how difficult that must be, look away
Day after day, they’ll never see, the joy you bring
Only happy at the times I know that she’s with me

I wear it like a badge of honor at the mall
I hear her call, the only way that she is able with a cry
Time to go bye bye, she can’t say why
Maybe tired, maybe hurting, god I wish that I could tell
Do I ever make her happy for awhile
To see her smile, makes my week,
Though she can’t speak,
She let’s me know she feels my love when she’s with me

I know just what heaven looks like when I see that perfect face
For no other mortal heart could be so fair
I myself so weak and weary, so imperfect as a man
How could I be the one you chose to care for our girl
Never done a single deed to earn the right to share her light
Though it’s such a painful road we walk each day
Lord you have your ways, this I pray
On the day I stand before you, she’ll stand right by my side
When you look upon me, head hung down in shame
I’ll feel the blame, she’ll look at me,
And then she’ll speak, in that precious voice
Don’t worry ‘bout him my lord, cuz you see,
He’s with me

Monday, March 15, 2010

Relax... It's Only Been a Month... Or So...

Liars... we/I am/are filthy/dirty rotten LIARS. How presumptuous of us to suppose that we would really maintain this blog appropriately and concurrently promise that as much would occur. Let me first speak as plainly as I know how. Resolutions, esp. those made by others invoking your involvement SUCK/BLOW. My wife's intentions were pure in suggesting that we would effort to more frequently update. My cooperation however was verily ungenuine. I'm hoping that my apparent/obvious lack of enthusiasm regarding the blog isn't being construed as a lack of appreciation for the august effort, therapeutically, that so many of you are involved in. We are in a continued/constant state of thanks and indebtedness.

Charlie's therapy is like a swiss clock. All of his Angel's have become rather proficient at their art. Progress is slow but we still see new things here and there. The most significant of late is his awareness. In undertaking this program we fully expected his progress to be purely physical and while we have reached some mile stones in that regard it is his mental faculties that have improved the most as of late. Charlie has started to recognize and respond appropriately to different individuals and he does have his favorites. He has started to anticipate certain things, mainly food and his overall awareness is getting better every day. It's as though he's starting to figure out where he is in the world. He doesn't really care for patterning and he's not afraid to let you know about it. The rest of therapy he doesn't mind. His favorite is songs and hot packs.

I think it apropos to use the blog to thank Suz for her labors. Tirelessly she arranges and rearranges varying schedules ensuring that Char's therapy runs smoothy. Surely many of you have come to know her and as we offer our gracious thanks to all of you we also say thanks to her. Suz I'm sure Char will put in a good word w/ the Almighty and the hours you have sacrificed on behalf of our dane bramaged boy will count themselves advantageous in The Book of Life.

A fine video was constructed of all of you Angels and as soon as I educate myself on how to upload or find a capable party to pawn it off on it will be posted. You should look forward to that.

Saturday, January 30, 2010

Update for Rob

This is Megan and I'm updating because Rob is too lazy.
I love Charlie so much and he has learned so much in the past 3 months. Ever since Angel and Rob have started therapy with him, he has improved tons and I am so proud of him. I love coming to therapy and seeing how much he's improved and how he can go super speedy down the slide. I love knowing he can hear me when I talk to him, and he reacts to hot and cold and rough and smooth, where at the very beginning he hardly even felt it. He's one strong kid.
I met Angel and Rob a little over a year ago. They have changed my life so much in the past 3 months. They have taught me so much. I cannot change their past like I would like to, and make all of this disappear. But I think also that it has brought a lot of joy and happiness into their lives, where it has brought so so much into mine. They have met many more people, come closer to others, and seen a miracle right before their eyes. As I have seen a miracle before mine.
Charlie is doing awesome. He's the strongest little boy I have ever seen, I love him more than words can describe. He is my hero.

Thursday, January 21, 2010

New Resolution

Rob and I have agreed to update the blog more often. It's been difficult recently to write because we see so many of our readers on a weekly basis and they already know how he's doing. Sometimes better than we do. Nevertheless, we have made a deal that when one of us does an update the other has a week in order to update again, so you should be hearing from one of us hopefully every week.

Today Charlie and I had a meeting with 2 audiologist, the cochlear implant representative and his hearing therapist. The meeting was set up several months ago to brainstorm ways to tell if an implant is working when a kid is unable to communicate. Normally with an implant the person goes back to the audiologist several times to fine tune the volume or programming so it isn't too loud and distorted or too soft to hear. Char just likes to complicate things. From testing we knew the implant was sending the signal to the auditory nerves but the test that records if the signal was reaching the brain had been negative. When that test was done I was reassured that it is negative in about 10% of people that can hear just fine but it still didn't give us what we were looking for. We didn't know if the signal was making it to the brain and if so did Char's brain even know what to do with that kind of information.
A few weeks ago, during Char's hearing therapy sessions with his Angel's we started seeing more and more responses to extremely loud sounds. At first they were very infrequent responses and hard to reproduce. He might occasionally blink or flutter his eyes when the fog horn or diesel truck horn (thanks Sammy) was blown, or perhaps stop moving his arms when the pots and pans were being banged together right by his ear, or widen his eyes when the synthesizer (thanks Troy) was played at maximum volume. Then we started to see more and more of these but only to loud sustained noises. With this new info the audiologists reprogrammed his implant. Mike the rep, turned the implant on as high as it could go and Charlie gave subtle but definite responses to nearly every test sound. He said some kids cry at this level but Char was all smiles. We were all really excited.
For the next 30 min we discussed how to keep the implant on his head now that he moves his head back and forth so much. The magnet strength was increased to the maximum with the caution to watch diligently for skin breakdown. He may be trying out quite an array of headdresses to keep it in place. Next time you see him you can comment on how good it looks and he might even hear you . :)

Wednesday, January 13, 2010

I Found It...

This blog must have been lost somewhere. That’s my only excuse for the non-existent updates, pictures, &c. Where to begin? It’s only by my own indolence this question is asked. So much has happened/changed since our cyber family was last made aware of Charlie’s well being. Left up to me I’d give a brief account of Char’s newly attained faculties but that would leave me in a less than amiable place w/ my dear Bride.

First let me offer our continued thanks to all of the “Charlie’s Angels” who w/o you none of Charlie’s progress would be possible. When Char’s sweet little body was neurologically devastated Angel and I were unsure how we would handle our straightened circumstances, but now after seeing the Herculean effort undertaken by over 120 of you “Angels” a way has shown itself. Every week 114 man-hours are devoted to helping Charlie’s circumstances become less narrowed. Our thanks will never be enough to show you how grateful we are for your labors but sadly it is all we have to offer.

We have been working w/ Charlie for just over two months and to appraise his progress one needs to understand his developmental progress/state before we started. His evaluated neurological age was 2 months old. His physical competence was non-existent w/o any movement that could be interpreted as meaningful. Vital responses to pain, sound or light were a no-go. Char basically lay around, cried and writhed in discomfort, which was invariably related to his extreme boredom. Those who have been gracious enough to assist Charlie in his convalescing have been able to experience first hand his marked improvements. He is now responding appropriately to tactile stimulus, his vision has become his most keen sense, he is using his arms a and legs in a meaningful manner and can motor down his slide pretty quick (should he be in the mood) and when he lays on the floor he’s gotten pretty good at holding his head up for short bits of time. His hearing is still a concern but a couple of weeks ago he started responding somewhat consistently to really high pitch noises. However all this aside Angel and I are most impressed w/ one thing. His awareness. All you have to do is spend a brief period of time with him and you can tell that the light is on. Smiles, grins and long sustained glances have become commonplace. But the funniest thing is that when he gets sad he’ll cry a bit here and there, then when he sees that your there he lets go with the most cute/pathetic cry that actually sounds like a normal kid crying w/ his little bottom lip all pouty. It’s awesome.

Our plan is to continue w/ the program until we meet our 6-month goal where upon completion we will evaluate whether or not the progress Char has achieved is worth the inconvenience we have selfishly imposed on you all. Our hope is that the benefits we see will merit continuance, and that as we continue you will press on w/ us in attempting to rescue any of our little boys native endowments that the Almighty sees fit to allow.

Below is the page from our families annual memory book that my eldest sib felt would be apropos for all of Charlie’s faithful following. (Click on it for easier reading.)