Saturday, February 14, 2009

Hell Hath No Fury Like a Fired Up Char!

I’ve been order to update this blog and since the order’er is one who controls my carnal proprieties I’ll comply. That and I guess it’s my turn. It seems like I haven’t done this forever and to be honest I’ve procrastinated because I fear that if I get going the update will just turn into a giant rant with an air of negativity that doesn’t belong here.

Charlie had a visit with his Rehab Doc., Terry S-N. What a gal and what a great physician. We were really looking forward to this visit because Charlie has not been a very good boy lately. You know what? I’m not going to sugar coat this… the past few months have sucked! We don’t know for sure what started it, but our best guess is that when we changed some of Char’s meds his system and damaged little noodle were less than pleased and expressed their disapproval by turning my sweet little man into an inconsolable demon offspring of Hades’. Now if you’re saying to yourself, "Man Charlie’s dad is a real jerk, doesn’t he know that he has a brain injury and can’t help it?!?!" Let me be the first to assure you that the import of my son’s condition is etched so piquantly* in my little noodle that not a second passes where it’s not my most keen concern. Any of you close to Charlie please feel free to utilize the comment section to offer you endorsement of our hero’s recent demeanor. Granted I have been known to spin a decent yarn from time to time, but not even I can embellish the substantiality of having to hold and coddle your child for 16 hours a day, 7 days a week because if you lay him down for more than 11 seconds (we counted) he instantly combusts into a frothing hyper-tonic piece of pissed off dude. After about 60 seconds he’s sweating like a fat man at a free dance and the screams go silent because he can no longer draw air all the while his mood grows more vehement every moment. The poor kid got kicked out of therapy! Now how bad is it for you when you become so un-fun that therapists, the most patient people on earth, say "I think we need to take a couple of months off and see if you can get him mellowed out." Poor deaf brain damaged lazy eyed drooling therapy dropout. I guess it’s good Charlie has no idea about self-esteem, cause I don’t think you can give Prozac through a G-tube. During our first experiences with this new mood we thought that we could just put him in his bed and he’d tire and exhaust himself and eventually fall asleep. We let him go one night to see how long he could keep it up and after about an hour and a half he was sweating so profusely that dehydration became a real concern and I succumbed and parented again. This may sound insensitive but I now know why parents shake their kids. I say that only as a point of emphasis and I assure you Charlie has not been shaken and should anyone try they will find me sideways of them. Again, if you don’t believe me just ask someone who isn’t full of it, i.e. my wife. Or I could just set Char down, wait 11 seconds, take some video and post it here. You let me know.

Luckily, his ire has receded in the last week and with the light and knowledge received from Dr. Terry we have hope. Angel has been given certain latitudes to liberally alter medication at her discretion with the goal of long-term placation. Cross your fingers as we try and walk the fine medicinal line of well-tempered vs. well-doped. I guess if you want the nitty gritty details you can call Angel and talk to her. She’s way better with that kind of stuff. It’s better for all of us if we leave the details to her and the bloviating to me. I’ve just never been that into knowing when he had his last suppository or if his meds changed from 1.33 ml. to 1.5 ml. Sorry.

So the 5k is coming up and we’re all excited to see you again. We hope you can come! My sibs have been put on the committee and I’m told that with Meg’s degree in party planning and Suz’s OCD things will run ultra smooth. Tell your friends and just know that if you don’t show up and I think that you should have, you better have an awesome excuse like your preggo and about to calf out, like Sport. Or the next time we see you Charlie will give you the stink eye (with his good/straight eye) and cry because he thinks you don’t love him. How’s that for guilt?

*(meggie/whit, adv. –sharp/stinging)


Ginny said...

hey, rob, it has been a while! that was refreshingly entertaining, despite the conveyance of char's uncomfortable demeanor! so glad it appears he is finding his smile once again and you (all) will hopefully have some respite.

i'll be there for the race...i fear char's wrath!!!

Anonymous said...

Yes Rob I can atest the not so happy Charlie,when he is mad and screaming he is stiff and therfore a diffcult one to do thearpy on. I haven't been there for a couple of weeks because of my duties of grandma and watching kids (how could i bring 5 or 6 extra kids and work on Charlie) and now thanks to them I have one whale of a cold, hacking and all that goes with it. I have missed Charlie and I hope that I can see him next week.
Hang in there and know that you are not alone and that the angels of heaven (Gammy) are with you. The Lord will bless you and give you the strength that you need to face each day and do what you have to do.
We love you guyes.


Katie Jo said...

if you need someone to hold the cute litte guy, give me a call! I'm so sorry that he has been screaming! You guys will be blessed for this! I love you all!

Anonymous said...

I am looking at the time you posted and I assume you were up late caring for Charlie! I cannot imagine what you have all been through! I trust Angel to find the correct meds to help Charlie and all of you, be more comfortable. She is an amazing mom! I will continue to pray for all of you. I know that doesn't feel like it helps too much when you are holding a stiff screaming child, but I pray for blessing of peace to come your way! I am planning on attending the Brain Injury walk. I can't wait to see all of you!

dave said...

Hey Kids...I can totally understand your pain. Rob, I have been there with that shaking thing. I understand how you feel. Sometimes you have to just walk away. Stay strong you guys! See you on the 5th.


Suz said...

I really try my darnedest to NEVER agree with Rob but I cannot dispute Coops foul disposition. I have felt so bad for the little man cuz I know he doesn't want to be a stink. It is so sad to see him so agitated. I am glad that he is mellowing a bit and I look forward to getting back to business at therapy not to mention some smiles and eye contact.

whitney said...

Somehow I knew that the * was for me, and it scares me that I may know you well enough to know that Rob. "Poor deaf brain damaged lazy eyed drooling therapy dropout." Why is that such a funny line? Really, it is so not cool to laugh at that, yet, still laughing. Did you miss a hyphen or a comma? I agree with Suz, you know sweet Charlie does not want to feel this way, so he is much conflicted. I hope his behavior of late is a new trend. Joey would love to come over and run cars and trucks all over his body, I'm sure Charlie loved it the first time. And Rob, thanks for not sugar-coating and for the update.

pirate ride said...

Sorry to hear! We will keep praying for him and your sweet family and these very trying times.But as always I know you guys will pull thruogh you both are AMAZING parents! Can't wait to see you @ the 5K!

Trish and John said...

I too hope that things maintain an upward turn. We do really wish that we could be there for the walk, and yet my doc has strictly forbidden travel for me in the last month. Boo...
John and I will be there in spirit this year and unless I'm about to birth the next year I'll be there walking along side holding Char's hand!

Anonymous said...

Oh man does this bring back memories! When my oldest (who is now 29) was 3, he was dx'd with severe autism. He had no speech, did all the classic autistic things (spin, repeat, head bang and so much more).

I couldn't get a doctor to dx anything because back in the early 80's autism wasn't recognized as quickly as it is now.

Anyway, at age 3, before he was dx'd, I put Rob in daycare (with all fingers and toes crossed) so I could work a part time job.

3 Days. He lasted 3 days before he was booted out of daycare. He was booted over a "See-N-Say" toy. He had it. It spinned. He liked it. A lot. He had no intention of putting it down, EVER. When one of the grownups tried to take the seeNsay toy away, my darling son cracked him on the head with it so hard the poor guy saw stars.

Rob is now very high functioning, is totally independent (owns his own condo) and is doing just fine. Didn't happen over night, wasn't pretty most of the time, but Rob can do anything he puts his mind to (well almost, he's still terrified of dating, and at age 29 now....sigh).

There's hope for Char....know that there is always hope. He's just ticked 'cause he's figured out what a fight he's got in front of him.

Rob and I will stop by at the 5K this year for sure....see you there!


Anonymous said...

Darling Charlie's Family,
As the mother of 3 daughters with brain injury (God Bless foster adoption) I so understand your pain and frustration. The scream that knows no end, the strength that comes from who knows where, and the agony of the parental heart to hold on and hope that it will end soon or that the right drug will kick in :). Your advocation for Charlie and never ending love for him is amazing to me! Continue the good (at times hellish) fight. Sometimes the right drug is just around the corner, or the next or the next.... I'm sure you get my drift.

Megan said...

I don't even know what to say. Sometimes I think you guys should hate me because my child had brain trauma, a lot of it and was a lot like Charlie for awhile (I remember the unconsolable crying,crying and more crying no matter what we did, the only thing that occasionally helped was holding her so close and so tight and being afraid to even breathe for fear she'd start right back up with all the agitation)...but now she is okay, in fact she is better than okay. It just isn't fair. I am so sorry. And you are not a bad parent at all!! I remember thinking *please, no one judge* that perhaps Livie was better off dead than like the way she was.

We all know how much you love your son.
It is hard. I don't know how you guys have done it. I do know Charlie is in there, damaged noodle and all, he's in there...somewhere.

I'm praying that you can find the right dosage/drug/ANYthing that will help calm little Charlie. We are all praying.

Jeff and Lisa said...

I check in from time to time, probably because I'm also raising a child with special needs. I really really get this post. I love my daughter beyond what words can even describe and I love that we were given the golden ticket into the special needs world. But, the things that come our way in raising her that test my patience and ability to remain calm leave me saying from time to time "what fresh hell is this?". It can be so rewarding, wonderful, awesome, amazing and at the same time is exhausting, excruciating, awful most of all traumatizing. I think only parents who raise children with special needs get that......
Sorry the last few months have been difficult.