Sunday, November 2, 2008

Manly News

Update, update, update. First let me apologize for being so dilatory regarding this blog but I am not w/o reason. Reasons I won’t bore you with other than to say it is in large part because of the lamentable depression I’ve been suffering through brought on by the lackluster performance of the Cougars of Brigham Young. Now if you say, "Why would you be depressed they’re 8-1?" I would tell you that you’ve missed the boat and don’t understand. The reason for the depression, depression that is so debilitating the last thing you feel like doing is blogging, is because the charade of a team that is BYU, is on Nov. 22nd going to be taken out behind the woodshed and turned into humble little prison inmates. My prediction: BYU 6, yewts 91. With that knowledge and my superior prognostication skills how do you expect me to get motivated about anything? some of you might tell me to get a life. i’d tell you that i have a life and cougar football is it. so just hush. we all pick our poison and this year mine will be coming in a cup that i might ask someone to take from me.

I’m not quite sure how to quantify the changes in Charlie’s world so I think it will best serve you all if I take a minute and give you a detail-less update that will make you wish Angel wrote this.

With all this ATCH that Charlie has been getting to help w/ his spasms we’ve introduce a unusual amount of steroids/hormones into this little boys system and now we are seeing the uber early effects of puberty. Acne, irritability, defiance and hair. Yes hair, Char’s nether regions have grown a light coif. We’re not talking about a Hendrix like fro but definitely more than your average yoot fan. Sorry if this is too much info but after a situation/sickness like this you kiss all dignity and self respect good bye and besides some of you are sicko’s and I know you’d want to know such tid-bits about Charlie’s bits. Along with a touch of fuzz on the apricots he’s had some zits worthy of Guinness recognition. Zits have been the biggest problem while being on the ATCH. Why is that a problem? Well, because I’m his father. My name is Rob and I’m addicted to zit popping. (This is when you all say, "We love you Rob.") Angel hinted to my fixation in an earlier post and she felt like I should illustrate what she was implying. Since I was but a lad experiencing the awkward changes of adolescence I immediately took a keen interest in the pizza that my face was turning into. It was like cocaine for me, it took one pop, one extrication of those poor papules and I was hooked. Bravely I have managed my addiction for many years using the faces of nieces, nephews, sibs or really anyone who will let me pick to get my fix and then the Almighty curses Charlie w/ some of the juiciest most bestest acne I’ve ever seen. I was like a tweaker, waiting till we were alone and it was heaven, an oozing and squirting little heaven. Now there are no scars, infections or anything of the sort. I am a professional and I’d happily offer my services to any in need. Lucky for Charlie we are done with the shots and the blemishes are clearing as rapidly as they came. Boo.

Charlie is smiling more and more every day. Mostly when he wakes up and mostly w/ me which is no surprise as he prefers me to any other. He’s so cute and it’s intensely rewarding for us to know that he is responding to something we’re doing and it’s not just random. The light is on in his little head, albeit dim but what do you expect, have you met his father. Dim = Rob.

Today Paula, the Hearing Therapist from the School of the Deaf and Blind came over to give us a deaf/blind simulation so we could put ourselves in Charlie’s shoes for a minute. It was one of the most surreal experiences I’ve had in my life. I don’t want to give many details largely because details boor me and also we plan on having some of you who are close to Char go through it yourself. What an eye opener it was and it’s changed for the better how I will, from here on out, deal with and treat Charlie.

On a crappy note Charlie has started having seizures again. Now these are different than the spasms that we were taking the ATCH for. The spasms are gone and now he’s started some of the "normal" seizures. We’ve been weaning him off of the Phenobarbital so that we can transition him to a different more maintenance friendly seizure drug and we believe that is the catalyst for this recent neuronal paroxysm. All in all things are looking up for the little man but in reality he’s not so little anymore. He’s become slightly rotund and only weighs 8 lbs less than his older brother. Rotund = Rob

Charlie’s best days are ahead of him and it has been so fun to see him progress as he continues to take his "Charlie Steps." He’s working so hard to get better. Whether its in physical therapy or learning to like his stander we’re pretty proud of him. Actually I think he’s working hardest to stay deaf while watching BYU games w/ the old man where the only thing bluer than our shirts is the language. We don’t know if the cochlear implant works or not but just in case it gets turned off at kick off.


Katie Jo said...

Well i am very sorry to hear that charlie is having "normal" seizures again! If there is anything that i have learned it's that anytime you mess with any kind of medicene, it pretty much means there is going to be seizures!!! It sucks! and i'm so sorry! Yea for the smiles!!!!

Go Utes!

Meghan said...

you even grossed me out, and i am pretty familiar with your illness. also, i have a solution for your rotundness = gym. try it.

as for char, i like to call him husky. and i love his big husky cheeks, especially when he smiles. and i am proud of the "steps" he has taken in the stander. what a champ. i hope i am on the list for the deaf/blind simulation. but i suggest he is not blind....

Suz said...

First of all...let me say it is about $#@% time you updated this blog. While entertaining, I have determined that you must now be called "Rob divided by 2" as you have TOTALLY exaggerated the zits and fuzz. Coops acne doesn't hold a candle to that which a few 15 year old boys I know are sporting. I am happy (not to mention proud)to report that while I share the cursed interest in popping, I didn't touch a one of them. NOT ONE! As for the hairiness of the little man; you make it sound as if he wears a hair sweater which he does not. He simply is fuzzier than in the past and I personally think his hairy ear lobes are very cute.

XOXO Coop. I can't wait for Tuesday.

Ginny said...

i'm not sure if i totally loved or hated that update! in reality, i loved it...including all the gory details. the deaf/blind simulation sounds intriguing. i hope to hear more about that. happy half-birthday, Char! And happy six months at home!!!

Lee said...

Love this update! Every week or so I check in to see what's going on in little Charlie's world and I'm happy to hear there are some positive steps going on. You guys are always in my prayers and post some more pics when you can!

Leane and family
(Duzy's friend in LA)

Jada Rose said...

Ahhh Rob, you never cease to give me a good laugh when I am in need of it!

"Yes hair, Char’s nether regions have grown a light coif."

Anonymous said...

Hurray for Charlie! I am so glad you updated this blog! I love hearing about the positive things happening. What a thrill for you to have him smile at you! I'm sure Charlie knows how much you love him. there are so many people who continue to pray for all of you. Keep up the great work and remember there are so many people who admire your whole family.

whitney said...

Ok, after weeding through all the zit talk, the Robzaggerations, and the byu crap, it is good to know what is going on with my Coop. I'm coming over to hug him shortly, can't wait. Rob, don't be jealous when I get a bigger smile.

whitney said...

Oh yeah, and go UTES!!!

linds said...

rob, doug shares in your fascination with the zits...gross. keep up the good work charlie. we are so proud of you!

Melanie Lutz said...

Love Paula from the school for the deaf and blind. She rocks! We have been working with her for a year now. Tell her we said hi. Melanie Lutz

Anonymous said...

yay charlie! we love hearing updates about his smiles and therapy! he looks darling, like always! keep the updates coming...and go cougars!

Beachquack said...

I just wrote a nicely worded, long comment... but it got erased. Here's the basics:

Rob... Gross. I never understood the the obsession of zit popping.

Also, I work for a man who is heavily involved in the Utah School for the Deaf and the Blind (USDB). He is blind, and partially deaf, but don't let that fool you. He's one of the most impressive men I have worked with... Even if he likes the Y almost as much as Rob does. Anyway, I have learned a lot about USDB, and it's potential future. I know you guys have probably done a lot of research on USDB, but if you have any questions, I can either answer them, or get the answers for you. Don't know if you need it, but let me know.

Love Ya,

Roxey said...

always checking, not always commenting! Must agree that the smile makes me happy every time I think about it! I also can't wait to hear the details of the simulation! Now you can tell me Ang!!
Miss you guys!
(love and prayers as usual!)

Amy said...

I've read quite a bit of your blog. What a trial you have been through! Rob and Angel I'm so proud of the people you've become! I feel blessed to know you, and your story!!
Let's get together sometime soon!
(I am impartial to all this Ute/BYU crap...but my hubby is a BYU fan!)

Anonymous said...

Hello all: Hope all is Great in your world. Been busy! prayers always.Hug Charlie& Britty for all who cannot be there in person.Shyla from Montana.

Anonymous said...

Good luck with the seemingly nerver-ending rollercoaster of seizures and meds. We are trying a Ketogenic Diet and it is working fairly good. Why cant these dang kids be constant... I guess it keeps us on our toes. What would life be without ten appointments per week? glad everything is going well. Hunter has a nice "happy trail", as it is sometimes called, caused from using the steriod cream around his button, that seems to connect to the same effects of the ACTH down below. Look at it this way though, at least we dont have to have that awkward talk when they are 11, we gave it at 1 1/2.


Anonymous said...

Condolences about the game on Saturday, Rob. Bwah ha ha ha!!

Sincerely, an anonymous Utes and Charlie fan!

BaxterFamily said...

Hey Rob,
The Cahoon girls have so much more respect for you now that you've divulged your zit popping habit. Our husbands can't stand us...if they only knew the joy!

I enjoy your commentary, be it about BYU, Charlie or life's funnies in general.

Anonymous said...

I hope you can enjoy a calm and peaceful Thanksgiving. I am so thankful for all that your family continues to teach me and for the strength I receive knowing how strong Charlie is. You are amazing and you deserve many rich blessings!

Kristine said...

Hi there - I've followed Charlie's blog since the beginning. My daughter also had Bacterial Meningitis. I have linked to your blog on mine. I hope this is okay.

Please feel free to do the same.


PS - Hope to hear how Charlie is doing these days!! Happy thanksgiving! We both have a lot to be thankful for!