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.