a deadly disease
On Wednesday 1/13/10 we went to pre-op screening. He got to see the IV and central line that they are going to put in his chest. He became Dr. Hallock when he put the IV in an Ernie doll! He put the blood pressure cuff on him and the heart monitors, it was great hands on stuff for him so he could understand what they are going to do to him....Thursday brought the signing of the consent papers holy crap!!! What a tough thing to do but I had no choice, everything was the worst case scenerio....been doing a lot of crying when he is in another room because I need to release!! His glasses came in Thursday and he is one happy boy, they are bifocals and he sees things a lot better, hell, I put them on and they are perfect for me, need to tell my opthometrist!! Went to the NC Zoo on Friday with the temp in the low 60's. The great people from Family Support from Duke let me have a wheelchair for him, made it more enjoyable for him...He loved it and we WILL go back!!! Want to thank Kelly from Hunter's Hope Foundation for the wonderful lunch at Red Lobster Thursday, it was great....I want to send a special thanks out to all who have visited this site and signed the guestbook as well as all our friends and family who have called, texted, emailed and Facebooked to check on the little guy. I'm sorry I get a little weepy on the phone but I'm sure all understand!!!
For cards and letters:
Terry Hallock, III
600-1E Ivy Meadow Ln
Durham, NC 27707
This is our house during this difficult time and we made it into our home because love turns a house into a home!!!!
We've been down here in North Carolina for 3 1/2 days now and he's been through a lot!! The staff at the Children's Health Clinic at Duke and the staff at the UNC Center for Developement and Learning are such wonderful people who want nothing but the best for the little guy. Lots of tests, tears and frustrations for him. We still have several more days of testing, we are up at the crack of dawn and back after the sun sets...wish the day was spent doing other things like everything that I took for granted in life and complained about, those things don't hold a candle to what he is enduring now or what is in store for him. Somewhere along this first leg of this journey I lost my desire to play music and/or write music, there's something bigger in life that needs me....I told him tonight what is going on the best I could and he asked me if he could die, WOW!! all I could say is I don't want him to die. Told him he they want to stop this disease so that it doesn't ruin his walking anymore than it is. It's the first time he has seen me cry over this and he says I was crying because I love him and I said that he was right. I'm going to fight for him until my dying breath..........
Just about all the tests are done. He's been taking his Baclofen, Neurontin and still his Amoxocillin, just the beginning of many meds...His eyes aren't doing too good and now we're waiting oworsen with these coming months....How could this horrible disease go undetected for 3 friggin years??? Some tests given were so close to the test needed to be performed, if it seems like I'm aggrevated, I'm not, I'm pissed... While all the doctors that had seen him had no friggin clue and tried to guess, this disease was eating away at my little guy's motor skills and vision, it was eating him alive and still is....The medical community needs to be alerted and trained properly to detect these horrible leukodystrophies, ALL the leukodystrophies not just some of them!!!! So wake up and get your asses in gear or someone, one day, might own your practice, it just might be a blind, crippled and smart little boy....Thank God that they didn't allow this disease to take my angel's smile, sense of humor and love of music....The spinal tap and central line operation is now sceduled for Jan. 26th instead of the 19th and I can thank Good Samaritan Hospital's Lab on Long Island for testing for a Low Resolution HLA Typing (for donor matches) when the script said High Resolution, thanks Good Sam for the delay, illiterate asses!!!! Need to take a chill pill and write more at a later date......n really strong glasses with bifocals...he has a blind spot in both his eyes that could
My little guy wanted to write a song tonight 1/12/10....I helped him with the rhyming scheme but this is what he came up with: (Surgeon General warns that reading these words could bring tears to your eyes, it is strongly suggested to have tissues close by)
Why Is Ths Happening To Me?
This life I am going through, there is nothing I can do, about it
The doctors are trying their best,
Lots of needles and MRI's, they always make me cry, I hate this
I don't want anymore tests
(chorus)
My Dad gets me up early, drives me to where I need to be
It seems like it's everyday,
Why Is Ths Happening To Me?
(verse)
I don't like what they do, and all that they put me through, but they do it
Even though it makes me mad
Lots of tears and lots of pain, it's driving me insane, I don't like this
It makes me very sad
(chorus)
(bridge)
Someday they tell me this will be over
No more tests then I can go home
(verse)
After all of this is done, I can go back having fun, with my friends
I miss them so much
I can be with my family, and that'll make me happy, again
I miss their touch
(chorus)
Then I'll get up early, so I can go to school
I'll be back home again, and that'll be real cool
My little guy touched a place in my heart tonight that he never touched before....He will record this.....I am so proud of him...I love him more than anything in this world and he WILL be coming home!!!!
