Wednesday, June 9, 2010

Let's rewind...

As you all know, I have had 2 acquaintances-turned-friends have their child diagnosed with CP in the last few months. These are both twin mommies...where 1 child has CP and the other is typically-developing. Let's call them Charlotte and Darlene (not their real names).

Well. Charlotte's child only received the OFFICIAL diagnosis yesterday. A few months back, she was actually only told that her child "may have CP". I think this may have been a way for the doctor to soften the blow.

Charlotte sent me an email right away to tell me the news and more details on the appointment. I was really pleased that she got in touch with my so quickly. And she asked if she could use my "Facebook note" that I used to tell the world after Ben was diagnosed. She liked how it was written and wanted to modify it in order to tell "her" world about her son.

When Ben was diagnosed, I wanted the world to know immediately. But I didn't want to tell the "diagnosis story" over and over and over. It was just too hard emotionally...both on me and on the person being told. There were only 2 people that got the news from me and not via Facebook / email / word of mouth. Those 2 people were my parents.

I'm not sure exactly why I needed everyone to know so soon. But I guess to me, it was like taking off a band-aid...better to do it quickly if a little painfully and get it over with.

I've just re-read that Diagnosis Note for the first time in 20 months. WOW. Did it ever take me back! I think back to that time and am so thankful that I'm not back there. Feeling that pain. Knowing SO LITTLE. Feeling so alone in the world. The pain is not as sharp these days. I feel like I KNOW SO MUCH. And I definitely don't feel alone in the world anymore.

So I thought I would post this Diagnosis Note that I wrote way back then. In honour of my friend, Charlotte...who is brand new to this world of Cerebral Palsy.

Hello Facebook Friends.

As you all know, Clarence and I were blessed with twin boys in September of 2007 and we just celebrated their 1st birthday last weekend. It was such a great celebration with over 50 family members and friends celebrating with us.

On Thursday, we went to the IWK Children's Hospital in Halifax so the boys could have EEG’s (a test that measures their brain waves) and meet with a neurologist. The EEG’s were ordered due to a “shaky episode” that Daniel had a few weeks back. Fortunately, Daniel’s EEG showed nothing abnormal and Dr. Camfield diagnosed as “shudder attacks” which are quite common with babies and nothing to be concerned about.

Although Ben’s EEG showed nothing abnormal either, Dr.Camfield did have some bad news for us. After reviewing Ben’s medical history and examining him, Dr. Camfield told us that Ben has Spastic Diplegia Cerebral Palsy. In very basic terms, at some point (either during pregnancy, at birth, or shortly after birth), Ben’s brain suffered a lack of oxygen or a drop in blood pressure. This resulted in some brain damage that affects his gross motor skills. His legs are very stiff as is his trunk.

We have known for some time that Ben is developmentally delayed. Even though he is a year old (or 10 months corrected if you adjust for his prematurity), he only just started rolling and cannot sit unassisted. And he cannot crawl. He has been receiving physical therapy twice a week since early August and we do feel that he is making progress.

Dr. Camfield was unable to tell us what this could really mean for Ben’s future. Although Cerebral Palsy is not a progressive condition (i.e. the brain damage will not worsen over time), it is impossible to say what effects this damage could have. He was not able to tell us if Ben will be able to walk, run or play sports. It is simply too early to tell. He did tell us that this kind of damage should not affect his intelligence. We are also grateful that this has only affects his legs and trunk. He can babble, smile and laugh just like any other one year old. He is also really great with his hands and arms.

Cerebral Palsy cannot be cured. All we can do is treat the symptoms. This means continuing with his physical therapy, beginning occupational therapy and monitoring his progress. He is being sent for an x-ray of his hips and will also get an MRI in the near future. Apparently, Ben is at risk for hip dislocation and annual x-rays will monitor this. The MRI will image his brain (this will be done under sedation) and will give us more information as to the extent of the brain damage.

Needless to say, this diagnosis has been quite a shock to us and we are rapidly trying to get as much information on this as we can. We have found this summary of his condition quite helpful: http://www.livingwithcerebralpalsy.com/spastic-cerebral.php

We apologize for not making individual phone calls to inform our closest friends of Ben’s diagnosis. But, at this point, it’s just too difficult to go through the process time after time after time. That being said, we would appreciate phone calls from any of you that would like to talk to us. We really don’t mind talking about it and would enjoy hearing from you.

Love Cary, Clarence, Daniel and Benjamin

5 comments:

  1. Good of you to share that--I bet someobody else borrows it one day.

    I need the whole world to know about Charlie too--I think that's one of the reasons I love the wheelchair so much. I don't feel like we're hiding anything--we are who we are.

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  2. And then here's me, hiding away. I have friends I've never told because I just can't stand the tears. You are brave, and I admire you.

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  3. I couldn't stand the tears either...that's why I went with the "tell the whole world at once via Facebook" route. Much easier once everyone knows. Sure there are still tears, but not OVER AND OVER like there would have been if I had to call everyone / tell them in person.

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  4. You worded this so well. I wish I could have done something like this way back when. I feel it's hard to convey the message without the extremes of "everything will be rosy and fine" vs. "oh poor us, pity us!" You captured it perfectly.

    I hope Charlotte is learning some things from you on how to handle this in her own way. I know i have!

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