Saturday, May 17, 2008

Keeping it Real

This is a phrase I don’t think I have ever used in real life and I don’t plan to start (Hilary – if you’re reading this, you’ll be relieved I’m sure). However, it seemed appropriate for this post which explains the results of Bennett’s MRI.

We got the results a couple of weeks ago and like I mentioned in a previous post it’s hard to wrap your head and heart around the words “your son has brain damage”. Even though I knew that was likely, I was still hoping that the scan might be normal. Well, it wasn’t. The scan showed some spots of damage on the right side of the brain – there was one small spot on the left but the doctor figured that it was inconsequential. The damage was consistent with him being deprived of oxygen at some point. However, these results were a bit strange. Any readers that have hemiplegia or children with hemiplegia will notice the discrepancy immediately. Bennett is a right hemi. This means that the damage should be on the left side of his brain. I didn’t realize this until after I got off the phone with the doctor and read the report myself. So I called her back and asked for a possible explanation. She didn’t have one and said that she had forgotten that Bennett was a right hemi and was just assuming he was a left hemi. The report is now being sent to Sick Kids for further interpretation and to see if they have an explanation.

One of my biggest fears about getting the MRI is that they would find something else wrong and I would end up longing for the “good ole days” when Bennett “just” had cerebral palsy. Well, once again, my fears have been realized. The scan also showed mild to moderate hydrocephalus. This condition is usually treated with a shunt. When I asked the doctor why she wasn’t too worried about this she explained that his head size is well within the normal range and he shows no signs or symptoms of increased pressure to the brain. She said we will keep an eye on it and that it may resolve itself and that it would be a good idea to avoid brain surgery if possible. Despite her words, I’m still worried sick about this and freak out every time Bennett even touches his head.

So, why did I title this post “keeping it real”? Well, because, essentially the brain scan doesn’t mean much. Bennett still has cerebral palsy and he still needs therapy. The MRI does not predict function and it does not show which parts of the brain have already taken over from damaged areas. He’s still the same little boy that likes to lift up his shirt and point to his belly, give wet kisses, flip through book after book, play with his trucks and stuff his face with goldfish.

As much as I know that he’s the same little boy he’s always been I would be lying to say that I don’t look at him differently. I find myself looking with amazement at his gorgeous, perfect little face and wonder how there could possibly be damage there. How could this have happened?!

My questions are pointless I know. Bennett is who he is and he is a wonderful little boy and so loved.


Bird said...

I've read about these kids who have damaged on the side you wouldn't expect. Very unusual, though.

You're right about the MRI--they don't help at all. I've actually told the doctors that at this point I don't see a need for an MRI. We saw exactly where the damage was when it happened via ultrasound and CT scan. I don't need a slice by slice work up to show me how bad it is. In our case I felt as if it were a bunch of people looking at a train wreck. I want to force those doctors to look at my child, not the scans. Even though everyone knows that they aren't crystal balls, they still stare at them like they are.

Bennett looks fabulous, by the way!

North Dakota Ward's said...

I had such a hard time dealing with our MRI stuff the first week, but after that I was really glad that we did. Our therapist were amazed at how crazy the MRI was and how mild he presented, they both thought his scan would be normal. They just kept telling me over and over stories of kids with severe CP with normal brain scans. And other kids like Sammy that have obvious "problems" but have very mild CP. No one knows why but MRI's do not show brain function. The more I heard it the less anxious I was about the findings.

Look how GREAT Bennett is doing. He is doing so good and will keep doing so. You are so right that he is amazing and just keep focusing on all that he has accomplished in such a short time.

I was just thinking about this the other day with Sammy. I know that I would not of been able to work as hard as he does every day of his life. I watch him in amazement and I know that God gives challenges to those who are the strongest. Obviously, this is the case with our little boys.

Keep us posted as the review the findings.

Mummu and Poppa said...

Bennett is who he is.

We know and love no other.

We will 'go with the flow' and just continue receiving his endless love and sharing his life.

Yes, everyone would want what is 'normal' if we knew what that really was - but do we? We think not.

Bennett, you have a 'keeping it real' personality that continues to grow with you. Every day something new and wonderous happens in your life - you reach new plateaus in all theropy areas which we find truly remarkable.

You've come 'along way baby' and we love you for who you are.

Keep up the good work Mommy and Daddy and Bennett will continue doing his part of showing us true love.

continued prayers and love
Mummu and Poppa
xxx ooo xxx ooo xxx ooo

Kiera Beth said...

Barbara - Drew and I are thinking about you guys. The MRIs are so difficult. There is something about seeing it in black and white.

You are correct that Bennett is still the same amazing little person that he always has been. As parents, we are the ones who advocate for our children and make sure that the medical professionals and others see them as amazing kids, not as a diagnosis.

I do commend you on calling attention to the unusual nature of the scan. Bennett is very lucky to have you as a mom.

You are not alone in this and Bennett has friends all over the country who are watching him and finding him to be an inspiration.

(P.S. I see the Gallop book in the picture. Reichen got that for his birthday. Isn't that a great book!! It is so cool!)

Colleen said...

Bennett you are still my favourite little man, and always will be.

Barbara and Jim, we're here for you guys if you need anything...just a phone call away.

Thoughts and prayers,
Auntie Bean