1.17.2013

cerebral palsy

"While cerebral palsy (pronounced seh-ree-brel pawl-zee) is a blanket term commonly referred to as “CP” and described by loss or impairment of motor function, cerebral palsy is actually caused by brain damage. The brain damage is caused by brain injury or abnormal development of the brain that occurs while a child’s brain is still developing — before birth, during birth, or immediately after birth.

Cerebral palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. It can also impact fine motor skills, gross motor skills and oral motor functioning."

Source


Today is January 17th. 

Today is three days before the anniversary of Ryan's homecoming. 

Today, Ryan was diagnosed with CP.

I mentioned that Ryan had a big doctor appointment coming up.  Well this was it.  We took him to see Dr. Suhkov, a physiatrist.  Physiatrists are rehabilitation professionals who specialize in illnesses or injuries that affect how you move. 

At 15 months old (12 months adjusted), Ryan has never rolled over on his own.  He does not sit.*  He does not crawl.  He does not pull up to stand.

When I was put on hospital bedrest and was at risk for delivering the boys extremely early, we were told about the risks the boys would carry of having CP.  When the kids were born, we were reminded about CP.  When their brains bled, again CP.  When they were diagnosed with Hydrocephalus.  CP. 

The brain injuries that Ryan sustained as a result of his early birth (and nothing more) coupled with his struggles in meeting his milestones gave Seamus and I a pretty good indication that Ryan has CP.  However, no medical professional had ever confirmed our suspicions. 

In an effort to be proactive in our child's medical needs, we seeked out the advice and professional opinion of Dr. Suhkov.  After today's appointment, we found that these days doctors are not quick to label a child as having CP.  The main reason for this being that parents don't like the stigma that comes with such a label.  After all, labels mean nothing, right?  Having a document stating that our child has this condition will not change who he is, or what he does, or where he goes in life.

Wrong.

We pushed for the diagnosis.  Dr. Sukhov examined our child, gave us a gameplan, and was going to let us walk out of there without even mentioning CP.  But we pushed.  We pushed because giving Ryan a label gives us the tools we need in order to get him the Early Intervention services he deserves.  Having this diagnosis will help him get approved for the physical/occupationl/speech therapies he needs in order to meet these important milestones he has so far missed.

Though we have a preliminary diagnosis, this is just the beginning of our journey with CP.  Ryan will be evaluated by a team of therapists who work closely with Dr. Suhkov.  You see, CP comes in many forms.  These evaluations will give us a greater insight into the type of CP we are dealing with.

There's so much more to say, but it's hard for me to organize all of my thoughts at this point. 

I will say that we are not saddened by today's events.  Ryan is a smart, outgoing and sweet boy who just so happens to have some hurdles in his future.  We love him no less than we did 24 hours ago.  It is our job to make sure he works hard so that one day he will be able to run, jump and play with his peers.  And we will.  And he will. 



*I put an asterisk next to this fact because while Ryan "does not sit", he is working on it.  And working hard.  He can hold this position for around a minute now,  and is getting better every day.  


7 comments:

  1. Sending you strength and hugs.

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  2. You go momma! Be that baby's biggest cheerleader! Props to you for being his best advocate! You rock and so does he!

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  3. Cousin Mary1/21/2013

    He has the most amazing two parents that are going to make sure that he is able to do everything to his fullest potential. There is nothing like having parents that advocate for you, I'm sure Ryan will be just fine. You both are wonderful and he's a great little boy. I love reading these blogs because I don't see them that much. I'll come visit as soon as I can.

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  4. This is explains everything so well. I'm hassled constantly by outsiders who don't understand. OK, let me back this up. I have a 26 weeker. She is now nine months old chronologically. She has what doctors describe as significant motor delays. She has PT, OT, and feeding therapies. People who don't understand criticize... why can't you just let her be a baby? I'm also constantly reminded that "Preemie catch up by two". It's as if at two a magic wand is waved and her delays will disappear. This explains things fully. Well done, nice job... I love this post.

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