Tuesday, December 20, 2011

The Diagnosis

I was a little taken back when I received the report. At the top, it listed in plain sight:

 Primary Diagnosis: 

prematurity; cerebral palsy; hemiplegia affecting left side
secondary to prematurity and hypoxic ischemic encephalopathy
with global developmental delay status post VP shunts bilaterally
for hydrocephalus

Finally, a diagnosis. 

Up until that email, we have never received an official diagnosis for Jack from any doctor or therapist, with everything spelled out for us in that way. I don't really know how it's never come up. At one point, we tried to push Jack's neurologist to just come out and say it after looking at some MRI results - the dreaded CP (cerebral palsy) diagnosis. He refused to say it, because he deemed the term "too broad". I can see where he is coming from. The more I learn about CP and how it varies immensely from individual to individual, the more I know that a one size fits all diagnosis doesn't make sense. 

We've known for quite some time that Jack has many, many medical issues and we've been OK with never hearing exact words. We've known. We talk about it a lot. Mostly in the sense of what it will mean for Jack's life and the things he will have to overcome. It breaks our heart to see him work so hard to reach milestones, but then again, he is one of the happiest little guys, always putting life into perspective for us.

We love you, Jackpants. 

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amy said...

We got ours last Monday. Neuro doc had to make it bc we know come april when he turns three and we're not eligible for county services....insurance battles will really begin! Cp is a such a broad spectrum.....hang in there.

Mrs. Petty said...

Jon,jessi& precious Jack....just wanted you to know that we pray and fast for his continued blessings of health and progress. You are wonderful parents and he is so fortunate to be here on Earth w/you. Happy Christmas to you all! Aunt Beth, Uncle Frank, all our love!

Michelle said...

What an amazing little boy Jack is! I'll continue to pray for him. This picture is absolutely adorable.

Our Beautiful Family said...

We are praying for you and your family as you continue on this journey! Jack is blessed with wonderful parents and a wonderful God that is sure guide, love, and show you the way. God bless you and your beautiful family! Jack is a beautiful little boy!

Anonymous said...

The happiest picture ever. What a blessed family you are. kim

Sarah Pope said...

I have always found that the unknown can cause more stress than knowing...I hope thats true in your case as well. As everyone has already told you, the words on the page dont change anything about Jack...he is still amazing and beautiful. Praying for peace about this diagnosis for your family.

marcie said...

CP diagnosis or not, Jack clearly is a remarkable little boy. He has achieved so much in his short life thus far and he is blessed in so many ways. I love the photo with this post - it speaks volumes.

TherExtras said...

Cold words indeed - those diagnoses.

You are doing very well compared to many parents. Hoping you have/find lots of support for the times when you do not feel 'well'.