Ryan's MRI results:
No significant changes. His Chiari remains "stable," not causing any blockages, not touching anything it shouldn't be and not causing any CSF (cerebrospinal fluid) flow issues or blockages.
Charlie's MRI results:
The cerebellar tonsils have fallen to the lower part of C1 vertebrae and are completely touching the back part of the CSF space. It does not indicate that he has a CSF blockage...but it's not great news that they are completely touching that space.
Neither of the reports indicates how many millimeters down the tonsils have fallen. I will know that upon seeing the films myself and watching the CSF flow when we see the neurosurgeon.
So in the meantime we wait.
I'm optimistic. Because there is not significant blockage, surgery is likely unnecessary. I hope that he'll just order another scan. Perhaps a standing scan this time?!? Not sure if that's possible with a sedated child?!? But I will ask!
Thank you all for your support and prayers!!!
MRI Results are IN
Unsettling News
This morning I called the pediatrician to find out if they had received the results from the radiologist about the boys' MRIs.
My favorite receptionist answered, but said that they couldn't share the results until we'd seen the specialist who ordered the MRI. (In this case, the neurosurgeon.)
This evening, just after dinner, the pediatrician called. After hours.
Not a good sign.
The only reason she would call is if there was a problem.
"Hi Erin. I wanted to let you know that we got Charlie's results back and they were given to me right away because his Chiari is worse."
Heart drop.
"What? Really? Charlie's? You sure it's not Ryan's?"
"No. It's Charlie's."
"OK. Well. Do you have Ryan's results too?"
"Let me have them check."
"I just don't get it. Ryan is the one with the "worse" symptoms. The one with all the sensory issues and speech/language issues. Charlie seems fine to me, with just subtle signs/symptoms. Not showing any outward signs of worsening. It doesn't make much sense!??! I had this same conversation with Ryan's OT this morning after updating her about the MRIs."
We then go on to have a light-hearted conversation until they figure out that they can't access Ryan's results and will have to call me tomorrow.
Why didn't I think to ask "how much worse"? Why didn't I think to ask "is there a blockage of fluid"? Why didn't I think to ask "how many millimeters"?
I know why. That "worried mommy" brain took over my ability to think. My ability to reason.
All I could do was hear "Charlie's Chiari is worse."
So now we wait. About 2 weeks until we see the neurosurgeon again.
And we pray that it's "not bad enough for surgery."
Because I'm not ready to deal with brain surgery. It has always been my prayer and will continue to be my prayer that surgery will never be necessary.
So now I enter a battlefield. A battlefield in my mind.
- Half the time I'm overwhelmed with God's peace, knowing that all will be fine.
- Half the time I'm consumed with worry, anxiety and fear of having a zipperhead child
The battle will rage on until we see the neurosurgeon!
Please pray that I would be filled with peace.
Thanks.
Please note: You can look in the sidebars of this blog for a photo of what a Chiari is...as well as some OLD posts that will clue you in on the boys' medical history.
Airport Security
When traveling alone with 3 small children, sometimes you gotta do what you gotta do...
(Of course I did NOT put him through the X-ray machine!)
Quotes of the Day
For a few weeks, I've been putting these quotes from Bubby up in my Facebook status...but I thought I'd copy them over here so I don't "lose" them!
From the Day we brought Tyler home...
Asking Nana..."Did Tyler have pajamas on when he was in my mommy's tummy?"
From Tuesday...
Me to baby Tyler, "You're so cute I could just gobble you up!" (Because every mother thinks their kid is so cute they could eat 'em up!)...to which Ryan replies, "Mommy, if you gobble him up, then he would go back in your tummy, right?" Not sure how to take that...does he want him to go back in? Or is he confused by my desire to gobble up Tyler?!?<
From Saturday...
"When I grow up, I want to change my name." Me: "You do?!? What do you want your new name to be?" Ry: "Daddy." Me: "Well, you don't have to change your name to be called Daddy. You can be both Daddy and Ryan." Ry: "Oh, like Daddy is daddy, Steve, and Honey." Me: "Yep. That's right!"
From Today...
While I was nursing Tyler this morning, I look over and Ryan is in the rocking chair with his shirt whipped up and looks to be nursing "his baby." When asked what he was doing, he replies, "I'm giving MY baby some milk." Me: "Remember that only mommies and girls can give babies milk," to which he responds, "Well, I'm pretending to be a girl." Well, alrighty then!
And from a few weeks ago...
4 year old quotes of the day: why is there a sky? Why is there grass? Why do leaves fall off trees? Why does it snow? To which I have to give the most elaborate biblical and scientific explanations to satiate his thirst for knowledge and understanding!!!!
What a joy this little/big 4 year old is to us!!!
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