Wednesday, July 14, 2010

Two New Words

We met with the neurosurgeon at All Children's Hospital today. All in all, the appointment went very well. We received a diagnosis and got to ask the doctor many questions.

Drew has something called Chiari Malformation. Basically, the base of his brain (the cerebellum) extends down past where a normal person's brain would stop. Therefore, it's creating a sort of cork at the base of his skull which hinders the flow of important spinal fluids up and down the spinal column and around his brain.

Because the cerebellum controls functions like balance, the doctor was most interested in whether Drew was having any trouble with gross motor skills like walking, running, jumping, standing still.

With a new sense of gratitude in our hearts, we assured the doctor that this boy was ALL BOY and was very active and healthy. Besides the headaches, we couldn't think of any other symptoms that could have led us to suspect this condition.

(Since then we've put together a few other things that we just didn't think about right there in the office... like, his legs fall asleep all the time, much more often than other kids we know, and it causes him brief moments of intense pain).

After speaking with Drew and asking him to perform a few "tricks" for him, the doctor looked at us, grinning. "He is doing remarkably well!" He went on to say that, by looking at the MRI images, he would have been very concerned for the child the images belonged to. But in looking at our boy, live and in person, he was greatly encouraged.

One thing I am most grateful for was his conservative, sympathetic approach to the treatment options. He told us that he could do surgery. He could make the "picture (referring to MRI image) look prettier", but if the condition was having such little affect on Drew, he was reluctant to do something just to make his brain "look" more normal.

So, in about six weeks, we'll go back to the hospital for a day of tests, including a full MRI of his spine (we need to see whether spinal fluid is being inhibited from flowing properly by that "cork effect" I mentioned).

At that point, we'll talk about the surgery v. wait-and-see approach.

As we left the office, Drew said, "Well, that was fun!"
He asked if we could do something special on our way home! "Sure!" my husband and I replied, as I tossled the mop of blonde hair on his well-studied head.

I think at that point, we would have bought him a Wii.
I'm glad we held off on our offers, because he was thrilled with a dollar in the lobby's vending machine and the pack of spearmint gum it spit out.

So, that was today in a nutshell. A lot of new information, but our hearts are just abounding with grateful praise. We know it could be much worse, and we thank God for protecting our boy these last five years from more significant symptoms. We're thankful for a kind, smart doctor and for the prayers and thoughtful wishes of all our friends!


Karen said...

Hey, there! I am Emily's friend, Karen ... soooo glad to hear good news. I've been thinking about you guys and praying for Andrew! What a sweet boy ... that's happy with a pack of gum!!! I am sure you are thankful for the new mercies of today!!


Jenny, so much maturity in these words: "A lot of new information, but our hearts are just abounding with grateful praise. We know it could be much worse, and we thank God for protecting our boy these last five years from more significant symptoms." I felt the same way when Shakira's recent seizures turned out to be
'just' epilepsy but i'm not sure on my part it was maturity...only years of seeing pediatric worse case scenarios played over and over. You really appreciate a Chiari malformation or seizure disorder vs a brain tumor.It could have been so much worse. So granny Faith has to put her 2 cents worth in here no no chiropractors manipulating the neck, watch the pooper (avoid constipation)and no Tower of Terror or Space Mountain. I hear he likes golf? Could it be more perfect than that!?

SouthAsiaRocks said...

whoo hoo!! PTL! That rocks!

(I'm Emily's friend) :)

3 chicks and a dude said...

I just can't help but think when he's a teenager how he's going to rub in that he must "know it all" and be smarter then you and david...cause...hello! he has more brains! I will pray, but have never seen a more boy, boy in my life (thank you Lord for giving me nerves are shot just watching that boy play on a playground!). Love you guys!

Anneliese Schombs-Fish said...

Praise the Lord! Prayed and still praying. Love to you all.

Anonymous said...

Love your blog..too really need to write a book ..I did hear about some of your weekend from Sharon...take care..