Tuesday, June 24, 2008

Row of Ducks

Today DH & I took Skyler and Hannah to the doctor for a check-up so that I could get all of their medical papers for camp officially filled out and signed. Clearly they are both very healthy kids ~ they are rarely sick ~ I can't even remember the last time we went to the doctor for a sick visit. We are truly blessed to have such healthy kids. Anyway ~ my main reason for bringing them in was to bring their pediatrician up to speed on my health journey and inquire where to start with the kids.

A vision of a giant can of worms comes to mind ~ a huge tin can writhing with Jurassic worms! Seriously, am I ready to find out if my daughters also carry the mutated genes that create too much collagen, occult tethered cords and chiari malformations? Realistically, if we do find that they are going to need surgery, I at least want to get my brain decompression out of the way so that I will feel better and can focus on nursing them back to health. Deep breath ~ sigh ~

So while the unassuming pediatrician was filling out the paper work we had trucked in to the office I gave her a subtle warning ~ I told her I had some questions ~ she said she would love to multi-task but wanted to finish filling out the paper work first. I told her I had a 'Double Jeopardy' question ~ she later told me I should have called it 'triple whammy jeopardy'!
After all the paper work was completed, I started the conversation with, "Are you familiar with a brain malformation called Chiari? A collagen mutation called Ehlers Danlos? A spinal deformation called 'Occult Tethered Cord'? You could see the immediate concern on the doctor's face. I tried to sum up my health abnormalities in 3 minutes ~ then voiced my concerns that my daughters might also have the same conditions. After much dialog back and forth ~ we decided to go ahead and start with my youngest, Skyler. She's got a couple of external markers indicating TC and of course with the uber bendiness of her joints she oozes with EDS already ~ So I guess you could say that I am getting my ducks in a row.

Our pediatrician remarked about the calmness we all possessed while talking about spinal and brain malformations ~ heavy topics ~ HUGE ~ but you know what? I have had a long time to sit with the information ~ mulled it over in my brain many times. I guess you could say that we are all a little callused. I have done my homework. I know what is at stake ~ if left untreated, my kids will probably be facing brain surgery some time down the line. If there is anything in my power to prevent this from happeneing ~ I will do it. But seriously ~ how crazy is all of this?! My youngest child is healthy ~ no complaints ~ active, energetic, creative, loving ~ nothing is shouting 'occult tethered cord'~ but I have an intuition that something is not right.
I was so relieved when our pediatrician sat and listened to our story without missing a beat ~ no rolling of the eyes, no deep heavy sighs, no interrupting me in mid-sentence. We are blessed to have a doctor who is genuine and caring. She agrees with me and supports getting Skyler checked out first ~ see what we find and go from there. You know how I have talked many times about perspective ~ how God sees the whole picture and we see just a tiny view of what is happening. Well this afternoon my perspective came into focus just a little bit more. Maybe the reason why I am going through all of these Chiari pains is to prevent my children from suffering. Seriously ~ I am still amazed that one little MRI turned my world upside down and brought instant clarity at the same time.

Maybe there is something wrong with me, but this progression of events seems as it should be. I'm not freaking out about the possibility of going through all of this with my kids ~ All is happening for a reason ~ reasons I can't possibly fathom. But through it all I hear the sound of God's gentle and powerful voice (I hear Him as James Earl Jones sometimes in my head ~ think Mufassa from Lion King) telling me that He will not leave me or forsake me. There is nothing too big for Him to handle and I trust in the truth of that statement. Oi! It's been a while since I have done some heavy blogging ~ but there it is ~ more developments to follow ~


laura said...

keep holding on tto the faith.

Stephanie said...

Thank you. We are facing the same thing here and your words have given me a new perspective. As we are beginning the journey to TCI for the three of us things have been overwhelming. Thank you for the words of wisdom and hope.


lzwitty said...

I share your concern for my own children, too. Our middle daughter was born with a large raised strawberry colored birthmark on her lower back. Without trying to alarm the kids, I say things like, "Hey, can you do this?" and then have them try one of the flexibility tests on the Beighton scale. They all appear to be more flexible than most but so far, don't really complain of any symptoms. I talked to my pediatrician about it, too, and he said until one of them really started showing symptoms, he was hesitant to pursue all the imaging, etc. Definitely keep me posted and I'll do the same. You stay in my prayers. ~Leslie

Jenn Ann said...

You have a great pediatrician!