Rachel is my teenie weenie, ball of energy. She was born full-term (late in fact) right after Thanksgiving in 2002.
Rachel was 'officially' diagnosed with Neurofibromatosis when she was 5. This was after MY diagnosis and came when her pediatrician urged us to see an Ophthalmologist because of some severe crossing and "mysterious" markings on the iris of both of her eyes.
I knew before the the Ophthalmologist even said the word, that Rachel had NF. But now - Finally - The pieces were coming together...And the fear of this dreaded disorder were coming full circle.
During Rachel's MANY doctor visits, it was noted in charts, that Rachel's height and weight, were not even touching the height/weight ratio markers. ONCE, Rachel hit the 5th percentile, but the next month, she was back down to the 2nd %.
Last month, during Rachel's 9 year old check up, her doctor said a phrase that I swear I thought I'd never hear....
"Failure to Thrive".
I found it EXTREMELY ironic that this phrase was left floating in my head, after we left the doctor that day. "Failure to Thrive?" Are you kidding me? This goes against EVERYTHING I have been working for...Everything I had been imagining my life was about.
We were asked to come back in 3 months to do a medication check, and to also check Rachel's weight, to make sure we were heading in the right direction.
Today was that visit, and Rachel was down 1/2 of a pound. That's not a lot of weight...But when you only weigh 41 pounds...It IS a lot!
That phrase came up again...."Failure to Thrive"....I don't like it. I don't look at my daughter and see a child who isn't THRIVING. She is happy, healthy, spunky, silly, energetic, social, fearless, tough, alert (I could go on and on)
Do YOU accept labels? I know sometimes a label can be a good thing, especially when it comes to education. But what about a medical label? I know for SURE, I don't like being known as "the woman with the bumps"....or "The woman with ALL those kids". (I've been called some other pretty bad things..But we'll keep this in the positive)
I don't like labels...and I refuse to wear them, or allow my children to wear them. Bailey isn't known as "The one going through chemo"...Braden isn't known as "The kid who can never look you in the eye."..and Rachel FOR SURE won't be know as "The failure to thrive kid".
Labels limit you (Or CAN, if you allow them to)
So, while Rachel may live her life "off the charts"...We accept and embrace this as part of who she is....Definitely not WHAT she is.
THRIVE ON!
So as the rest of the world is obese and getting fatter, you are told your slender, petite child is too small? I don't understand. :)
ReplyDeleteShe is a beautiful, petite girl. And to tell you the truth, she looks like she is thriving from the photo you posted.
And just a question, with a very well known established family history of NF, do you think a child who is almost 7 and still showing no signs of NF could be in the clear? We haven't done any tests....just a watch and wait.
WOW! Kristi you are truly an inspiration! And you are so right! You said it all.
ReplyDeleteI can not believe a dr would say something like that, Well I can but you know what I mean! Thriving is one thing you guys do do. You and your kids have inspired me so much. Keep THRIVING guys!! you are all AMAZING!!!
ReplyDelete..and I got to thinking about myself when I was in about the 6th grade I only weighed about 60 pounds. It was the funniest thing because I seemed to weigh my grade around that age. 7th grade I weighed 70 pounds, 8th grade 80 pounds and I stopped gaining weight after I reached the 9th grade and 90 pounds. (But then at 20something I got pregnant and now weigh 135)
ReplyDeleteHummm What I see here is a new thing going on among doctors.Called the new FTT .My grandson is 11 months old eats good and has NF1 Guess what they labeled him as FTT also when he was 9 months.Sounds like a new trend to me...
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