Quentin

Hi! My name is Quentin and this is my story. My mommy, Robin, who is a former preschool special education teacher now school psychologist, and my daddy, Steve, who works on Blackhawk helicopters at Ft. Campbell, eagerly anticipated my birth for nine long months (I was their first so they had no clue how much I was going to change their lives!!). They didn’t know whether I was a boy or a girl so they called me Beaner in honor of my first ultrasound where I resembled a small bean! Anyway, I made my entrance into this world in February 1996.

I came via C-section as I had spent the last six months sitting upright and refused to flip as Nature dictates (this bull-headedness is a trait I continue to exhibit…Mommy says I got it from Daddy 🙂 after my arrival, my parents were very excited to hear that I was a boy but were then told that there were a “few problems” with my right foot and hand. Mommy’s doctor was wonderful, reassuring them that my differences were not caused by anything they did nor were they life-threatening. I only saw Mommy and Daddy very briefly that morning as I was quickly whisked away to Vanderbilt Hospital in Nashville to see some more doctors. Mommy and Daddy were very upset, crying and worrying about me as they didn’t even get to hold me 🙁 , but by that afternoon I had them all calmed down! I spent the afternoon in the neonatal ICU where I met my grandparents and some of mommy’s friends as well as my new specialists. Mommy and Daddy were told that my differences were caused by amniotic bands and they took pictures of my hand and foot so that when I got big, I could see what I first looked like. My right foot got tangled up in a band, resulting in the foot being twisted up to touch my shin and forming only two toes. Future x-rays showed that I had lots of other toe bones but they were all jumbled up within my foot. My hand had a stubby little thumb, an intact pinkie, and amputation of my middle three fingers above the first joint. My middle three fingers were all conjoined (they call that syndactally but that’s pretty big word for me to use!) and my thumb was stuck to my palm at birth too. Of course, none of this really mattered to me…as long as I could kick my little feet and suck on my thumb, I was happy with all of me! But Mommy and Daddy, well, they didn’t take it as well as I did! They cried a lot, worried about why this had happened, and basically felt a lot of guilt and confusion. But, lo and behold, after they took me home and started seeing that my differences were the least of their worries (breastfeeding, explosive diapers, and wee-hours wake-up calls soon took over their lives!), they began to see that guilt and worrying would do them no good and instead started the difficult task of being parents. Of course, although the guilt is now resolved, I’m hoping to dredge it all up again in time to wangle a car out of them when I’m sixteen!

I’m now two (terribly so!) and have had four surgeries so far (two on my hand and three on my foot….I know, that doesn’t add up to be four but you’ll see that there was some overlap…really, I can count!). I had my first when I was a little over a month old…they had to do a z-plasty on my right ankle to get rid of the band and the constrictors it caused or I would have lost my whole foot. Then when I was about five months old, I had my ring and middle finger separated, with a skin graft from my thigh to help cover it (and boy did I trick those doctors….they took the skin from my thigh and then told Mommy and Daddy to keep that area clean and dry…a hard thing to do with an explosive diaper-filler 😉 My third surgery was when I was about 8 months old… the band around my ankle was still causing me problems, making the skin in that area stretch way too tight, so they put “tissue expanders” in that Mommy and Daddy had to inject with saline in order to
stretch the skin. Ugh!!! That was horrible, but it laid the groundwork for my next (and so far, last) surgery where my hand doctor, foot doctor, and plastic surgeon all worked on me. They took a bone from my foot to place on my pointer finger (hoping to give me more length and opposition in the future…got the opposition thing under control as a terrible two-year-old!), split and reattached a tendon in my foot so my foot could lay more flat and be walk-able, and tried once more to loosen up the skin around my ankle so that my foot could not only walk but also flex and extend. Then, for the past year we have also been battling lymphedema in my foot (swelling caused by the band damage to the lymphatic system) with compression wrapping, Jobst stockings, and massage. Recently I had my first MRI and found that I have lots of fatty tissue in that foot, so I am taking my Mommy and Daddy to Atlanta to a doctor who says he can help us with that! (Mommy says the fatty tissue was inherited from her hips and thighs…she ‘s hoping the doctor will give her a family discount on fat removal 😉 So, that is my medical history!! I’m thinking that with all this experience and knowledge, I might have to pursue a medical career just to put it all to good use!

Mommy and Daddy say that these first two years have been filled with ups and downs … but probably no more than they would have experienced had I been born with all my bits! The initial guilt has since disappeared (Mommy apologized to Daddy 1,000 times those first few days…seems she thought that because she worked in special education and always wanted a special needs foster child, that God had sent me to her for a purpose … she was afraid Daddy would regret marrying her as he might feel as if he got “dragged into” all of this unwillingly…it really didn’t help when everyone kept saying that “God knows what He’s doing, who He sends to which family” etc.), and I have shown them that everything will be OK! My battles are not yet over (my foot still is too swollen to wear most conventional shoes) and many obstacles lay waiting, but with the love and support of my many family and friends, I am bull-headed enough (and cute and smart enough 😉 to make my place in this great world! It is my mommy’s dream that I will grow up to be
whatever I want to be and that I will never let my differences stop me from pursuing my dreams. That’s a pretty tall order, but I think I can face the challenge….as long as I have my Pooh-bear!

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