I knew nothing prior to her birth i knew the high risk doctor had an issue getting a good femur measurement it was <2% but that counted within range so i looked things up on short femurs & got things like downs & dwarfism so i guess i kinda knew but next visit was fine but i often wondered that was about jan she was due May 5th 2007 due date came & went i was about 6 days over when i guess my water broke (i thought it was a small leak) i went in on the 14th she was born at 12:13am 5-15-2007 7lbs 6oz 21.5 ins long (so we think) i recall being so scared as she came out & she wasn't breathing not a sound she was under my legs the midwife & everyone was quiet i didn't ask (i also had no clue the entire nicu team was outside the door guess we missed something) i looked at her she was grey & blue & purple i guess her color was unexplainable (no pictures were taken because it wasn't allowed till basically i was more decent, she cried i held her & i cried she was alive thank God & we did what you do with babies count fingers & toes & figure who they look like never did i think to measure her legs but later a nurse noticed the ped was called everyone left & when they took me to recovery they took my baby for x-rays i wanted my baby back i was alone & scared it was 4am around 5ish i got her back i think we slept for a bit & i had a genetic doctor in the ortho in & they said they were unsure but it did appear she had no fibula in her right leg nothing i did nothing passed on just a fluke a 1 in 40,000 chance & my baby girl had it as one said be thankful it's not a liver a kidney or a heart it's just a leg.
we started our journey just me & Makani i was in love with my daughter & i couldn't wait to be home so my almost 3yr old son could meet his sister, the first few weeks were hectic doctors & x-rays but i already knew what she had i joined PFFD groups within days & figured out what Fibular Hemimelia was & i did as much research as i could her doctor was good he implied she had a shallow hip socket & it may go into place (clearly he lied records state hip dysplsia) she was put on her dads insurance at 7mths old & we could no longer see the same doctor they told us to go to Loma Linda (we live in Cali) so i did doctor wanted to cut off half the foot & put her in a "fake" leg (no offense to anyone this was my feelings so i'm sharing) next stop Shriners of LA........ a trip to Shriners was always a day trip i often toted a pregnant belly or new baby along with Makani, we went for about 2 years with just wait we'll wait till she's older, maybe in 6-12mths i was happy 6mths later oh those doctors were fired do to early surgeries......umm there is such a thing? i never trusted Shriners & we had had one other consult but the doctor wasn't within range & the insurance said sorry it took those 2yrs to get to the doctor & he said she should have been here a year ago.
Makani didn't realize she was any different as you can see she crawled, she walked she sat, she was no different than any other child they tried to make her wear the lifted afo she hated it & took it off all the time.... we let her it's her foot her leg she learned to walk with a shoe on her right foot & her left foot bare it worked.... i love the determination she has always had & being that she started life with just a mom & then gradually back & forth although we spent alot of time as her parents together for the first 6-12mths & then gradually she became joint custody as we see fit for her & through it all we never agreed what was best for Makani dad said we should wait & let her decide i said we should do things early it's easier on her & she has a 15cm predicted lld i won that fight but it's not about winning it's about the race to get where your going & i now more than ever know that this is a slow & steady race not a hey look lets do more race & it's life & life happens sometimes it bites us in the butt, but life happens & God is in control.
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