Hi

Pepper - posted on 05/26/2009 ( 1 mom has responded )

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Hi everyone. My name is Pepper and we live in the Huntington area. We have 7 kids. Six still live at home (the oldest has a baby and is living on her own) which will soon turn into 5--one is heading to college in the Fall. The oldest three are my step daughter's so I guess we also qualify as a "blended" family. We have five girls (the oldest three are my husbands) and one boy. I'm currently a SAHM but I also sell Avon. Our kids range in age from almost 14 months to 20 years! Little bit of every age group... Our youngest, Ava, was recently diagnosed with a variation of Trisomy X (three "X" chromosomes instead of the normal two). Although she has three x's, they are not seperate. Two are joined and one is separate. Her geneticist just did more lab work to see which "x" has been activated. Ava's "issues" will depend on whether her body uses the good x or the double x. Double x will cause issues. Right now she has some developmental delay but it is mild and she is almost caught up. She has low muscle tone and tends to use her right side more than her left. She shows no signs of mental impairment and in fact all her specialists (she has 8!) seem to think she's ahead cognitively. She does seem to have some speech delay (very common in Trisomy X girls) but it's really too early to say so we've started her in speech therapy just incase. She is the happiest baby in the world and is full of personality. Her physical therapist calls her the queen of looks as she is constantly giving her the oddest looks as we try to get her used to moving in ways she's not comfortable with to build up her balance and muscle tone. SO the last year has been a roller coaster as we've known from day one that something was off but no one could figure our mystery child out. FINALLY at 10 months as we had been to just about every specialist, Ava's pediatrician begged for one more specialist--the Geneticist. My world fell apart at that point but as we've gotten a diagnosis we can now pick up the pieces and move on. She's doing great and life is finally getting back to NORMAL (which in our house, chaos is normal...). Currently waiting on the last batch of lab work for the X inactivation study. SHe's learning sign in speech therapy which has done WONDERS just in 3 weeks as now instead of screaming for what she wants, she points to it! Trisomy x girls do tend to be taller and Ava is in the 97% for height! She has problems putting on weight (also common in Trisomy x girls) but we recently finally got out of the 30% and up to 50% for weight!!! Woo hoo!!! Ava has rolls now!

We moved up here from Kokomo right before I got pregnant and through a roller coaster pregnancy and first year of Ava's life of going from doctor to doctor, I realized I wasn't SOCIALIZING with actual grown ups, other than my husband. This brings me here.

Looking forward to talking to other moms!

Pepper

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Tarah - posted on 05/26/2009

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well I can understand the not talking to other adults, it feels like all i ever do anymore is talk to my son. I am sorry to hear about your youngest but it sounds like she is a good fighter and will make it thru everything that comes her way in life.



I also know what it like to come from a blended family seeing as when I turned 20 my father decided to find someone new and she came with two children. I cant say she the best step mother but she does make my dad happy at times and her childern are kool at times, i guess it is harder because I have a twin sister and we are both 22 now and her childern are only 14 and 12.. but i look forward to talking more and more.

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