Friday, October 30, 2009

Sisters

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Sunday, October 25, 2009

Implications

I'm realizing the implications...she may never read, write, have conversations...it is overwhelming to know this.
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Saturday, October 24, 2009

Baby stroller

Sadie loves to sit in the baby doll stroller.
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Tuesday, October 6, 2009

Lots to Report

Lots of wonderful things going on around here.  First of all, Sadie has continued to say, "dada."  As with the other few times that she said it, I was so hesitant to get too excited, but it really does seem like "dada" is her newest word.  So far her vocabulary includes mama, baba (baby), baba (bye bye), uhhh (up),  moe (more), awe (all done), approximation of Daisy that just sounds like loudly saying "ahhhh."
We had several follow up doctor appointments in the past week also.   We saw the rehab physician, who is working on getting Sadie a bigger car seat and bigger stroller.  We got into a debate about whether a 4 1/2 year old will sit for a meal and throw food.  She argued that Sadie didn't need a bigger/toddler high chair that she should be able to sit in a chair.  Well yes she sits in a chair with the table up to her chest because she doesn't sit on her knees. So in my opinion she would greatly benefit from another chair.  After all, our insurance allows money for special needs equiptment, shouldn't we use it.
Both girls had their routine dental appointments and they both look good,  Sadie's front teethh look great after her face plant in the hardwood floors a few months ago.  One tooth was half way hanging out and was gently pushed back in place.  Thank goodness they look good.  People always comment about her beautiful teeth.  She's lucky.
Yesterday, Sadie saw her GI doctor.  She continues to take her Prevacid twice a day for reflux.  I'm considering cutting the tabs in half and seeing if she can tolerate a lower dose.  He was pleased at her 2 1/2 pound weight gain in the past 6 months.  She went from the 5-10% to 25th% for her weight.  Luckily he doesn't plot the height and weight against each other like the geneticist does.  She always fusses at us for Sadie's thin figure.  We haven't given her Periactin to stimulate her appetite in months.  She has a new interest in food and eating.  It is a relief to see her eat after the stress of feeding her in the first 3 1/2 years of her life.
October 20th, we see a new cardiologist.  The last time we saw that doctor, Sadie had just turned 3 and we were told that he felt pretty certain Sadie would NOT need heart surgery.  He recommended we see him in 1 to 2 years.  Unfortunately, he moved to another hospital over the summer and we will be seeing someone different.  Dr. S was the first physician we took Sadie to see when she wasn't even 22 hours old.  When they rushed us out of the labor and delivery room and sent us straight to CHKD.  I was stunned and the nurse told me if she were in danger we would have been transported by ambulance and we were okay to drive her ourselves.  She was only 21 hours old on her first car ride to the children's hospital.
As for school, the preschool partners (typically developing peers) joined Sadie's class this week to make 6 special ed students and 6 typical students as models.  I know the teacher and other students will be adjusting to a busy class.  I hope the pilot program goes well.  Sadie loves other children and enjoys watching them.  She is so curious.
Now that I have a new netbook, I can hopefully post more often.  Until next time..,