Category Archives: Down Syndrome

Cardiology and Neurosurgery Updates

We went to see the cardiologist yesterday for Mia’s annual check up and everything looks great!  She has a bicuspid aortic valve, but we’ve known about that for a long time.  The important thing is that her heart is functioning … Continue reading

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I have 2 Six Month Olds!

The babies are 6 months old!  How did that happen?!?  We started solids today (actually a week ago, I’ve been slacking a bit on the blog) which was super exciting.  We started with avocado because it’s soft and nutritionally dense. … Continue reading

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Mia Updates

Oh, my sweet Mia.  We’ve had lots of appointments in the last few weeks so lots of updates!  Mia went to see the eye dr and the results were mixed.  Structurally her eyes are fine which is fantastic news, but … Continue reading

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Nursing at Deep Eddy

So this happened. I was pretty sure I was going to be rocking ye olde iPhone 5, but RaptorDad is awesome and took it in to get the glass replaced on Friday.  Even better, the machine that replaces the glass … Continue reading

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ENT Referral and Twin Smiles

Mia has been making this weird noise pretty much since she was born.  I’ve tried to describe it to the various medical professionals, but the little stinker has yet to make it in one of their presences.  Her speech therapist … Continue reading

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3 Month Mia Update!

Mia is doing fantastic!  She’s making great eye contact, she’s started smiling and cooing, and she’s tracking.  Also trying to find her thumb and lifting her head up.   ECI is going fantastic.  We just added speech and a nutritionist. … Continue reading

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Genetics are in…

…and Mia apparently has the rarest form of Down syndrome: Robertsonian Down syndrome.  From what I can tell, this means that she has an extra copy of the 21st chromosome stuck to one of her 21st chromosomes.  So she still … Continue reading

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Weight Check Update and Valentine’s Day Pictures!

Mia had another weight check on Wednesday and she had only gained 6 ounces in the past 12 days which puts her at 6 lbs 12 oz.    She’s supposed to gain .5-1 ounce a day, but they really want … Continue reading

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ECI Evaluation and a Layout

Since Mia has Down syndrome, she qualifies for services through the state.  We had our evaluation yesterday and it went very well!  It’s weird to be hoping that your 7 week old has a demonstrable developmental delay, but that’s our … Continue reading

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Breastfeeding Twins

Breastfeeding is super important to me.  After a bit of a rocky start, Raptor and I had a great nursing relationship.  She self-weaned when my milk dried up at 15 months.  Imagine a rant here about my OB who insisted … Continue reading

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