Update on little bug

Here is an update on the bug since so many have kindly asked. We have two big appointments this coming week- one with ophthalmology on Wednesday and then our big cranio-facial team clinic on Thursday.  The ophthalmologist we have to see again b/c her hearing loss is mixed with “sensory neural” and they ask that you make sure the nerves in her eyes are not also affected. We need to find a new ENT….long story I’ll write about later (grr). We are also hopefully getting her baha hearing aid this week. Big week. The clinic on Thursday already has me fighting my own anxiety. It’s supposed to be chaotic and challenging, but will hopefully or possibly give us a road map to what she’ll face in her young life. A plan. So my heart is full of expectations and trepidation as we anticipate this plan. As a self proclaimed planner….you can imagine why.

Then there is the genetic testing. I don’t think I mentioned this earlier, but we had her genetically tested to find out if her Treacher Collins was passed by one of our genes or if it was a genetic mutation.  When I mentioned the phrase “genetic mutation” to one of our friends he said “well I don’t think it’s fair to say that."  It’s not a derogatory thing to say- actually it’s just a technical term for TCS- the gene is either from a parent or mutated on it’s own. Finding this out will tell us our story for future children… for her future children too.  We are waiting on those tests from the one of two hospitals that does this test so who knows when we’ll get it. I mean…they read genes for goodness sakes. Sounds hard. It’s also hard to wait. When Bo and I discuss if it’ll matter to us if it came from our genes, we say no, but I’m not sure that’s true. I know that if it’s from his side I will not care. But if it’s from mine……I will. Just being honest….. I will totally care. I cannot explain exactly why but it’s there.

Little bug has happily (hurray) been gaining weight. Double hurray. Not completely enough as what the doctor wanted but enough means enough for momma. Her newborn clothes are finally snug. She’s gaining strength in her neck and certainly her lungs :).  I cannot wait for her hearing aid so she can hear our voices clearly. How magical to know that she’ll be hearing my voice when I tell her that I love her.  Hurray.

Back to celebrating small moments with the bug. She’s as hungry as ever and sucking on her pacifier as if milk will come out of it. Time for a meal!

xo

Eloise

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