01.04.2016

Eleni Update

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It’s crazy to think that my baby is almost a year old!  Christmas with her was wonderful.  She didn’t care all that much about the presents.  She’s scared to ride the rocking horse that Santa brought, but hopefully she will grow to love it!  We definitely missed spending Christmas with BG this year, but having EJ was so much fun.

EJ is now up to 20.5 pounds.  She crawls all over and can go pretty fast.  She won’t keep socks or shoes on and the tops of her feet have calluses from rubbing on the ground when she crawls.  EJ loves all foods and has a really good appetite all the time.  She’s very trusting and will open her mouth for us to feed her anything!  Right now EJ’s favorite toys are books.  She picks them up, turns the pages herself and runs her finger along the page as if she’s pointing to what she’s reading.  She learned how to shake her finger “no” over New Years and we’re trying to teach her to hold up 1 finger to say that’s she’s 1 year old.  She’s finally started pulling herself up on everything too.

We went to visit EJ’s pediatric ophthalmologist for a check up this week and, as we suspected, the hemangioma behind her eyeball has continued to grow.  The eye doctor upped her medicine dose and said we need to continue following up every 8 weeks.  If we ever get to a point where the propranolol seems to hold off the hemangioma then we may start tapering back on the dosage, but he said she will likely be 18 months before we get to that point.  Alternatively, he still said we’re at risk for the hemangioma to stop responding to the propranolol and we may have to put her on oral steroids or do some sort of surgery.  Obviously I’m still hopeful that the propranolol will continue working because I hate the side effects of steroids and I absolutely don’t want to put my baby through surgery.  I’m so thankful for modern medicine and doctors.  This is such a scary situation, but every time we visit the hospital I’m given a little more faith and feel more reassured that it will be okay.

Now, we’re on to planning EJ’s first birthday!  She turned 11 months on Christmas day!
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