Sunny Days

  Sunny had a great week! Both of her parents have birthdays this week, so it's been somewhat fuller than normal and she's been a gracious lil champ. Monday, she had her helmet follow-up, where he verified the fit was still good, & made a small repair. We then went up to 2B to see our friends! Everyone who walked up to see her, almost immediately, said "Sunny, you're huge!!!"  Despite her feeds decreasing from 24/7 to 18/7, she's still managing to stay on the higher end of the *typical child* growth chart. Her PCP said how there wasn't really a growth chart for trisomy 18, but growth was usually slow. Sunny has 99 problems, but growth has not been one.  This week also had a couple Trisomy awareness days - because March is the third month, and TRIsomy  is a genetic condition characterized by the presence of three copies of a specific chromosome instead of the normal two. And then specific days highlight particular trisomies - like March 13 for Trisomy ...

  Sunny was living it up this week - the weather was in the 70s Mon-Wed and we took full advantage. We took walks on all three of those days, and they turned out to be an accidental almost 3 mile walk each time! It felt so great to be able to get Sunny out so much, and to get out and break up the day for her nurse and myself.  Tuesday, she had a follow-up with her Endocrinologist. She said her numbers were good, and that plus the dose she was on, (for her hypothyroidism) was encouraging.  The rest of the week, we took our walks until it switched back to winter & we stayed inside. She finished up her antibiotics from.... whatever it was. They made her very tired, so LOTS of sleeping pictures because that was a bulk of what she was doing:)  Next week, we have a follow-up with her helmet team. She wasn't wearing it for about a week when she wasn't feeling well, and we still don't enforce it too rigidly. It's for sure a priority, but if she's abnormally agitated - w...

  Last week ended with a trip to the ER, a pneumonia diagnosis, & antibiotics ordered for us to pick up on our way home. After a few hours of Sunny's heart rate being in the 170s, we decided it best to have her checked out. Normally, her heart rate is around 100s-120s when awake and content, and 150s-160s when mad. Other than occasionally arching her back, that morning she appeared rather content. I held for for a little while and she fell asleep, but her heart rate still was in the 160s - and she usually  sits in the 90s whilst sleeping. We had gotten to the ER around 7:00am Friday morning, and still hadn't had anything to eat before we were discharged around 2:30. Our caffeine-less selves picked up the antibiotics, as well as some spicy chicken sandwiches from Chick-fil-a on the way home.   The team at Hershey had done EKG, x-ray, blood work, respiratory panel, urine, and because we were suspicious of something brewing in her GI, a stool sample.  They came...