Journal entry by Jen Scott —
Time flies fast when you are having fun! So much fun, excitement and firsts to report about Henry since we last posted (2 months ago)!
July:
- Turned 6 months old
- Met Uncle Alfonso and Aunt Patty - they made a Cincinnati pit stop after returning from Colombia en route to Wisconsin
- Went camping for the 1st time in the RV and went to his 1st race (Mid-Ohio Sports Car Course)
- Had the repeat Swallow Study to assess his vocal cord function and aspirations. We got the GREEN LIGHT to progress with normal bottle feeds and start purées.
- Went to Michigan to meet many of our Michigan Friends
- Went to 1st Cincinnati Red’s game and met lots of my co-workers
- Started Physical Therapy
Henry’s NG tube was discontinued and pulled out on July 1st. We spent the month of July being closely monitored by ‘The Tube Wean Team’ at Children’s to ensure he was growing well with normal bottle feeds. We officially GRADUATED on August 8th. This truly meant we were finally done with Henry’s daily surveillance. Ever since Henry came home, we were linked to Children’s Cardiology via special phone applications. This was exceptional support and guidance we had received from Children’s. But also saying good-bye to this level of daily surveillance has allowed us to normalize life with Henry.
August:
- Turned 7 months old
- Joined bath time with Stella
- Went camping for 2 nights in the RV
- Got his bottom 2 front teeth
- Loving purées
- Able to sit up on his own
Henry’s heart is strong and he is growing fast. His last echo mid-August showed his Glenn circulation is doing great and his EKG showed great stability. Continues to only rely on his pacemaker about 30% of the time. Henry’s daily medications consist of only aspirin and pepcid. With great growth and heart stability, Henry does nog have to see his care team until mid-October.
September is only a few days away and we are already anticipating more fun, excitement and 1st for Henry. One of them being his 1st day in daycare. More updates to come, especially the updates on ‘how is the Scott Family of 4 is handling without Grandma and Grandpa’.
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