This is the last update of 2011…
Julie is 8 ½ months old and continuing to improve in all areas except oral feeding.
It’s been over a month since my last update for Julie. I’ve been busy with school. The written assignments have been manageable, but I’ve had well over 1,500 pages of reading and my 1st Greek class…
Greek is a full-time job all by itself. There have been 100s of words to memorize, 100s of pages to read, 100s of rules to understand, dozens of homework assignments, six quizzes and three tests. I have some time off school for Thanksgiving and I’m going over everything again before the final push begins.
We took Julie to a Halloween party given by the heart surgery folks at the hospital. Julie came as a Tootsie Roll (see picture).
Julie has seen most of her doctors since my last update. She is climbing higher in her weight, height and head size. Her 9-month clothes are tight on her. She can wear 12-month clothes comfortably. All of her appointments have been good with no new problems (except feeding). We are basically on a maintenance cycle (3-6 month) with the doctors.
She’s received all her normal vaccinations, this year’s flu shots and a special RSV shot. The RSV is a special series of shots to keep Julie from getting sick this winter. The pulmonologist wants to ensure that she gets through the winter without any major problems. Although she is so far ahead of last spring, she still has periods where she coughs, gags and pants. Each day has its own challenges. She has more shots in December.
Her Mickey button continued to be a “pain in the…” for all concerned until just recently. On advice from one of our contacts, we decided to fill the balloon with more water. That, plus some adjustments in how we care for her sore, has made a world of difference. We are still within the limits of the balloon, so we’re comfortable that this is a good move. She still has a lot of discharge, but the button fits better and the raw, red flesh around the hole is gradually diminishing. Julie is happier at the twice-a-day cleaning, which makes Mom and Dad happier.
Julie finally had a follow-up swallow test in October. At her original swallow test in June, she showed signs of aspirating liquid into her lungs. The test in October confirmed that she wasn’t aspirating anymore, but she isn’t sucking properly which makes the job of oral feeding much, much harder. Since then, we’ve tried solid foods, different bottles, and all sorts of other tricks to get her to eat, but she has resisted everything and finally just shutdown completely.
We finally got the Early Childhood Intervention (ECI) folks to come out in mid-November to take a look at her. They assessed her gross motor skills about 1 month behind and her fine motor skills to be about 1 month ahead (no big deal either way), but her feeding was zero. Essentially, she is worse than a newborn when it comes to a bottle. We have two therapists coming once a week. One works with Julie and Sarah on eating and the other on some fun exercises and games.
Sarah has had a fulltime job keeping up with the changes to Julie’s routine, learning the new processes and implementing them multiple times a day. I try to keep up, but I’m lost when it comes to most of the steps. Fortunately, Sarah was training to become an SLP when we became engaged, so she has some understanding of what’s going on and is getting practical experience instead of another diploma.
On top of everything else, we realized that Julie is teething. Her first tooth (see pictures) came in early this month starting with the upper teeth. The lower teeth are coming but are taking their time. Julie has had several loud bouts while we learned how best to help her. Sarah has a couple of brushes which Julie loves.
While Julie still can’t roll over or crawl, she can stand on her own (feet flat against the floor) with almost no support or balance from us. She can sit upright without support for limited periods (see pictures). After many months of work, Julie can lift her head completely for extended periods of time while lying on her tummy (other pictures). She even sleeps on her tummy during the day (she was so tight from being in the NICU that lying on her tummy was uncomfortable). She has favorite TV shows on the Sprouts network, laughs at Sarah’s songs/signs and is comfortable in her crib by herself while Mommy and Daddy are trying to wake up. Today she enjoyed a quiet morning with Daddy while he read email and sorted pictures. It’s taken me about six hours to get caught up.
I’m going to try to send seven pictures. I’ve explained all of them, except one. Julie is attacking one of her favorite toys – a grey elephant named George. I’ll leave you to come up with your own political jokes.
The bird is in the oven in preparation for an evening meal. Sarah and Julie are in the master bedroom bathing and showering. Rachel is curled up in a shoebox on my desk. It’s a day to give thanks to God for many, many blessings.
Andy and Sarah Horn
My family kept bugging me about sending pictures. The hardest part of the updates involved sorting through hundreds of pictures and finding the ones with nice expressions and the occasional smile. Fortunately, Julie has photogenic features. Who knew my kid would turn out so cute?