(Random note: Today is Leah’s 227th day. This has no real significance except that today she is a TV sitcom.)
WHEW! This week is finally over! BabyBug had a total of 9 appointments. Here is the rundown on how they went, partially for you and partially for my own reference:
Monday: Speech: Turned into an emergency visit to the nurse practitioner when BabyBug’s g-tube balloon failed. “Glug glug glug.” Leah is not quite ready for a swallow study yet. She needs more OT to work on sucking coordination.
Tuesday: Surgery: Baby is cleared for feeding as far as surgery is concerned. Their main focus is on feeding from a structural viewpoint – maintaining the g-tube, watching for strictures. GI: Leah’s feeds are now bolus (over an hour) during the day and continuous at night. Her g-tube site already looks a little better.
Wednesday: RSV shot. DID SOMEBODY SAY SHOT? Leah was pissed, but she was strong and brave, although she had a few choice syllables for the nurse. The lady in charge of the RSV shots gave me some awesome signs to hang on the stroller so that people don’t randomly reach out and try to touch the baby without asking. Seriously – this is not only people we know. Total strangers will sometimes reach out to touch the baby or the stroller. Why do they do that? Why?
Thursday: The big day turned into a day with a big gap. The morning appointment with the ENT was simply lovely. Buggy got some yuckies sucked out of her nose, and then a big scope (not that big really, but to her it probably looked like a hose) stuck up her nose and into her throat so the doc could see her vocal cords and other nifty throat parts. Leah’s vocal cords are still a bit red, but they are moving more appropriately than they were last time, and her larynx no longer appears to be very floppy. The ENT says for the time being we can come back and see her as needed but no follow-up is necessary. YAY! The OT appointment got cancelled at the last minute (not sure why) so we wound up with a 3.5-hour gap between appointments. So Gran and Mama and BabyBug went to Starbucks. Oh yeah. Baby had her first Starbucks trip and it was grand. Or maybe grande. Leah was very well-behaved, and even got in a little bit of a nap. We did have one, um, “incident” in which Mama Lisa adjusted the nasal cannula so that the tips pointed in the right direction (into her nose), and BabyBug responded by casually putting her hand up to her nose – and ripping the cannula right off her face. She thought this was absolutely hilarious. I got big smiles. She was very, very proud of herself. After Starbucks Leah had her pulmonology appointment. BTW, Leah weighs about 11 lbs, 4.5 oz. Could be better, could be worse. She pulled off her cannula AGAIN at the office, so we just left it off while we waited to see the doc. He approved our request to have her only be on oxygen while she is sleeping, although we really need to get a pulse oximeter so we can keep an eye on her saturation levels. She is due to have a sleep study within the next few months, but he said that based on what he has observed, he thinks it will likely come out abnormal. So we’ll likely be dealing with that in the coming months.
Friday: Regional Center assessments! The OT came in the AM and did her assessment, and it sounds like she plans to recommend PT, OT, and an OT feeding assessment. Leah’s chronological age is about 7.5 months, but her adjusted age is 5.5 months since she was born 2 months early. However, with the Down Syndrome and also such a long hospitalization, the expectation is that Leah would be behind in development. The OT went over some of her findings with us and it sounds like Leah’s age developmentally is about 3 months right now in most areas. She was at 20 days for reactions to sounds – she hears them but doesn’t turn to investigate. I think this was referred to as receptive language. And guess which area was right on target for her adjusted age of 5 months? Expression! I believe (could be wrong) that the specific term was expressive language. Basically, in terms of expressing herself, she’s doing pretty well. But I think we all knew that, right?
The hamsa is up! Once Leah is in her own room it will go in there for her, but for now it is in the living room for everyone to enjoy! Thanks again, Angel Love Boxes!
Adorable precious jacket from JK Jackets for Kids. Thank you!
“Really, Mama?” Tonight we had our annual holiday get-together with cousins Beth, Brian and Erin and some additional family/friends, in place of the Christmas Eve we usually spend with them. BabyBug got all dolled up in a dress that was a gift from Beth and Cool Auntie Erin. Leah had lots of fun, but I think she’d have been happier wearing a onesie. It’s not so much that she doesn’t enjoy dresses in particular – it’s that she doesn’t like anything that is bulky or particularly complicated to put on, e.g. jeans, ruffly dresses, overalls, t-shirts – really anything aside from front-snapping onesies that don’t require anything to go over the head. On the other hand, she does seem to reserve some of her very best angry faces for the frilliest outfits…