Life has been busy, busy, busy here in the Foothills. As mentioned previously around 6 months you get a slew of doctor appointments when your child bears the diagnosis of T21. Most recently was the geneticist. He thought she was coming along swimmingly. Her height is impressive (26 inches) and he reminded us that what we are talking about is a syndrome- some characteristics apply, some need not apply. He also commented again on how physical characteristics that are typical of T21 tend to fade over time. Has anyone else found that to be the case? I know for us it feels that way- but I have just attributed it to our ever increasing adoration of her. We recently found an article talking about a link between T21 and miscarriages and a particular gene named Bub1, Dr Geneticist said he was unfamiliar with it but would look into it for us. (I have a history of multiple miscarriages). We also found out that while the FISH analysis was done the Genetic Center wasn’t ordered to do the actual chromosomal analysis portion that would clarify if she has classic T21 or translocation. We decided to get that done and to also get our own chromosomal analysis completed- just for fun- you know- since they are offering and all. We will hold off on doing Zuzu’s though. We discussed the ethical issue on performing that on a person who can’t legally give consent for it when they are currently asymptomatic of any issues. We were wondering for her own reproductive future if there is anything there. I also have Factor V Leiden and we need to find out if either of the girls do as well. So back to the labs for all of us.
OT went from most excellent 2 weeks ago to down the hill since then. The Quail has figured out my game plan in what I’m about to request of her when I go to position her on the Boppy to try to nurse her- and while she isn’t screaming- she is still refusing and turning her head away- consistently. She even goes so far as to start to pout- jutting that fabulous little lower lip straight out the minute I lay her on the Boppy. So Kathy suggested we mix it up a bit and try holding her to nurse and laying her down to bottle feed. I’m glad to see she’s a smart little cookie, sorry she is showing me this over nursing.
My sleeping angel has also started to wake 2 times a night every night to eat. We haven’t started solids yet. Kathy wanted to get breastfeeding established before adding in another variable but this is starting to wear us out and could be a red flag that we need to get some cereal in that girl. It could be hunger or it could just be that I stopped swaddling her at night. I swaddled Zuzu till 10 mos but thought I would stop earlier this time. I hadn’t quite gotten my brain functioning enough to make the link. So we went back to swaddling at night this week and that did decrease the waking and now she has just been waking one time a night. A little improvement and a part of the puzzle.
PT is really a lot like our EI visits- which says alot for the quality of our EI (Thanks Jodi!). The Quail is doing well with rolling- she almost has back to tummy figure out. We spend a few minutes each day doing little baby log rolls across the couch. She likes it when we sit on the floor in front of her and assist her in getting over- she sits and coos her little vowels at us while she does it. She has started arching her little neck around to see where we are going when she is left laying on her back anywhere- which in turn starts her to turn over! She’s doing good with supported sitting and feels pretty stable with that- we are slowly decreasing our support and showing her all about protective extension to, well- protect herself when she does it on her own. She’s really been enjoying playing with toys or anything she can grab while we are holding her- hair and necklaces included. It’s been funny to realize I’m suddenly not holding something anymore and to spy it in her grasp as she grins up at us- little clever cat! I know they say it is best to work her exercises into daily routine but honestly- the day gets so busy that it is too easy for it to slip by and realize no exercises have been done. So for us it does work better to assign activities to Lovey and I and then each be responsible for getting those activities in during the day.
On the hearing front she is scheduled to get tubes next Wednesday due to persistent fluid and her tests are showing some hearing loss- but until we can get an ABR done we won’t know exactly how much. They said she was hearing at a conversational level but probably not much softer and probably missing consonants. We’ll get the ABR done the week after the tubes are in.
That’s it for now!