Well! I’ve had at least 5 people tell me pointedly that I haven’t updated the blog in a while, so I guess it’s time.
What’s new in the BabyBug household?
Well, Leah is officially 8 months old as of yesterday, January 8. (Here’s the video we posted on Facebook for her birthmonthday.) She is spending more and more time looking at her feet when she’s in her chair, and we’re sure she’s going to try to catch them any day now. We are working with her every day on tummy time and sitting up / neck support, and she is getting better and better at it, although she is still a bit bobble-headed and I think she’s a long way off from being able to sit up on her own. Her big accomplishment in recent weeks is that she can support her neck when we pull her from being on her back to sitting up. She couldn’t do that in the hospital! Good girl!
Leah’s Regional Center intake worker let us know that Leah will be getting three appointments per week for the time being – one OT feeding, one PT, and one infant stim. I’m a bit concerned because they sent us a copy of the OT assessment after that decision was made, and it’s not made entirely clear in the assessment that Leah doesn’t know how to eat at all – in fact, the reason given for the g-tube placement is difficulty in coordinating sucking, swallowing and breathing. Yes, that’s her problem now, because of the Down Syndrome and lack of experience in eating – but the g-tube was placed because she was born without a functional digestive tract!
In my previous job I was just starting to learn about special ed, having previously focused on another topic area. I have the feeling that I’m going to learn a lot more by being on the parental side of things. Lesson # 1 learned: Get a copy of the assessment before the eligibility meeting takes place.
Other things going on since the last blog… BabyPie has finally graduated to a high-chair, so she can sit AT the dinner table with us instead of sitting next to the table in a bouncy chair and looking up at us going, “HELLO! LOOK AWAY FROM THE PLATE!” The pictures make her look really big, but she is so very tiny in this thing that she can’t even reach the toys we put on it. She is itty bitty.
We had lots of visitors this past week (all pre-screened for coughing and sneezing and sniffles, of course!). Our friends Jess and Toni and their 19-year-old son Wesley (also chromosomally enhanced) came over for dinner last week. My family came over this past weekend so that we could celebrate my mom’s birthday. My sister brought my 94-year-old grandpa, who loves this little bug so much. She makes him smile. Later in the week, cousin Jenna went in for surgery, and Dr. BabyBug made a couple of virtual house calls. Cousin Jenna finally got out of the hospital today and of course she came over for some Bug Therapy. Our friends also came over this morning, and one of them played with Leah and gave us some ideas for exercises we can do with her. Always appreciated! The other friend served as nap-time comfort. On Saturday, Aunti Staci is coming over!
Leah has started her speech therapy. She’s still having a ton of trouble with the whole notion of pulling water/milk into her mouth and then swallowing it. She’s like, “OH MY GOSH, I WANT TO EAT, I JUST WANT TO EAT, NOM NOM NOM – wait, what is this STUFF in my mouth????” She wants to nurse, she wants to suck, she knows it’s something she’s supposed to be doing – but then she gets totally confused when it happens.
In case you’re wondering, the cloth diapering is still going well. It’s not quite as terrifying as I initially thought it might be, although it can be pretty messy when there are messes. But that is true of disposables as well. And I did the math – it’s definitely a money saver, despite the initial investment. This is especially true because kids with Down Syndrome often have potty training delays, which means Leah may be in diapers longer than a typical child would – and that delay shouldn’t result in extra diapering expenses as it would if we were using disposables. Plus… the landfills are filling up quickly enough already! We’ve had so little control over things and it’s nice to be able to make this decision and stick with it.
In other news, we’ve decided that Leah isn’t going to ask for a pony. She’s going to say, “Mommies, I need a pony as a reasonable accommodation under the Americans with Disabilities Act” – because she’s my daughter. And then she’s going to make the Pony Face.
So. I offer you this video to make up for the delay in updating.
And now, pictures!