We started baby food today! So, what do you say to get a baby to open her mouth? Since we are starting with mashed avacado, Ahhh-va-cahh-do, naturally! Natalie thought it was pretty funny so not only did she do a fantastic job keeping the food in, she got a chuckle out my sound effects as well! They told us early on that she would probably be difficult to spoon feed because of the typical T21 (my new name for Down’s- sounds more positive to me) low muscle tone and strong tongue thrust reflex. Don’t know if it’ll continue but today she did great. Hardly thrust her tongue out at all and seemed genuinely pleased to be eating from a spoon. I had thought of waiting until next week at the earliest since she’ll be 6 months corrected then but she’s started waking up earlier and earlier. At first, I was thinking it was the T21 sleep problems starting. Last week, the naturopathic doctor told me that the oxidative stress that the extra chromosome causes can disrupt sleep. Today, though, I remembered that waking up early can be a sign of readiness for table food so I jumped in with it. Hopefully, it will help.
It’s been awhile since I’ve written. I had spent a lot of the early summer months preparing questions for our 6 month geneticist visit. The visit was extremely disappointing and I’ve been pretty depressed about it for the last few weeks. As David says, it comes in waves. Well, I’ve been in a flood here for awhile, I think. The geneticist doesn’t really support any nutritional intervention because there are not enough studies on it. The genetic counselor was basically offended that I even suggest such a thing. So, after that I scheduled an appointment with a naturopathic doctor to see if he could help. That one wasn’t so encouraging either. He didn’t want to do anything until she is a year or older. I thought that since the first year of brain development is so important sooner would be better. Of course, the naturopathic doctor is not on our insurance so I’m just sick that I wasted money that I could have used on something else that would of actually help her. Urggh!
Some good news. The flax seed oil is working! 
Natalie has been able to poop about every other day for a few weeks now. Once I use up the pills I’m taking for her, I think I’ll go ahead and buy the oil to put straight into her milk. We see her atresia surgeon this week and, I’m praying with her improvement in being able to go, that Hirschsprung’s is now out of the picture. I also posted on facebook that she seems to have passed her hearing test from last week. The ear that failed before passed completely. They still want us to keep watching her, though, and possibly do tests in the sound booth when she’s old enough. Unfortunately, if she can hear, she will lose her speech therapist. Our current speech therapist comes with the Early Intervention for the deaf. She said she will transition to another therapist for us. The closest speech therapist on our insurance is in Durham so not sure what we are going to do yet.
Working on sitting up with her physical therapist. She’s getting stronger every day. Lately, the improvements have been slower but she’s not regressed any. at least. She’s sitting beside me now as I type bouncing her infant seat so hard, I think she’s trying to fly! Also, she’s saying ma-ma a lot. Julia thinks it’s because Natalie loves me but I’m thinking it sounds more like “why don’t you come pick me up?".
Amy
