They were both very complimentary and commented on how big Adam is getting and how good we are as parents. Of course I went to both visits with his day time nurses and I had my list of questions I needed to ask.
The pulmonologist changed Adam's meds. We are going to try to use just an inhaler and see how he does. Let's hope for the best because the inhaler seems to be easier to transport (no wires, plugs and car chargers) and seems to be about a minute to administer vs. about 10 minutes of keeping him stillish.
The GI basically was super impressed, but said that we have to be ready for an uphill climb to get rid of his mic-key button. He has made so many improvements in the last 3 months. He will now eat some food by mouth. Today he ate cottage cheese, yogurt, toast, a few cheerios, and some banana. He was offered (but refused to eat) watermelon, grapes, carrots, mashed potatoes, juice, ice cream, milk, french toast and pasta.
He really doesn't drink at all. That seems to be what is holding us back. We offer cups, bottles, straws. If it is sold in a store (and yes, we've even tried online special cups) we have bought it and tried it. We keep thinking that maybe if we find the right cup, he'll drink. I know, it's ridiculous to think that way.
So right now, we are doing well. We are about 50/50- tube feeds and mouth feeds. We need to get him to drink enough liquid (he requires about 1000 cc's a day of liquid and 11-1200 calories). So we are trying. The doctor was super nice, and said how we were Adam's best therapists and what we are doing is great. He can't even believe that we are getting him to eat anything by mouth let alone his grilled cheese devouring on Monday afternoon!
He also (drum roll) said his first real word. He is 25 months old and he said -"yes" . It sounded not quite like yes, but it was clear that it was his intent and that he moved his mouth to make the sound. Not just his hands to sign. It was very exciting and he kept on saying yes of course we said it a million times to him this afternoon and kept on asking him questions just to hear him say it.
It was wonderful. absolutely wonderful. yes.
"Today he ate cottage cheese, yogurt, toast, a few cheerios, and some banana. He was offered (but refused to eat) watermelon, grapes, carrots, mashed potatoes, juice, ice cream, milk, french toast and pasta." Wow! You have all that in your kitchen? That's quite a buffet!
ReplyDeleteThe dr is right...you are great parents and should be so proud of what you have accomplished as a family! YES!
Thanks Tracy- love reading about your life and I love how technology can shrink the geographic gap between old friends! Sometimes we are hard on ourselves out here, thanks for the pickme ups. xo
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