Its been a very long road to me. I felt such disappointment at M's last cardiology visit. Her echo and her ECG still show lots of heart damage - we don't know if it will be permanent or not. The cardiologist was unspecific about whether or not there SHOULD have been improvement, instead saying only that he was not terribly concerned about the lack of improvement, and that he didn't expect any at this visit. I wonder though, if he expects improvement at future visits?
We've cut M's feeds from 170 X 5 to just 140 x 5. She's missing a few calories but its better than the daily vomits she's been giving us. Nothing is better than a lapful of warm vanilla vomit first thing in the morning, or as a nightcap on the way to bed. Her weight gain has been stellar and so I am not concerned. The cardiologist did write us a referral to GI because of her non eating. I am also going to put a call into the feeding team.. In fact, I am going to do that as soon as I'm done blogging!
HOpefully later today, I will gt off my butt and post new pictures.
Robby is still the super amazing boy he always is. He's a handful - thats for sure - but he's also very sweet and kind the majority of the time. Mila delights in playing with him or stealing his toys. Most of the time, he takes them back. Right now, they are playing together while we wait for the timer.
The timer is my secret weapon for getting through hard days. There is a multitude of cleaning that has to be done, and I am trying - desperately - to get everyone eating healthier. Even if its not technically healthier, at least homecooked will suffice. So basically, I'm attempting to be betty crocker and have homebaked muffins for breakfast for daddy, waffles and fruit / pancakes and fruit for robby... and I'm trying to stick with just a powerbar for breakfast for me... That is sooo much better than a whole stack of pancakes covered in butter and syrup, no?
Starting today, I am going to give myself a sticker for everytime I eat salad for lunch. Salad is healthy, I cover it in veggies and sliced meat / tuna... I will get back on track.
If I get 10 stickers by the end of the month, I am going to treat myself to something nice! Again!