- Anna gained 4 grams a day but should be gaining 8 grams a day. She had gained more but lost a lot of it when she was sick about 2 weeks ago.
- She is still eating better than before the dilation but not near as good as she was right after. She is not tolerating near the tube feeds that she was tolerating right after the procedure either. The dilation is fading.
- It was supposed to last at least 6 months and we are only sitting at 6 weeks out.. Dr. Ogunmola will not balloon kids more than 2 times, and especially not if it isn't lasting long enough.
- Anna likely needs the pyloroplasty without fundoplication. Dr. Ogunmola says this is a hard sell to a surgeon. They really do not like to do one without the other.
- We are to double the erythromycin and if tolerated triple it to push the pro-kinetics as far as we can.
- If the erythromycin is not enough he will balloon her again and expect the same results as the first time- that is a rapid resolution of symptoms and huge increase in appetite and then a fairly quick return back to the previous problems.
- Only after that clinical proof X 2 that the motility really is the cause of all the problems will a surgeon buy it and fix the problem.
We left our house at 11 am and did not get home until about 6 pm. The kids were fine on the way there but proved to me 100% on the way home that they are not travelers. Anna cried all of the way from Denton to home. I never figured out why but I did figure out how annoying it is to drive 45 miles with a crying 2 year old who cannot tell you why she is crying. I know most kids cry a lot but Anna does not so when she does it really gets to me. So I did what any responsible and loving parent would do- I turned the radio up really loud and ignored her. It didn't make her stop crying but it sure did make Carly and I tolerate the ride better.
We had been letting the kids stay up a little later at night since it is summer but those days are over. It was nice that they slept a tad bit later but it is not enough to trade for the peaceful quiet bliss that comes every night after they are sound asleep. Kenneth and I both decided it is worth getting up earlier to have some time to ourselves at night. I think I hear that quiet time calling me now...
Hmmm. . . sounds like you're going to meet your deductible this year! Fun, right? Sounds like you've gotta plan which is a good place to be.
ReplyDeletejust wanted to echo in the quiet time. when I tell some parents that my kids bedtime is about 6:30 they are all shoked. but I need my down time and I'm pretty sure they do to. it gives me alone time and time to just be with Louie :)
ReplyDeletealso, I do the same thing when babies are crying in the car. LOL