We aren't home yet, but we have seen the light at the end of the tunnel, and it has given us hope. Amelia still complains some about us asking her to eat food, but tonight she had a piece of bread with 1 1/2 eggs worth of egg salad sandwich, 2 baby carrots (through some complaining about how hard they were to chew), and a brownie. She ate it all, as well as most of her breakfast, all of her lunch and all of her snack. Very good progress.
We had meetings today with the nutritionist, the family therapist, and the nurse. I'll give a brief summary of each.
The Nutritionist - We wanted to know if there were any restrictions as to what Amelia could eat, or what we should give and should not give her, and we were told no, she could have whatever she wanted. It really came down to us and our parenting, what would we allow her to have, etc... This is great news because it makes it a lot easier to feed her. Less making special meals for her, and more encouraging her to eat whatever we are eating.
The Family Therapist - The long and short of this was that Katherine still has a lot of image issues and frustration SHE is working with, and her not feeling good about herself affects all the rest of us. Mainly because Amelia pics up on the fact that Mommy isn't happy, and when Mommy isn't happy, Daddy isn't happy because he LOVES Mommy and wants her to be happy. Other than that, Amelia seems to be doing fine with this and excited about the prospect of getting the tube out and getting to go home.... Oh yeah, there is that bit too... So, on to...
The Nurse - Sherrill let us know that Amelia's weight was almost 68 lbs, a couple pounds over her target weight, which is perfect. We have taken her off the tube feeds at night (huge step, with a little trepidation, but a little excitement) and are encouraging her to eat all her meals instead. It is expected that there will be a little weight loss at this point (transitioning from the Boost to regular food), but she has a couple of pounds leeway. Also, Sherrill said that, from Amelia's food journals, there has been a good progression of her eating more and more, which is exactly what we want to see. If she continues to improve at this rate, they would feel okay with pulling the NG tube on Monday, and very possibly getting ready to discharge us sometime next week. This is if everything continues as well as it currently is.
We DO have some trepidition about this, just because there will only be two sets of vitals since Amelia has gone off the feeding tube (one tomorrow, and one on Monday), and Katherine is concerned that might not be enough. I think that the experts at Kartini have seen this enough that they know pretty much what to look for and what to be concerned with.
So, what could we use prayers for? Well, definitely for continued improvements on Amelia's part. So far, we have had to rely heavily on the reward proposition for eating dinner (eat this much of dinner and you can have dessert...) and that works okay for now, but what about when there is NO dessert... So, yeah, that she continues to improve and gets used to the idea of just eating again without us having to negotiate terms.
Also, we could use prayer for this weekend. My mother with be spending the weekend with Amelia while Katherine and I take the weekend to go home and attend a school auction. This will be Friday night, Saturday, and Sunday morning at home, in our own bed, with our dogs. But it will also be my mother and Amelia alone (well, as alone as you can be at Ronald McDonald House) for a few days. I am just hoping that Amelia eats well from Nama.
That is it for today. Things are looking up, we have a few sparkles of hope around the edges of things. We are rapidly looking forward to when we can have the tube pulled and Amelia can go back to being her abnormal self. Thanks all for the continued prayers and good thoughts.
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