7:00p Ash gets a bedtime snack. 7:30 Ash is complaining she doesn't want to go to bed, because she HATES getting up in the morning, so if she stays up all night, then she won't have to get up in the morning (rational thinking).
Every 10 minutes since 5pm Macy is asking to eat, supper, snacks, candy. Even while she is eating she is asking for something different. (something she does when she's tired)
FOOD FOOD FOOD FOOD FOOD!!! GRRRRRRRRRR! You have to understand this whole food/feeding thing didn't happen to a health nut who eats 3 meals a day, and incorporates all her fruits and veggies. This happened to me, who, if I had my way, would survive off coffee and candy. But, I know this happened for a reason. Woman cannot live off coffee and candy alone (but I'd like to try). I must change my ways.
In all seriousness, Brooke ate a partial supper in an hour. That is great!!! She is doing well! I got a call from the Intensive feeding therapy last week. They said her admission date is December 17. They were planning to call and verify with insurance. I said, "yeah about that?!?!" So the twins and I trudge to the combine to speak to Steve in his office. We came to the same conclusion. 1 year ago, when Brooke was evaluated for this feeding clinic, she was eating NOTHING and very angry about it. Now she is making progress. She has a pretty wide range of food she will eat. Sometimes it takes more coaching than others. So we have to go talk to the feeding therapy guru on October 23.
I also talked to our outpatient feeding therapist that we see weekly. She agreed to wait on the intensive clinic. She said, if by summer we have made no progress or are going backwards we can discuss it then, but Brooke is making so much progress now. Let's keep doing what works!
We are also hopeful that Brooke will get off her last medication (yes I said last) the end of October. I have weaned her off all her meds, with the exception of 1 (which, I must confess I did take her off, but then felt guilty and emailed the MD to tell him. My actions were strongly frowned upon and she's back on the med. Can't blame me for trying :) When she was off all meds she ate well. She is still tube fed, because at the rate she is growing on the growth hormone, she can't keep up with the caloric need. But we are making progress.
FALL FUN, PICKING GRANDPA'S PUMPKINS
I have been reading a book on Grace. It's been fitting. I must be honest, I didn't think I would get so much out of it. God's grace is constant and aggressive. It comes over us wave after wave. It protects us. It surrounds us. It loves us. We just need God's Grace.
Matthew 11:28 Come to Me, all who are weary and heavy-laden, and I will give you rest.
Because of His constant Grace and love I want to get up every morning and do this again. You never know what wonderful surprises the day has to offer.
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