October 2016

How is it October? I wanted to get another update in before things change. <fingers crossed> A year ago I was blending 1000 calories into 36 ounces of food and stuffing it all into Keller's little belly in a 24 hour period.  Now, he gets only 4-5 ounces a day, his appetite has picked up, he brings me food he wants to eat, he tries more new things than our four year old, and even his terribly bad "cheeking" of food is better. He was so bad about keeping the skins of grapes, corn, peas, dried cranberries anything that is a mechanical soft food that requires a lot of work, in his cheek for hours at a time. I gag just thinking about having a grape skin in my mouth for 4 hours but I watched him do it.  He still has that talent but he uses it less often.

Keller's speech therapist that we saw last winter was helpful for him but was great for me! She was just the kick in the pants I needed to get Keller eating with his mouth.  Before we saw her I was giving Keller 90-95% of his food into his g-tube.  She told me that he wouldn't eat or be hungry if his stomach was full all the time.  She told me to try cutting his blended food in half. I was so scared to give up that control, for 18 months I had been solely in control of his intake and the name of the game was "Calories In." But it made sense, so we cut it in half and his appetite picked up, it wasn't great but he was learning cause and effect of eating.  He did lose some weight which made me panic, of course, but we kept at it. And now, here we are! In two weeks Keller goes back to his GI specialist and I am going to ask her if we can start a three month trial of nothing by tube. Hopefully, she will be game to try it. If she is then maybe, possibly, hopefully we could be tube free and healed in the next 6 months.  (Whaat??)

As far as his speech, well that is picking up too.  He is babbling all the time and learning new words every day. I wonder at times if more speech therapy will be needed but no need to fret about that now. A lot of his words start with a "d" or a "y." Cross is a "doss", of course birthday-well that starts with a d, happy "Dirday." But a diaper, well that is a "Bi-per" of course. And rocket is a "yotyet." I don't know much about children's speech impediments but "yotyet" seems fairly uncommon to me. :) 

Anyway, he is just thriving! He's a busy boy that is not hindered by his past surgeries or current medical oddities.  He climbs, jumps, he runs and has no fear (ugh).  He loves trains, dogs, tractors, cars, drums, being loud, chasing his sister and whispering "I wuv ooo" at just the right times.

Norah is doing great, also. She loves home schooling with Classical Conversations and we are blown away by how much she is actually retaining.  She has a huge imagination, always has a "friend" over or a new pretend pet! She wants a "really really real pet."  She loves babies and baby animals. If you were to ask her today, what she wants to be when she grows up its a police officer.  She also is on a swinging pendulum of being uber friendly and painfully shy. I am in total denial that she will be 5 in two months. 

Things are going great here at the Davis house! We will keep you posted on the feeding tube developments.