School is out + our CSA farm share began a few weeks ago. This week's loot included blueberries, kale, scallions, scapes, broccoli, lettuce, cabbage, cucumbers, zucchini and squash. I've been using the Vitamix blender to get LJ's zucchini and squash all liquified so I can feed it to him. Mikey likes it! I made some vinaigrette (same recipe as last year) for salads and marinades using the scapes. I've also made some pumpkin bread which LJ insists be dipped in applesauce but otherwise is able to eat it no problem. I plan to make some blueberry muffins tomorrow! I can't tell you what a tremendous emotion rushes over me when I realize LJ can experience and enjoy these summer nuances. Summer is fun now that he can have seasonal favorites like a popsicle, watermelon or lemonade. Noodles loves to eat. That is a beautiful thing.
I'm loving every minute of it. And guess what? News flash: LJ has learned to drink from a cup- its only about 1/2 ounce at each meal but it's a start. He is only receiving 180 ml of water now via gtube to insure that he isn't dehydrated. That's it, people, 180 ml. That's down from 480 ml of water. We've been most successful with water at this point, but we're slowly sneaking in some V8 Splash Fusion for extra kicks and giggles:) It's more challenging on the communication-front. He grunts and makes some noise (and will not give up) until we realize that he wants a drink.
We play a fantastic game of charades at each meal time just to figure out what LJ prefers. When he likes to eat, he automatically asks for more graham crackers and more applesauce...or cookies depending on his mood. Drinks are so brand new that we are still trying to figure out which modified sign works best. The sign for juice is fingers tapping the mouth gently or the letter "j" downward in the shape of a j. LJ can sign "eat" no problem which is one hand placing the food in his mouth. This is very, very close to the sign for water. The sign for water is wiggling open fingers up and out from your mouth. I've been trying to get LJ to use the sign for drink which is a simple. natural gesture for drink. His dystonia is too severe though, and he isn't able to complete these gestures even if it is trying with his functional, left hand and arm.
Hopefully he will be feeding & drinking 100% independently of his tube. I'm in awe.
We have our weigh-in and check up at the GI office manana. I'm a little nervous at the possible outcomes...but I am trying to remember something Jeni told me. LJ is calling the shots- and it's important to remember that whatever weight he might be compared to...it is only the typical weight for his age and height. LJ is far from typical; and he can't be pegged to a growth chart because it wasn't easy for him to jump over the tube weaning hurdle. We can't expect him to be his tube-fed weight; that just wasn't his norm...it was a consequence of being tube-fed whatever that allotted protocol prescribed. Oh, I really want things to go well so we can take out this button. Think happy thoughts for us.
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