GI

Thursday we are going to the GI doctor in Austin. Three hours away.
I spent the day today printing up a summary of Mooky's last 17 months of misery. I also called the doctor in Kerrville whose nurse told me they couldn't fax Mooky's medical records to the GI because we hadn't signed a release! So, they faxed the release form to Kris at work, he signed it, and faxed it back. Then I called them to verify that they got it and asked them again to fax Mooky's medical records to the new doc. "Ok, no problem, please give us 2 weeks to get that done."
WHAT????????????????
I nicely explained that it needs to be done today or tomorrow and PLEASE do it. "Well, we're understaffed so I can't promise anything."
Talk about frustrating.

I feel such a heavy load of sadness right now for how difficult this is for Mooky. I guess typing it all up today really made it clear to me. I know that the Lord is in charge, and He has a wonderful plan for Mooky's life. And He can bring good from this. It's just hard for a parent to see their child suffer. It could be so much worse, and I hope it's not. I feel uneasy about what we may eventually find out through this new doctor... but there again, the Lord will get us through it.

I'm at a point where I am once again struggling with what to feed the boy... and struggling to keep his hunger at bay. He used to love to cook. Said he would be a professional chef one day. But, he hasn't done much cooking at all in the past year or so. Rare are the days when he feels good enough to spend that much time on his feet, and expend that much mental energy.

It's 7 PM right now and he is already in bed. That is very normal for him. If he feels nauseous in the night he will get up and sneak quietly into our room so as not to wake us up, and silently go in our bathroom and close the door. He will put a towel at the bottom of the door to cover up the crack of light that "might wake us up". Then, he will take a long shower until all the hot water is gone and hopefully his nausea will be gone too. Then, it's back to bed until 6 am or maybe 7 if he feels really bad.

The main thing to remember is that it could be worse!! And I am thankful it is not.