Friday, April 18, 2014


Today we drove ALMOST to Portland for Judah's eye appointment at OHSU. We landed in a traffic jam, so I called them to tell them we would be late. We are now rescheduled to MAY 30TH.

Mom had Sebastian & Willow. They got haircuts from Michelle & Subway for lunch. Willow brushed the edge of her hair with the palm of her hand and said, "Gotta haircut Mommy! Got haircut Mommy!" She calls Scott by his name now, regularly. He attempted to intervene, correcting her with "Daddy" when this first began calling him "Scott". It seems he has given up. But he still fights to smash the "baby butt" and "chicken baby butt" coming out of Sebastian & Willow's mouth between giggles.

I got to go home & spend lots of fun one-on-one time with Judah after our adventure to ALMOST Portland. Unfortunately he was constipated a lot today, in pain quite frequently. Tonight we did an enema.. a big, hard poop was born not too long after. It feels likely that we just jogged by the route to horrible pain he was traveling not long ago. We didn't stop to say hello. The enema was a disaster at first - an explosion of sorts.. my eye was burning.. I won't go into any specifics but it was probably one of the yuckiest things that has ever happened to me/on me. Probably one of the funniest as well.

Playdate at a friend's house. Her son is Judah's age, with Judah's diagnosis & very similar challenges to Judah. Her daughter is Willow's age - those girls got along very sweetly, taking turns on the horse & the trampoline, & tossing balls back & forth. Delicious food was made. My head was filled with ideas, inspiration and information - all very much needed!! Thank you! She has worked unbelievably hard to keep her kids happy & healthy.. and doesn't seem intimidated by all of the complexities, the scary proceedings & the suffocating amount of information & ideas to sort through! She is determined to find the path for her children that fits, like a glove.

Played Frisbee with Willow & Bash in the yard. Judah inside constipated - Daddy helping. Willow really loves throwing a Frisbee, ball, football, etc. back & forth with someone. She thinks it is hysterical. "Ready? Ready Mommy?", big smile & throw!!! Never landing anywhere near me. :) Sebastian rode his plasma car, accelerating through & around obstacles, never once hitting the car or me & Willow.. which is all I really care about anymore at this point. :) He's also riding his Spiderman bike, with no chain.

Willow is changing so much!! The past two days I have seen tremendous change in her, with each day. Today she looked even bigger & is suddenly talking in sentences, figuring out creative ways to say & do things, etc. She has such a flowing, open, funny personality! At this spot right now I can also see clearly all of the little phrases, words & actions that she has secretly picked up from us. She walked into the living room when Gramma was here, waving her arms high in the air singing, "Ahhhhhhh.. woooaah woooahh.." then quietly wandered on.

We contacted lab about Judah's sample that we are supposed to get since he was constipated today. They said Miralax could not be given to get an accurate lab and he could not poop in a diaper because diaper = contamination. My friend said that her son went through this as well. She just let him run around naked.. it took 2 days of this before they finally caught a poop.

Emailed Dr. Green to see what we could do about the lab situation.

Judah had 1 tablespoon (one dose) of the doctor prescribed L-carnitine. He had 1 dose of Docusate Sodium (missed one), 2000 i.u. vitamin d, three tablets 125 mg folinic acid with b-12, no time for fish oil and no probiotic or nose drops (waiting to do lab). He had 2 doses of Miralax, some Benefiber and some organic fiber that my friend shared with us. He took the sleep supplement, 5 - HTP (100 milligrams) - he took two. He also took 1 Bethanechol.


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