Teresa Jane's Blog: Cystagon and a Wedding at 3am

I have been remiss in letting our followers know how Patrick is doing on the trial medication! I am pleased to say he is tolerating it very well, and aside from the fact that he has to take 7 rather big pills for each dose, and the fact that he has to take them with orange juice (he's not a fan); it's all fine! He is still waking in the night with a wet bed and a wet pull up-but I've heard with time it may become a bit less of a problem. It's nice that he's waking on his own terms, instead of us shaking him to wake for medicine. He still throws up, but it's not a sick tummy heart wrenching kind of vomiting (maybe we've become too used to it?). He simply coughs, gags a bit, throws up and then goes about his day. I hear that may go away with time, too.

We have had a nice respite from days at the clinic, celebrating Easter with family in Idaho and enjoying a quiet Spring Break at home in Sacramento. We will have a couple of families over to barbecue tonight, the kids and I have had fun working in the yard and cooking in preparation.

A story. Jenna and Patrick are at the funny age when they become aware of romance and act silly with their friends saying "I'm so in love with (insert anything) I want to MARRY it". They have not been to a wedding, and have just recently begun to understand that it would be very uncool if they one day married each other. Last week we had Patrick's favorite dinner, spinach and cheese ravioli; and while savoring the fare he said, "I love this spinach ravioli so much I want to MARRY it!". I tell this story for a reason.

While Patrick enjoys the full nights rest that comes with the time release medication, Jenna continues to take the "old drug" every 6 hours around the clock. Last night I visited her room at 3am and jostled her from her sleep and gave her Cystagon. She usually wakes MUCH easier than Patrick (Kevin says she's like a cockroach in the sunlight...all scattered and crazy when we wake her); but last night she was really sleepy. She was sopping wet from knees to neck as I scooped her up and gave her the meds; her head bobbing about while she fought me. I whispered "Jenna, right now there is a girl named Kate getting married and she is becoming a princess for real! Do you want to go watch the wedding on TV?". Her eyes flew open and she peeled off her wet pull up, and ran her naked self into the living room. We wrapped up on the couch and with great excitement and curiosity Jenna watched the first wedding of her life. She was riveted, and like the rest of the world marveled at Princess Kate and her dress, her veil, her hair, her tiara, her proud father and her Princely groom...all of it. We agreed that Kate is a very special Princess.

As Jenna walked back to her room to go back to bed she looked at me and said: "Wow, that Princess Kate is sure beautiful; I think Patrick is going to want to marry her instead of that spinach ravioli."

Last night it was a great blessing to give Jenna her meds at 3am. To share a Royal Wedding, live, with my six-year-old daughter was pretty special.

Love, T.