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May 02, 2010

May 2nd - Q&A

I decided to feature a Q&A this week as I gathered up comments and questions from emails, phone calls, and in person conversations. I figured if one person has a question, it may be on someone else's mind too.

Q. Is Michael driving?
A. No.

Q. Is Michael able to take any food by mouth yet?
A. No, all feedings are through the PEG tube.

Q. When will the PEG tube come out?
A. No date has been set. It will be removed once Michael can take in sufficient calories by mouth to sustain his health.

Q. Is Michael catching up on his sleep?
A. No. Michael still does not sleep through the night, is very fatigued, and is a spontaneous napper.

Q. I wanted to invite Michael to an event this week, is he up for that?
A. No.

Q. Is Michael on line? Is he answering emails?
A. Michael is on line as he is participating in an on-line class at Capella University in order to graduate. He also checks out baseball and other sports on line, but generally is not returning emails at this time.

Q. Is Michael up for visits?
A. Depends on the day, please check in with me if you would like to visit.

Q. Will Michael take my phone call?
A. Probably not yet.

Q. How is Michael's speech?
A. Michael's voice continues to get stronger and he no longer talks in whispers, but mucus continues to interrupt conversations.

Q. Is Michael in constant pain?
A. No. Michael has episodic pain events, most of which do not last very long, but can be very intense.

Q. How is Michael's mood?
A. Michael wants this to be over so badly. He is depressed, frustrated, tired, weepy, and emotional, but has moments where a ray of hope comes through and he smiles.

Q. Is Michael bed bound or can he get up and walk?
A. Michael is not confined to bed. He can get up and walk around and does so several times a day.

Q. Does Michael go outside for walks?
A. Michael needs to be very careful with sun exposure due to the radiation, so at this time chooses to do his walking indoors.

Q. Has Michael gained any weight?
A. Yes!!! He has gained back about 3 pounds and is now at 160 pounds.

Q. What does the formula taste like?
A. Michael administers the formula through his feeding tube, so it has no taste that he can register unless he vomits and the he says it tastes like sour milk.

Q. What can I do to help?
A. Keep up the good thoughts and vibes. It does help. I will, and do reach out when I need something.

Q. What is it like without Grandma there?
A. We all miss her very much. The kids continue to sleep in "Grandma's room". But we are glad that she arrived home safely and was greeted with open arms by her other grandchildren (get well soon Katie).

Q. How are the kids coping with Michael's illness?
A. In general they are coping well. We talk with them often, get them to talk about how they feel, and make sure they know they are loved and supported. Finghín will sometimes offer Michael something, like a glass of water, as a way to help. It's very sweet. Hannah is a bit reserved but hugs Michael daily.

Q. What are you doing to take care of yourself?
A. Nothing! Maybe in September :)

Q. Can Michael help in any way around the house?
A. Yes, he can and he does. Today he did some laundry, folded clothes, tidied up the kitchen... I am so grateful!

Q. When does Michael graduate?
A. May 29th.

Q. What do you have on the needles at the moment?
A. Knitting a very cute girl's dress.

Q. Are you still working from home?
A. Yes, with occasional trips to the offices in Santa Rosa and Santa Clara. I am so grateful to everyone at Agilent for their amazingly wonderful understanding and support. My home office is all set up. I am pretty much on the phone all day in meetings (hence the busy signal if you try to call), and am keeping up with all of my work commitments.

Q. What else?
A. Happy Birthday to dear Tyler. We love you much. Gary, thanks for making the trip up to see us. We love the BIG t-shirts and it was fantastic to see you on Saturday. Michael is demanding a rematch!

Posted by Claire at May 2, 2010 08:51 PM