Friday, August 12, 2005

2nd Treatment



What a couple of days it has been!!! Mei-Rose had her 2nd treatment on Wednesday. She now weighs a little over 34 pounds. She has gained about 2 pounds since last week. She is getting more comfortable with the nursing staff but is irritated that we are still visiting the hospital.

Her mood and appetite have been the rough part for us. The prednisone makes her really, really, really hungry. She is also very grouchy and moody. It is like she turned into a teenager overnight. Thursdays and Fridays seem to be the worst days out of the week. Usually by Friday night or Saturday morning---- She's okay and we all wipe our brows and lick our wounds, pick up the pieces and move on. Thursdays and Fridays become a complete blur starting sometime in the early morning hours where Mei-Rose is screaming and crying because she is uncomfortable and experiencing jaw pain. After treating that side effect we then realize that her reason for crying has changed.....food!!!! So we get up,(or shall I say Kauokalani gets up!) while I try to get Mei-Rose to at least let our neighbors and landlord sleep for a while. The T.V. keeps us awake, long enough to watch her eat her snack and then we all go back to bed. Sometimes these midnight snacks can range from a simple piece of fruit, or crackers to 1/2 a sandwich or even some of Mom's stash of Strawberry ice cream. It is not unheard of for Mei-Rose to eat 2 yogurts in one sitting, along with other stuff. Actually the other day, Mei-Rose ate just as much as Kaenamoku.

We all have different times of waking up but the start time for our family is 5:00 am. At that time, we meet as a family for scripture reading and family prayer, then someone takes Ka`ili to seminary while the other kids are free to either go back to bed for a while or do their chores for the day.

Mei-Rose wakes up about 7:00 am. Breakfast must be ready for her or the crying begins. We do our best to be preventive in the planning but sometimes we just mess up so bad that it is catastrophic. We've only done this twice so far, but both times, she has been so unconsolable that simple things like pouring some milk for her is difficult. We are trying to keep Thursdays and Fridays clear of expectations and plans. Emotions, noise, anxiety and stress are all at their maximum levels on those two days. Ahhhhhhhh!!!!!!! (you do notice what day this is published on?)

Okay- so as promised here are some pictures of the procedure. Until there is more information or news- Aloha to all, mahalo for your concern and prayers.

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