25

Hear ye, hear ye--Alex's MELD is 25. Up one point since October. We had a chat with our nutritionist, Cathy today, who reiterated Alex's need to control his blood sugar. He needs to maintain weight for transplant, which is hard when you are not producing proteins the right way. Also hard when you are not controlling the blood sugars and therefore having to convert muscle/fat to glucose to live. Then we saw the liver Dr's (usually 2, a resident and a fellow). We do the run through with the resident (never the same person, mind you) and then re-run with the fellow. I totally respect the need to teach the up and coming's of our medical profession, but...sometimes it is a bit annoying to tell and retell. Just saying... They also reiterated Alex's blood sugar issues. Sooooo--pray for his ability to control his blood sugar! It is really serious and we need your prayers. Miss E has been asking a lot of questions lately about Alex's health. Prior to this she never really did, but now she is asking a lot of questions: "Mommy, what is a liver? What does it do?" "Why does Daddy have to go to the Dr.? Will he have to get shots there?" These are just a few examples. I have taken a moderate-honest approach and tell her as much as I think she can handle. She seems to be doing ok, except that she was really nervous for Alex's appointments today. Maybe no one else could tell, but I could. She did well, was her crazy rambunctious self, and we all made it out alive. One of the highlights of the day was her assurance that Daddy 'still had big muscles' when he was being measured by the nutritionist. Also, today in the hallway we saw a young man who appeared to have had a brain injury relearning to walk. There were 4 people helping, I am guessing one was mom and the others were therapists. Erin was very curious and asked as they were walking by what they were doing. Recalling moments like that I had shared with patients in the past, I said 'His body was hurt and he is learning how to walk again, and that is VERY EXCITING'. I caught one of the people with smiling, and I really hope it was his mom. Those kind and positive words are essential when you are waging a battle like we are. You get so caught up in the moment with what is going on it's hard to remember that things can and will be better. I guess it is not seeing the forest for the trees kind of thing, but in this case it is due to survival and functioning at a minimal base level. I will say a prayer for that family tonight, and I hope you will do the same. In the liver clinic today, there were actually other people there, which was unusual. It was a almost surreal to see other yellow people walking around. In honesty, it was also depressing--they all seemed to looked at us in a weird way and no one wanted to talk to one another. They were older than us by quite a lot, and of course Ms. E was with us. I don't know if they felt really uncomfortable seeing how young we were, or what....but I did feel weird sitting there. I felt that there was a lot of hopelessness in the room, and that is the LAST thing we need hanging around. May the Peace and Light of Christ be within you and shine through you this Advent season.

Advent

Here we are, just past the Immaculate Conception, making the turn tomorrow to the second week of Advent. I love the Advent season, and the things like our Advent Wreath and calendar that draw our attention to the true meaning of Christmas, the joyous birth of our Lord. Especially with all the craziness of shopping, etc. and the consumer driven mentality that surrounds us, that refocus is essential. I had the great fortune of meeting up with an old (20+ years since last meeting) friend this weekend for coffee. She is also walking through a challenging time with her spouse and a health condition. It was a rare and amazing opportunity to speak with someone who truly knows your language (not quite Apostles at Pentacost, but perhaps along the same vein). It was a lovely two hours that passed much too quickly, and I hope we can soon do it again. Since Alex's MELD has gone up, we now go to the UWMC every 2 months instead of 3 months. We will journey south on Tuesday for the routine labs/how-are-you?-oh-yes-still-sick conversations, etc. I will write a follow-up posting to update everyone on the results. We finally our Christmas tree up, which was a two part affair of Mommy assembling tree (fake--easier--can be done by myself) and adding lights and then, the next day after Mass/crazed Fred Meyer shopping/napping (Mommy) we hung the ornaments and had no breaking and it was fun. Please consider the following: Alex is experiencing a great deal of swelling and pain. Please pray for this to subside as soon as possible. Pray for Alex's spirits, he is having a tough time lately emotionally. Pray for some extra graces for me, I will be seeing an ear/nose/and throat specialist for my allergies. I am currently on a dose-pack of Prednisone to kick my immune system down a notch due to some really intense allergy flaring that make me nearly incapacitated (no anaphalactic, but 7-14 days of symptoms after one exposure). SO, hopefully we can get that done soon and I won't have to fear the mold over here so much. Thanks and much love to all! May Advent Blessings abound for you and yours!!