Day 39 – Grayson’s Condition

Dear family and friends

Today was mostly a good day, with a minor crisis.

The crisis was that during the night, and probably when I was wrestling with him to keep him from falling out of bed, he pulled his feeding tube out. The crisis here is that Grayson is already down 40 pounds since arriving at the emergency room on November 16^th. While some of that is good, 40 pounds in less than 6 weeks is too much, and now we had no way to get nourishment into him. Fortunately, an operating room opened up late today, allowing the doctors to reinsert the feeding tube. After an 18 hour interruption, he is being fed again.

Since Regina has been doing most of the daytime supervision, I have not been able to see Grayson interact with the PT staffs of the facilities that we have been in. Today I was there when Speech Therapy, Recreational Therapy, Occupational Therapy and Physical Therapy arrived to work with him. What a hoot! When physical therapy took him to the gym to assess him and get a baseline, the first thing they did was to have him pick up a cone (shaped like a small megaphone) and hand it to me. Using his shaky hand, Grayson picked up the first cone and slowly handed it to me. When he was asked to pick up another and also hand it to me, he picked it up then put it to his mouth like one of the USC Yell Leaders – very funny! His PT announced that we have a comedian in the unit. Next they wanted to see how well he could stand and walk. They wheeled him over to the parallel bars, put a safety strap on him, and then asked him to stand up – which he did. When he was asked to take a step, he put one foot in front of the other and walked the length of the apparatus. I about fell over, as did the PT dude. On request, he turned around and went back the other way. I was sure impressed!

His vocabulary is now up to 3 words. I mentioned that he learned, "Hi" the other day. Yesterday he started using "Mom". Today was a bit more painful, when he said to Regina, "water". He about broke my heart on Monday when he saw me take a swig out of my water bottle, opened his mouth and pointed to it with a pained expression. I have been very careful to let all of the care givers know not to eat or drink around him, because he is still not cleared to take food or liquid by mouth. Looking for the good news – he is starting to speak!

Even at 4:00 AM, it is still Christmas Eve, since I haven't gone to bed yet! Grayson is showing remarkable progress. It has been an awesome week! The Great Physician is working his will, and is blessing Grayson with greater quality of life every day. This year, Christmas has taken on new meaning for us. Gifts of "stuff" are just not that important this year. Gifts of true love, friendship, caring and life have all taken center stage, and have overwhelmed us. May the blessings and wonder of Christmas, continue to bless you and your family until next Advent!

Pax!

Brant and Regina