Clinic visit

Wednesday was Ethan’s weekly Jimmy Fund Clinic visit. He passed with flying colors. His blood levels look fantastic! He’s officially off his IV fluid at night, as he’s drinking plenty (40-50 ounces) throughout the day. While he hasn’t put on any weight, he’s maintaining his 18.5 kg (40 lbs), which the docs are pleased with. To us, he looks like he’s filled out a little, but perhaps it’s just that we’re getting used to looking at his skinny body. The doctors are so pleased with his progress that they inform us they don’t need to see him for 3 WEEKS!

In addition, they tell us that at the appointment in 3 weeks it will be Day 98. Day 100 is the milestone at which they begin to wean Ethan off his cyclosporin (immunosupressant). He will be weaned over a 10 week period (10% less each week). If all goes well, this means that he will be off cyclosporin by the second week of February…WHICH means he only has three more months of restrictions from that time……WHICH means he COULD be off restrictions around the first week of MAY!!!!!

Mommy tries to contain excitement about all that “forecasting”/future stuff, knowing we still have to take things week by week (we’ve progressed from “day by day”), and Ethan and Mommy focus on the great news of our next Jimmy Fund Clinic appointment. Ethan is so thrilled he makes several phone calls on the way home, informing everyone he doesn’t have to go back for THREE WEEKS!

We head home, and a great day is made better, as we learn Grandma is coming this day – Wednesday! YEAH! Grandma Mary has spent several weeks with “Nana”, getting her through her hospital stay and recovery period at home. Nana is now doing well, back at her house, and Grandma’s “on the road again”. (You have to put the tune with that when you say it:).)

The weather is getting much cooler here for us, so we’re inside for the majority of the day, but try to go out at least once. We can’t have a real Christmas tree this year in the house, so we just ordered our artificial christmas tree. While I swore as a child I would never have an fake tree, it seems like such a small sacrifice for this one year. We get to be home on Christmas, together…

Thanksgiving is a couple weeks away. How did that happen? This is the first Thanksgiving we’ll celebrate at our home, as we always travel. While we’ll miss all our family, we’ll keep busy, and make it a festive time. We’ll put up our tree and start the Christmas season early. This is Ethan’s favorite time of year. I call him our “Holiday Boy”. He wants to celebrate every holiday to the fullest extent. How could he not? He was born on Christmas…