4-16-2014 12th Infusion, Soccer Season & other updates

Sarah had her 12th infusion tonight, and it went really well.  I feel like we finally have all of the pieces of this dialed in. This infusion took about an hour and a half, and the swelling was relatively minimal.  She did not even have any bleeding afterwards when I took the needles out.  She is feeling really good so far.

During the infusion

 

 

Immediately afterwards

Sarah has played three of her eight soccer games so far this season.  She has still been feeling a bit icky ~ runny nose and cough, but no fever and nothing too major in the big scheme of things for her.  In the first two games, she played goalie for half of each game.  It was so fun to watch her because you can tell she has really been working with Zach.  Even in 2nd grade, she is really aggressive in goal.  She likes playing on the field as well, and had several runs down the field last night, and a few shots on the goal.  Here are some pictures from those games.

This is on the field

In goal and one of my favorites...you can see how fearless she is

More in goal

After the first game

And, this month is National Primary Immunodeficiency Month.   Often in med school, doctors are told "when you hear hoofbeats, think horses and not zebras." Well, in patients with PI, you have to think zebra. They cannot be treated in the same way as everyone else, and some things that are no big deal for most people, are a huge deal for zebras. They are unique and rare. They are often fighting a fight you can't see from the outside. You may think "they look fine. They don't look sick." That is because this is their "normal." 3 of my kiddos are zebras, so when I hear hoofbeats, I tend to think "zebra"...even here in Kansas. (By the way, we got a new set of bloodwork done on both Zach and Anna and are awaiting results to see if their extra pneumovax shots have helped them any.  We should have that next week.)