Friday, July 5, 2013

Now an Outpatient

Happy Independence Day!

Many of you saw the facebook post with the fireworks load... well, we are happy to report that all eyes were glued to the sky last night and ta-da! No injuries, fires or close calls (well... maybe just one but it worked out fine). Anyway, Xander had the best 4th of July celebration EVER! We also enjoyed a short ride on the river (Argo to Gallup) including a flip over with the dog. That was fun and everyone made it back into the boat (with all items accounted for) albeit sopping wet. Hobbes doesn't quite have 'the rapids' figured out yet!

Day +66

Xander is in full blown outpatient care at this time. We are in clinic two times per week with doctor consultations.  We are there an additional day per week for ECP treatments. Now that the infusion clinic is open on Saturday, we have also been on the weekend too. Thankfully, not this weekend! Xander's condition changes daily. From everything he eats and drinks, there are good and bad outcomes. We are never exactly sure how he will feel from meal to meal. Keeping a firm schedule for eating and medications has been very important and is key to overall success. He is getting better in very small baby steps, and they seem to be in a forward direction.

Through Day +100 Xan gets a room in the transfusion clinic

Snack before blood draw (he gets blood work 3 times per week)
He also gets a lot of compliments on his hat!

He is down to 25mg prednisone this week. If no major changes this weekend, he will go down to 20mg on Monday. Apparently we are "lucky"he is still responding to the steroids, as some children do not respond when having been on them for a long time.

We have daily regimens of creams, medications, IV bag at night and HBOT daily. This is a full schedule of daily care. Xander is very tired at this time, he takes naps throughout the day. He is getting some exercise, but I'd like to see the amount increase. Right now, he is really tired, so getting out, even for a walk around the block is a lot. We started playing catch in the house to get moving around more, nice for when it is raining too.

A huge thank you to all that have helped us recently. My mind is full and I have made some mistakes. Thank you to those of you that put up with it and keep us moving in the right direction! Thank you to our clients who are always understanding!

I have been wanting to donate blood for months now. I finally had the opportunity at the recent blood drive at the UofM hospital. Unfortunately, my experience was BAD, now I have a huge hematoma on my arm, the size around of a baseball and the color of purple marker. I have now been told my multiple RN's that the ONLY place to give blood is at the Red Cross on Packard. So, believe me, when the next one comes around, I'll be going there. Ouch!

There is so much time wasted at the hospital waiting. This time, we sought out a nice quiet area outside in the shade while we waited for ECP to start. Molly had no trouble making something out of nothing. Here is her fairy house and fire pit outside of the Taubman building.

As I mentioned, Xander has wanted to sleep a lot. Setting up the hammock with pillow and blanket was a perfect choice in the nice weather recently.

That's all for now. Please keep praying for Xander's full recovery. We have a long way to go.

Peace and Love to all of Xander's followers,



  1. Prayers continue to Xander's complete recovery... as well as for his family and friends who are supporting his journey!

  2. Good to see, both, Xan and Molly, on this recent blog. We do get time with them, occasionally, on the iPhone & iPad. So, that helps.

    Molly's "real" birthday will be on July 14 at which time she'll be a whooping seven years old.

    If all goes well, we'll be up to see the family in late September during our East Coast/Mid-West pilgrimage (and 50th high school reunion). We can't wait!!!! :-)

  3. Great to see pictures of you two lovely children! I must say, I was VERY worried when I saw all of those fireworks and I am very relieved that you all survived what must have been some serious pyrotechnics! I'm happy your 4th was the best ever!
    Xander, it sounds like your body needs a lot of rest right now and rightfully so. It sounds like what you are doing with lots of good rest mixed with bits of movement is the way to go. Over time your energy will increase, you are doing great! You are Amazing!

    Lots of love to you all,

    Margo and Family