Alex and Maddy

Alex and Maddy

Sunday, October 16, 2011

The Surprise of a Lifetime!

Where does the time go? I always know it is time to update when one of my good friends from college starts emailing me! (Love you, Li) The last few weeks have been very "normal" and busy. We have been doing school, cub scouts, playgroup, six flags. I love times like this when the medical can take a back seat to the kid stuff we love doing.

Medically, Alex is doing great!I see so much to be hopeful about. I really feel like we are starting to see the effects of the EPI-743. Alex is able to do things right now that he has NEVER been able to do. He rode his bike around the block two times in the past week. In the past he had never made it farther then the length of three houses. He was able to walk on the treadmill for seven minutes and then five minutes last week at therapy. His previous best was five minutes. It is so encouraging to see these little bursts of energy. Bug is still taking his long naps, but I am so happy to see the spark back in him during his awake time! We continue to do TPN and Lipids (IV nutrition) at night. While I would never choose this because I know all to well the possible ramifications I know that it too is contibuting to Alex's newfound energy. He has gained almost 4 pounds since starting TPN in the beginning of September. He is getting a ton of fluids right now so that helps him feel better too. Alex has been a true champ with his new infusions. What are two more needles a week, right? I continue to be amazed at the spirit and strength that is packed in this tiny little body. He just takes it all in stride with a smile on his face and hugs for everyone he sees. The only tiny little blip medically is that Alex has been anemic for over a month now. He is sitting right above his transfusion point. We do not want to transfuse, but he has not been able to retic and bring his counts up even with his procrit. At this point he has not been very symptomatic so we just watch! Don't you love a medical update from me with almost all good news!!!!!

Now for the surprise..... We are leaving in one week for Alex's make a wish trip! I was asked several weeks ago to speak at a make a wish fundraiser. Alex will be the "star"! (they really are called ambassadors, but don't tell him!) After I speak they will bring Alex up on stage and ask him some questions and then surprise him with the news that his wish has been granted and we are leaving! Alex has absolutely no idea. He knows we are going to the breakfast, but that is it. He doesn't know that a lim will pick us up that morning! He doesn't know that some of our closest friends will be there! He doesn't know that Theresa and I are madly packing and making lists while he sleeps! I absolutely cannot wait to see the look on his face when he finds out.

To add to the magic Mimi will be here! Mimi had planned a trip to see her boy. She arrives Wednesday. She will be here which makes it all the more perfect. We only wish all of our friends and family could come! Don't worry there will be TONS of pictures and video.

We are going to squeeze in lots of fun while Mimi is here...the pumpkin patch, an air show, six flags, the zoo. Alex and Bruce will even be spending a night at the zoo with Cub Scouts so Mom and I will get some girl time!

So overall things are going really well around here. Please pray for Buggy to stay healthy and feeling good over the next few weeks. I want this trip to be the magical experience he so deserves. Please pray for me as I speak on the 24th. It is so hard to talk about my incredible boy without getting emotional. Please pray for safe traveels for my mom and for us. Thank you for continuing to support as through our incredible journey.


  1. So excited for him! Please take lots of pics or videos b/c his reaction is going to be priceless!

  2. This is such wonderful news and what an awesome way to tell him!!