A Weekend of Fun

Bedtime last night was not exactly the norm...Two weeks ago while we should have been on our first cub scout camping trip, Alex was battling temps over 105 and feeling terrible. We promised him when he was feeling better we would have our own campout. So yesterday we set up our tent, dragged out our bedding, told ghost stories and camped in the back yard. Hershey and hayley weren't quite sure what to make of the giant thing taking up their space. Although Hersh thought it was fun to try and kiss us through the window! It was another fun experience we are so thankful Buggy is able to experience.

Today was truly special. Something we have talked about for quite a while. Three years ago when Alex was diagnosed with Mitochondrial disease we learned that he was eligible for Make A Wish. Being granted a wish is truly bittersweet. While the idea of a wish is incredible, the reality is that you are not granted a wish unless you have a life threatening disease. That is a hard pill for any parent to swallow. For a long time, Bruce did not want to do a wish, feeling like it meant we were admitting death was in Alex's near future. He has realized over the ensuing years that the reality of this disease is that we don't know what the future holds and letting Alex accept a wsh doesn't change that. I was adamant that I wanted Alex to be old enough to enjoy and appreciate the experience. And so with some (okay, a lot) persuasion from my friends we contacted Make A Wish at the end of the summer. We were supposed to meet with them in late September, but once again our plans were derailed by our hospital admission. So Today was the day to meet Buggy'd wish granters! Make A Wish of North Texas is truly magical. The wishing tower and whole wishing place were incredible. Alex was so excited to meet Abbey and Lloyd our wish granters. We arrived and Alex got to choose a color for the wishing tower. Once he had, the room lit up in that color and we followed a magical path into a sitting area. Alex was able to watch a video about the different types of wishes you can make. Then we moved into the wishing room where Alex was given several gifts. Finally we got on to the actual wishing! They had Alex draw his wish. He drew a picture of a zebra. His wish was to sleep with the zebras. After talking to Alex it was decided that we will travel to San Diego where Alex will get to visit the San Diego Zoo, sleep with the zebras at the San Diego Animal Park and visit legoland. Our wish granters were excited about his wish as they do so many trips to Disney, it is neat for them to plan something new. We will not be travelling for some time so I will keep you updated as the process continues!

Alex getting ready to head to the Wishing Place

Arriving at The Wishing Place

The Fountain at the entrance

In the Courtyard

All of us in the Courtyard



Alex making his wish

The Wishing Tower

Let's see what else....Medically speaking Alex is doing OK. This illness has taken more out of him then any other that I can remember. He is napping 5 hours and I am having to wake him up. He is sleeping longer overnight as well. We also noticed some big differences in therapy. Things that he mastered over a year ago were a struggle this week. We are hopeful that he will continue to get stronger each day and be back to himself in no time! His labs look pretty good. We are once again battling pretty high triglycerides, but are decreasing his lipids yet again to try and get a handle on it. Tomorrow will be our first day without IV seizure meds so we will know whether the new seizure med will work. Please keep your fingers crossed!

We will forever be thankful for the help of our friends and family as we have struggled through difficult financial times. We cannot wait until we are back on our feet and able to pay forward the kindness that has been shown to us. In the meantime, we ask that you continue to pray for us as we struggle to right the ship.

This week is Alex's last week to sell popcorn for Cub Scouts. To those of you who purchased...Thank you. If you would still like to purchase please go to www.trails-end.com. It will say You are supporting no one on the top right side in green. If you click on change then you can enter Alex's scout id # 7676878.

Thank you for blessing our lives with your love and friendship.

Ali