Alex and Maddy

Alex and Maddy

Sunday, May 20, 2012

A Monumental Milestone

This has been a hard week for so many of our friends. So let me start by asking that you continue to pray for the Voelkel family who sent their precious girl Lily to heaven this week after a long battle with CHARGE syndrome. Tyson and Christi were there for me so many times when I needed something or just a friend to chat with. We spent many days and nights together in the halls of CMHH chatting and helping wach other through the craziness of hospital life. My heart breaks for them as they struggle with the loss of their sweet littel, Lily!
Please also keep the McNair family in your prayers. Heather has been a dear friend of mine for several years now. She is one of the first people I met when Alex was diagnosed with Mito. She had been down this path for numberous years already and has always been a trusted friend who I turn to for advice or just to lend a hand, She is someone who makes sure I take some time for me despite all of Alex's needs. Tuesday morning, Heather's husband, Michael (an avid biker) was hit by a car less then 2 miles from their house. He remains in the ICU in critical condition. he is on a ventilator and is trying to recover from a broken neck, broken back, broken hip, broken pelvis, brain bleed, lacerated spleen and more.  As hard as this journey with Mito has been, I am so thankful for the incredible friends I have made along the way. I have truly been blessed in so many ways.

Onto my sweet Buggy! He has been doing great. I love when he is feeling well. When he feels well, he is happy and well behaved, which makes me happy and well behaved ;) and the house is so much fun. He is cruising through the last few weeks of school. We should be done the first week of June. But our big news is we have him back on full feeds and all Jtube meds!!!! Such an accomplishment based on where we were a few weeks ago. The decision was made to once again stop TPN for the first time in 9 months. TPN is hard on his little body, but also hard logistically and emotionally. It is a lot more "work" and supplies for me to make TPN and IV meds and adminster them. It also means we are using his port around the clock. This means that he is only deaccessed (needle removed) once a week. That means he can only get wet once a week. Before last summer this is how it has been for the last 4 1/2 years. Last summer, Alex got a taste of what it was like to be able to take baths everyday, go to the pool, go to the beach, the waterpark, etc. He has never been able to do any of those things in his memory. The doctors and I decided if we were going to trial Alex off TPN this year, we would do it during the summer so it would improve his quality of life vs. in the winter when it wouldn't have the same benefits emotionally for him. We have sure made the most of it this weekend! Yesterday, we headed to six flags where Alex got to ride the flume and came off Roaring Rapids drenched and grinning. We all came home exhausted, but happy. This morning we headed to the pool in our neighborhood where Alex picked up where he left off last year and loved that he could still "swim". This makes my day:




 We are not sure if this time off TPN will be for a few weeks, a few months or a few years, but we will make the most of each moment we have!
Ali

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