An Awesome Week with Mimi

We have had an amazing week! Several months ago we planned for Mimi to come visit while Maddy was out of school for Spring Break. We thought it would be fun to surprise her. Well it was so much fun. Maddy's reaction was priceless!

Friday we had an appointment at the hospital. A little aside...It is no secret that we love our hospital. I love that instead of fear my children feel joy and love when we enter those doors. For Alex, a large part of that love is his friendship with Sonny Burgess. Sonny is one of the most amazing individuals I have ever met. He is outgoing, he is loving, he is funny and he is so very kind. His ability to meet Alex where he is and accept him and love him unconditionally has been so important. Alex feels safe to be himself with Sonny, to laugh, to be angry, to cry, to not feel good, to change plans. Sonny is willing to be and do whatever Alex needs. I am so grateful for the blessing of a man who loves wholly and sets the example of good manners and kindness to all. Because of this special relationship, Mimi loves Sonny and wanted to spend time watching Sonny and Alex have a violin lesson.
We also snuck in some cuddles on the couch, games, and a lunch date for the girls.

Saturday was a perfect day. The weather was gorgeous so we headed off to the zoo.

Saturday afternoon we had a visit from our Sweet Erin and Greyson...

Sunday we had a quiet day to recoup before heading to the Perot Museum on Monday.

Tuesday we were meeting some of our friends from the hospital for International Pancake Day which supports Children's Miracle Network Hospitals. We were shocked when we got to the IHOP and they had decorated a table for us and we got to sit and chat with the owners during breakfast. Alex is always such a good sport about these events, especially ones focused on foods since he can't eat.

Yesterday we were sad to say goodbye to Mimi, but it was nice knowing it won't be long til we see her again. My mom and I have always been extremely close and I love watching the relationships she has with each of my kids.

As we look forward to tomorrow the excitement builds...As many of you know, Alex and I are leaving tomorrow to spend 4 days with our trainer and then bring Zoey home. We said goodbye to Zoey 101 days ago. She has been missed, but we are so excited for this next chapter. I have had many questions about what she has been doing/will be doing. One of Alex's main diagnoses is Adrenal Insufficiency. In a normal person, your body makes cortisol and if you are under any kind of stress, good or bad, your body produces more. Alex's body doesn't produce any cortisol. We give him a standard dose, but any time his body is stressed we have to give him more. Here's the kicker...his mitochondrial disease makes almost everything stressful to the body. There is no monitor to tell you when you are low. You have to go by symptoms, but if you are asleep or so sick you can't communicate, you can go into crisis which a potentially fatal condition. Alex has been in crisis multiple times. Zoey has been trained to detect when his cortisol is low. She will have the ability to alert us and save Alex's life before he goes into crisis. This will not only allow Alex to feel confident to be more independent, but also relieve some of the constant stress I feel. We are so very thankful to everyone who has prayed with us, shared our link and donated to our fundraiser. This would not have been possible without you. We didn't quite meet our fundraising goal, but we feel so blessed by every bit. Zoey's Fundraiser

Please pray for us over the next few days. I will be updating with pictures along the way!

Ali