Alex and Maddy

Alex and Maddy

Tuesday, March 19, 2019

Zoey

For Christmas 2015 we surprised Alex with the news that we would be getting him a service dog. He was ecstatic. We knew of a trainer who had trained therapy dogs for our PT and OT office. He had also trained several service dogs and focused on what each individual child needed. They wanted us to get a Giant Schnauzer because they had a breeder they knew and trusted that would help pick the right temperament for our dog. Zoey arrived at the trainers in April of 2016 and came home to us in May of 2016. The plan was for us to do some day sessions as well as several week long "camps" at the trainer's facility. We had a hard time coordinating schedules and getting Zoey the training she needed. In August of 2017 they let me know that they were no longer going to be training service dogs. For those of you who have followed us for a while, you know that the second half of 2017 was AWFUL health wise for Alex. We decided to give up on training Zoey to be a service dog and just let her be a pet. As Alex started to recover in 2018, he began to bug me about finding a new trainer. He really wanted Zoey to be able to do what she was meant to do.

We learned about Beverly and All Purpose Canines in late October. I was amazed when I learned that she trained dogs to detect low cortisol in people with Adrenal Insufficiency. That is exactly what we needed Zoey to do. It definitely seemed like an answer to prayer. Bev was willing to help us finish Zoey's training, but wanted to meet us and run some tests to make sure she could work with her. We met Beverly for our assessment in early November. She sent us home with some instructions and a date to return. 

On December 3rd, we said a tearful goodbye and left Zoey for an unspecified amount of time. The last three and a half months were incredibly hard as we missed our girl, but knew she was working hard to learn everything she needed to know to help her boy.

On Friday we headed back to spend four days with Zoey and Beverly learning all we needed to know to make a successful transition home. Bev has worked diligently to not only work on Zoey's ability to alert when Alex's cortisol is low, but also to obey commands and work through Zoey's scaredy cat nature. I cannot begin to tell you how proud I am of Alex and Zoey for the hard work they put in over the past four days. The change in their partnership, their trust in one another and their confidence was amazing. I am SO grateful to Bev for her devotion, her diligence, her knowledge and her love (even if it is hidden under a tough exterior)! Alex and Zoey are still growing and learning, but they are a team and they would go to the ends of the earth for each other.

On our way

Together Again

Relaxing

Leash Skills Training

Learning how to navigate Stairs

Down Stay

Happy Boy

Snugglin'

Holding Hands


Down stay with Max

More leash Work

Cuddling her boy

Outside our hotel Day 2

On a Break

Sometimes you need a break

It's not nice when your trainer won't let you have a snack!

Naptime

Outside the Courthouse

With Beverly, Ariel, and Max

Riding the Elevator
Grandma Bev



Home and a Haircut!
We ask for continued prayers as Zoey and Alex continue to learn and work together. I can never thank Beverly enough for this gift.

Ali



Thursday, March 14, 2019

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

Sunday, March 3, 2019

Stadium Takeover, Dance Marathon, and a Prayer Request

This weekend has been a whirlwind of activity! Overall we had a pretty quiet week. Alex needed some downtime after last weekend. We laid pretty low until yesterday....

Last March, a friend convinced me to give Camp Gladiator a try. They were running a special where 1 camp was pretty cheap and I decided I would sign up for that one camp to motivate and kick start my fitness goals and then workout at home. That month came and went and I wasn't ready to be done. There was an incredible trainer who knew when to cheer me on and when to push me harder, there was a group of campers of all levels who gave high fives and cheered you on when you were struggling. There was sweat and hard work, but also laughter and chatting. This crazy group has become "my crew". Forty friends I meet up with every morning at 5 AM when most people are sleeping. My trainer still knows when and how to best push me to be my best. My accountability partners are there to make sure I'm showing up each day and have become some of my closest friends. My crew is still there with high fives and encouragement and snarky comments. I have pushed myself harder over this past year and that was evident yesterday when I completed the Stadium dash that was supposed to be a CG style 5k, but was closer to 6 miles! It was hard. It was cold. But it was SO fun as you can see by the smiles on our faces from beginning to end!

Trina and I arriving at the Ranger's Stadium

In the starting gate

Outside the Stadium

On our first long run

Bear Crawling  40 yards up a hill

In the Dugout

With new friends at the top of the "Stairway to Heaven"

At the top of the stadium
On the field
We found one of our 5 AM crew!

We survived!



 I am so grateful for these girls who motivate me and push me to be the best version of myself everyday!

After a quick shower and nap we were off to our fourth dance marathon at TCU. Every year I walk away form this event inspired and awed by these amazing students and their capacity to give during a time in their life when most are focused on themselves and having fun.


Maddy and Natalie

Maddy found Maddie

Unicorn Face Painting

Everything they do is "For The Kids"





He is always her safe place!









We left yesterday filled up. We are so blessed to know that no matter how rough things are, we do not walk this journey alone. We thank God every day for the incredible people he has placed in our life and the constant reminders of his love.

Please say some prayers this week for Alex and his port. His port is not acting quite right which has us on edge. We are hoping to talk to our hematologist tomorrow and make sure everything is good.

Ali

Zoey is still doing well. We see her up in 12 days! Zoey Fundraiser