Medical Update and Friends

I wanted to give an update on Alex and Zoey...

Zoey is doing fabulous. She is alerting everyday and doing a great job with her manners when we are out. She has been a constant by Alex's side and they are so happy to have each other. We are so grateful for the gift she is and the joy and peace she brings to Alex and to me.

Alex put Zoey in a down stay while he showered. She didn't move for over 15 min!

Vet appt

Endocrinology Appt

Playing Skylanders

She may be a bit of a bed hog

On to our medical update...You may remember a few weeks ago I had mentioned starting a trial medication. This medication is a GI medication that was very successful, but it was pulled off the market years ago because of potential dangerous side effects. (It never came off the market in Canada). The FDA has granted some doctors the ability to use this medication with patients that have no other treatment options. Dr. O had the ability to use it with up to 5 patients. The patients are closely monitored because of the medications history. Dr. O started Alex on half the typical starting dose due to his medical complexity. Yet despite this we noticed when we started last week that he was spiking a fever after every dose. We called the office with our concerns and after many discussions we decided to run labs and try and continue so we could see if the benefits would outweigh the side effects. Alex's labs looked okay for the most part and we continued on. Yesterday we had to have our first EKG. (The side effect they are most concerned about effects the heart). Although the EKG was mostly normal, the number they look at for this drug was above the allowable value. We were allowed to repeat one time within 24 hours before a decision was made. We went in today to repeat the EKG and the value was even higher. We are disappointed that we will not be able to see if this drug could have helped his GI tract, but it was clear his body didn't like it from the beginning. I am just glad for clear cut results that took difficult decisions out of my hands.

Despite not feeling great, Alex was able to push through and spend some time with dear friends this weekend. When we were selected to go on the Kidd's Kids trip in 2017 we were excited to get away and create memories as a family. We had no idea that we would be blessed to meet some amazing families. We have continued to keep in touch and get together with the Glenn's whenever possible. This weekend we met up for a few hours at Six Flags. Alex and Jayla have a special bond and have been able to support each other through some tough times over the past 18 months. As close as they are, all 5 kids get along amazingly well. And Bruce and I love Joy and John. Our only wish is that we could make these get togethers happen more often!

Maddy loves the Carousel

Best Big Brother

Almost two years of friendship

Pie Face!

Thank you for everyone who prays for us and supports on this crazy journey!

Ali

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

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