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