A Hard Week

This last two weeks has been a hard few weeks for me. I usually am pretty good about seeing the positive and keeping a smile on my face, but this week has been a test for sure.

As many of you know Bruce's company went through a restructuring and eliminated his position as of September 30th. This came as a complete shock to us. Over the past week we also realized that the way they handled his severance made the road much more difficult for us financially. We also have to keep COBRA until we have other insurance coverage. COBRA is $2000/month! Please continue to pray for us as we struggle through this period and if you have any leads, we would appreciate a heads up. A HUGE thank you to those of you who have already reached out with encouragement or job possibilities. It is SO very appreciated. We have felt the love.

Maddy was sick for a bit this last couple weeks, but we did manage to fit in some fun.

We have been getting to the Therapy Center early each week so Maddy can help groom and tack Rebel.

Immediately after getting off Rebel, Maddy said she didn't feel well. By the time we got home her temp was 104.1!

She was happy when she felt well enough to go back to school!

Maddy and her BFF! They have the most special relationship.

Bruce and I were invited to attend the Cook Children's Celebration of Generosity. It was amazing to be there to celebrate all the people who give so generously so my kids have an amazing hospital where they are well cared for and so loved. 

We finished out the week with both kids doing what they love most...Maddy spending time with her friends and Alex meeting with other gamers to raise money for Cook Children's through Extra Life.

Alex is 2 weeks away from game day. He has accepted that he will not make his goal this year, but he is still trying to raise as much as possible. If you would like to donate, please click here

Anyone who knows us, knows that our nurses are like family to us. Erin stopped working last October right before Greyson was born. While we don't get to see each other for many hours a week anymore, we have remained the best of friends. Yesterday we joined Erin and Evan and their family to celebrate Greyson's birthday!

After the last few weeks today was a day for lounging and relaxing and regrouping before we take on the upcoming week...

Not only a service dog, also a foot rest

Sweet Mia turned 7 yesterday

Thank you to our friends and family who love us and give us hope to continue moving forward even when life tries to knock us down. We are so lucky to have so many amazing people in our life.

Ali

Highs and Lows

This week has been a week of amazing highs and awful lows...

Alex had a pretty quiet week which was much needed after last week/weekend.

Maddy had her usual school and ballet and therapy, but had some medical testing and fun events as well.

Victory Therapy Center and Riding Rebel continues to be the highlight of each week.

Maddy grooming Rebel

Obstacles

Riding Backwards

Riding Sideways

Maddy leading Rebel back to the stables

Maddy and her favorite volunteer, Kasey

Thursday was spaghetti dinner at school. Building Blocks has been so amazing for Maddy and our family. I am not sure what we are going to do next year! Mad loved her night playing with her friends. 

Maddy, Aylee and Rosalie

Friday started with some medical testing. I have had quite a few people ask about this. Maddy is diagnosed with Mitochondrial Disease like Alex. Mitochondrial disease can effect any organs in varying degrees from mild to severe. No two people with Mitochondrial Disease present in the same way. I often say that Maddy has reaped the benefits of our experience with Alex. Because we were able to diagnose Maddy so much sooner and start being aggressive in treatment of illnesses she has not progressed to the same level as he has. However, Maddy's looks can be deceiving. She looks completely "normal" by all appearances, but she has quite a bit going on medically. Besides our mitochondrial disease, we have a gene that is known to cause epilepsy.  Alex is diagnosed with epilepsy based on many seizures throughout his life. While Maddy has not had any large seizures, she has had some periods of "zoning out" so it was decided that we should do an EEG to see if there are any abnormalities. She has also had her thyroid testing come back our of range and increasingly abnormal for two years. We repeated labs again to decide if and when we need to treat. Maddy was a trooper for all these tests. 

After getting through the medical tests, we were able to turn our attention to the Fairytale Ball which Maddy looks forward to all year!

We are so grateful for HopeKids for allowing us the opportunity to make amazing memories together.

We have some very specific prayer requests this week! Bruce was laid off very unexpectedly on Monday. His company went through a restructuring and his position was eliminated. We ask that you pray for God to open amazing new doors. We also ask that you pray for our insurance to continue until he finds something new.

Ali

Alex continues to raise money for Cook Children's: Alex's Fundraiser