Alek and I have now been home for two weeks. We are all slowly adjusting to the new norm. This transition has not been an easy one on any of us, but we are so grateful to be home and all together under one roof! Many of you have reached out, and while I have not been in the right mindset/emotional state to reply, please know we appreciate each of you and all of the kind words!

One of the hardest parts of the transition has been the adjustment to traveling for doctor appointments and therapy sessions. We are no longer 5 minutes from the hospital. We are making weekly drives to Toledo to meet with his new oncologist (who has been amazing!), and will have more appointments with endocrinology, neurology and gastroenterology. We are traveling to Defiance twice a week for PT, OT and soon speech therapy. We are also traveling to Fairview twice a week for tutoring.

Being home has helped Alek’s appetite – being able to cook for him has made a huge difference! He is now eating every meal pretty consistently and telling me he is still hungry. We are continuing on his TPN at least through this week with the hopes of being able to begin tapering. The flagyl has helped with the frequency of stools, however he continues to have burning when he uses the restroom which causes him increased anxiety and even avoidance. We have an appointment with GI, but not until Aug. 22, which according to Dr. Gupta, is not soon enough. There continue to be concerns that Alek could have Crohn’s or GVH.

Overall, I think Alek and I are both depleted. Neither of us is able to get a solid night’s sleep due to the TPN causing him to wake up to use the restroom. We are both up about 4-6 times each night. This also causes John and the other boys to wake at times as well. Traveling almost daily for something is also exhausting. Taking care of a home, husband, and three boys is exhausting (as any parent knows) and then adding all of the medical stuff on top has been hard. Alek is struggling to cope with all of the changes he has endured over the last year and it is coming out in negative outbursts, refusals and sometimes physical aggression.

Many of you have asked if there is anything we need – we need volunteers for the fundraising my sister is doing for COTA for Alek Strong. Please reach out to her to find out more info on ways you can help with this. She holds biweekly meetings and would love to have as many volunteers as she can get to help!

Mae.carrie@gmail.com

As we begin to prepare for the upcoming school year, there is a lot of uncertainty. We will not know if Alek will be able to return to in-person learning until we return to Minnesota in August. In the meantime, I am trying to prepare for either situation. I would love to be able to return to work full time in the fall, but if Alek cannot go to school I will need someone to be with him, and Sylas, during the day. This is a lot to ask of anyone. Having an in-home care person with nursing experience would be ideal, but I don’t even know if this will be an option financially. Please pray for us as we continue to make decisions for our family.

Joshua 1:9

Deuteronomy 31:6