It’s never a straight path; every journey is filled with some twists and turns and some falls. Alek’s journey is no different.

As I said in my previous post, Alek’s appetite slowly dwindled to nothing which in turn led to him not feeling the greatest. He started having difficulty keeping medicines down and he also had increased diarrhea. On Monday, during our normal clinic appointment, Alek’s team decided to admit him (God had already prepared my heart for this). Alek was put back on TPN (IV nutrition) and was monitored overnight. Alek did test positive for Covid, but he has remained asymptomatic except for the stomach issues. His potassium levels were low despite multiple replacements which led his team to hold one of his medications; this has helped his body hold on to the potassium and we will restart the medication tomorrow. Alek was discharged from the hospital Tuesday evening after his “tune-up” and monitoring by some of our favorite doctors. His favorite BMT nurse and nursing assistant made sure to pop in and check on him before he left, which definitely put a smile on Alek’s face!

Because Alek tested positive for Covid we have moved into a hotel for a few days (RMH policy). This has been a bright spot for Alek and something he enjoys. Grandma and Grandpa have been with us since Sunday and have been able to enjoy some quality Alek time. We even enjoyed a walk together this warm and sunny afternoon!

At clinic today, we were told that Alek is closer to being transfusion free, meaning his cell counts continue to grow on their own and he no longer is needing transfusions!!!!

While going in-patient for a night and being back on TPN was not what we wanted, Alek’s overall trend is upward. We are praising God for each little victory along this journey and continue to lean on Him through it all.

Next week Alek will have his 60 day post transplant MRI. We are praying for complete healing in Alek’s brain and believing that God has halted the progression of the disease!

Therefore I tell you, whatever you ask in prayer, believe that you have received it, and it will be yours. ~Mark 11:24~

We also are lifting up some of our fellow ALD families in prayer this week-

Aaron who has transitioned back home and is showing signs of Graft vs Host Disease

Joey who will be admitted next week for transplant

AJ who is awaiting transplant and is away from his siblings whom he and his mother miss tremendously

Caleb who is awaiting a date for gene replacement therapy to begin

We are also lifting up Alex, who does not have ALD, but does have an autoimmune disorder that has attacked his kidneys and he is awaiting a decision from OSU regarding eligibility for transplant

Our prayer warriors are amazing and we are hoping that you will lift up these boys and their families along with us!

Joshua 1:9

Deuteronomy 31:6