I have to be honest – I didn’t know the exact day post-transplant and had to use Google! Thank goodness for Google! Although, if you are anything like me, Google is a blessing and a curse. 

I feel like transplant has been this way as well. A blessing of course because we still have our Alek to love and see each and every day. But a curse because he has changed. He sees and knows he is “different” and this has proven to be one of the biggest challenges. Learning is hard, doing things he once did with ease he now finds difficult, he sees his friends and his brothers doing things easily and wants to join them so badly but then gets frustrated when he can’t do it like they can. Hearing your 10 year old say daily he is “dumb” or calling himself a “dummy” or saying he is “just so stupid” is heart wrenching. 

I so badly want him to see the amazing kid, the strong and brave kid, the smart and oh so funny kid, the sweet and loving and helpful kid that so many of us see. But all he sees is what he “can’t do”. 

We are still trying to figure out his GI issues. The doctor here does not think it is GVH, which is a blessing! But he wants to monitor and see – waiting is a curse! Not having answers is so hard to accept. Watching your child fear going to the bathroom because he thinks it will hurt because it has so many times in the past, this is hard. He will hold his poop for a week at a time because he is so scared. He is obviously extremely stubborn (he may or may not get this from his dad)! The stress and anxiety we all have developed around this one activity is insane. 

We are planning our trip back to Minnesota for Alek’s 1 year post-transplant follow-up. This is scheduled for the week of Feb. 12-17; yes we have appointments each day this week. Alek will of course see his favorite doctor, he will complete neuropsych testing, have his vision tested and see a variety of other docs as well as have an MRI. I have to be honest, my anxiety has slowly been increasing because I just don’t know what the MRI will show. We will be driving and hopefully staying at the Ronald McDonald House (although Alek would prefer Home 2). 

Over the next few weeks please lift Alek up in your prayers. God has a plan. I remind myself of this daily. I tell each of boys every night that God loves them and that He has a plan for them. 

We are so incredibly thankful for each and every person that has gotten us this far. Donations, volunteering to help with fundraising, praying, checking in, cards of love have been appreciated more than I will ever be able to express. We are truly blessed to have such a supportive family and community. Life doesn’t happen alone – it takes a village! 

Joshua 1:9

Deuteronomy 31:6