It’s Easter Sunday, also the eve of Alek’s 11th birthday. Eleven years ago, it was also Easter Sunday and I was having contractions all day and praying for this babe to make his appearance (I was due on March 25). He decided he would be an April Fool’s baby, which for those who know Alek personally, this is THE perfect day for him! He has this way of being funny without even trying to be funny. 

I realize that I have not posted an update to let everyone know how the 1-year checkup went, and for that I apologize. Words have not wanted to come until today. 

Overall, everything is looking great! His chest x-ray and echocardiogram looked good, ophthalmology was good (his visual field test is still unreliable but it showed improvement), and his kidneys are healthy! His BMT doctor was able to see first hand some of the behaviors and mood swings we had been seeing at home as well as some of the suicidal comments. This was beneficial as it opened the door to discuss behavioral options. The neuropsych testing was something I was concerned about as Alek has refused to participate fully the past few attempts. This time, he rocked it! He put forth his best effort and was treated to a trip to Target for cheese balls and airheads – 2 of his faves. The results showed stability and even some areas of growth, which is uncommon. His visual working memory did show some regression though. The doctor was able to provide us with some strategies to try at home related to his behavior/depression/anxiety/trauma. The endocrinologist changed up the dosing schedule of Alek’s hydrocortisone to see if that would help with afternoon slumps and also checked for celiac, checked his thyroid, and growth. Last, but not least, the MRI. Why they always schedule this on the last day is beyond me! Starting the IV was very painful and stressful for Alek – 2 nurses and the anesthesiologist attempted, using ultrasound, with no luck! He does NOT like gas and the mask, so this was even more stressful for him. But it worked and they were able to do the MRI as well as some other tests and gave him his first vaccinations. The results of the MRI were unchanged from his last MRI in October – this is the best news we could expect! It means that the transplant worked! We do not have to go back to Minnesota for another year! 

While we were there, we were able to visit a couple of Alek’s favorite places – Meister’s restaurant and the Mall of America (Fly Over America and the Lego store). Next time, we hope to have the whole family so we can enjoy these things together. 

Since our visit, Alek has continued to struggle with controlling his anger and making suicidal comments. We are currently trying a new medication to see if this helps with any of the social emotional health concerns. We also cut back in his therapies as he was refusing to participate and so no progress was being made. He is just doing physical therapy for a bit, as this was his favorite therapy. His counselor we had been seeing also suggested taking a break as she was not able to make progress with her therapies. We are on the waiting list for a therapist that is ABA trained in hopes that this type of therapy will be successful. 

Watching a child go from smiley and happy the majority of the time, to angry and not liking himself is hard. A parent never wants to hear their child say they wish they were dead. Seeing these changes and feeling helpless and not knowing how to help has been one of the most challenging parts of this journey. I see glimpses of my sweet, happy, silly guy and those moments keep us moving forward. The warm weather has been encouraging as Alek has been outside riding his bike, swinging, playing basketball and just being a kid with his brothers.

As we continue living with this disease and the changes in Alek we ask for prayers for the following:

Continued transplant success and no further cerebral damage

Joy and happiness in life

Finding his passion/s

Courage to keep trying, especially when he thinks he can’t 

Strength and understanding for John and I, and all of those that are a part of Alek’s life 

This world is better with Alek in it. God has a plan for him and it’s a great one! 

Deuteronomy 31:6

Joshua 1:9