Month #4 Update

I had great intentions to post updates every month, but somehow that third month got away from me! It has been four months and two weeks since Nolan first received stem cells in Panama; and it has been a doozy! We were told by the doctor that we might see bouts of agitation and even aggression from Nolan once we got home. There are some kids who don't experience this but more that do. It is temporary and thought to come from physical discomfort caused from effects of the stem cells. No one can really know for sure because most of these kids are nonverbal. On the Facebook group I have met so many families that have done several stem cell treatments and most of them experience what the doctor described. Their best advice to other parents is to hang in there and know that, in a way, it is a good sign that the stem cells are working. I can tell you from experience that these words aren't very comforting in the moment.

Around the three month mark post stem cell treatments Nolan started having moments of agitation that was uncommon for him. He's usually a very happy kid with big emotions and you don't usually have to guess what's going on with him. However, this frustration and outbursts from him came from nowhere and what seemed like nothing. Random screaming, major tantrums over simple things, hitting others, and self harm showed up suddenly. It wasn't 24/7 but was enough to know that he wasn't himself. I started asking other parents that we met on our trip and they were experiencing the same things we were. There was comfort in knowing we weren't alone and what it was coming from, but it didn't ease the feeling of helplessness and heartache that came from it. I can't imagine what Nolan was feeling to make him act the way he did.

Thankfully it only lasted about a month on and off for us. I've heard about some families that experience this for a week and others for 4 months. We are blessed with great people at Nolan's school that helped him, loved on him, and worked with us to do whatever was needed in those tough times when he didn't feel like himself. I had also heard from other families that the biggest gains they saw after stem cells usually happened around the 4 month mark or later. So those tough moments gave us a smither of hope that he would feel much better once it passed.

I can see he acts like he feels much better now and more like himself. I know I have talked about awareness a lot since his treatments but it is the biggest thing we have noticed! With awareness of his surroundings has come other challenges that we never anticipated. For example, he sees and soaks in more of what is going on around him, but he is also frustrated by those same new things. People and sounds that didn't bother him before get on his nerves now and he will let you know! Ha! He is also curious about EVERYTHING around him. Because of this, he is like a little mischievous toddler but way too smart for his own good! We used to be able to leave him alone for a few minutes while he took a bath or walk out on the back porch while he is in the living room. This week while I walked away for 10 seconds he put 6 full size bath towels in the bathtub with him and thought it was hillarious! A few days later I walked on the back porch and heard the door shut. When I went to open it back up I realized he had locked the door!! He laughed and unlocked it right away!

Even though he is into everything and getting into all sorts of trouble I wouldn't have it any other way because in the past he was in his own world all the time and never would have done any of these things! His speech is also still improving. He can say "Harper" very well now! He says new things all the time and wants us to know about it! He is starting to pronunciate things better too. He used ot say, "gotosleep" as one word but now says "go to sleep" very deliberately and makes sure we know he did it too!

As hard as the agitation and aggression were it is nothing compared to the gains we have seen the past few months. He is happier and seems to be so much more comfortable in his world. Please continue to pray for Nolan in the months to come as his body continues to adjust! I'll do my best not to skip another month of updates too!