Today they called us with news regarding Nico’s AVM. The doctor said that Nico’s 5% residual may be gone in a year in half –three years. The radiation is still in his system so they possibility is still high that the AVM will continue to deteorite. In a year in half we go back for another angiogram. I also spoke to the doctor regarding Nico’s memory. He is really struggling in school with remembering things. One day he does well on a math test the next day he can’t remember anything. It has been back in forth like this for a couple of years. He has a one-one at school and I have him in RSP program. He is about a half a year behind all the other second graders. The neurologist decided to order a SPECK exam (anybody have this done?) to see if how much fluid is in this area. He had some damage done to an artery as a result of the gamma surgery. So here we are another mixed pot of news! We are keeping the faith! Nico’s twin Brandon is having his bone graph surgery in March. So the appointments have started for him. They said he will be in recovery for a few weeks.

My SIL shared with a beautiful devotion it’s actually the serenity prayer with a twist. I am always asked “How do you do it with two kids who have medical problems… it must be so hard.” It is very hard, but the most difficult part for me is accepting and knowing that I am not in control and trusting in the Lord to take care of both of them.

God grant me the serenity that comes from knowing You are in control.
Courage to follow You no matter how difficult the way.
Wisdom to seek Your heart instead of depending on my own

I hope all of you have a blessed day!


Okay, I think that sounds really wise of them to wait another period of time. It sounds so long but if you can avoid more radiation then gosh, that has to be the right thing to do. Is Miko on medication? I wonder if perhaps the medications too affect his memory. I am convinced it affects my son’s. I have never heard of a SPECK exam. You will have to tell us about that and the results.
I feel for his twin brother and his next surgery. That has to be a very difficult surgery too. You do have so much on your plate. wow.
I love that devotion. Thanks for posting it. Stay strong, somehow, Mickie.

I also wondered if he is on medications, some days I have problems ,others I dont . For me I think it is meds. I am so glad you added the serenity prayer. It is always good to rember that one !

Thank you for sharing your prayer, Mickie. I would also ask Nico’s doc if his medication affects his memory. I know the AVM causes some of my memory problems, but my neurologist told me that my pain meds magnify the problem (this was during a visit when I was upset about “feeling stupid” lol)

About the radiation…it can take quite a while to completely do the job. I had proton beam radiation three years ago and I was told to give it another year to see what it does. I understand how hard it is to be patient, especially when it’s your child. You can do it, Mickie! We’ll help you!