Prayers Please

I know it has been forever since I posted, but prayers for Oliver would be appreciated. Tonight he had a seizure where he had difficulty breathing and it was really scary. We have a call and email in to our Boston team and hope we can hear from them soon. Please pray for a solution...watching your child struggle to breath as they go limp is awful!

A quick update: recently Oliver has had significant trouble accessing language and using words. He rarely speaks, but so clearly wants to. I haven't heard him say "I love you"  or "mama" in over a month.

So very sad.  My heart hurts to even type it.

"Uncle Sam" and Ollie at our neighborhood 4th of July Parade

Despite Andrew and I both working long hours, we have enjoyed the summer so far. We  have loved having my grandmother move to town permanently, and my mom here for most of the summer. We have also enjoyed visits with Andrew's family and all of Oliver's cousins. We even got a surprise visit from Uncle David and Aunt Yerusalem (expecting Oliver's 11th cousin in August!)

Also, we have been in contact with Dr.Thiele about getting Oliver into a clinical trial (they are hoping to put 12 kids) on Cannabadiol. I don't know what the time frame is for this, but we are hopeful an entirely new drug will provide relief from the relentless seizures.


Thanks for hanging with us, despite my lack of posting. We are so appreciative of your love and prayers! Here is one of my favorite new photos of my boys. Love these two so very much...