What a picture of God's shepherd heart for us, as a young lamb rests on the shoulders of a shepherd, so are we to rest, knowing that the Shepherd of our soul will carry us when we are in need of help and comfort. I've been meditating on this verse. In some ways, life has slowed for Adonis and I considerably since we learned about our son's condition. I can only think of a coffee percolator to describe it, only it seems like we only get one drip a day to fill our pot... feels like we are waiting. Waiting to see what happens, waiting for God to speak to us, to speak to our storm, to give us a drip of comfort each day and a drip of strength to complete another day. Resting sounds so much better to me than waiting, doesn't it? That's why I've been so consumed with this verse about resting secure in Him. That's the prayer of my heart, that we can rest secure in Him, knowing that we are his BELOVED, even while this coffee pot of life is brewing.
On April 17th, we upped Edmond's dose from 2.8ml to 3.75ml of Keppra. It's already been a week and he has continued to have 2-3 very short tonic seizures per day, lasting less than a minute. The good news is they have not worsened in duration or intensity. Also his spasms have significantly lessened. There are days where I haven't seen any, which has been a real blessing. He also stopped having a series of spasms during an episode, now it seems he will only have one brief spasm flexing movement and then be okay for another couple of hours at a time. We are hoping these continue to disappear. Edmond was also referred to vision services through an organization called Blind Babies who are coming to assess his vision skills tomorrow and will be seeing Edmond 2-3 times monthly for vision therapy for Edmond. At his last 9 month old appointment with his opthamologist, the doctor stated that she would not consider Edmond to be completely blind, but that he does have limited vision, only we don't know how limited it is. Edmond's eyes and brain are still developing so early intervention services will be helpful for Edmond. We believe Edmond does see us and we see him track momentarily. He is also fascinated with lights and it is obvious that he looks at lights.
Adonis is organizing a poker tournament fundraiser for Saturday June 2nd. Please contact us if you would like to be a part of this event. You can call or text Adonis at 650-303-5862 or email firstname.lastname@example.org. We also have a paypal link on our blog if you would like to give a donation for Edmond or email us and we can provide you with our mailing address if you would like to send a check. We will definitely post about specific needs for Edmond as they arise.