Hello dear friends

This is not so much an update on Mason as a new connection for me. Recently I met a young mom from Alabama on Facebook who has a little boy with the same seizure disorder that Mason has. Kristy has a little boy, Jon Andrew, who is 2 1/2 with Infantile Spasms which is now progressing into Lennox Gastaut Syndrome. Exactly like Mason, only we are a number of years ahead of them. They are in a very difficult place right now, bleak, dark, seemingly no hope. We have had several opportunities to connect online, and have had a couple of long phone calls as well. I feel extremely privileged to be able to encourage her and give her hope, seeing as we are further down the SAME road. Having said that, this is the first time in 7 years that I have had someone to talk to whose child has the SAME condition. Shows how rare LGS is. I'm sure there are others around, I just haven't met them yet. Maybe I'm too shy.....

Anyway, we talked at length on the phone today and I told her how wonderful it's been to have so many people pray for Mason and us and really encouraged her to let those in her life know when and how to pray for them. I also asked her if I could pass it on to my Mason update people. So here is her email!!!

FYI: Mason has had several of these longer EEG's done and it's torture. This is what happens: we strap him down in a full body velcro kind of thing, shoulder to feet, I lay on him, trying to calm him down, as he is screaming the whole time, face beet red (one time he even had peticial hemorrhaging - tiny blood vessels bursting all over his face because he screamed so hard and so long). So for the next 1/2 hour this goes on while the EEG technician marks his head and then glues 25 - 30 leads (wires) onto his head. This happens with all EEG's. In the 24 hour ones ( or longer) he has to stay in bed for the whole time because they monitor him by video as well, and he can't be running around for that!! Never mind that he's hooked up to a head full of wires.

So knowing how hard this is, I would like to ask you to take a quick moment to pray for Jon Andrew. LGS is one of the most severe seizure disorders there are, so the road is long and hard ahead for them. Pray that God will give each of the doctors, nurses, technicians, and all others involved with this baby, HIS wisdom, HIS knowledge, HIS understanding, HIS direction, HIS peace to the family.

Thanks so much,
Shirley
by the way, Mason is doing great, other than having to go to school in his pajamas this morning, because he refused to get dressed. His routine was thrown off a bit this morning. Not that he cares what he wears to school! There was no way that I could convince him to change, and he's just to big for me to force him. He is exerting his desire to do what he wants to do. He is VERY aware that he has CHOICE!!!!



Dear friends and family and church family,
Just wanted to ask you to pray for Jon Andrew tomorrow (Tues until Wed) as he has a 24 hr EEG done. Pray that Jon Andrew would sleep while they are hooking up the EEG machine to his little head and that the doctor would have divine wisdom in next steps for him. Neurology is more of an artform than a science because of the brain's complexity. Jonathan and I have had lots of anxiety over all the seizures lately. We don't know what God's plan for Jon Andrew's life is, but we ask that you'd pray for our willingness to surrender our will to His.
Thanks
kristy