Lately

Doesn't Occupational Therapy look boring and rigorous? So much has been happening lately. Last week Ammon had an MRI done on his spine to see if he has a tethered spinal chord. Everything was normal...too bad the experience of having an MRI isn't normal. Watching your child go into an induced sleep isn't the most calming experience. Seems like it would be, but it's rather unnerving. I can handle my boys coming to me with all kinds of scrapes and mishaps but to see Ammon lying there lifeless honestly made my legs shake.

This Wednesday we get to meet with Dr. Opitz at the University of Utah. The real name of FG syndrome is Opitz-Kaveggia syndrome. When I called to make a follow-up appointment with Ammon's geneticist, Dr. Kerry, the receptionist said "Well, we can get you in on...April 3." The appointments are always so far out and that is for follow-up appointments. To schedule an evaluation it is usually more than a year out.
I'm thinking one of our children should seriously consider going into genetics! I was going to write to Dr. Opitz and ask him some questions about Ammon, I have read other letters on-line to him from other mothers with children with fg and he was very helpful. While I was on the phone with the receptionist I asked if Dr. Opitz took patients and she regrettably said no. Then I mentioned my son may have fg syndrome and she responded that he DOES take fg syndrome patients! I listened "He can see your son (I'm thinking in my head February? March?) ...next Wednesday morning" Great!! We're there. I wrote our neurologist, Dr. Kerr, and asked her more information about Ammon's brain MRI from a few years ago. I wanted to know if she could see his corpus callosum. A side note... the other night I was feeling a bit overwhelmed with trying to keep up with the long list of my children's needs and schedules. I was venting to Andrew and gave him the long list of happenings and at at the end said "and with all that I've got to figure out if Ammon even has a corpus callosum!!" Those are night thoughts you give to your husband lathered with drama before you fall into a comatose sleep. The corpus callosum is the part of your brain that signals left and right brain communication. Dr. Kerr kindly wrote back and said she went back and looked at the scan and reported all looked well, but he did have enlarged ventricles which may be compatible to the syndrome. So there we have it. I just wanted to gather all the information I could before meeting with Dr. Opitz. (I can't wait!)