Connections

For those who are friends with me on Facebook, you may have heard that we were able to Levi evaluated at the Cleveland Clinic last week by a Pediatric Neurologist. There is a story funny story behind all of this that I didn't put on Facebook, but I think it is entertaining enough to share.

At the Pediatric Neurologist, playing with daddy's
old Transformers

Within the FCA network, Brian has gone to many Bible Studies over the years. When we lived in Lincoln, one he regularly went to one on Friday mornings at a diner in town and we lovingly referred to this study as the "Old Man" Bible Study. It is a bunch of guys, all over the age of 70 who order oatmeal with bugs (that's oatmeal with raisins in diner talk) and chat. One of the frequent attenders of this early morning study is Tom Osborne. Well, a few weeks ago, Brian's boss was at the Old Man Bible Study and mentioned Levi in a prayer request, sharing about what's going on and his January appointment with the Pediatric Neurologist. Apparently Coach Osborne felt compassion for how far off this appointment was and offered to help and see if he could get it moved up.  A couple of weeks went by until last Monday, while in we were in Ohio, Brian spoke with a regent of UNL who had been asked by Coach Osborne to help us out. He contacted a Vice Chancellor at UNMC in Omaha, and before we knew it, Levi had an appointment the next day (last Tuesday) with a Neurologist. Well, this was amazing, but we were in Ohio for Thanksgiving. Bummer. Brian mentioned that we were close to Cleveland Clinic (ranked #3 in the nation for Pediatric Neurology) and they said that if we were able to get in there, to go ahead.  So, last Tuesday morning I made a phone call to the Cleveland Clinic and lo and behold Levi was able to get in that afternoon.  Before we knew it, Brian, Levi and I were off to Cleveland with Jonah and Abby staying to hang out with Papa and Mimi.

Driving through Amish country.

The appointment itself went well. Levi cooperated for his part, but mainly we talked about what's been going on with him and his history. The Dr.'s opinion is that Levi has one of three things going on: 1) Something called Landau-Kleffner Syndrome, a seizure based condition that damages the language part of the brain, if I understand correctly  2) Autism  3) Apraxia by itself and we just won't know what's causing it. To rule out Landau-Kleffner, she wanted him to have an EEG and we were able to get it scheduled for the next day.

The EEG was an experience and overall it went well, but I'd rather not ever do it again. They swaddled Levi up in a blanket and wrapped taped around him so he couldn't grab the wires while she put them on. She first measured his head and marked where the electrodes needed to go and then glued on and blow dried the glue of all 20 electrodes. The whole process probably took 20-30 minutes. He hated it, fought and cried for probably half of it, but the blessing in that was that he was so worn out from the process that he fell right asleep on cue two minutes into the test.  Thank you for praying!! He slept for a bit, then she had him woken up, flashed a strobe light in his eyes, and had me hold his eyelids shut for a few seconds. The test itself was 23 minutes I believe. Thankfully, they were able to get a very good reading and all went well on that end. After that, she used a type of fingernail polish remover with oil to dissolve the glue and get the electrodes off and then washed his head. We were glad to be done.

Post EEG. We were all glad to be done!

Later that night, after we were back at Brian's parents, the Neurologist called to say "His EEG came back normal. OK? Thank you. Goodbye." Not exactly Mrs. Information for me, but I was glad everything was OK and we could rule out Landau-Kleffner. While most people agree Autism is very unlikely, we are mostly likely going to do a type of Autism testing that she recommended called ADOS to get a better picture of what's going on.  I spoke to the people at Munroe-Meyer about it today and hopefully should get more information regarding it this week.  Today I also had a woman at Munroe-Meyer (not sure of her title, but she observed Levi) suggest that we may want to have genetic testing done as well as an MRI. Hoping to get this Developmental Pediatrician appointment moved up so we can knock out some of this other tests and unknowns!  So, the road continues, but we are thankful to have gotten one Dr. appointment and test out of the way. Levi is charming people all along the way though! Everywhere we go they are all talking about what a cutie he is. And they're right.