Mayo Marathon

On the "day after" Mayo Clinic, I always take a stroll through some visual reminders of how far Amelia has come since October, 2009. The girl who couldn't sit, stand, walk, or see on day 1 in the hospital is flipping somersaults at a family gathering and giving us her big toothy grins, talking a mile a minute with the cutest lisp ever, and shocking the entire medical world with her nearly constant progress in regaining skills.

To God be the glory.

Yesterday was long and hard. It was supposed to be two quite simple appointments in the ear/nose/throat (ENT) department to examine a scarred area of Amy's throat, to see if there was any active infection. Instead, it turned into what we in this area of the country refer to as the "Mayo Marathon". Once you are there, they assume you have no plans for the next 5 days and randomly schedule appointments without notifying you until you check in at the desk. It is an interesting way of doing things on a good day, and downright frustrating on a busy one. We arrived at 10:15 to find that Amy had labs scheduled after her ENT appointments. No big deal. We were quickly called back for the ENT exam, and the resident examined Amelia and took her health history, then quickly scuttled off to find his superiors. The doctor took one look at Amy's missing tooth (it never grew in), her ear canals and her throat, and kindly and calmly asked us if we could perhaps come back after her hearing test and lunch to see another, more experienced doctor. I replied that we could.

The bright note in the day: Amy loved the hearing test and did so well the doctor kept testing her hearing well outside of the normal frequency ranges for her age, and found that she has better hearing than 99% of children her age. The testing room was set up with a bright young assistant who played "flying frogs" with Amelia the whole time. Every time she heard one of the sounds, she was allowed to fling a rubber frog across the room using a sand shovel. She adored the test and wants to go back next week to do it again (the doctor assures us she won't have to have her hearing checked again until she is very, very old and wrinkled).

We had a lovely - albeit somewhat stressful - lunch with the four kids at a nice restaurant a few blocks from the hospital. Another highlight of the long day: conversing with Ali over bleu cheese fondue and lavosh pizza. The four kids kept the waiters hopping (they were obviously not used to people under the legal drinking age) but managed to avoid making any large-scale messes or scenes, for which I was thankful.

Back to the ENT check-in desk. They informed me there that Amy's neurologist was fitting her in for a consultation as soon as I could get up to his office, and to come back to ENT when I was through with labs and the visit with the neurologist. So we hopped up a few floors. When we were called back to the exam room, we walked in to find the doctor waiting for us (if you are familiar with clinics and hospitals, especially big important ones, you know this never happens. You always have to wait for the doctor, not vice versa).

He sat me down and didn't want to examine Amelia. He had just been part of a conference call regarding all of her symptoms with several doctors in other departments. He listed a few:

  • ear, nose and throat oddities noted by the ENT
  • the missing tooth that never emerged
  • Amy's repeated infections, including meningitis in Feb. '09 and encephalitis in Oct. '09
  • her odd reaction to both gas and I.V. anesthesia but not sedatives (versed and propofol)
  • abnormal lab values for calcium, potassium, and sodium since a young age
  • repeated sinus infections as an infant
  • muscle tenseness or rigidity
  • balance problems
  • eye tracking issues
  • resistance to treatment for seizures
  • unusual EEG patterns during seizures
  • unusual response to some medications (Benadryl, Valium, and Versed, to name a few)

He asked for permission to test Amelia's DNA for several related syndromes that could explain most - if not all - of Amy's symptoms. I had to fill out a large stack of paperwork giving permission for this testing. I admit I have an weird stress response to this, as I knew so many children with various syndromes that eventually died. I don't want to think about syndromes in the context of my own child. It crosses barriers long ago erected in my brain and challenges my beliefs about the world. (Wouldn't we all rather believe in a God of pure mercy and ignore all the other traits that might lead to our suffering?)

After she got the DNA tests taken (whole blood samples, nice that it wasn't painful, just a regular lab draw), we headed back down to ENT. By this time it was 2 p.m. and I was pretty sure I would be late for the class I was supposed to be attending at 6 p.m. (Rochester is 3 hours away on a good day with no pee stops.) Amy was exhausted, with no nap, and I was just dazed.

We waited until 3:30 to be called back. A whole team of doctors had assembled: two ENTs, a speech pathologist, and a neurologist. All to watch while the "more experienced" ENT did a laryngoscopy on Amelia. (notice that, in this video, they edited out the part where this kid was gagging and screaming and probably puking on his mom.)  The laryngoscopy went relatively well, although I did get puked on and scored an awesome neon yellow t-shirt with a diagram of the inner ear plastered right across the chest. I had some laughs picturing people squinting, staring, and leaning in for a closer look at the tiny text. Needless to say, Aaron's taking the t-shirt off my hands.

The results of that test were given after the doctors went out to consult with each other for a bit. The awesome ENT came back in to share the results. The good news is there is no sign of infection in her throat, and the thickening and growths on her vocal cords have resolved now that she has been off asthma meds for a year. Part of Amelia's soft palate is not functioning correctly, which is what is causing her difficulty swallowing and also her speech issues (hyper-nasality and trouble saying 12 different essential sounds of the English language). She probably feels a lot like me - I have vocal cord paresis, which causes me to "breathe in" my food sometimes, and also causes a numb sensation in my throat this is disconcerting. Sometimes I simply feel like I can't "figure out" how to move liquid down my throat anymore and I have to spit it out. Amy does the same thing. Only her problem is up higher, in the back of her throat and lower part of her nasal passages. Surgery is the recommended treatment, but because of our hesitancy as parents coupled with the question of a syndrome that may make surgery a poor option for Amy, we are going to try intensive speech therapy for a 6 month period to see if Amy can learn to compensate for the problem. She will be receiving speech therapy 3 times a week. The other abnormalities noted are not fixable, just part of how this little girl is made. The hoarseness in Amelia's voice is a neurological issue that will hopefully resolve as time goes on. For now, we have a tiny little Fran Drescher impersonator with a Bostonian accent!

For now, I'm concentrating on what she can do. I may join the ranks of special needs moms (I love that term, which communicates the very real truth that it is I THAT NEEDS HELP! My kid is doing fine, thank you very much) everywhere who find a way to see the good through the opacity of the bad. For now, she skips. Hops. Leaps. Somersaults. Belly laughs. Delights me with her speech abnormalities.

Who could ask for more than that?

There must be more than this
oh breath of God come breath within
There must be more than this
Spirit of God we wait for you
Fill us anew we pray

Lord have your way with us

Come like a rushing wind
Fill us with power from on high
Now set the captives free
leave us abandoned to your praise
~Consuming Fire, Tim Hughes~