1 can chili beans in hot sauce (check labels for added sugar)
1/2 jar no-sugar-added hot chipotle salsa
1 can no-sodium-added corn
2 cups good quality cheddar cheese
Head toward the classy side of the beverage bridge.
Keep the left-overs for soup (or the chickens).
Add a few kids, blend, and enjoy the results!
**Disclaimer: photos from our failed cheering on of the Bears in the NFC championship game. We may live in Wisconsin, but we weren't born here! That said, GO STEELERS!**
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.
There is just something different about having a little boy in the house. I came into my bedroom on Monday to find this...
I immediately backed away quietly to grab my camera and when I came back, he was still unaware and high up on the window sill. The snow sparkling on the hill outside our bedroom window must have beckoned him climb up.
We all need a dose of new perspective every now and then. I get it occasionally when I stoop to my son's level and see the world from a new angle.
Yesterday I got a dose of new spiritual perspective. I know I'm redeemed. I know He says He won't remember my sins anymore. That, theoretically, I'm hid away in Christ.
But it just hasn't made a dent.
I think I saw it for the very first time yesterday. My mom reminded me that she tried to tell me on my 21st birthday, papering the walls with all the words God uses to describe us, His children. But sometimes, in our extreme efforts to block out pain, we toss out the baby with the bathwater. We block out love because accepting love makes us vulnerable. Right at the moment, I feel somewhat like the walking wounded, and there's no way I'm putting my heart on my sleeve.
But the God who formed the universe sees right through every wall I erect to protect myself. I always pictured those divine eyes lasers cutting right through and straight to my sin. What if He sees me, and thinks it's lovely?
I have blotted out your transgressions like a cloud and your sins like mist; return to me, for I have redeemed you. I am he who blots out your transgressions, for my own sake, and remembers your sins no more. (Isaiah 43:22 & 25)
Why does He blot out our transgressions for "His own sake"? I read 16 different commentaries on this subject, and couldn't find anything much mentioning that particular part of the verse. It seems rational to think He does so because of one of two things: 1) He blots them out so that He can restore us to relationship with Him, thus receiving glory, or 2) He blots them out and remembers them no more because we have received the Holy Spirit as a seal of our inheritance through belief in His payment for our sins, and now, when He looks at us He sees Christ, not our old sin.
Just in case you like Greek and lexicons and the technical information, like I do, look at what Strong's has to say about the word translated to "redemption" from Colossians 1:13-14: For he has rescued us from the dominion of darkness and brought us into the kingdom of the Son he loves, in whom we have redemption, the forgiveness of sins.
629 / ἀπολύτρωσις / apolýtrōsis ("redemption, re-purchase") emphasizes the distance ("safety-margin") that results between the rescued person, and what previously enslaved them. For the believer, the prefix (575 /apó) looks back to God's effective work of grace, purchasing them from the debt of sin and bringing them to their new status (being in Christ).
New perspective, isn't it? The view from this new angle is refreshing...and scary. If I'm going to think this new way, then I have a lot of reconstruction to do in my mind. It's always a bit intimidating to stare straight in the face of your own preconceptions and assumptions and admit, "I've thought it all my life, but maybe it's wrong." How many lies are implanted in our hearts that become so much a part of our life story that we never even give them a second glance?
We are at Mayo Clinic in Rochester today for another round of appointments for Amelia. She is having her hearing and vision tested, meeting for a second time with a speech pathologist and ear/nose/throat specialist, and having her throat "scoped". They will give her a tiny bit of sedation for this, but will be asking her to speak to them while the scope is in place. It appears she developed a fistula (a hollowed out space that did not heal properly) between her soft palate and upper pharynx (nasal area) after her tonsillectomy and adenoidectomy last year that preceded her encephalitis. Today they will be trying to confirm whether this abnormal area is still a source for infection, and whether or not surgical treatment would be their recommended course of action (we are a bit leery of that, for obvious reasons!). They will also be scraping her vocal cords for a sample for infection or other problems, as she continues to have polyps (abnormal growths) on her vocal cords.
Mayo has become part of our "new normal" for the most part...but I am a bit tense about tomorrow. Sedation scares me, and I hate to see my daughter in pain. Could you pray for these specific things?
Amy wouldn't have pain during the procedure
She would be willing/able to cooperate fully
They would obtain the necessary samples
Wisdom for this new set of doctors
Easy travel with the four kids
Fun visit with our friends, whose baby is in the NICU there
We got lost again
Drove to the end of a road And a red faced man Told us to do what we're told And on the 23rd night Things ain't bad but things ain't right
Are we falling or flying
Are we falling or flying
Are we living or dying
The air's so heavy
It could drown a butterfly
If it flew too high And on the 35th morning Things ain't good but things ain't boring
Are we falling or flying
Are we falling or flying
Are we living or dying
Sometimes it's hard to tell
If there's a life behind a song But i know tomorrow Today won't feel so long
Cause on the 42nd night
The room was dark but the stage was bright
Are we falling or flying
Are we falling or flying
Are we living or dying Cause my friend this too shall pass
So play every show like it's your last
~excerpted from "Flying or Falling", by - you guessed it - Grace Potter!~
It's been a long day. I could make a "pros and cons" list of the day, and I would come out thinking it was a great day. But for some reason, it was heavy. Heavy on my mind, my heart. I get ready to face some things I'm not ready to face. And I wonder, if I'm falling or flying. Living or dying. I know I'm dying...I know I'm living, like never before, as I walk these particular steps on the winding path to my grave. Pain from all directions, and joy flowing in through the cracks.
I can't spell it out...but I need your prayers.
Pray I'll be flying - on eagle's wings, by His power.
