August 15, 2013

before/after: pin's room.



May 10, 2013


Pin went to a new acupressurist yesterday. 

His name is Steve (real name, Hong). He is an hour away and I have no idea what he did to Pinny. Literally, like no idea. He touched her stomach for two seconds and then proclaimed "No dyes. Never." It was as if he was channeling 4,000 years of Chinese medicine to make that statement and I hung on his every word. So, add it to the list of things she can't consume and we will add Steve to the list of people who have touched our daughter. 

Both lists are long: 

-No gluten, no dairy, no sugar, no soy, no dye. 
-Neurologists, geneticists, physical therapists, rib cage specialists, swim therapists, developmental therapists, cranial sacral therapists, neurological chiropractors (four to be exact), holistic dentists, genetic counselors, neurological reorganization practitioners, naturopathic pediatricians, prism eye specialists, head shaping people and now, acupressurists. 

The people that have come (and gone) into our lives are brilliant, leaders in their field, out-of-the box thinkers. They are not dictated by space, time nor location. Dr. Wells', our current holistic pediatrician, office hours are Mon/Wed/Fri from 8:00-10:00. PM, that is. And she is an hour and a half away. We are so grateful for the love, care and expertise that many have poured into Pinny. But, truthfully, she is three and still not sitting up on her own. Catch me on a good day and I will say this as matter-of-factly as if I were ordering my favorite dish* at my new favorite restaurant. Catch me on a bad day, and the words come out more like a howling lament. 

The fact is, we are human. Every single world-renowned neurologist, every prism-eye specialist with five patents to her name, every dungeons-and-dragons-playing cranial sacral therapist, every gay rib cage specialist. We are all human. 

At the end of the day, we need a touch from the divine. We know this. We pray daily for this. We walk forward from appointment to appointment recognizing this. We play worship music when we need a better mind-set towards this and meditate on scripture when we need our hearts to feel this. But, something hit me today, in between oxygen therapy and reading on the ramp:

Maybe, just maybe, Jesus is waiting for a touch from me.

"When she heard about Jesus, she came up behind him in the crowd and touched his cloak, because she thought, “If I just touch his clothes, I will be healed.”

Mark 5:27-28

*squid ink pasta with crab meat at Dinamo's

May 7, 2013

in honor of mother's day, meet pin's tiger mom.

Who is this cute girl with Pin in all our photos?

Her name is Ynhi Nguyen (pronunced: EE-Knee as in: eenie meenie miney mo, Win) and she is a God-send.

She is our nanny, babysitter, friend, counselor, patient, taste-tester and one mean Tiger Mama (in the best way possible). When she isn't at our home, she is in class full-time becoming a nurse at Bon Secours, finishing her biology degree at VCU, doing nails at her mom's salon (bonus perk for me, too), playing volleyball at open gym, or clubbing (this is very rare...but still needs to be noted).

She helps us six days a week with neurological therapy for Pin. Five of the six days, arriving at 6:30 am to assist me & Jer in a three-person therapy called homolateral patterning. Ynhi leads with Pin's head, me and Jer, moving the sides. Some mornings, we grumble at each other. Other times, make up songs or fill in new lyrics to old tunes. But always, when the five minute buzzer sounds indicating the therapy is finished, we arouse in applause to cheer Pin on...maybe ourselves too. Most mornings, Pin swims (the pattern looks like a swim stroke) to Cuba. She always makes it right before night-fall, before the jellyfish float to the surface. She is most often swimming south in search of the Havana music scene or in a rare case, to become a world-famous cigar roller.

Ynhi demands a lot from Pin. She always does ONE MORE vestibular, oxygen therapy, etc. before heading out the door. I no longer feel behind the 8-ball every single morning...and THIS is life-changing. Meds are being pullled on-time, detox drops are dispensed, lentil soup made before 8 am. This summer, I will continue to unpack boxes downstairs, while Ynhi is doing therapy with Pin upstairs. Just typing those words feels like a weight is falling off. Ynhi is a major reason, as I said on facebook, that we are approaching a season of healing. I finally have time to face all the extras (stuff, weight, negative memories) that we keep dragging with us month after month. Her kindess, love and commitment to learn my wacky, organic, gluten-free/everything-free, unconventional therapy ways is not easy nor normal, but so appreciated.

When Pin is well, I will have God (and Ynhi) to thank.

Happy Mother's Day, TM. We love you.

May 2, 2013

triple crown party.

happy 3, pin. we adore you.

January 1, 2013

happy 2o13.

"Every Moment in 2013, God Will Be Doing 10,000 Things in Your Life"
  written by: John Piper
 “God is always doing 10,000 things in your life, and you may be aware of three of them.” That was one of our most widely spread tweets in 2012. So we want to say it again for 2013 and make this promise even more solid.
Not only may you see a tiny fraction of what God is doing in your life; the part you do see may make no sense to you.
  • You may find yourself in prison, and God may be advancing the gospel among the guards, and making the free brothers bold. (Philippians 1:12–14).
  • You may find yourself with a painful thorn, and God may be making the power of Christ more beautiful in weakness. (2 Corinthians 12:8)
  • You may find yourself with a dead brother that Jesus could have healed, and God may be preparing to show his glory. (John 11)
  • You may find yourself sold into slavery, accused falsely of sexual abuse, and forgotten in a prison cell, and God may be preparing you to rule a nation. (Genesis 37-50)
  • You may wonder why a loved one is left in unbelief so long, and find that God is preparing a picture of his patience and a powerful missionary. (Galatians 1:151 Timothy 1:12-16)
  • You may live in all purity and humility and truth only to end rejected and killed, and God may be making a parable of his Son and an extension of his merciful sufferings in yours. (Isaiah 53:3Mark 8:31Colossians 1:24)
  • You may walk through famine, be driven from your homeland, lose husband and sons, and be left desolate with one foreign daughter-in-law, and God may be making you and ancestor of a king. (Ruth 1–4)
  • You may find the best counselor you’ve ever known giving foolish advice, and God may be preparing the destruction of your enemy. (2 Samuel 17:14)
  • You may be a sexually pure single person and yet accused of immorality, and God may be preparing you as a virgin blessing in ways no one can dream. (Luke 1:35)
  • You may not be able to sleep and look in a random book, and God may be preparing to shame your arrogant enemy and rescue a condemned people. (Esther 6:1–11)
  • You may be shamed and hurt, and God may be confirming your standing as his child and purifying you for the highest inheritance. (Hebrews 12:5–11)
There are three granite foundation stones under this confidence for 2013: God’s love. God’s sovereignty. God’s wisdom.
Love: In the death of Christ on our behalf God has totally removed his wrath from us (Romans 8:3Galatians 3:13). Now there is not only no condemnation (Romans 8:1), but now God is only merciful (Romans 8:32). Even his discipline is all mercy.
Sovereignty: There is no power in the universe that can stop him from fulfilling his totally good plans for you. “I know that you can do all things, and that no purpose of yours can be thwarted” (Job 42:2).
Wisdom: God’s infinite wisdom always sees a way to bring the greatest good out of the most painful and complex situations. “Oh, the depth of the riches and wisdom and knowledge of God! How unsearchable are his judgments and how inscrutable his ways!” (Romans 11:33).
Therefore, no matter what you face this year, God will be doing 10,000 things in your life that you cannot see. Trust him. Love him. And they will all be good for you.

October 18, 2012

this is a job for a professional organizer.

In the 90's, I had a small professional organizing business (see business card). I worked in closets, kitchens and even helped people electronically "retrieve information." I still LOVE organizing my life and all its contents. I am actually a little intense about everything having a "space" (see PAPER cabinet, PARTY cabinet and WRAP cabinet).

But, I will soon take on the biggest (and most-important) organizational job of my life: my daughter's nervous system.

I heard of Nina Jonio a week ago, chatted with her on Monday and on November 8, Pin and I will head to Raleigh to meet her in person. She is based in Portland and is a Neurological Re-organizer. Nina meets up with all her clients in various cities, every three months, on appointment "tours." She is experienced and successful and has tons of HOPE for our little Pin. And boy, do we love hope.

Here is a lengthy, but very informative overview on Neurological Reorganization:


September 29, 2012

a holistic hope.

April 2011, a college friend who was following Pin's story, asked if she could contact me. She called me shortly after and began to share her story of Oral Systemic Balance. Her body, a very busy homeschool mom of six, had had it. Worn-down, anxiety-filled, she set out on a two year quest trying to get answers. Her journey ended when she met a radical dentist (go figure) in Tacoma, Washington.

He took one look in her mouth and declared that her tongue was blocking her airway and wreaking havoc on her body's systems. With much skepticism, she thought she would give his belief and procedures a 'try'. Her success and the countless other stories she witnessed while sitting at her appointments, led her straight to us.

I called that dentist's office that same day, a year and 7 months ago. I spoke several times to an admin whose daughter had seizures and now is seizure-free, thanks to that dentist. The admin sent me two names of dentists "in my area" that were familiar with this procedure. One in River Falls, Wisconsin and the other in Fredrickburg, Virginia. 

I thought about Pin and the observations I made early on (day ONE of life), how she hated things in her mouth. She refused a paci, her suck was weak, etc., to me it almost seemed like a defense mechanism.

I was dead set on trying OSB for Pin. But the timing wasn't right. 

Jeremy wasn't on-board. We lived in Chicago. And Pin was unstable.

Then, a year and a 4 months later, after searching nation-wide,  Jeremy got his DREAM job in Richmond, Virginia. A short 55 miles from Fredricksburg and all the pieces fell into place. 

Last week, Pin started Oral Systemic Balance. 

September 28, 2012

update on life.

I will make this short: the past six months have been a living hell. 

It all started in April when Pin's movements came back. I freaked out.

I was "on-duty" full time (Jeremy was in VA already) all while trying to pack our entire condo, wrap-up therapists & doctors and say goodbye to our closest friends and family.

A quick overnight hospital stay in Illinois and "more" medicine offered no more insight.

Then, we moved.

We bought our first home. It is 109 years old. She is a beauty...full of personality and charm but needs some serious botox. And probably a "lift and tuck" but, who doesn't?

More medication. More movements. More medication. More movements.

Then, an ER visit and three-day hospital stay in North Carolina. I freaked out again, literally YELLING AT DOCTORS THREATENING TO YANK MY DAUGHTER OUT OF THE HOSPITAL WITHOUT DISCHARGE PAPERS (clearly, I am the one who needs the meds). Then, an at-home EEG in NC. Finally, movements were caught on the EEG and we were told they "were not seizures." What?

Then, my amazing grandma died.

Then, an ER visit and two-day hospital stay in Virginia. Again, movements were captured but had no epileptic correlate. More freaking, more questions.

In three hospitals, in three states, I begged the Lord that He would show grace and mercy on us. I pleaded with Him that He would not have us walk down the "infantile spasm" road again and that they would ONLY be "seizures." He did one better:

(apparently our daughter has a bad case.) 

A GI study last week confirmed this information and we are now pulling off seizure meds and upping antacids.

To say we are THANKFUL (and in need of a tan), is an understatement. We are beyond grateful for the Lord's kindness and love towards us. We still question, we still are disappointed, we still have pain BUT we still pray, we still have faith and we still believe there is a God who is good. So, we still wait.


I NEVER did go on those meds and I'm happy to report I'm still as crazy as ever.