Spying Out the Land

Last week I got a surprising phone call from the neurosurgeon’s office, telling me that they’d received the referral paperwork regarding the baclofen pump and wanted to schedule an appointment for the 26th.  I assumed she meant January 26th…nope, they were able to get us in yesterday!  I was shocked and gladdened to be moving forward so quickly.


I did not have anyone to go with me to pick Ray up on the way to the appointment.  For the first time in all these years, Abbie was having a major respiratory event while I was driving to town.  I was able to turn her oxygen up to 3 liters while driving, but I could not suction her.  She was dipping down the the mid-80s on the pulse ox as my blood pressure rose, and thoughts of pulling over on the freeway rapidly filled my head.

Stopped at a light a block from Ray’s office, my heart was groaning from the stress of Abbie’s condition and from disbelief that it “had come this”…checking out a baclofen pump.  God spoke to my heart and said, “You are not putting the pump in today, just go gather the information, go spy out the land.”  That last part, about spying brought to mind images of the twelves spies sent to the Promised Land.  My stress-induced retort was, “Well, Lord, this sure doesn’t feel like I’m looking at the Promised Land!”  I promise, I think I heard a heavenly laugh, and then heard, “Well, what exactly do you think those twelve spies thought as they peeked down on giants in the land??”   Oh yea….gotcha!  I could almost hear Joshua exhort me “Be strong and courageous, be very strong and courageous.”

Dr. M, the neurosurgeon was wonderful, and spent 45 minutes with us assessing Abbie, answering questions, and giving detailed explanations.  He was concerned about Abbie’s need for oxygen, but I just didn’t have the stamina, and did not want to consume appointment time to explain her healing cycles that come at specific times of day as a result of the many things we are doing.  He does think Abbie is a great candidate for the pump, and that it would offer much more relief than oral baclofen with significantly fewer drug side-effects.

The oral form is starting to really kick in as far as loosening her muscles, but I do think she is starting to become a little more glazed and less responsive.  Dr. M. has placed about 100 pumps, and when I asked how many families who had had a good trial (where they inject a dose into the intrathecal space to see if the medication will work), were then dissatisfied with the pump because the results were not as good as the trial.  He thought long about that, and then said he didn’t have any patients in that category, and that all the families were very happy with the outcome.

Ray and I both really liked Dr. M, and agree that the pump is the best option for Abbie right now.  Dr. M. agreed that it may be beneficial to have it placed before her hip surgery so that she is as comfortable as she can be during the recovery.  So, in the next couple of weeks he will be determining the best physician to do the trial with us, as well as the best one to manage the refills and dosing after the pump is placed.

I am excited and relieved, which surprises me.  I guess I should have known that sometimes the Promised Land lies underneath some intimidating obstacles with ugly faces.  I also realize that what God  promises is not taken by force, but by faith.  In that faith, with much reassurance, we are going to move forward to the next step in Abbie’s journey.  I don’t have any sense of when we could actually do this procedure, but I am hoping to have it done by February.

Please pray for Abbie who will be very busy cat-sitting over the next few days to allow the rest of us to go to New Orleans for the Sugar Bowl.  We are THRILLED for the chance to go support our beloved Warriors, but Abbie was getting kind of sad with all the excited travel talk flying around.  Once I “got it”, I realized we had to turn the situation into a positive for her.  Taking care of Grace was the answer.  I mentioned this to her physical therapist a couple weeks ago, and she responded by giving Abbie a “Kitty Sitting Survival Kit” for Christmas.  As I would pull each cat toy out of the stocking Abbie would grin and cluck.  She also bargained hard with her Daddy, working him all the way up to $5 per day — talk about a push-over!!

Please pray for her nurses and friends who will be caring for her in our absence, and pray especially fervently that she stays healthy.  Times like this give me temporary schizophrenia…I am so excited to experience this with our boys, but I hate to leave her here and wish with all my heart that she could go with us.

I didn’t write much about Christmas because it is a very tender spot for me.  Still painful.  Still blessed.  But, I hope that you had a wonderful celebration of the Savior’s birth with your family and friends.  I prayed much during Christmas, mostly simple short prayers of “Help me” and “Hold me together”.  I marvel at the fact that without God’s willingness to become that little baby, I would never have had a bridge over which to carry my prayers, no matter how feeble, to the foot of God’s throne.  I cannot fathom surviving without that relationship.

Will update after our return from New Orleans.  So, “Hau’oli Makahiki Hou” from the entire Vara Ohana.  May you be abundantly blessed in the New Year.  And, GO WARRIORS!

Backing Up

Yes, the whirlwind of this season caught up with me, preventing timely updates. Now with all the parties and performances done for the most part, I can try to encapsulate all that has gone on the last few weeks.

One of the most important things is that I started Abbie on oral Baclofen, a muscle relaxer, last week. Our talented Rolfer, Sally, has returned from her teaching stint in Buenos Aires, and came by last week to work with Abbie. As we discussed the highlights of the International Fascia Conference she attended in Boston recently, things which I’ve known for a long time became clearly confirmed. Fascia, or the connective tissue, is one of the primary electrical conductors in the body because it is continuous. Sally told me she learned that once there is a rent, or a tear, in the fascia it never really heals; just like the skin, it scars. Scars, like plastic, are not good conductors of electricity, and can inhibit the free flow. The idea of trying to preserve fascia for electrical reasons is something that western surgeons are not aware of and probably, at this point, couldn’t care less about. But, Sally did encourage me that if there is anything non-surgical we can do to help Abbie, we should pursue it.

Sally’s comments helped push me over the brink, and give Abbie the first dose of the Baclofen that had been sitting in my fridge for 2 weeks. I gave it to her at bedtime and she slept all night!! She awoke with a smile and with visible relief etched on her face. I gave her the second dose and waited to see if it would put her into a stupor. We played and stretched for over an hour, with her looking bright and cheerful. Perhaps this really was an answer!! Then, at 9am she fell asleep for over two hours, and no matter what we did we could not rouse her. My jubilant hope receded, and I thought again about the price of the trade-off. The second day on the medication though, she did not sleep at all. So, perhaps she was just making up for lost sleep now that her body was finally relaxed. The first three days on Baclofen produced noticeable differences in her tone, but honestly, the last 3 have not.

Seeing Abbie’s relief at any measure of help with her tone has convinced me to pursue whatever means necessary to provide it for her. She smiles every time I tell her I am giving her “muscle medicine.” She is at 30mg of Baclofen per day, and the max dosage is 40mg, so we don’t have that much more margin to work with. This prodded me to go once again to the Medtronic website — they produce the implantable device that delivers microdoses of Baclofen directly to the spinal (intrathecal) area. Although I’ve been told over and over that no one in Hawaii does this surgery, I searched the site for a provider. One neurosurgeon’s name popped up, so I called his office.

The nurse confirmed that he does indeed do the implantation surgery and then refers those patients to a neurologist to manage the dosing and refills. I asked if he accepted pediatric cases, and the nurse paused and then said, “Well, he is a pediatric neurosurgeon, so of course he does.” Wow!! She told me what they needed as far as a referral, and I then made those phone calls. I am astounded that all this time, a pediatric surgeon providing this service has been right down the road! Honestly, my joy at finding him has been a bit tempered with anger at a system that made me find this out on my own after years of telling me that no one was available. So it goes…

Cognitively, she continues to blossom, even with the new medication. She is extremely proud of being a “Super Reader”, just like the PBS show we watch while we stretch in the morning. She is bored with working on the phonetic alphabet, and lets me know in no uncertain terms that she would much rather read words. So, I’ve added her second program book, meaning that we are now working on words from A through M.

Trying to check if she is really “reading” or just recognizing familiar patterns of shapes but not attaching abstract meaning to them, I figured out a test last week. Her word for “F” is “fingers.” I showed her the word, but did not say it aloud. I then asked her where these were, and she started moving her fingers. She has done this several times since, although like everything in this journey, it doesn’t happen 100% of the time yet. However, it was enough to convince me that she really is reading.

I am finding lately, that when we take things in isolation, out of context, we often miss the overarching theme, and perhaps the most important points. This has been especially hitting me through well-known verses — you know, the ones we memorize that are a verse or two long because they are so good, and seem so applicable, without knowing what surrounds that particular snippet. The first whack on the head I got in this area was Jeremiah 29:11, “For I know the plans I have for you’ declares the Lord, ‘plans for welfare and not calamity to give you a future and a hope.'”

Like so many families I know, we have clung to this verse through some very stormy times. But, until my recent in-depth study of Daniel, I don’t recall focusing on Jeremiah 29:10, “‘For thus says the Lord, ‘When seventy years have been fulfilled for Babylon, I will visit you and fulfill my good word to you, to bring you back to this place.'”

The promises in Jer. 29:11 were given to a people in bondage in Babylon, and assured them that their years in exile were carefully numbered by God. He told them that at the end of those ordained years of suffering, He would fulfill His promises and bring them back to the place for which they longed. These specific promises were made over 100 years before the people were carried away to Babylon. Backing up to this verse made me cherish 29:11 even more as we trust God that all of the days of Abbie’s journey were divinely numbered long before her birth, each for a specific purpose, and that to us, too, He will fulfill all of His promises as He brings us out.

Knowing that it takes me a while to catch on sometimes, God hit me with this “wait, back up” pattern twice more in the last 12 hours.

Why do you say, O Jacob,
And why do you complain, O Israel,
‘My way is hidden from the Lord,
my cause is disregarded by my God“?
Do you not know?
Have you not heard?
The LORD is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and His understanding no one can fathom.
He gives strength to the weary
and increases the power of the weak…”
If you are wading through some deep water, doesn’t that just sing to your heart, like it does to mine? Would it surprise you to know that this passage ends with those familiar words, “…but those who hope in the Lord will renew their strength. They will soar on wings as eagles; they will run and not grow weary, they will walk and not be faint” (Isaiah 40:27-29, 31)
One last encouragement for you to “back up” with some of your favorite verses. On the United Nations building in New York City are inscribed these words, “…and they shall beat their swords into plowshares, and their spears into pruninghooks; nation shall not lift up sword against nation, neither shall they learn war any more” Isaiah 2:4(b)
It’s really too bad that they didn’t inscribe the whole verse, because perhaps there would be a better understanding of why men’s attempts to bring about plowshares and pruninghooks fail so miserably. The first part of Isaiah 2:4 reads, “And He shall judge among the nations, and shall rebuke many people.” Only the Sovereign Lord, the Judge of unfaltering integrity, wisdom, and knowledge, is capable of bringing the peace we all desire….and only through judgement. A totally politically incorrect idea these days, but missions begun on half of the story (or verse, as it were), relying on man’s intellect and tainted motives are doomed before they begin.
OK..there’s the Sunday School bell ringing..sorry if I kept you too late. Just know there are many treasures awaiting you, right behind some very familiar ground.