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.
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.