Although my updates have become (very) intermittent, I always like to write something on May 10th — the date we agreed to disconnect life support and allow our baby girl to go to Heaven. This day reminds me every year that Abbie made a choice, and she owns this journey completely.
So, I thought it would be a great time to share with you what the 2013 leg of this expedition has been like so far. We’ve certainly experienced things with Abbie that we’d never seen before and never expected.
Abbie had been exhibiting more seizure activity during the previous few months, which we chalked up to puberty, now in full-swing. Something tickled my memory, and I recalled how supplemental Vitamin D had helped her in this area in the past. So, at the first of the year I bumped up her dose.
The seizures stopped almost immediately and almost completely.
This led me to begin slowly, very slowly tapering the amount of seizure medication (Trileptal) Abbie is taking. She went from 6mls twice a day to 4mls twice a day. I was envisioning the last dose with glee, but then the path took another turn.
Finally, after a couple years of false starts, an Advanced Biomechanical Rehabilitation (ABR) trainer, Gavin Broomes, visited Hawaii. I coordinated workshops for families and professionals, and those went very well. But, of course, my deepest motivation was what we could do to help Miss Abbie.
Gavin visited our home to train me and Abbie’s nurses in gentle, manual techniques which would build strength, move fluid, and restore structure from the inside out..starting at the deepest layers of the core and then eventually cascading to her extremities.
One thing Gavin noted was that Abbie’s upper chest did not move when she breathed. Like many quadraplegics, she stomach-breathed exclusively, and had the trademark flaring ribs to prove it.
As he showed us a technique to use on her upper chest, he told us that consistent application would change her respiratory mechanics and get those upper lobes involved in breathing again.
“Yeah!” I said excitedly.
“Well, yes, ‘Yeah’, but…” countered Gavin, deflating my joy balloon, “you must realize that right now her upper lobes are stagnant, like a swamp. In order to start working well again, the swamp must be drained, and that can look ugly. Families usually see one of two things: lots of white, foamy secretions pouring out, or thick, gunky, yellow secretions being coughed out. When you see either of these, don’t freak out, and don’t stop treating her chest…keep it up and get her through it.”
“Got it, ” I thought. ABR is an incremental approach…results come if input is given consistently over time. I committed to just putting our heads down and doing it for 6 months before we looked up to check progress.
So, off we went on our long ABR adventure.
Except, we forgot about Abbie’s “Warp Speed” switch. Two days after starting to work on her chest, the girl who never has a runny nose had foamy white secretions literally pouring out day and night. This lasted for two straight days. Recalling Gavin’s advice, we just kept working on her chest.
Two days after the secretions stopped, I looked at Abbie’s upper chest and saw it moving as she breathed. I needed assurance that I wasn’t “hopeful observing”, and asked her therapists to check it the next week.
“Oh my gosh,” they said, “her respiratory mechanics have completely changed” So, it wasn’t a mirage, and in a week we’d had a big change. She now breathed almost silently, lacking the rattle in her trachea that has become part of our background soundtrack. She began sleeping through the night without needing to be suctioned. Let me say that again. She is sleeping Through. The. Night. Completely life-changing for us, and so wonderful for her to have deep, peaceful, healing sleep each night.
At the beginning of the month I was just about to give Abbie her 10pm dose of Baclofen, when I noticed how beautifully relaxed her body was and stopped in my tracks. Abbie has been on the max oral dose of Baclofen (5mg three times a day) since 2007, to help keep her body soft and pliable.
“Why in the world am I about to give this sweet little rag doll medication to relax her?”
So, that’s the night I began trimming her dosage. Any medication that acts upon the nervous system must be weaned gently and deliberately, but I was excited to begin this process that I never thought we would undertake. This meant, though, that I needed to stop weaning the seizure med, because we can only safely change one variable at a time.
We continued bit by bit, milliliter by milliliter, to get closer to the Baclofen-free zone. With each reduction, Abbie seemed to get brighter and brighter. The medication, meant to sedate muscles, has a global effect and so can’t target only the parts of the body that are challenging, but acts on everything. We also noticed that Abbie was moving more, as her muscles were now coming out of drug-induced weakness.
Abbie’s horseback riding buddy, Patti, sits right behind Abbie when they are on Pooh. One Tuesday, Patti commented, “You know, we have some kids who look like they sit more independently than Abbie, and may even be able to hold the reins, but I am telling you, Abbie has the strongest core of any child we work with.” Woo-hoo…the combination of ABR and decreasing Baclofen was beginning to really show results.
We went to Washington State on Spring Break at the end of the month. Abbie did not need one whisper of oxygen on the flight, nor in the dry, wintery elevation of our mountain home. She was a rock star…continuing to sleep through the night. It was the best Spring Break ever for me, as I wasn’t dragged down by the exhaustion that always comes with being up in the night many times.
We flew home on a Sunday afternoon, and Abbie slept the whole way which made for such an easy flight. I worried, though, that I would pay for it when she wanted an all-night party in return.
But, she slept through that night as well. I was so relieved, not yet realizing that this was a foreshadowing of the strange, strange month awaiting us.
Abbie was still sleepy on April Fool’s Day, but did interact with me in the afternoon about some important things, sacred things. I will share those in a special post one day. But, as we were rocking and sharing special time, I noticed she was smiling at me. I was troubled, though, because I didn’t see her dimple. Then, it hit me. Her dimple is on the right side. She was smiling with the left side of her mouth…the side that hasn’t been able to smile since her injury. She was smiling with her whole mouth…her whole face!! I began to weep and laugh simultaneously.
Abbie realized she was really onto something and gave smile after smile to continued laughter and cheers. I will never forget the heart-squeezing sensation, seeing something I thought would never appear again. She is STILL on her way back. She is STILL climbing that mountain.
It was also on this day that I gave her the last dose of Baclofen.
On Tuesday she was very grumpy. I finally figured out she had a headache and gave her some medicine to help calm her. The same pattern happened on Wednesday. I tried to keep her comfortable, and she slept most of the day and all of each night. Finally, I realized that something important could be the root of the discomfort and headaches.
Baclofen works partially by slowing down electrical activity. I know from Dr. Tennant’s work that, at its root, healing is basically an electrical event in the body. Normal operating “voltage” is around -22mV, but to heal something voltage must rise to at least -50mV. I wondered if removing the Baclofen barrier had unleashed some healing Abbie’s body had been longing to undertake.
I have a device Dr. Tennant invented, the Biomodulator, that, among other functions, allows me to assess Abbie’s voltage at key points. Sure enough, down by her coccyx I found a point that was way over -50mV. Something was up.
I began a new series of treatments Dr. Tennant had suggested, and within two days, 11 out of the 12 points I tested were above -50mV. It was on this day that Abbie went to sleep…for 24 days.
For those weeks she was literally sleeping 23 to 24 hours per day. When she was awake she was groggy and not herself. She had no fever, was breathing beautifully, and digesting well. I knew she was healing, so I just let her be, and asked everyone else to remain calm and give her peace and quiet.
We cancelled all of her tutoring sessions, we skipped horseback riding, we tried to convince a new nurse that we weren’t delusional…Abbie really did interact and learn when she was awake.
She just slept, and slept, and slept, no matter what we did…bathing her, dressing her, pushing her around outside in her wheelchair. Zzzzzzz. But, to my eyes, something incredible was silently afoot.
We went to therapy to work on her Theratogs (an orthotic garment for her trunk and hips). While we were there, her PT noted redness on her right ribs, created by the wheelchair. The custom-fitted seat is curved in on the right side to support her, but Abbie’s body is getting straighter and rounding out, so the seat doesn’t fit her properly anymore. We are going to have to get it flared out to fit Abbie’s normalizing body! This never happens with wheelchairs…kids getting better and needing less support…this is a huge step!
We also visited the neurologist, in order for me to confess my free-lance medication management. I prepared for a tongue-lashing, but was met with encouragement. He assessed Abbie’s (deeply asleep) body and was pleased. He also gave the thumbs up to restarting the seizure med weaning, 1ml per month, which makes Christmas the target for complete elimination of nervous system medication.
Abbie emerged from her quilt-covered hibernation brighter than I’ve ever seen her. The first day her eyes were fully open I could tell her concentration was consumed by getting them to work in synch.
Flipping back through my mental files I recalled what we did years ago to help her regain sight. Big red words on white flashcards. I grabbed a small whiteboard, a red marker and paused to think about which words would be most compelling to her.
Of course. The names of people who love her!
I started with Dad. She seemed overjoyed to have something to focus on and look at. I went on to Mom. Chase. (big smile). Kyle (flashing eyes and dimple). RJ (moving her body) and Matt (grin). And, then I wrote, “Genevieve”…she erupted! Vocalizing and smiling. I guess we know who is her favorite!
May 3rd came, the 9th anniversary of her drowning. Ray called to check on me that morning, and I said, “It’s just another day…really…Abbie and I are having a great morning, and there are no tears on the horizon. She is just amazing!” And, for the first time, midnight came and not one tear had streamed down my cheek.
The power of passing time? Perhaps. The joy in my heart from being with my amazing girl who is getting better each day? Absolutely.
So, here we are on May 10th, with a young lady who chose not only to stay here, but to make her own pathway toward health and renewal. Every day she is changing. Every day brings a sweet new surprise. Every day we are so profoundly grateful!
I owe thanks to countless people who have supported Abbie and walked with us. But, here I must recognize two men whose perseverance in their separate areas of research, development, and treatment have resulted, I am convinced, in the pathway Abbie has been waiting for all these years, bound in her body. Dr. Jerry Tennant and Leonid Blyum…I wish you could see the dimpled-smiles of gratitude and relief, and hear the songs of overflowing joy and laughter our girl sings these days.