EEG

When they told me that Abbie needed to be awake for six hours prior to yesterday’s EEG test, I promptly scheduled an afternoon appointment. I figured it would be a lot easier (on me) to keep her awake between 7am and 1 pm than between 3 and 9 am. We had a few moments of close-calls, but managed to keep her eyes open until we arrived at the hospital at 1:30.

They needed to hook her up, get some readings while she was awake, and then some after she’d fallen asleep. Piece of cake — or not. We finally unhooked her at 4pm, without her ever having shut her eyes! That girl….every little sound from the hallway caught her attention. Water running through the pipes, a door closing, the boy next door in Xray wailing because he had a broken arm.

I asked the tech if we would need to come back to redo it to get sleep readings, and she said she didn’t think so. Her answer basically told me the results of the test, but I thought I’d have to wait at least a week to hear the official results from the neurologist.

After returning home from my taxi-mom duties later that evening, there was already a message on the machine from Dr. Y, the neurologist, explaining that there was seizure activity noted on the EEG, and that we should not move forward with weaning Abbie off of her medication.

A couple years ago this news would have crushed me. From the beginning of this journey, getting off of medications, or not needing new ones, was a sign of progress, a way for Abbie to show she is worthy of the investment of time, energy, and yes – -money, that it takes to help a brain-injured person recover. She has many more ways to make her case now!

Every time she looked around to find the source of the sleep-stealing noise, as I watched her brows furrow in concern and empathy for the injured boy, and as I watched her grin at the tech who took the leads off her head I realized that THESE were the EEG results I was truly interested in. We hadn’t been in that room for 3 years, and Abbie is a much different girl now. I can accept the seizure activity as new circuits in her brain bump up against the scarring that protected her brain after the injury. I can live with giving her a medication twice a day, and I will stomach writing its name on every medical document, if in exchange I get a happy, bright, smiley engaged girl. I think we’ve gotten a good deal.

To quote a dear friend: “Onward and Upward!!”

Two Thumbs Way “UP”!

Yesterday brought another bonus of living in Hawaii: King Kamehameha Day. Ray had the day off, so we enjoyed it as a family. Abbie swam with her Daddy and I for about half an hour. By the end of our time in the pool, her body was moving through the water like a ballerina…all the muscle tone and restriction was gone. I momentarily wished we could grow tails and live in the water.

In the evening we decided to try to take Abbie to the movies again. It has been two-and-a-half years since our last attempt, during which she lasted five minutes. My heart was gladdened by the boys all cancelling their plans so that we could go as a family.

The movie “Up” proves that good, quality movies CAN be made today, and I was so relieved that it provided colorful adventure, good themes, and sweet comedy without any unwanted surprises or mature double entendres. Abbie was sitting in her wheelchair during the previews, but as it is a loaner chair, it doesn’t fit her quite perfectly. “Why leave her there?” I wondered. So, I moved her onto my lap for the movie, which allowed us to have little conversations (me whispering, her squeezing my hand.)

She was attentive the whole time, and smiled at the funny parts. I relished having her sit, completely relaxed on my lap. I looked down the row, and saw our entire family…a very sweet time.

She fell asleep on the walk home, and had dreams of colorful balloons, a floating house and silly bird, I am sure.

Link for the news story

A big mahalo to Gina Mangieri, the KHON reporter who came to the house and edited a lengthy interview to produce a piece that I think turned out well. She made talking about a difficult subject very easy, and I am grateful that they frame the story in a very hopeful, positive way.

Here is the link to see the video:

http://www.khon2.com/news/local/story/UH-Gets-Brain-Injury-Resource-Distinction/oD4wA5vgvUOz1wYzZVax6g.cspx

Sorry that I couldn’t get it to hyperlink, so you will have to cut and paste it into your browser.

Hope you are having a great weekend!

Abbie on the News Friday Evening

Just want to let all the local folks know that Miss Abbie and I will be in a piece that KHON, Channel 2, will be running at 5,6,and 11 tomorrow night (6/5). I found out around 10am today that they would be at the house at 11:30.

Hmmmm…no nursing help…a quick survey of the house – yikes. A quick look in the mirror – double yikes. We managed to get Abbie in the bath, dressed and looking great, the house put together, and me into the shower and at least dressed in clean clothes. No woman wants to be caught on camera without makeup and jewelery on, but it was more than I could fit into the whirlwind this morning. I suppose the viewing audience will be treated to reality TV, Vara-style. (triple yikes).

We will be part of a story announcing the selection of the Center for Disabilites Studies at UH as the Hawaii Center for Excellence for the Sarah Jane Brain Project for Pediatric Aquired Brain Injuries. Finally, there is hope of a national network collaborating to find solutions. I am hopeful the SJBP will give a voice to the millions of brain injury families currently without a ribbon, march, or national fundraiser. We’ve all been quietly struggling to achieve recovery in isolation. There is power, and there is renewed hope, in numbers. I am confident there will be much more to follow on this issue.

There have also been a couple more great things happen just since the last update. We visited Abbie’s neurologist on Tuesday, so I was prepared for a scolding. You see, her medications have begun to make her very sleepy in the morning. I gave them separately a few times to see which one was the culprit. Surprisingly, it wasn’t the spasticity med (Baclofen)but rather the seizure med (Trileptal)that was knocking her out. So, I started lowering her morning dose very slowly. Not generally something you should do without first consulting the neurologist, but I felt confident that Abbie could tolerate a slow weaning.

That is, I felt confident until I was sitting in Dr. Y.’s office and had to fess up. Instead of delivering a tongue-lashing, he broke into a grin and said, “Well, then let’s do a proper weaning trial!” This involves a pre-wean EEG, then the weaning, followed by a post-wean EEG. I was thrilled by his support, but even more encouraged by what he said next. “If she fails this weaning attempt, then we will just try it again in a year. If that one doesn’t work, we’ll wait another year and then try again. I think that getting her off this med is the next big milestone we are shooting for.” Oh…my….goodness. To have a neurologist commit to trying again and again — blessing beyond measure!

In PT on Wednesday, her therapist turned to me at one point and said, “I don’t know what you guys are doing lately, but just keep doing it. She is changing so much, getting stronger, having better vision….just keep it up!” Days like that are really fun.

Joyful Whirlwind

The reality of parenting an “adult” hit me square in the face a couple days ago, when my eldest son approached me in the kitchen and said, “Hey mom, a few friends and I are going skydiving on Wednesday.” Period. End of story. No groveling, no “pretty-please-I’ll-take-out-the-garbage-for-a-month” requests. Not even a cheerful assurance of his survival. As the requisite motherly reproach rose in my throat, I realized that as an eighteen-year-old he can sign any consent form he wants. How did we go from permission to get out of bed for water, to skydiving on a whim…where did the time go???

That’s been the theme of the last month, as we experienced together the joy of a sublime baccalaureate service, held at Central Union, the beautiful stone church next to the children’s hospital. I watched Chase and his classmates file into their pews under the enormous, gilded proclamation “Love Never Faileth.” I don’t know how many times during the service I looked up at those words, replaying the nights I spent next door, looking at the light in the steeple, praying for our girl to survive. With each passing day back then I came to believe more fervently that Love Always Wins. I cannot say how, or when, but I do know why. We would whisper it to Abbie, and in the mirror to ourselves. So, when I discovered a couple of years later, that the same sentiment, in more proper language, was inside the church that had buoyed my spirit, I felt God saying, “You heard my heart.” It seemed an exquisitely personalized gift from God to see Chase sit beneath those words in his white robe on such a spectacular evening.

The next day, we sat in the midst of Mid-Pacific Institute’s beautiful campus, facing the verdant mountains standing guard, feeling the gentle breezes and occasional sprinkle that typify Manoa Valley, recalling the first time we stepped onto that field. It was the night of freshman orientation. We had applied very late for Mid-Pac, and Chase was accepted off the waiting list…an extraordinary blessing. My heart was grinding in my chest, as we came to terms with yet another loss as the result of Abbie’s injury. I kept Chase home for a year more of homeschooling after she got hurt, but I knew that I could not do justice to a high school education given the demands of Abbie’s care. The bittersweetness of his acceptance at Mid-Pac almost dimmed my sight that night…but not enough to prevent God from grabbing me on that field. A rainbow was shimmering through the mist above, flowers hung heavy on the trees, and the breeze gave me a much-needed hug. This was right where God wanted Chase, and Abbie had helped get him there. There are few moments that have held such clarity as that one, nor as much gratitude.

At the conclusion of the ceremony, Chase was draped in lei up to his chin. I approached him to give him one more, very special one. Fragrant pikake and innocent pink rosebuds. “This one is from your little sister, ” I said, and drew him into a hug. He clung tightly and began to cry a bit….”It’s because of her that I am here.” I wasn’t sure, on a night full of such emotions and endings, that he would recall the beginning as clearly as I. Her blessings are recognized and reverenced by her brothers, which makes me proud of all of them.


Chase’s diploma framed by Abbie’s lei

As far as Miss Abbie, she is just in a great place lately! She is enjoying getting in the pool each day, and does so well. If I hold her around her waist, she can control her upper body and head just fine. If I hold her under her arms we can “motorboat” around the shallow end. She will kick her legs a bit, when she is not shivering, and will hold her head up nicely when swimming on her stomach. She was laughing so loud the other day, that Kyle had to come see what was going on. That’s when he snapped these pictures:


“Look at me hold my head up!!”


Abbie’s laugh is infectious


God is great, and life is good!!

Abbie has grown four inches in the last six months! She is too big for her lovely purple wheelchair, so she’s using a loaner. It’s pink, but it also has the word “Precious” stitched on the seat — her brothers thought that was very appropriate. We are in the midst of determining what her next chair will be, and the therapists agree that we should purchase a frame that will accommodate a motor, as they have been thinking about trying Abbie in a motorized wheelchair for a while. Abbie’s vision and motor skills are improving to the point that we would like to give her a little independence when it comes to movement. Even if she could just drive herself around a bit in open spaces like the park, or gym or mall, that would be sweet indeed!

This morning she awoke with so many smiles that I finally said, “You must have had very sweet dreams last night!” Big grin. “What did you dream about?” I asked. Her legs started moving back and forth. “Did you dream about running around?” Big grin. Oh, that day is coming, I tell you, that day is coming….