A Mystery Solved?

Today we visited a new neurologist, to discuss him managing the Baclofen pump for Abbie. We spent an hour talking, and spent only a minute or two on the pump...just long enough to agree that it is not the solution for Abbie. The first portion of that hour challenged me greatly, as we looked in depth at both of Abbie's MRIs, one right after her injury, and one from a few months ago. ( I must give a disclaimer up front that there may be too much info in this update for some, but we've learned something so important today that I want to share it in enough detail for other brain injury families.)

We've never had an indepth explanation of the injured areas, so I really valued the time Dr. Y. spent going structure by structure. It broke my heart, and I had a decision to make. I could either look at this very devastated brain and sink into despair about what may never be, or I could look at the images with reverence and complete awe, wondering how Abbie could have survived, and how she can possibly be doing what she is doing these days.

There is not one area in her brain that is untouched by her injury. Even her brainstem has evidence of damage and is not the normal shape. The ventricles are enormous, now filled with fluid to make up for tissue that has been lost. The Dr. said a few times, "This is chronic, this is not going to change or get better." Thankfully, he was kind and I knew he was on Abbie's side, so that didn't hurt as badly as it could have. And, I have learned to trust in Abbie and in God more than films and prognoses.

Things got very interesting however, when Dr. Y. said, "Looking at these images, I actually think Abbie has two different things going on with her muscles. She obviously has spasticity, but underlying that is a movement disorder, called dystonia, where the muscles fight each other instead of one contracting and one relaxing. When you give her something like baclofen or tizanidine, it works for a short while, but then unmasks the underlying dystonia, so then things get even worse than they were. My mouth was agape, I am sure, because that's EXACTLY what we saw in Abbie when we tried these drugs again after three years of not using them. No one could explain why a drug that was supposed to help actually made her tighter....until today.

He told us all this while Abbie was in the hall, so she wouldn't have to hear the discussion. As soon as I wheeled her in, he took a look at her hands and called it "classic dystonia." Most people who hold their thumbs on their palms (cortical fisting) pull their hands inward. Abbie's have always been flexed up. He then looked at her feet and said the same thing...the outward rotation and the position she holds them in are hallmarks of dystonia.

The great news is that there is a medication to help with this problem! So , the plan is to take her off Tizanidine, put her back on Baclofen, titrate up to a good dose, and then add Artane for the dystonia. Using this method he gets results equal to those of the pumps he's implanted, so he prefers not to do something invasive, and incur all the risks of having an implant, if we can stick with oral meds. I am VERY happy to go along with that line of thinking!

I am comforted to finally have an answer to my question of "WHY?" about her hips. I was so frustrated with myself for allowing her hips to dislocate when I knew in my heart it could have been avoided. I thought I should've had her standing sooner and more often (true), that we could've done some things differently in the first year (true), but now I realize those things wouldn't have compensated for the fact that Abbie had untreated dystonia pulling on her femurs, that was actually heightened by baclofen. Her hips DID NOT have to dislocate and deform, if the dystonia would have been properly diagnosed and treated early on. You can probably envision the tears of rage, disappointment, and sadness that I've shed today. We seem to always have to learn everything the hard way, taking the longest route possible. So, I am hoping that Abbie's story may help other families who are perhaps dealing with some of these same issues.

What I am holding on to , as the despair and anger try to cross the moat, is that now we can help Abbie. There is hope that we can make her more comfortable and more able to move. She doesn't need to walk for her quality of life to improve dramatically...enough arm and hand movement for her to work a complex communication device, better coordination with her eyes to allow her to see well, using her tongue well enough to eat again...these would be huge, and I think they may be realistic. Just knowing that we only have one surgery on the horizon and not two lowers my shoulders at least two inches.

When my grasp slipped today, the rope of God's love, tossed out by a caring woman, rescued me. I ran into Dawn at the elevators on Monday, and she said she'd recently been thinking of Abbie and I as she did her Bible study. (How she said it was too humbling and overwhelming to put in print.) But, she laughed saying she'd intended to write me a card, had gotten it out, and then not sent it. Boy, could I relate.

Well, today, tears streaming down, I saw an envelope on the counter that had arrived yesterday. I'd not had a chance to open it, and without a return address I had no clue who it was from. Turns out, Dawn decided to send that card after all. Ray asked me to read it aloud, so in halting gasps I said, "Thank you Lord Jesus for teaching us to REMAIN, to ENDURE, and in the end, TO FINISH." She wrote a wonderful note inside and then said, "I close by claiming this scripture for all of you, and especially Abbie, 'What is faith? it is the confident assurance that what we hope for is going to happen. It is the evidence of things we cannot yet see."

The verse that gave us Abbie's middle name. I almost couldn't bear it. God was reaching right down into my brokenness and saying "Remember!! Remember Who I am. Remember how I care for you, how I love Abbie. Do not faint. Do not lose your vision because it is not yet in sight. Remember Me."

Thank you, all of you, who send prayers and thoughts that may not arrive in the mailbox, but rescue us nonetheless. I rejoice in the fact that we have a Father who gives us beauty for ashes. Looking at those images, that was all I could think...these are ashes, Lord...we trust you for the beauty.

Tooting the Horn

I am naturally inclined to use sarcasm and humor to defuse situations that are not at all funny. Sometimes that's a healthy thing, but during this journey I've found that those tendencies predispose one to becoming cynical. So often it has been people who have broken my heart, frustrated me to tears, and made me question whether they could get a 2-for-1 deal in Oz, so that they could find a heart and a brain! While I regret the areas of callous in my spirit, these challenges have also made the great people shine brilliantly in comparison.

I mentioned one, Susan, in my last update. But, I must toot the Horn of Appreciation in honor of her again. I received an amazing letter from her, as a follow up to our meeting. She took what could've been an administrative, dry, "check-the-block" correspondence, and turned it into a keepsake blessing. She started out, " Thank you for allowing me to visit with you and Abbie yesterday. She is a remarkable person, just like her mom." (OK, so flattery certainly doesn't hurt!) But, then she continued, "Your update on Abbie's progress was very exciting" and went on to detail standards that Abbie currently meets. She ended the letter with, "Finally, I want to acknowledge that the love and support you put into Abbie's ongoing recovery is remarkable. Enjoy the little packages of success she delivers. While they may not arrive often, they are certainly a delight to receive and enjoy with the entire family." Wow. This woman should be giving workshops to professionals on how to build relationships with families!!

Today we were visited by the school speech therapist. She is new this year, so had never met Abbie. I could not have asked for better timing! Abbie was just waking from a 2 hour post-Maria nap when Janelle arrived. I gave Abbie her switch, and she was off to the races. Over and over what I heard was, "She has so much potential!!" Janelle has worked with children who use communication devices, so we had a very fruitful conversation about how we can use them to support Abbie's academic progress. I am so encouraged to have team members who I feel can really contribute to moving Abbie to the next level!

Later in the car I was thinking, "We knew it. We KNEW it. We knew it all along!! We knew Abbie had this potential." I was grinning, laughing and giving myself mental high fives. Then I stopped. "Awwww, come on..be honest, " I told myself. "We didn't KNOW anything. What we did was listen. We listened when God reassured us in the darkest hours that all would be well. We trusted when He reminded us He had a plan. And even these things were not of us, but were gifts of amazing grace. So, I'm still giving high fives about all this business, but it's with hands raised to Heaven, to give the credit where it's due.

Tomorrow's the IEP meeting, and Friday we'll meet with the neurologist about the baclofen pump, and with Abbie's case manager, so it's a busy "Abbie Week". I am hoping that I will be tooting the horn many more times! God Bless!!

The Hip Verdict

Just want to give you an update about Abbie's visit to the orthopedic surgeon this afternoon.

God is so good...the news today wasn't, but He is. I absolutely love the doc we saw today (Dr. B.), because he's a skilled surgeon, is extremely empathetic and sees Abbie as a person, not a case. He examined her, noting her extreme spasticity, and he, Ray and I talked for quite a while about the baclofen pump, the surgery, and the sequencing of these procedures.

Then, he sent Abbie for Xrays, since the last films are a year old.

As soon as he put them up on the light box, I thanked God yet again for Maria. She'd prepared me for this day, because she told me the right hip was out, and it was...completely. Most of the socket is gone on that side. The left side hasn't changed much and is still somewhat in the socket. Dr. B. said, "Wow, whoever that was who told you that the hip was out is very, very good..because I couldn't feel that." I think my smile said, " If you only knew..."

He said, "I don't like it when hips come out forward, like hers are, because they don't want to go back in. This is going to be a challenging surgery." But, you know what....he said that so calmly and gently that it didn't even hurt, it was just a statement of fact, something that we are going to work through.

So, God readied me through Maria, and then God orchestrated things to allow us to have Dr. B do the surgery...since Dr. O., Abbie's Shriner's surgeon, is in Afghanistan through at least Aug. With Abbies' hip completely out, we can't wait around to begin coordination. We love Dr. O, but we are extremely comfortable at Kapiolani, where Abbie has gotten all of her care and continues to receive therapy,and where Dr. B. practices.

Our good friend, Rob, is Dr. B's partner and also an ortho surgeon. In the hallway he pulled me aside and said, "If it was my kid, I would want Bill(Dr. B.) to do it." In a later hallway conversation that included all of us, Dr. B. asked Rob to scrub in and do the surgery with him, and Rob readily agreed. So, Abbie will have BOTH of them...I couldn't ask for more!

The biggest hurdle right now is finding a person or team to manage the baclofen pump after the neurosurgeon implants it. In yet another stroke of providence, the meeting that Ray had to leave the appointment for was attended by a pediatric neurologist who does manage the pumps for patients that already have them. He is not a fan of having them put in, and has some reservations, so we are going to meet with him to hear his viewpoint. Dr. B. is not wild about them either, but as he puts it "I just don't have any other answer for spasticity like Abbie's." I'm pretty convinced that a pump will have benefits for Abbie, that at least in the next 2-3 years will outweigh the potential problems. We'll see..

The crux of the matter, as observed by that wonderful DOE person yesterday, is that Abbie is a smart little girl completely trapped in her body, as Rob also noted today. We are going to have to take some extreme measures to provide her relief and release, but I have faith it will be worth it.

I was so very proud of myself that I made it through the whole appoinment without crying once! I think it's a testament to Dr. B's manner, the trust I have in him, and the comfort level I now have. He didn't sugar-coat anything, but we are ready to face what must be done.

Perhaps we've waited too long to proceed with the surgery, but many things are showing us that perhaps we waited for just the right time. I told Dr. B. that the documented gains Abbie's had in the last 6 months will change the way DOE looks at, and must work with Abbie for the rest of her schooling years. She has shown she is a capable learner and motivated girl. Does that make it worth the changes in her hips? Looking at the films, I have to say, "I don't know", it's a pretty tricky trade-off. We could've saved more structure and not proven who she is on the inside, but perhaps then she could've been a girl with solid hips whose hidden intellect was ignored. In the end, it doesn't matter, because we can only move forward. So, that is what we are going to do, hopefully putting in the pump in August and doing the surgery in September if we get our dream schedule.

We covet your prayers for Abbie's health and strength to get through these things. Please pray for her comfort as well, since that right hip is a source of pain. But, always, please pray with much thanksgiving for how gracious and faithful our Lord is. I see His hand so clearly in the details of today, that I cannot do anything but praise Him and relax into the comfort of His protective grasp. If I can end an update like this with a smile, which I am, it is only a testament to the power of your prayers and the greatness of our God.

Miss Abbie and I have been swimming together in a sea of misery this week. She slept most of the day last Thursday, which was odd, but I thought perhaps all the work we've been doing had just worn her out. That night her fever spiked to 104.3, and our adventure began.

She hasn't been this sick in over two years, so I've gotten a bit spoiled by her good health, forgetting what all-night shifts are like. By Friday evening I could tell that I was not going to get away clean, either. Unfortunately, Abbie's care needs didn't give my body a chance to rest and fight back, and I slipped down the slope to illness.

Her fever remained high all weekend, and I camped out in bed during the day resting up for our nights together. Unfortunately, during the work week the rest of the world didn't get the memo that now my days were my nights, so all chances of sleep evaporated as I answered calls, shuttled kids, and made appointments. But, on the upside, Abbie began to rebound on Monday, and today is fever-free with secretions that are no longer yellow. Mom is bouncing back a bit more slowly, but that's of minor concern compared to Abbie getting healthy again!

Tomorrow is a big day for us, as we visit the orthopedic surgeon we saw for a second opinion last fall. We just found out that Abbie's Shriner's surgeon is deployed to Afghanistan through August...pray for Dr. O.!!! I don't know what that means about timing and logisitics, but we should know more tomorrow. I am in a good place about all this, and surprisingly, it is because of a visit from a Dept. of Education person today.

Susan came today to update Abbie's Individualized Educational Plan (IEP) in preparation for a meeting next week. We first met last fall, and she is the one person who totally "got" Abbie, seeing a smart little girl locked in an uncooperative body. She was THRILLED by the progress Abbie has made with language and reading, and showed me that in some areas Abbie is already meeting the exiting-first-grade standards. She had come up with some terrific goals for Abbie, along with wonderful ideas about how to work towards them -- and mentioned more than once how much potential she sees in Abbie.

I told her about the impending surgery --oops, Matthew has issued an edict that in our house it is not called "surgery" but "the walking helper" to make Abbie feel better about it....so, I told Susan about the Walking Helper, and she said, "Well, you know there is going to be regression..."(boy, do I know and hate that)"BUT, you will be able to get it all back and move on to the next level. It may take longer than you want, but she is going to need to concentrate on healing for a while, and then we can get back to other things." I so appreciated an outlook that is realistic and optimistic simultaneously.

I will try to post by this weekend to let you know what the surgeon has. Before I go, I want to tell you a story of another link in Abbie's chain.

At church a few Sundays ago, at the end of an emotional week, Pastor asked me how I was doing. I knew that lying to a pastor is probably a double no-no, so I was honest by saying that sometimes it gets tough to stay focused on the big picture and not be overwhelmed by fear and grief. He said, "Abbie is helping so many people..." He must've caught the roll of my eye that communicated, "That's swell, but I just want my daughter back." He continued, "Well, let me tell you about one family that Abbie has helped this week." Now he had my attention.

"I have a dear friend from college, Janne, whose beautiful daughter Kate, went with us to the National Championship Game in Jan." (college football...they are all LSU fans, but please, keep reading anyway) Last Saturday, while on the way to a wedding, Kate was in a head-on accident and is in a coma right now. Janne called me on the way to the hospital, before they'd even seen Kate, and I told her a little about Abbie and about the website. She was so thankful, because she said they wouldn't have thought of setting up a website, and it has been so helpful." Somehow, hearing names and imagining faces of one family made any pain I've felt justified and bearable.

I've since been able to correspond with Janne, who along with her husband Charlie and Kate's little sister Sarah continue to be filled with faith and stubborn hope as they brave this horrendous path ...but, I know they would surely be bolstered by visits from some of Abbie's Angels. If you have a moment, please go to www.caringbridge.com and search for "KateCrews" (all one word). If you don't have time to go to the page, please just pray for Kate to breathe well on her own and to start waking up a little more each day. And, thank the Lord for how He redeems every tear and every heartache!

Sacred Gift

This week brought us to some painful conclusions, but God was ever so faithful to bring worthwhile lessons right alongside.

On Monday we went to PT, and I told Lynette, "I think her right hip is all the way out." She checked it and answered, "Although only films could tell us for sure, it does seem that way..but, it seems to be coming forward, which is really strange since hips usually dislocate to the rear."

I, illogically perhaps, feel that as a veteran of this journey, I now should be beyond the grasp of sleep-stealing sadness. But, that night I again felt the heart of the Psalmist who wrote about his "couch swimming with tears." I realized that hip surgery was now not optional, and that most likely Abbie is in pain.

Maria came to see Abbie the next morning, and I told her of my suspicions about the hip. As she unfastened Abbie's diapers to take a look, her eyes welled with tears. It was obvious that Abbie's right hip looked different, and she said, "but it has come forward, and that is so strange." She worked on Abbie for three hours, and was able to get the femur back into the socket. So, it looked much better, and it seemed that Abbie felt much better. But, it was just a temporary solution. Abbie's hip problems are being caused by a misalignment of her knee joints as a result of the tension of some muscles on the outside of her leg and the atrophy of those same muscles on the inside of her leg. Maria agreed, after hearing about the need to reconstruct the right hip socket, that it is time to do the surgery, and to get the baclofen pump.

Although it hurt to hear it, in some ways it was the validation I needed, to have someone who has tried so valiantly to help Abbie avoid surgery say she needs it. We must do it not only to help her today, but to help her as she grows since growth will only compound her current challenges.

Maria responded to my regrets about waiting for the surgery by saying, "I think you've waited for just the right time. She is SO much stronger now than when I met her in January. She is in a much different place." I later reflected on the fact that since we delayed the surgery in late November, Abbie has proven to the world she can read...that is such a precious accomplishment, and will be concrete proof to whichever professionals work with us through this process that not only is she "in there", but that she is a a very smart little girl who merits their respect and compassion.

We will begin making phone calls tomorrow morning to set everything in motion. Please, pray mightily for our wisdom, for the right team, and for Abbie's strength and comfort. I must selfishly ask you to pray that I can stay focused on the possibilities of a great outcome, and not be emotionally derailed by the enormity of the surgery or the difficulty of the rehabilitation.

God's already begun a work in that regard. On Wednesday I was marvelling at the ingenuity, daring and precision of the rescue of the FARC hostages in Columbia. I thought about them, walking toward the helicopters as hostages, thinking they were just being moved to yet another jungle camp. I wondered how they reacted as they became airborne and the weapons suddenly pointed at their long-time captors, and the false FARC members announced, "We're the Columbian Army. You are free." The weapons of the enemy turned, and gave them freedom. The weapons of the enemy turned.... and gave them freedom.

I rolled that phrase around in my head a hundred times before a hope suddenly emerged from the fearful fog in my mind, that our enemies, the hip surgery and pump, will give Abbie freedom. So, we will walk toward the helicopter (or OR in our case), with that hidden hope in our hearts.

Freedom remained a theme this week, of course. Abbie and I stood at the end of a cul-de-sac and watched a terrific fireworks display. With each "boom" I would whisper "We're free!" I would imagine the fireworks being the initial signal of long-awaited freedom, of a battle finally won. Looking at it anew, as new, made it clear that next to salvation our freedom is the most sacred gift God could ever have bestowed upon us -- how shall we steward it? Driving home I looked at every flag, and wondered how we would feel if each one of them had been thrust into the ground as a defiant proclamation of liberty, rather than as a holiday decoration.

What these reflections stirred in my heart was righteous defiance - knowing that battles hurt, but must be fought when freedom is at stake. And, when it comes to freeing my daughter from the chains that are holding her -- well, is anyone foolish enough to take on a Mama Bear when her cub is at risk? So, one day we will celebrate Abbie's freedom. But, for this day, we commit to doing what we must, come what may, to one day hear, "My name is Abbie. I am free."

Pictures

It's a late hour here, but I finally got some pictures downloaded of Miss Abbie's first real haircut She was such a patient girl, and it turned out wonderfully! Then, there are some from the next day. Sorry there are so many...I couldn't choose one favorite!
All is well here, and I pray the same for you!

Blessing Upon Blessing

I've been walking around with a subtle overwhelmed feeling that comes into sharp focus and monumental proportions as I sit down to write.

I'll just start with last Wednesday. I had recently heard about healing service being held near our home, led by Pastor Dean. He prayed over Abbie in the ICU, although I didn't meet him until a year later. As I listened to the details, I knew we were supposed to go, and I planned our day around it.

What is it about best-laid plans? Ours began to unravel as the nurse scheduled for 8 was not here at 9. As I suspected, she'd gotten into a car accident and was at the hospital. I had planned in time for me to get Abbie ready, and time to get myself ready, but not time to do both simultaneously. At 12:30, already 90 minutes late I loaded Abbie in the van and thought, "If these people are really all about prayer and healing, then they will know that we are right on time."

As I was bustling around and then driving to the church, I began singing, "Enter His gates with thanksgiving in your heart; enter His courts with praise..." over and over again. I didn't know why...short memory and lack of singing skills come to mind...but soon I would laugh at how completely God nodded "yes" to my being right on time.

We arrived at the church to find people scattered through the sanctuary praying and listening to some beautiful music. Abbie and I just sat at the back and caught our breath. A couple minutes passed before Pastor Dean emerged from an office at the back of the church. He strode to the microphone at the front, and simply said, "I was back there praying for a long time, just waiting for the Holy Spirit to come. He gave me one verse over and over...Psalm 100:4 -- Enter His gates with thanksgiving in your heart, enter his courts with praise." I think I surprised the meditative people in there with my gasp and laugh.

I took Abbie to the front to be prayed for by a small group of people. My eyes locked with one woman's and we both grinned at the same time. She was an OT who worked with Abbie in the ICU, and was the first staff member to come by, off-shift, pull the curtain and say, "Can I pray over your daughter with you?" What a sweet reunion as she marveled at Abbie's growth and change. The prayers for her were powerful and yet tender. I was so thankful! Then, a small Japanese grandpa looked at me with the kindest eyes and said, "I think we need to pray for Abbie's mom, too!" At light-speed I consented and was bathed in the overwhelming love and presence of God. Whew!

We didn't have a nurse scheduled for Thursday, but since Wednesday had fallen through, the agency found a new nurse at the last minute, "But," they said, "She can't lift Abbie." Oh, brother...why send someone that can't lift? The answer to THAT one came within 5 minute's of Star's arrival. I realized I knew her from seeing her at the hospital with Caleb, and had noticed that it seemed like she had had a trach at some point. I asked her about this and she said, "Yes, and a G-tube too." Four years earlier she'd spent 2 months on a ventilator, fighting a blood infection secondary to lupus. Her right hip had been affected, which is why her lifting was limited. I walked into the room later to find Abbie and Star painting, coloring, and making a Father's Day Card. I told her how glad I was to see this, and Star replied, "I know what it is to be in bed and be totally bored." She also could tell me what is was like to be suctioned, if a G-tube is uncomfortable, and how hard therapy can be sometimes. What a tremendous gift of insight and empathy she has, and how tremendously blessed we were by her sharing it with us! BTW...the Father's Day Card was the hit of the day. All the tools in the world couldn't compare to a paper card painted by Abbie. Look for it on Ray's office wall!

And last, but not least and not the most recent: last Monday we cut almost a foot of hair from Abbie's mane. The week prior I had been combing her hair and noticed that it is coming in very light at the roots in the front. Strange, but it took me back in time to her babyfine, blonde hair that framed her rascal face. As I was brushing it I felt God say, "When this color is hers again, she will be yours again." My first instinct was to shave her head and proclaim, "Done!" My second instinct was to hide the clippers. But, I did begin to consider cutting her hair.

The next day Maria came to work with Abbie, and one of the first things she said was, "All this hair is really weighing her down, and pulling it up so tightly all the time is not good for her. Have you thought about cutting it?" Well, as a matter of fact...

So, I had Tirzah, the woman who cuts my hair, come to the house. Abbie was a CHAMP and sat still for 20 minutes. Although it seems like she grew up about three years in those twenty minutes, I am tickled with how it turned out. What I wouldn't give for curls like hers!

So, the boys are all healed from our bee misadventures, Abbie is looking like a sassy big girl, and the summer sun is shining while the Morning Star lights each and every moment. God bless!

Buzzing

Many things around here are buzzing...new knowledge I am trying to cram into my brain and then hold on to, new ideas to help Abbie, and then...literally, bees.

I've been delayed a few (more) days from posting because RJ and Kyle have required my OJT-nursing skills. We were at a friend's house Saturday evening, preparing to share a relaxing meal and unwind. Most of the kids had gone out the back gate and were hiking the ridge right behind the house. Matt beckoned me up to the second floor of the kids' fort to take pictures of the hikers. Through my lens, I saw Kyle rip his shirt off and start swinging it madly. In that second between seeing it, and figuring out what was going on, I saw RJ pinned down by the swarm of bees that Kyle was attempting to get away from.

Because the bees were attacking his face, RJ had to close his eyes, which made it impossible for him to move down the steep slope. Kyle, also being attacked, could not reach him. I was screaming for all I was worth, and never have I felt so utterly helpless.

We eventually got him down and right into a cold shower. We began getting the stingers and live bees out of his hair and off his body. I stopped counting stingers on his head when we reached 50. There were at least 20 elsewhere on his body. His pain was unbelievable and unstoppable. The pediatrician told us to take him to the ER because of the number of stings. As I was getting stingers out, he told me, "Mom, I didn't think I was going to be able to get down. I thought I was going to die up there." That broke my heart too much to tell him that I'd had the same thoughts.

The ER had the I.V. prepped before we got there because they'd assumed RJ would look like a basketball-head upon arrival. Amazingly , he didn't, with the major effect being repetitive vomiting, which helped him get all the toxin out. He was fairly calm until the doc mentioned the I.V., at which point he screamed again. Thank goodness for sublingual medicine and a flexible doctor!

Unfortunately, Kyle got lost in the rush to help RJ. Walking around saying, "I'm fine", he convinced us that his measly 10 stings were nothing to worry about. Alas, he was the one to awake the next day with an eye swollen shut and a hand that looked like a water balloon.

Just another day in our life....

The bees buzzing in my head are the friendly kind, and I am grateful, just overwhelmed. Abbie has required a change of diet recently, which has prompted a whole new round of nutrition research. Things just seem to sink in at different times, because it's impossible to take it all in at once. This iteration has focused on enzymes. I had been giving her Ox Bile for quite a while, but recently discovered that most of it is destroyed in the stomach, which is why it comes in capsules that carry it to the small intestine (which I, of course, open and discard.) Hmmm. What to do?

Enter my favorite kind of author...another mom! Karen DeFelice has written a few wonderful books about enzymes, gut function and neurological issues. If you are a caregiver, I HIGHLY suggest her books. The one I read is "Enzymes: Go With Your Gut." She has done what she writes about with her own children. So, Abbie and I are adventuring down this road together now. Mrs. DeFelice included a "Go Low and Slow" approach for introducing enzymes, most likely targeted for impatient mothers like me, so I haven't even started all of the ones I am curious about. I will keep you posted on what we see.

Last week I was able to spend a couple of days in an intensive anatomy class, taught by a PhD anatomist. I learned so incredibly much about the brain, and what a miracle of architecture and engineering the human body is. But, we also had some interesting side conversations.

The professor related the incident that sparked his interest in neuronal research, recalling taking his son to see a showing of Star Wars that was delayed by projector problems. When the theater was at last quiet and dark, a young boy using a walker entered. There was one wheel that went "squeak....squeak...squeak." But, as the boy noticed the movie starting, the wheel went "squeaksqueaksqueak" as he ran to his seat. Finding his row, he dove for the seat and let the walker just roll to the front of the theater. The professor was impressed by the fact that this boy, with an obvious neurological deficit, was living his life full-steam, and resolved to put his energies toward figuring out how to help kids like him.

His research has included attempting to grow neurons in the lab. Not only did they grow, he said they "grew like crazy!" He, like so many others, is convinced that it's the environment the brain is in after injury that limits recovery, not the brain's capabilities. The challenge now is figuring out the characteristics of a post-injury environment that tell the neurons not to grow.

We know one of them is structural misalignment. I was stunned to see how perfectly each lobe of the brain, and the brain stem fit into custom-molded parts of the sphenoid bone. The first time we worked with Maria, the misplacement of Abbie's occipital lobes was her primary concern. We have seen tremendous changes since beginning this work, and I think returning the structures to their proper places is a big contributor to the success so far.

One other inhibitor is a protein appropriately named "Nogo." Remediating the action of this protein may hold promise for spinal cord and brain injury survivors. While I was researching it last night, I hit upon a link that was an answer to my prayers. www.cnsfoundation.org is the website for the Children's Neurobiologial Solutions Foundation. I realized that I had found kindred spirits as I read "Brain repair and regeneration are possible!" They have assembled an impressive Scientific Committee, with researchers from institutions like Harvard and Johns Hopkins, and are focused on FIXING brains, not working around limitations of injured ones. There is a parent group there, so I wanted to pass this link on to all the families like ours who still, and will continue to believe in solutions and recovery!

Abbie continues to teach us daily. And, along with the lessons, she freely gives love, smiles and joy. Today, after reading "Love You Forever" for the gazillionth time, I asked her what kind of house she was going to have when she grew up and moved into one of her own. She was very excited by this conversation, but remained pretty ambivalent about house features until I got to "fireplace." She about jumped out of bed! So, I guess she is willing to live in a tent as long as it has a fireplace and people who love her!

I pray your summer is off to a wonderful start -- can it really be June already??

A Precious Request

Tuesdays have become the highlight of my week, with Maria's morning visits to look forward to. Usually, she works on me first while Abbie is eating, but this week I had to be at an orientation for the twins' new school at 11, and didn't really want to embarrass them right out of the gate by going down with crazy hair, sticking up and coated with massage oil. So, instead I got to spend over an hour at the kitchen table with her, picking her brain about everything we never have time to talk about.

We had a brand-new nurse on Tuesday, who turned out to be wonderful, but Abbie didn't know that at the start of the day. I left her working with Maria, and by the time I got home, Maria was gone. The nurse was very impressed both by Maria, and what Abbie had done with her, but it would be evening before I got the whole scoop.

Maria called and said, "The most amazing thing happened today, as I was getting ready to leave, Abbie spoke the words, 'Don't Go'!" I was so surprised and asked the nurse, 'Did you hear that?' She said it did sound like words. I think it even surprised Abbie, to have the words actually come out. So, of course I couldn't leave then. I put my bags down and talked to her until she went to sleep. There was little teddy bear on her bed, so I put him on her chest and talked to her about taking care of him, and getting him to sleep because he needed his rest."

I was giggling at this point, for many reasons. So happy for Abbie that she could voice the cry of her heart. So overwhelmed by Maria's compassion. So amazed at the way Abbie can communicate with me, even without words. You see, after she woke up from her normal post-Maria marathon nap, I sensed she wanted the bear. Mr. Bear ended up going to the baseball game with us, and did not leave Abbie's side all night. Now I understood why. She is taking care of him, and he is taking care of her.

Mr. Bear went to Matthew's concert tonight, and is tucked in right next to her now. Even barely awake, she smiled when I laid him on her chest to give her hugs. It makes me happy that she has a special little friend to help her through scary times, like being left, and share happy times like games and concerts.

Maria also shared with me that Abbie made terrific progress with moving specific limbs on command, as in "raise your right arm." When she told me Abbie lifted her arm, I envisioned the small-amplitude lifts she does, mostly to indicate she understands what she is being asked to do. Oh, no. Maria quickly corrected my thinking by telling me she was lifting her arm up to her head. She needed to hold on to Maria's finger to help with the weight, but she did it! At the end of the session, Maria supported Abbie so she could stand with flat feet on the floor. Flat feet is a huge accomplishment for Abbie, as it signals an almost complete recovery of the ankle injuries of last summer!

As I imagine it now, I can hear Abbie's voice, reaching out for Maria, pleading not to be left with a kind stranger. The music of heaven.

Abbie's Outfitters

Aloha! I am typing this at 1:45am for a couple of reasons, neither of which involve Abbie's health. The twins are having a sleep-over birthday party to celebrate turning 11 on May 6th. Our Party Papa is overseeing 12 boys while I tend to one little girl...hardly seems fair! We didn't have nursing this evening, and for some reason Abbie picked tonight to need oxygen, which is rare for her lately. So, we've been camped out in one end of the house while the revelers occupy the other. It has been amazingly quiet so far, but I'm sure the boys will be up with the sun.

The second reason I am posting so late (or early, depending on how you look at it) is that I've finally completed a long-procrastinated task, and I want to share it with you. I find myself recommending so many different books and other products that I've long thought it would be convenient to consolidate them in one place.

Voila! I would like to introduce you to "Abbie's Outfitters", our new online Amazon store.

Abbie's Outfitters

I've selected the books, CDs, and products that have been the most beneficial during our journey. I hope that you enjoy browsing, and find the store useful.

For brain-injury families I do want to point you to some things listed under "helpful products." There are three items there that Maria Margarita has introduced us to: Traumeel, Zeel, and Lymphomyosot. I had never heard of these before working with her, and they have been very helpful. I was glad to find out I could offer them through Amazon.

Abbie has had her ups and downs lately. She and I are really enjoying getting out in the yard in the morning to bounce and stretch on a ball while soaking in the sun. But, it appears that we are back to having a rough time between 3pm and 7pm each evening. We think it may be an after-effect of the MRI and DTI test last week, since they most definitely had an effect on her brain. For the first time in ages I slept to the sound of the concentrator last night. She only needed half a liter, but the machine isn't quieter just because she needs a low flow! When I got up this morning I remembered why I used to always feel so exhausted. The sound that seems like a whisper in daylight, beomes a freight train in the dark.

I want to wish a Happy Mother's Day to all the incredible mothers I know, especially my own. May your day be blessed with the realization of your impact and influence on those you love.

Not a Single Tear

Just time for a quick update, but I did want to share that Saturday, May 3rd was a wonderful day for our family. There was a moment when I was sitting at RJ's baseball game, in the sun, where I could feel it....I knew I was being prayed for. We were able to rejoice in the fact that we have our Abbie, and that she is doing so very well. Thank you all for your thoughts and prayers on that day, but even more importantly, on all of the days of the last four years. We wouldn't have made this climb without you, and the fact of the matter is Miss Abigail Faith Vara would not be alive save for the power of your prayers.

Lots of good things this week, including the final report for this semester of speech therapy (first time yet that I"ve heard multiple times '100% success rate' on numerous goals!) And, much good work with Maria this week to get Abbie's brain calmed down after the MRI and DTI tests last week.

We are very blessed, and you are one of the most tangible proofs of that!

Answered Prayers, and Another Request

A big "Mahalo" to all of you who prayed for Abbie regarding the brain scans we did this morning! It was quite an experience. As I posted earlier, I had been warned that the DTI test was loud. Wow! Jackhammers on a sidewalk would have been crickets chirping compared to that test! Abbie had earplugs in and earphones on over her ears. I think it was the microphone attached to the earphones that really completed the "Abbie as a Cosmonaut" look. She was also outfitted with a set of goggles that allowed her to watch "Lilo and Stitch" during the tests. With all of that on her head, she was then slid into a little basket that held her head still and straight. Not the most pleasant position for a nap.

I had kept her awake all morning, minus a 10 minute catnap, so that she might be too tired to fidget. As I alluded to above, fatigue couldn't have a made a sloth hold still on that table! Our dear Maria went with us, so she and I both donned earplugs as well, and each took one of Abbie's hands and feet in our hands. The noise and vibration were hard on both of us, so I can't imagine what little Abbie went through as she actually lay in the middle of the doughnut. There were times she cried, so I worried about how the images were going to come out. I should have known that with two women holding on to her and praying the entire time, all would be well.

It was more than well, it was GREAT. The radiologist told Ray with a smile, as the DTI and MRI were completed, "Those were just two very complex scans that went very well...now they are going to think we can do this all the time!" The DTI images were just raw data and have to be processed through the computer to give us usable, readable images. BUT, Dr. L. did show us one of the raw images, which was a transverse slice of Abbie's brain (horizontal). The DTI uses colors to indicate direction of connection: green is for front to back communication, while red and blue indicate left to right (and vice versa) communication. I have to say, while this was just one raw image, we saw lots of dots of every color....hurrah!! Abbie's brain is communicating in every direction (my analysis, not the radiologist's) We don't expect her pictures to come back looking like that mohawk DTI image I posted, but there WILL be some wires tying parts of her brain to each other.

Then, the technicians handed us a huge envelope with all of the MRI images...we got to take them home! Maria and I could hardly contain our glee, and hurried home for what seemed like Christmas on May Day. Of course, we don't have a lightbox at the house, so we taped up images all across our sliding glass doors. We got out the films from Abbie's first (and only ) MRI, done three days after her injury so that we could compare them to the new ones.



Several things jumped out as we spent an hour or so with the images. In no particular order:

1. Looking at her first MRI, I could see that the medulla (brainstem) was bent rather than straight, forced to the rear by the pressure of the swelling in the front of Abbie's brain. Knowing what I know now it struck me very hard that we came very, very close to losing her...in fact, looking at those first images, I cannot believe she survived that injury.

2. Her new images are nowhere near normal, but that's not what we were looking for. Her ventricles are enlarged, holding more fluid to make up for the tissue loss as her brain has atrophied. She does not have the same amount of tissue mass that a normal brain does, however, she definitely has grey and white matter, and especially in the upper portions of her brain, the contours are curving and folding.

3. Her cerebellum is smaller, but two important things have happened. One is that a huge gap between the two halves has reduced and is beginning to fill in. The other is that the cerebellum was pushed up out of its normal position by the swelling in the back of Abbie's brain. This left a big gap between Abbie's brain and her skull, where the cerebellum was supposed to be. Her cerebellum (which has a lot to do with motor control) is now back in it's proper place, and the spacing is much more appropriate.

Overall, the appearance of the tissue in Abbie's brain is much, much nicer. Instead of a big bowl of undifferentiated grey mush, it now is very differentiated by color (light and dark) and by contour.



Given all this, it still was not an easy day. Halfway through looking at the images I recognized the irony in the fact that we had taped them to the door I'd run through to give her CPR, and if we looked past the images the pool filled our vision. Maria was a godsend, and once she realized I was slipping down the slope, she intensified her efforts to point out improvements.

Ray and the boys enjoy watching a show called "The Biggest Loser", a weight loss challenge. It always amazes me, at the end of the season, to see the "new" person stand next to his or her "before" photo. I drove home from the imaging office today with that thought in my mind -- these are Abbie's "before" pictures. One day she will stand next to those images and we won't be able to believe that they once belonged to her.

I must give my deepest, most heartfelt thanks (which still seems woefully inadequate) to the entire staff at InVision Imaging. They gave us a profound gift today, with such warmth and caring that I am still at a loss for words.

Abbie also continues to show us each day that she is working hard to get better. Today, Carol came to give Abbie Healing Touch, and was working with her while I cleaned house. I came in to check on them, and Carol exclaimed, "Did you know she can lift her arm all the way over her head???" Why, yes I did, I told her...as of last week that is in Abbie's repertoire.

She went to RJ's baseball game with me tonight and was so attentive. Not only to the game, but to the busses passing behind her and people talking around her. Now she can evidence this attention with movement, which engages everyone around her.

So, it has been quite a day, but I want to wrap this up by asking for fervent prayers for Abbie's buddy Caleb. If you've not clicked on his link in a few days, he could really use your support. He came to our house on Tuesday to use the HBOT chamber and Tesla lights. But, he had a little runny nose, so we skipped the chamber for that day. His mom called the next day, to set up a time come over, I thought. Wrong. She was calling to tell me that she'd had to begin bagging Caleb early that morning because his oxygen sats had dropped so low. They went by ambulance to the hospital where he was admitted to the ICU, sedated and ventilated. I saw him last night, and he looked great, but was still knocked out from all the drugs. It seems that the origin of the problem wasn't respiratory per se, but rather a wave of seizures. I spoke to Kehau this morning and it sounds like his neurologist thinks the seizures were brought on by a quickly spiking fever. This would be good news since that is a transient problem that even happens in kids without brain injuries. I'll be seeing them tomorrow, and will tell them that all of Abbie's Angels are praying for Caleb to bounce back.

We've never had to go back to the PICU or call an ambulance to the house, so I can only imagine the emotional toll this event has taken on Kehau and Brandon, please pray for them as well. They are a blessing to me, as I see God's grace illuminate their way through challenges, reminding me always that we have the same Father, same Hope, same promises....what comfort, what joy.

Need Your Prayers!

After all these years of asking for prayers to help Abbie move her body, I am coming to you tonight to ask you to join us in praying that she will hold very, very still. On Thursday morning we are going to do the brain imaging, and we are going to do it without sedating her.

I had a nice conversation with the radiologist this afternoon, who started by saying, "I see you've been doing some reading..a LOT of reading!" I guess it's a little wierd for a mom to be asking about a brain imaging technique that they are not yet using as a clinical tool, it is limited to research at this point. I suppose that is my reward for reading "Scientific American" instead of "People" on the airplane.

The doctor said the Diffusion Tensor Imaging (DTI) will take about 8 minutes, and that it is very, very loud. This shoots down Plan A, which was to wear Abbie out and hope she slept through it. We are also hoping to do a follow-on MRI, which would take another 25 minutes or so. I am fervently praying we can accomplish this so that we can get some good, clear images.

"I'm not sure what we'll do with these images at this point," was one comment the doctor made. I didn't voice my ultimate goal. To me, these are a marker, a beginning point. I am hoping that a year or two down the road we can do another set, and that they will give radiological proof that a brain can regenerate, even many years after injury. I pray, pray, pray that one day Abbie's story will be in Scientific American in the midst of an article about "New Views on Brain Injury Recovery." Wouldn't that be awesome?

She continues to show us every day, without pictures, that her brain is indeed healing. Late last week Genevieve and I were working with her on the massage table. If we would hold her wrists to help support the weight of her arms, she would raise them all the way over her head by herself. She was grinning, while we were in tears. This new move speaks to improvements in her tone, range of motion, independent movement, and trust in her body.

The vog has been keeping us indoors more lately. (For folks not in Hawaii, that's not a typo, "vog" looks like fog, or actually smog, and is produced by the Kilauea volcano on the Big Island, which has been very active lately). When it got really bad late last week, it made Abbie sick for a couple of days. That's another prayer request...pray for those tradewinds to blow!

We are creeping up to May 3rd yet again. And, yet again I am approaching it the same way I always have, as if the day is going to slip by and it won't seem different from any other day. It hasn't really worked out that way in the past, but I am hoping, given how things are going, that this will be the year of victory over grief on that day.

I wrote to my dear friend Sue (Luke's mom) tonight that we are approaching our "graduation day." We have just about completed our four years of undergraduate work in independent studies, with a focus on nursing, physical/occupation/speech therapy, anatomy, physiology, and integrative medicine...with a minor in stubborn faith and irrational hope. I have noticed that the upper level classes of the past year or so have been more challenging, and the book work and research is certainly more intense...but, I also feel the gratification of having overcome, having persevered, and having grown immensely. Not for free, no scholarships granted, and I certainly didn't apply for this program, but an education for which I am profoundly thankful.

Bless you all for going on this ride with us....here's to exciting days ahead! To God be the glory!!

Before You Call, I Will Answer

This weekend was a huge treat for our family. Ray's company had a retreat for their board members, physician leaders and managment leaders at Ihilani, a beautiful resort on the leeward coast.

My highest hopes were for two consecutive nights of sleep in a bed! (Usually I sleep on a futon on the floor next to Abbie's bed.) Well, I did enjoy the comfy king bed, lots of pillows, and QUIET. But, God had much, MUCH more in store for me.

Last month, while flying to Chicago, I read an article about a new brain imaging technique called Diffusion Tensor Imaging (DTI). The unique thing about DTI is that it produces images of the white matter of the brain, which have never been available before. In reading the article I was sure that only top-flight research centers would have this technology.

I did not know that Ray's company has a joint venture with an imaging company, whose owner was at the retreat to give some presentations. I missed those, but was fortunate to run into him at the pool. I asked him if he'd heard of DTI, and if anyone in Hawaii was doing it. He grinned and said, "We just started using it for a large study that the University is doing. Call me next week and we'll run Abbie through."

Just like that.

All I'd wanted to know is if anyone had it, and now we are going to be able to do it very soon with Abbie! We will be able to see exactly where her areas of injury are in the white matter, but even more intriguing to me, DTI can perform "tractography" within white matter, which means it can follow one fiber its entire length. This will let us see which parts of Abbie's brain are connected. The picture below is a tractographic study.



Also attending the conference was a pediatric neurologist I've heard great things about. I felt as if I were stalking him the entire weekend, but finally got a few minutes to talk with him today. In that brief time he introducing an entirely new idea about Abbie.

He's found that with the CP kids he treats, often, putting them on anti-spasticity drugs reveals an additional challenge they are facing, dystonia. He defined this as when both oppositional muscles fire at the same time, instead of one contracting and one loosening to let the body move. So, instead of fluid movement produced by teamwork, the body is locked as the muscles fight each other. I had never, ever considered that Abbie may be dealing this. He said there are medications that are effective in helping this, so more time at PubMed is in my immediate future. (For my fellow Brain Geeks, the drug he likes is an anticholinergic called Artane.)

When speaking to the group today, Ray said that the weekend was successful if we all laughed a little, cried a little, and learned a little. Watching a DVD of a little boy laughing after his cochlear implants were turned on for the first time brought tears and laughter simultaneously. A widow sharing the story of her critically-ill husband wanting to die in the sunshine, and the staff finding a way to allow that to happen reminded me that our most profound legacies may come through what initially looks like defeat. The hospital is now designing a healing garden in his honor, that will allow so many more patients to feel the sun on their skin when they need it the most.

On Friday I was excited to spend time with my husband, getting a glimpse of his world. On Sunday I am typing this overwhelmed at the veracity of God's Word and His faithfulness to it. With so many things lately, we are receiving more than we ever could have thought or known to pray for.



"Before they call, I will answer, while they are still speaking, I will hear." -- Isaiah 65:24

New Feats

We are having fun now, watching Abbie do new things quite often...things that in many cases we have been waiting years to see.
Last week I was talking with Abbie, and she began talking right back to me. Not so unusual, but pretty soon I realized she was trying to say the same things I was. So, I began practicing with her. I would say a word a couple of times and then say "your turn". Pretty soon Abbie would attempt to say the word. The articulation wasn't clear, but her intent sure was. When I would correct her on the syllables in each word, as in "there are two syllables in 'hungry'", she would answer back with two syllables.

The other day I had her on her tummy on the massage table. She had held her chest and head up for quite a while, after I placed her in that position. Then, she slid her arms out to the side in very controlled manner so she could lay her head down. I was happy with that, but what happened next made me literally jump for joy. She pulled her arms back in and raised her head and chest off the table by herself. Her neurodevelopmentalist told us in March that Abbie would be doing this soon, but it still really surprised me.

Abbie has been working very hard with Maria Margarita. Yesterday, Maria had Abbie doing full circles with her shoulder while lying on her tummy...I could not believe how loose her arms were! Maria also solved an issue that has been bugging me for a while now. On the inside of Abbie's knees there are sharp protrusions, we call them her "pokies". Maria determined that one of her leg bones (I believe the femur) was slightly out of place. She worked a while,and...voila...bone back in place and no more pokie!

Speaking of pokies, Abbie had to have a some blood drawn on Monday. I coached her through the whole thing, and she remained calm and brave, but when the needle was inserted she flinched and tried to pull her arm away -- a totally normal reaction. This may seem like a small detail, but to a mom who's watched blood drawn with minimal reaction, this was exciting!

She has been doing very well with standing in PT -- each week her therapist is amazed at the progress in her ankles. The left ankle, which was injured twice last summer, had built up a lot of scar tissue as a result, limiting her range on that side. In the past couple of weeks that scar tissue has started to break up, and the flexibilty is returning!

While I am having a grand time being a spectator to all this, Abbie is really going through a lot. Please pray for her comfort. The days right after she works with Maria can be challenging as her body detoxs and adjusts to the work done. Yesterday, after working with all her joints, Maria said, "There is absolutely no reason this little girl cannot use her body..all the joints are fine. Her body is just like a house that hasn't been lived in for a very long time, we have to get the cobwebs and dust out and then she'll be fine." Housework isn't normally my joy (ask Ray), but in this case, it's the most anticipated undertaking I can imagine!

One last quick note, I've just begun researching a new medication for Abbie, which has been shown to dramatically help spasticity, as well as drooling, without being sedating. It's a fairly new drug, and these uses are off-label, so I would really appreciate corresponding with anyone who's had any experience with Provigil (modafinil).

My dad just arrived today to spend a week with us, so we are looking forward to lots of cribbage, dice games, and catching up. I pray that you have a terrific week! Oh, one more thing...please notice that there is a new link on the left side of the screen for a little boy named Aidan. He nearly-drowned on 2/16, and will be going home for the first time tomorrow! If you have a moment, would you send his family a note of encouragement as they enter this huge transition? Thank you!

Eternal Easter

I have been waiting to download the Easter pictures before writing an update. Sorry it took so long! As you can see above, we made sure we got in the face painting line early this year, to avoid a Meany Clown vs. SuperDad rematch. Abbie was quite pleased with her butterflies (the other cheek was painted to match.) However, I wasn't able to snap a picture of all the kids before the boys visited the clown as well, hence I share with you our lovely Family Easter photo, 2008. Nothing like a couple of Spiderman faces to proclaim "He Is Risen!!!', right?



Easter was a beautiful day for all of us. Abbie is in such new place as of late, that all the sting of this particularly poignant holiday was taken away this year. I was not holding my breath at all that day, which is unusual. On other Easters I've had to pray for each and every breath to be given, as my strength would fade and despair would rush in. God provided everything this day, right down to Abbie's hair accessory. We were running a bit late for church, since we took the unusual step (for us) of attending the early service. A bit ambitious, but necessary to make it to brunch. Abbie ending up rolling out of the house with just a purple elastic band in her hair -- certainly not up to her standards!! Oh well, I thought...all that matters is that we are going to church. We'd been seated less than five minutes when a member of the hula and sign worship team walked up behind Abbie with an ornate flower arrangement for her hair. Each of the dancers was wearing one, and they had one extra....which they gently pinned in Abbie's hair. Well, my, my...who was the princess now?



At the end of the service, as Pastor was closing his message, Abbie became quite animated. So, she and I carried on a covert conversation, with me whispering and her squeezing my hand. I'd had to disconnect her switch earlier in the service when "Happy Easter" rang out over and over as Pastor began speaking. I was almost certain I understood what she meant, and my heart nearly burst. But, I waited until we were home to confirm it.

As I laid her on the couch I said, "Do you think we should tell Daddy what we were talking about in church." Big grin. "Do you think we should tell Daddy that you asked Jesus into your heart today?" Her body about jumped off the couch.

Tears came as I knew the confirmation was concrete. You see, Abbie became "talkative" in church as the pastor shared the story of salvation: how each of us are created in God's image, beloved by Him, made to have a relationship with Him; but then through our errors and mistakes are separated from Him. Christ laid down His life so that our sins could be forgiven and we could once again have a relationship with God. Abbie was enthralled, and clearly understood what was being said. When the pastor invited any who were willing to accept Christ's free gift of grace, Abbie kicked her legs and squeezed my hand yet again.

Earlier in the week a friend had emailed that she would be praying for "an Easter miracle for Abbie and your family, for a new beginning." You know what I was praying for that new beginning to be, but God had something much bigger in mind. Luke 5:23 says, "Which is easier, to say, 'Your sins have been forgiven you,' or to say, 'Rise and walk?'" God accomplished the impossible for Abbie on Easter, the salvation which makes rising and walking look like a speck of dust.

I suppose because unlike almost all of the rest of us, she has glimpsed Heaven, I somehow thought the eternal transaction had been made there. But, on Easter the Lord showed me that perhaps one reason He gave Abbie back to us is so that she could say "Yes" to Him of her own free will.

On Easter Sunday, 2008 the name Abigail Faith Vara was written in the Book of Life.

Therapy laughter

A warp-speed trip to Chicago, with a one day stop in Oregon that concluded with a flight cancelled as we sat on the tarmac in Portland is this week's excuse for my tardy update. But, Abbie waits for no one, including her dawdling mother, as she pushes forward on this journey.

This Monday was a big day (and we're not even Irish). We saw Linda Kane, Abbie's neurodevelopmentalist, in the morning. She was very encouraged with Abbie's progress and says she loves seeing Abbie because "it just keeps getting better every time!!" She was particularly impressed with Abbie's emerging reading skills, which I gleefully detailed for her. The motor skills....well, we are in just about the same spot we've been all these years. Somehow, though, all the gains Abbie is making in other areas blunts the blow of her lack of progress in this area. And, truly, I know it is just a matter of time until her body catches up with that brilliant mind of hers.

"Brillliant" may sound like a bit of hyperbole, but allow me to explain. On Monday afternoon we went to speech therapy at UH. Abbie had her "yes" switch in her right hand and her "no" switch in her left. April would show her a ball of Play-doh, and then have her select the correct color from flashcards with the words on them. This week all the words were just printed in black -- no color clues on the cards. Abbie correctly identified white, red, yellow, green and blue without a mistake. Then, we moved on to shapes. April would show Abbie a 3-D shape, and then the word cards. Abbie identified circle, square, triangle and rectangle without a mistake. Finally, April made up a story during which she used picture/word cards from Abbie's reading list. After the story Abbie correctly identified all the words: car, slide, ice cream, mouth, hug -- the first time through! Her reaction times were remarkably faster, and her ability to differentiate when she wanted to use her left hand or right hand to answer was much greater that day. I was stunned that she did not mistake a single word. April asked if we'd been drilling on the words quite a bit, and I sheepishly replied that since I'd been out of town, we hadn't really worked on them for about 10 days or so. I guess that turned out to be a good thing, because it showed that Abbie really knows these words!

The supervising professor for that session was a woman who hadn't seen Abbie in several months. When she came into the therapy room from the observation room after the session neither of us could really talk...only grin and laugh. She was amazed at how much Abbie has changed. Things that used to be the only subject of an entire therapy session, like how to use two switches, are now just a given. And, as I thought about it, I wondered if all 6-year olds can read words like "rectangle" and "triangle". Having taught my sons to read, I know the answer to that one, and it makes me smile that, at least in one precious way, Abbie is moving to the head of her class.

As this Holy Week presses the depth of Christ's agony, sacrifice, and love into my heart I rejoice in knowing that even these "Abbie highlights" are just a glimmer of the good He has planned for each of us, for here, and for ever.

The Call and Some Answers

The difficult thing about so many good things happening, is that I am so busy watching them unfold that I don't have the time to write about them, and then they begin to stack up.  I have a whole pile of wonderful things to catch up tonight.

Dr. Tennant was here last week, and in additional to the new knowledge and insights he always brings, he also brought a couple of new pieces of equipment on this trip.  The first one is called an "EIS" (Electro Interstitial Scan).  You can think of it like an ECG for the whole body, with a set of ECG pads attached to the forehead while hands and feet are set upon special plates.  Both alternating and direct currents are sent through the body during the 4-minute scan,  the resulting information is sent through a mathematical program to reduce "noise" and then a statistical program to determine "specificity" or the likehood that the person has specific issues.

The EIS produces so much intriguing information, some of which we've never been able to assess before.  It displayed a three-D image of the body with all the systems color-coded by voltage level.  Red is very high, yellow is high, grey is normal, light blue is below normal, and dark blue is greatly below normal.  Every part of Abbie's initial scan was deep blue...hard for me to see.  Then, as we looked in detail at the brain I saw two little red horns sticking out deep in the center of her brain.  I asked Dr. Tennant what structure that was, and he said, "The amygdala -- they control emotion.  If her body would allow her to be raging, she would be."  Ouch, hard for me to hear.  We also noted that 3 of 4 neurochemicals were well below normal (serotonin, dopamine and GABA), that her hormones were normal for the most part, and that a few of her minerals were low.  One very interesting piece of information the EIS produces is called a "Davenport Diagram".  Typically, this information can only be gathered from an arterial line.  When the PICU nurses would draw blood gases every 4 hours, it was a Davenport Diagram they were creating.  The diagram tells whether a patient is in metabolic acidosis or alkalosis, or respiratory acidosis or alkalosis.  Abbie was deeply into metabolic acidosis...still.  We know it is because she is still working her way up to the proper dosage of Armour thyroid, and the measurements will get better...but still, tough to see after all the efforts we've made.  It was very interesting to me that the program defined Abbie's primary challenge as hypothyroidism, with a specificity of 83%, which means you can bet that it's true.

I went home that night and I don't know how else to say it...my hope was fatigued.  All logic told me this was just one data point in our journey, but my spirit was tired.  Once again, the story of Peter coming in discouraged and exhausted after a fruitless night of fishing came to mind.  Jesus told him to go back out...to do this one more thing, to try one more time.  It's those words I heard in my weary spirit as I mentally grabbed my well-worn oar in my hand one more time.

Which brings us to the second piece of equipment, called Tesla lights (www.teslaenergylights.com).  A modern piece of equipment based on work done by Tesla and Lahkovsky at the end of the 19th century and in the early 20th century.  It would take me a long time to explain, so if you are more curious, there is lots of information at the website.  Abbie was able to sit in front of these lights beginning on 2/20.  After two sessions, we did another EIS, wanting to see if her voltage has risen significantly from her +53mV starting point (remember we are designed to run at -22mV).  Her voltage hadn't moved much, but one part of her anatomy had changed color -- the frontal lobes of her brain were grey!  This explained why she was grouchier and more frustrated.  Her processing was getting better, but her abilities to express and move were not (yet).

On Sunday, 2/24, after six treatments we did another scan.  Dr. Tennant's nurse, Vickie, put it best when she said of my grinning face glued to the screen, "It looks like you are looking at the first picture of your firstborn child!!"  We had raised her voltage 20 points in 4 days -- she was now at +33mV.  A long way to go, but what progress!!  

My visual brain, however, loved the colorful body I saw on the screen.  Her frontal lobes were yellow!!  The thalamus (important deep brain structure) was grey, as were many other parts of her brain.  All the dark blue was gone save for one spot in one lung.  The pulmonary artery of her heart also showed yellow.  Very interesting to me is that her dopamine level, which had been low, was now normal.  The only new input had been the light treatments.  On this day, Abbie made it very clear that her biggest frustration is her inability to speak -- but that is changing as well.

Since we began the light treatments some very interesting things have happened.  Last Monday we had a very difficult PT assessment session -- the measurements of Abbie's range of motion in her lower extremity joints were all worse now than before we started the Baclofen relaxing medicine in December.  She could not wear orthotics (foot splints), and even diaper changes were sometimes challenging because of high muscle tone.

The next day our dear Maria Margarita came to see us.  I did not tell her about the PT session, but she immediately grabbed Abbie's feet and said, "We must start here!"  She felt that the limitations in Abbie's feet and ankles were not so much neurological or even muscular, but rather because Abbie had a "frozen" bone (talus) in her ankles.  We used copious amounts of castor oil and Arnica gel, but two hours later Abbie had ballerina legs...I could not believe it.  We have kept up the work this week with more castor oil (sometimes she even sleeps with castor oil bandages wound around her legs) and a homeopathic gel called "Traumeel" that really helps the discomfort after the hard work.  Abbie wore her orthotics to church on Sunday, and kept them on for hours.  The same little girl whose feet couldn't be coaxed into them for one minute the week before!

Her words have been coming as well.  The other day I suctioned her and I thought I heard her say, "Thank you"..so I asked her if she had said it.  Immediately, a huge grin, dimples and flashing eyes evidenced her excitement at being understood!  Today, her nurse asked Abbie if she wanted to be suctioned, and then waited.  When I looked at Desiree she said, "I always ask her now, because last week she told me 'No!'"  Since Abbie has many ways to get her point across, I didn't think too much of it, but did ask, "How did she tell you 'No?'"  "Oh, I mean, she said 'No' with words.  So, now I always ask first."  Hurrah!

Today brought our afternoon speech therapy session at UH.  We've been trying a new joystick switch with Abbie that can activate a different device in each direction -- for example, the hope was that eventually she will be able to pull to the middle for "yes" and to the outside for "no".  First, though, we have to teach her to use it.  We started by letting her pull to the outside for "yes", because that is the movement her body naturally wants to make.  Last week, thanks to a wonderful switch toy sent to her by Jordan, we motivated her to pull to the middle.  This is really, really hard work for her as she has to overcome a lot of tone to do it.  

Today, we put the joystick in the right hand, with the "yes" requiring her to pull to the middle.  We also put her old-style switch in her left hand so she could click for "no".  We started out matching colors of play-doh.  She did well at this, but really lit up once we said we could move along to reading.  It was when she was matching color words that we began noticing she was pulling the joystick out for "no" --- she was doing the move we'd hoped to teach her sometime in the future!  She matched all the color words and then we moved on to shapes.  The highlight of this part is that they introduced a word we've not worked on, "rectangle" -- after they had showed her, she later correctly identified it.  She LEARNED it in one session!!  All while doing major motor work with her hands.  It seems that she really understands moving the joystick one way for "yes" and the other way for "no" and that her body is becoming increasingly capable of doing this.  What a day!!  I was so incredibly proud of this little girl, who worked so hard that her arm was often shaking with effort.  She is my hero.

When that call to do "one more thing" comes....summon your last shred of strength and answer it.  He who calls is Faithful and True, the Giver of all good things.

A Memorable Weekend

Our family spent a wonderful long weekend on Maui, with a couple of special highlights for Miss Abbie. The first, as you can see above, was her getting a chance to swim with her Daddy.

I was a little concerned about how she would react to the cold water, but as you can see...she loved it! She grinned the entire time she was in the pool, and so did Ray. My smile was pretty broad, as well.

There was some serious love flowing from Abbie to her Daddy, as she made googly-eyes at him. She especially enjoyed when he pretended to be her motor boat, and sped her around the pool.

The travel to Maui could not have gone any smoother, the weather was beautiful and the hotel was lovely. It's amazing when you can feel yourself being blessed as it actually happens. God gave us one giant sabbath to rest and recover, and it has worked wonders.

The other thing that amazes me sometimes is when other people view Abbie through the same lens I do, especially when they are strangers. The day we were leaving we spent the morning hanging out by the pool. A man named Mark walked up with his 7-year-old daughter, Brooke, because her interest had been sparked as they walked by the handicapped pool lift and then saw Abbie's wheelchair. So, they stopped by to say "hello" to Abbie, and ask just a few simple questions. They were so kind, and Abbie loved having a girl to chat with, even for just a few moments, since she was utterly surrounded by boys all weekend.

A while later, Mark and Brooke came back, with Brooke bearing the gift of a cute little penguin water toy for Abbie. Mark started talking directly to Abbie saying, "You know Abbie, when Brooke and I got in the water we started talking a lot about you. We decided that we see a lot of courage in you, a whole lot of courage. And, that you help take our fears away."

I was stunned by his choice of words, because not only is that what I see in Abbie as well, but from the beginning the Lord has been using this whole journey to rid me of every fear except the fear of Him. And, I was so thankful that Mark chose to speak directly to Abbie, and to acknowledge her so powerfully.

I am so thankful when God sometimes uses real people to speak real words that I can really hear. Below is a picture of Abbie, and her new friend, Brooke.

Validation

This past week brought me two types of validation: the opportunity to validate the amazing precision of Maria Margarita's work, and the chance to have professionals validate the fact that Abbie is reading. What a wonderful week!

First, to our dear Maria. In our session last Tuesday she began working intensely on Abbie's chest. In the midst of her work, she paused, looked up at me and said, "There was some trauma here, on the left side of the trachea, caused by the initial intubation, I believe. It is affecting her pericardium (lining around the heart), the pleural lining (around the lungs) and the diaphragm. All of those connective tissues just clamped down after the shock of the injury and then this intubation trauma"

I was speechless. There was NO way she could have known that Abbie's medical record describes the ET tube being improperly positioned just a bit when the paramedics placed it, and it having to be repositioned in the ER...causing some trauma to her trachea.

As she continued to work, Abbie's chest broadened out below her thorax and she began to engage her diaphragm in breathing. Abbie has had a much better week overall in the respiratory department, and I know it's because of Maria's work. There is a slight trade-off, though. After working hard with Maria, Abbie always has a lot of "junk" to dump out of her body. So, on one hand she's breathing much better, but on the other there are times when I am constantly, and joyfully, suctioning.

Maria then did some very deep work on Abbie's brain. I sat, with two neuro-anatomy atlases at the ready, so that I could understand where they were working. At one point they were working on the Thalamic Nuclei (another thing I'd not heard of before). The precise area they were working on projects into the frontal lobes, where Abbie was wanting to do a lot of work that day...it all fit together. I have 3 pages of notes from that session, but I won't include it verbatim here. If you are a brain injury parent, please feel free to contact me for much more detail.

It may sound strange, but Abbie guides Maria to the places in her brain she wants to work. There was one very specific point that Abbie was insistent about, but didn't make sense to me because it was near her right eustachian tube. As far as I know, hearing is the one faculty we've not had challenges with. Maria called me later that night, from the medical library. The point Abbie had insisted she work on was so precise that normal anatomy texts didn't describe it fully. Maria was amazed to find, in the medical text, that the specific point was a key intersection of many cranial nerves (and other important structures that I forget at this late hour.) She just laughed and said, "That little girl is going to grow up to be a brain surgeon, because her knowledge of neuroanatomy is so precise!!"

Maria will see Abbie again tomorrow, and in accordance with Maria's request, I have gotten copies of Abbie's MRI for her to look at. Taken 3 days after Abbie's injury, those images are burned in my mind forever, along with the Lord's whispered words, "It has to be this bad." I haven't looked at them since that dreaded lightbox conference in the PICU. Brimming with my newly-acquired amateur neuro knowledge, I held some of them up to the light tonight. They still make my stomach turn. A perfectly-formed brain just devastated by injury. But, I am curious what Maria will think of them tomorrow.

The second form of validation came today at Abbie's intake interview for the new semester at the University of Hawaii. We met our new student-therapist, April, who was accompanied by our long-time therapist Lisa. Towards the end of the session, I mentioned that Abbie is learning to read. I took her flashcards and books to the session, in case they wanted to see them.

Lisa and April said they'd love to see how Abbie reads. That's when the knot in my stomach formed. I can feel the breeze from the nodding heads of every brain injury family as I say, "Consistency is not our thing, " and what she can do one day, she might not do again for weeks. Rats. I had told them she could read, so now it was "put up or shut up". Plus, Abbie was using a new different switch, so I didn't know if that would throw her off.

I got out the original five flashcards that she first mastered in November. I don't know why I chose those, since she hasn't looked at them much in the last six weeks. But...she did GREAT!! She didn't get them all 100% right each time, but she was engaged, and was able to get most of them right. This great accomplishment by our little smartypants dictated her goals for this semester....LITERACY!! We are going to work reading into as many activities as we can. I am thrilled because Lisa was the first professional to see Abbie actually read. I am glad it was her, because she has been with us since the PICU, through the long days of hoping for any communication at all, and now to have her see Abbie read was a victory for us all!

These days are sweet indeed, but I could use your prayers for more sleep. I mentioned the times of constant suctioning above, and they tend to cluster in the nighttime hours. I have been getting very little sleep for the past several weeks, and it is really beginning to take a physical toll on me. I feel like an old, cranky zombie and I imagine my family would concur with this self-assessment.

But, most of all, even (or especially) during the night watches my soul just sings praises to God. Sometimes for what He is doing for Abbie, but lately I have been especially overwhelmed by the fact that He calls me "friend." Can you imagine...the God of the whole universe would stoop that low, and lift me that high? Perhaps it's because I can't really wrap my mind around the realities involved with Him being my Saviour or Redeemer, but Friend...I can grasp that one, and will never fathom why He would choose me for one. I am just so utterly grateful.