"10/31/05
Abbie's very first pony ride!  She did a great job controlling her body and her head and really seemed to enjoy being in the saddle."

Monday, 11/21/05
            WOW!  All I can say is “WOW!!”  We’ve had a breakthrough tonight that has left me in a bit of shock, but it’s so great that I don’t want to wait to share it.  My mom made Abbie some “looking mats” which arrived in the mail today.  They are made of black fabric squares and bright fabric squares, and are beautiful.  Abbie enjoyed looking at them this afternoon, but was especially drawn to another goody Grandma included in the box.  She sent a string of black, red and white squares of different sizes that really drew Abbie’s eye.
            This evening Crystal told me that she’d been showing the squares to Abbie individually and telling her what color they were.  Abbie was intent upon what Crystal was doing.  Curious to see what would happen if we combined her switch with this activity, I programmed it to say “That’s the color!”
            First, I showed her a red square and asked her, “Is this orange?”  No response. “Is this black?”  No response.  “Is this red?”  Immediately she hit the switch to answer me with, “That’s the color!”  Wanting to see if this was just coincidence I went through the red, black and white squares six times, and she was right each time.  Ray walked in as I was showing her a Nemo blankie, and he was just in time to see her hit her switch when I asked her if it was orange.  She correctly identified red, black, white, purple, orange, and green.  Even as I type this I am stunned.
            This means our little fighter is not only seeing well enough to differentiate colors, but has the cognitive ability to assess what she is seeing and then transform that assessment into a physical movement to give an answer.  Her intelligence is finally finding a way out to all of us!  This is such a big step I’m not sure it will all sink in tonight, but it proves that our little girl really is in there, and is working hard to make her way back to us!
            I just want to scream “Thank You Jesus!!!”  He has never left us, and His promises have made it possible for us to stand on faith when the world may think we’re crazy.  Thank you for praying with us – nights like tonight are answers so grand that I am thankful the Psalms were written…my words fail me when I try to come up with praise profound enough to measure up to this night!

Friday, 11/18/05
            Happy Friday!  OK, so I’ve got great news and a good story.  The great news is that Abbie continues to thrill and amaze us in therapy.  But, I have to go back a few days to give you the whole picture.  Right now Abbie’s biggest interest is the big, red slide at the park near our house.  During our daily walk we have to visit the slide, touch it and talk about when her legs are strong enough to climb the stairs so she can slide down it.  On Wednesday evening she was smiling while dreaming.  When she awoke I asked her, “Abbie, were you dreaming about the big red slide?”  She nodded, smiled and clucked her tongue to give an emphatic, “Yes!”  I said, “Well, tomorrow at therapy maybe we can practice walking with Auntie Lynette to get you ready for the big red slide!”  This evoked another emphatic “Yes!”
            On Thursday morning, getting ready for therapy, I reconfirmed with Abbie that her agenda for the morning included walking.  But, when we got to the PT room I saw that Lynette had a huge ball and a swing ready to go – no Walkable today.  I didn’t want to say anything so I kept quiet about Abbie’s plans for the session.  Lynette sat Abbie down on the ball and then began rolling her forward so that her toes could touch the floor.  She kept going and eventually asked me, “Are her feet flat on the floor?”  Sure enough, they were. So, I thought I should tell Lynette that Abbie was intent on walking.  When Lynette asked her if this was true Abbie straightened up her trunk and head as if to say, “Let’s go!!”
            So, off we went, without the Walkable.  Lynette helped Abbie with her upper body and I helped Abbie with her legs.  The most obvious difference we saw from the last time Abbie went walking at therapy was with her quads.  The last time we used the Walkable we had to swing her legs a little to the outside to bring them forward again after each step because her legs were too tight to bend her knees well.  This time, as soon as I would lift her back heel up her knee would bend nicely and the leg could just go straight forward.  This made the whole process so much easier that we just kept walking until we ran out of room.
            At the end of the session Lynette said, “Well, I guess we can move on to something other than the ankles now that her heel cords are doing do well.”  Hurrah!!  A few months ago the orthopedic surgeon said he wouldn’t even treat her heel cords with Botox because there wasn’t enough mobility left in her ankles.  Now, she doesn’t need that treatment, thank you!
            After PT we went to the cafeteria to have lunch and kill an hour until speech therapy.  Abbie was tired, and should’ve fallen fast asleep after her tummy was full.  However, she is far too nosy to nod off when there are people talking nearby.  We had to take her back to a quiet hallway in the rehab department so she could take a catnap.
            Then, we had a real breakthrough day using Abbie’s switch.  We generally give her a choice between two things, like reading a book or watching a movie.  This is how the session started out, and Abbie was doing well.  There was a computer screen with big pictures of her choices, and she was doing a good job of looking at that.  Then, when she would choose either the movie or the book she would shift her attention and focus well on those.  After about 20 minutes Abbie quit hitting her switch so quickly, which often happens after she’s worked for a while.  That is the hard part of therapy – sitting there waiting and hoping for something to happen, and often not seeing anything.  Your mind can do funny things to you during periods like that.  Even though she’d been doing well, it’s easy to start thinking, “Maybe she doesn’t really understand.  Maybe her choices haven’t been as intentional as I thought…”
            During a lull like that Lisa reminded the speech therapy student, Rebekah, that she had actually programmed the computer with three choices:  “book”, “movie” and “no” so that Abbie could choose neither of those things.  So, once again Rebekah asked, “Abbie, do you want to read a book?”  No response.  “Do you want to watch the movie?”  No response.  “ ‘No’ – do you want to do neither of these?”  An instant response from Abbie confirmed that her silence hadn’t been non-participation, but had been her “no.”  So, they gave her a new choice – to play with balls, and she quickly chose to do that!  I just had to look out the window for a minute so that I wouldn’t cry.   This was a huge confirmation of Abbie’s cognitive abilities and readiness to learn.
            The skill they are teaching Abbie, auditory scanning, is very difficult.  Because her vision is not dependable we have to rely on her listening skills.  Imagine that you are walking a tightrope while crocheting a scarf and the lights keep going on and off.  Then, a waiter comes up below you and starts listing the specials for the evening, telling you that you will have to make your choice while walking and crocheting.  As you are thinking about what you want he often repeats himself, which distracts you.  Perhaps he even becomes impatient because you take a while making your choice and says, “Well, I guess you’re not hungry anyway.”  This is what it is like for Abbie to learn how to listen to choices, assess them, decide what she wants, and coordinate her body to hit her switch at the appropriate time.  She amazes me!
            And now, the story…you may recall that about a year ago a very kind dog breeder on Kauai donated a Labradoodle puppy to become a service dog for Abbie.  A terrific woman named Susan brought the puppy, Odie, into her organization, Hawaii Fi-Do, to begin his 18-month training period.  Early this year we met Susan and Odie at a park.  Susan also had an adult Labradoodle with her.  After seeing the size of the mature dog, talking about the ongoing training and discipline Odie would require, and thinking about how that meshed with our family we confessed our reservations to Susan.  She was so gracious and said, “If you don’t think Odie is right for your family, don’t worry.  I have a wonderful family on the North Shore that Odie would be great for!”  The boys were sad that Odie wouldn’t be joining our family, but we knew it was the right decision.
            On Friday we were at Abbie’s group speech therapy session, and the parents were discussing field trips we could do together.  Someone mentioned Susan and Hawaii Fi-Do as a possibility.  Then, this family I just love started talking about how Susan is currently training a Labradoodle for their precious son Kahiau.  That caught my ear, so I asked what the pup’s name is…”Odie!”  He could not be going to a more deserving or loving family!  This is a family that drives over an hour on sunny days to bring their son to our group.  On one stormy day it was an 8-hour trip for them. I was overjoyed to hear how well Odie has bonded with “his boy.”  Odie can sense impending seizures and if Kahiau coughs in his sleep Odie is there instantly, sniffing and licking him to ensure he’s OK.  It twirled me around for a while to find out how completely this circle has closed.
            Will you please pray for my dear friend, Katie?  Her husband is in Iraq, leaving her alone with their six children, ages 8 and under.  As if this isn’t difficult enough, Katie has injured her knee and may require surgery.  She is an amazing woman who had been shouldering a very heavy load with true grace – but she needs a healthy body to do it. We know Jehovah Rapha heals, so will you lift her up to Him?
            I hope I can write another update before Thanksgiving, but sometimes the time gets away from me.  So, just in case…have a great Thanksgiving! The list of what we have to be thankful for would fill pages and pages, but I’ve learned that it’s a very good thing to number your blessings one by one and be thankful for how long it takes you to do that!

Sunday 11/13/05
            Aloha!  I am back from getaway too wonderful for words!  Although I live in paradise daily, visiting a neighbor island reminded me just how blessed I am.  Kauai is so much quieter, calmer, and “country” than O’ahu, which are things I crave.  I have never stayed in a nicer hotel than the Grand Hyatt – you can see for yourself at www.kauai.hyatt.com. Poipu Beach, the gardens, the pools…it was almost too much to take in.  Plus, my sweet friend Sandra and I spent hours talking, and I got a chance to really unpack my soul and set some things down that I don’t need to carry anymore.
            On Saturday morning I was reading the hotel Bible on the lanai (bless you, Gideons!) My Psalms cycle took me to Psalm 42.  The first three verses read, “As the deer pants for the water brooks, so my soul pants for You, O God.  My soul thirsts for God, for the living God; when shall I come and appear before God?  My tears have been my food day and night, while they say to me all day long ‘Where is your God?’”
I paused and prayed that my soul really would thirst like the deer, and  was thinking about where my God is in the midst of our longing for Abbie when a knock at the door signaled that breakfast had arrived.  I rose to answer the door, leaving the Bible open on the outdoor table.  When the waiter asked where we wanted to eat, I told him “outside”, but he was past me before I could get the Bible out of his way to set the table.  He picked it up, and instead of quickly laying it aside, he started reading it.  I asked, “Do you read the Psalms?”  He didn’t answer directly but said, “Psalm 123 for you, Psalm 123.”
Psalm 123:1-2 “To you I lift up my eyes, O You who are enthroned in the heavens!  Behold, as the eyes of servants look to the hand of their master, as the eyes of a maid to the hand of her mistress, so our eyes look to the Lord our God until He is gracious to us.”
I read it several times, knowing God meant for me to understand something.  Finally, I realized it was the answer to my question from Psalm 42. Where is my God?  He is right here, and I have only to keep my eyes fixed on Him until He is gracious to me.  Not if, but until.  I thanked the man for blessing us, telling Him we have been waiting for a specific grace for a long time now and that he had encouraged me greatly with the Word.   I was I in awe that as I was reading my Psalms I wasn’t just sitting in a chair pondering to myself, I was actually having a conversation with God – and He answered the question I asked Him before I even had it fully formulated in my mind.
As I mentioned above, Sandra and I had lots of time to talk about pretty much everything that moms and wives and daughter of God think, care and worry about.  One thing she encouraged me to do was to put some info on Abbie’s site about where all you lurkers, those who won’t email me, can get the plankton we’ve been using with Abbie.  After seeing what it’s done in Abbie and I, and hearing stories of what it’s done in people with cancer, diabetes and other problems, I agreed with her that I should get these links out to everyone. You can go to www.whyplankton.com to learn about what plankton is, how the product was developed and why it’s so good for the human body, and then you can go to www.planktonblooms.com to actually buy the product we are using, which is called “FrequenSea.”
We flew in from Kauai this morning in time to make it to church, and I then came home to find Abbie happy and peaceful, watching football, just like a good little Vara.  She did great while I was gone, with many thanks going to Crystal who really pitched in to make this weekend smooth for Ray.  I am anxious to watch her play on the beach just like the little girls I watched at Poipu yesterday…but I know the day is coming, and I know just where we are going to celebrate.  If you live on Kauai you will probably hear us praising God on your white sand beaches as we watch Abbie skip in the water.

Isn’t it strange
That princes and kings,
And clowns that caper
In sawdust rings,
And common people
Like you and me
Are builders for eternity?
Each is given a bag of tools,
A shapeless mass,
A book of rules;
And each must make—
Ere life is flown—
A stumbling block
Or a stepping stone.
--R.L. Sharpe

Friday, 11/11/05
            Happy Veteran’s Day!  We are praying that God would especially bless and protect the Veterans-in-the-Making who are currently overseas, as well as their families who wait anxiously for them.
            It has ended up being a good week for Abbie after it started out with her suffering from a cold.  She was pretty subdued over the weekend, which was disappointing to me because I was so enjoying seeing new things each day.  She was coughing often on Monday and and a little  on Tuesday, but by Wednesday she was completely clear, which confirmed to me that the plankton really is having an effect on her.  We ran out last Friday and didn’t receive the new shipment until late Monday afternoon.  Her decline and recovery matched that timeline almost exactly.  When we’re trying so many different things simultaneously it is difficult to isolate any single thing to determine its true effectiveness, so it is nice to know for sure how relevant the plankton is to her recovery.
            Carol came to give Abbie a Healing Touch session on Wednesday morning, and I took that opportunity to go in the kitchen and make Abbie’s food for the day and some chicken soup.  I was glancing at Carol and Abbie in the family room as I sliced and blended, but wasn’t paying close attention.  Then, I heard Carol gasp and became a little concerned.  But, then she asked, “Does she move her hand and arm by herself??”  Abbie was showing Carol how she moves her arm and hand to play with her toy.  Carol was impressed not only by this but by how hard Abbie was concentrating on what she was doing.  Abbie’s arms were so loose as she was laying on her side that we were doing circles with them, and each time her hand would pass in front of her face she would focus her eyes on it pretty quickly.  Not bad for a girl who four months ago was termed “blind”!! 
            Carol then gave me a Healing Touch session on my bed, and by the end of it I was asleep.  I must’ve been pretty tired because when Chase called a couple hours later to tell me that I needed to pick him up because he didn’t have a November bus pass I became very irritated with him, saying, “Why does that matter, Chase?  It’s not even November yet – sheesh!”  Um, yea…mom – wake up!!
            Thursday brought our assistive tech session, where Abbie’s personality was in full display.  As she worked with Rebekah and Debbie, Lisa and I stepped behind her to look through some catalogs and discuss new switches for Abbie.  Abbie was not choosing to play with a ball or watch a movie, so finally Debbie asked, “Do you just want to eavesdrop on what Mommy and Lisa are saying?” She immediately hit her switch to say, “Yes, please!”  That same nosey little girl is in there!
            Thursday night brought another new/old step for Abbie.  In the morning I asked her if she wanted to eat food through her mouth, and she gave me an enthusiastic nod.  I haven’t been feeding her orally for a while now because it’s just not something we’ve been focusing on, but with the changes in her mouth and improvements in head control, I though perhaps we should try again.  I didn’t get around to it until the last feeding of the day.  I was planning on just giving her tastes of squash to see if she’d even let the spoon in her mouth.  But, she wanted to eat, and so she did!  The volume was not huge -  perhaps 1 ounce or so.  But, she responded quickly to the spoon, chewed and swallowed well, and didn’t aspirate anything!  Praise God!  I have been waiting for Him to tell me it was time to pursue this instead of trying to force it in my timing (which I did for the first year.)  He gave me the assurance that anything from Him isn’t “sorta, kinda, half-way”, so that when it’s His time for Abbie to eat, she will and I don’t need to stress myself out about it.
            But, today, I must admit, it is all about ME!  Ray is sending me to Kauai for the weekend with a special girlfriend.  We’re both busy moms so I’m sure the schedule will include plenty of napping, lounging, snoozing, and sleeping in – and I can’t wait!  It’s big step for me to leave Abbie for two nights, but I am not concerned at all.  Between Ray and Crystal she’ll be cared for perfectly and I will return much refreshed.  I hope you have a terrific weekend as well!

Abbie after her favorite time of day - bathtime!
You can see the beginnings of a smile that I wasn't able to
catch with the camera.

Thurs., 11/3/05
            Not a lot of sleeping got done in our house last night.  Abbie and RJ were up in the night with coughs, and both eventually ended up in my bed after Ray waved the white flag and moved to the couch.  RJ slept holding Abbie’s hand, and then held her in the morning while I helped Matthew with some schoolwork.  This would pay sweet dividends later in the day.
            As soon as Debbie got here we were off and running to PT.  We got the “good parking spot”, and so were a few minutes early for our appointment.  As we were sitting in the hall Abbie began to babble using many of her new sounds and new sound combinations.  Then, she hit on one that she kept repeating and which sounded very intentional. At first I thought she was saying “hungry” because she uses that word a lot, but as we listened more closely Debbie and I looked at each other and said, “RJ!!”  She was saying RJ’s name – I couldn’t believe it!  But, it came again  and again until we confirmed it with her that that’s what she was saying.  Nothing like brotherly (and sisterly) love!
            Already grinning from that performance, we went on to have a terrific PT session.  As I wrote recently, I am truly loving therapy now that we are seeing tremendous differences each week.  Lynette was bouncing Abbie on a very large peanut-shaped ball, and then started slowing rolling her forward until her feet touched.  No complaints, so she kept Abbie moving forward.  Soon Abbie was standing flat-footed on the ground with nice soft knees.  Her bottom was still touching the ball, which we kept bouncing.  For the most part, though, she was standing straight up and down, bearing much more weight than she does in the Walkable or her stander, and she was doing outstanding!  It amazed me to see how tall she really is now, and what a big girl she looks like.  After her legs started to tire we sat her down in a position which allowed her legs to dangle.  We were able to get her knees bent to ninety degrees, allowing her feet to touch the floor nicely.  Lynette said, “I don’t know if it was that massage or what, but I absolutely can’t believe how much her quads have loosened up this week!”
            After lunch we went to assistive tech therapy, where Abbie uses her switch.  We have a wonderful student from UH, Rebekah, who is working with Abbie under Lisa’s supervision.  Rebekah had created a picnic activity for Abbie, where Abbie had to choose what foods to take along on a picnic.  There were very small pictures, no bigger than 1” square, for Abbie to look at as she made her choices.  As they started out Rebekah’s first comment was how well Abbie was looking at each little picture, really focusing in on them.  Then, we noted how quickly Abbie was using her switch to indicate her choices.  After the picnic, Abbie got to do her favorite thing – watch a movie.  She chose Ice Age, and then had to use her switch to start the movie and to keep it going.  While she was busy with that Lisa gave me some new toys to bring home for Abbie.  The first was a TV remote control switch.  This will allow Abbie to change the channel on the TV.  She only watches shows that are on three channels, which happen to be right in a row, so we could have a lot of fun with this new switch.  The second device allows us to plug into it any appliance or other electrical item and then have Abbie operate it via her switch.  For example, I can plug the vacuum cleaner into it and then ask her to turn it on and off for me, so she can help with chores.  She can also turn on her VitaMix to help me make her food.  Technology is amazing!  At the end of the session, Rebekah looked up and said, “What I really see this week is a big improvement in head control!”  I thought “Wow!  When even a speech therapy student can see that, it means we’re moving along!!”
            Every day is a good day in our house – and for that we thank our Lord who has never left us!  If you were following my updates in the guestbook you know that sweet little Maggie May Williams passed away on 10/27 at the age of three after fighting a very rare form of leukemia.  Please remember her mom and dad, Rick and Beth, and little sister Angelina in your prayers, as well as many others who loved her.  And, there is another little one in need of our prayers – Kelsey is 9 months old now and was diagnosed with adrenal cancer two months ago.  You can read her story and send an encouraging note to her family at www.prayforkelsey.com.
            Updates will probably be coming more frequently now, just so I can try to keep up with Miss Abigail Faith. Thank your for your continued companionship and uplifting and empowering prayers!  As I was saving this update I realized that today is 18 months since the accident.  In some ways I can’t believe it’s been that long, and in other ways I really thought we’d be farther along by now.  All that pales in comparison, however, to what I see when I look ahead, even to tomorrow.  Wow!  Is this exciting or what!?!

Tues. 11/1/05
            Last night was a big night for our Cowgirl Ladybug!  She had her first real pony ride at our church’s harvest festival!  Thankfully, it was a balmy night since we couldn’t take any blankets up on the pony.  But, I think Abbie was so entranced by what she was doing that a snowstorm wouldn’t have mattered.  Crystal led the pony, I stood on one side and Joe, a member of our church, stood on the other.  Abbie did a great job holding up her trunk, spreading her legs and worked hard on holding up her head.  I was just thrilled to see her on an actual horse, since we always pretend that her bouncy ball is the fastest horse in the race.
            We also saw, once again, how the Lord’s timing is perfect.  Abbie shares a birthday with my precious friend Katie.  We were going to have a little birthday get-together back in August, but because of colds and sniffles it didn’t happen, and we haven’t managed to reschedule it.  Katie and her six “kittens” (they are the Cheshire family, after all) were also at the festival.  As they were leaving Abbie and I accompanied them to their van so that they could give Abbie her presents.  They had a beautiful white stick pony for her – what a perfect memento of this wonderful night!!  Then, 7-year-old Katrina unfurled the poster she made for Abbie which read. “Love Never Fails!!”  So, there I was, blubbering in the middle of the road with little Darth Vaders and Snow Whites wandering by.  4-year-old Christa, who is very  much a kindred spirit with Abbie, proudly showed off her poster as well, and I cried again thinking that perhaps this is what Abbie would color if she could.  As we parted I snapped a couple photos of everyone together to email to their daddy in Iraq.  Today is his “half-way day”  We thank God for protecting him thus far, and ask you to continue with us to remember Walt in your prayers
            We had OT today, and I must say I LOVE THERAPY these days, because the therapists are wearing out their cheeks smiling for an hour straight.  Abbie’s arms and hands were so loose that she was able to help push and pull a toy, while looking at it as well!  This may not sound like much, but this is a huge step for our girl!  I think she may have been so relaxed because of a wonderful 2-hour long massage she received from my friend Kristin on Monday.  Not only is Kristin my friend and role-model of serenity and grace, she is also a world-class masseuse – she worked on the President and Mrs. Bush when they visited Hawaii.  Abbie was a very good girl and let Kristin work on her pretty deeply.  It has made a huge difference in her tone and comfort level.           
            But, the biggest breakthrough yet came in the afternoon.  Even as I write this I am frustrated with my inability to express my excitement and gratitude.  Spurred by Abbie’s terrific OT session I pulled out a toy that RJ had picked out for her birthday.  It’s kind of like a ferris wheel with four spokes on it, each with a ball on it.  I laid Abbie on her side, and her arm and hand were so loose that I could easily take her arm and place her hand on the ball (again, doesn’t sound like much, but for Abbie it is), then I told her to push the ball to the floor.  She got stuck halfway a few times but was soon doing it quickly.  I was so excited I was singing, I think.  But, she had more…I turned away to tell her brothers to come watch, and when I turned back she was raising her own arm to reach for the ball on top, while focusing on that ball with her eyes.  She can play on her own!!!
            As Arlene put it in OT today, “It is coming so fast now!  For a long time she was gaining slowly, but now..WOW!!”  Wow, indeed.  I think that the Lord has blessed us immensely by choosing the long road for us.  Not only have we learned about the healing power of God, but we’ve also learned about His sustaining grace.  And, perhaps Abbie will show that no one should ever be given up on, no one!

Weds. 10/19/05
            This is just a day where the good things never stopped coming.  Abbie awoke smiling and relaxed and we were off to an early start at physical therapy.  Because she was so loose I was able to get her orthotics on her before we left, which surprised her therapist tremendously.  This allowed us to get Abbie back up in the stander again.  Lynette has built it up with padding to allow for Abbie’s height, and she did great!  She was up on her feet for over twenty minutes before her legs got a little shaky.  After we got her down Lynette spent quite a while working with Abbie’s hips; stretching, massaging, and assessing where the tightness is.  She came to a bit of a different conclusion than Dr. O, Abbie’s orthopedic surgeon.  After working with Abbie, Lynette feels that the muscle group really tugging on the hip socket is right under the skin, rather than a muscle that originates inside the pelvis, which means that if we ever want to consider Botox we should be able to use it where we need to.  But, at the rate Abbie is improving, I don’t think we’ll be considering that any time soon.
            In the afternoon we patterned Abbie for the first time in a couple weeks.  It’s difficult to keep up with that now because it’s rare to have three adults (or big kids) in the house before Abbie’s bed time.  I was apprehensive about how she would respond, but that little girl was a champ!  She had practically normal tone in her body and just let us move her as we wished.
            Just before our small group arrived at seven I was telling Ray that it had just been a wonderful day..but, it wasn’t over yet!  As we were beginning our meal one of our members said, “Is that Michelle Lutjen at the door?”  What??  They moved to Florida a year ago.  But, sure enough, there were Bobby and Michelle – in town on an unplanned visit because of Michelle’s mom’s unexpected death.  When you love people, you never miss a beat and we laughed that evening away as if they’d never left.  Michelle is our steadfast webmaster for this site, and we owe her so much. Would you please just pray for her and her family during this time?
            The Lord gave me a neat picture on the way to therapy this morning.  I was just turning to get on the freeway when I saw a Chevy compact pulling into the Shell station, followed closely by a Rolls Royce.  “That’s just like all of us,” I thought.  Doesn’t matter whether we’re driving a leased economy car with the Scotchguarded cloth interior, or we’re cruising in the hand-tooled leather, silver-winged symbol of prosperity – on the inside we all need the same thing. 
            “All births of things are weak and tender, and therefore we should have our eyes intent upon beginnings.” ~ Michel de Montaigne

Sunday 10/16/05
            I’ve been spending the past couple of weeks getting to be Kyle’s mom while he had a two week break from school.  We’ve hit every skate park nearby to give him a chance to play on his new BMX bike.  Abbie has also been doing some great things.
            On Wednesday we visited her GI for a checkup.  It has been a couple months since Abbie’s last visit, which was when we noted how much weight she was gaining.  Dr. W. walked into the room, looking at her file, and exclaiming, “Way to go!!  You have really stabilized her weight!”  In fact, Abbie has lost a little over a pound, mostly from her face and her almost-gone spare tire.  I told Dr. W. that we had switched Abbie to a blenderized diet and started her on the plankton, which really seemed to normalize her metabolism.  She was much more supportive of the diet than I had expected, since generally physicians like the precise calorie and nutrient counts available in canned formula.  We don’t need to have another check-up until April! 
            When we had Abbie up on the table in Dr. W’s exam room, she  started to really fuss.  Dr. W. asked, “Is she going through a stage where she is more stressed now?”  I said, “No, she is going through a stage where she believes she needs to be rocked every afternoon.”  Dr. W. leaned over her and said, “Oh, do you want to be rocked?”  At the mention of the r-word Abbie turned to look at her and began clucking.  Dr. W. was modestly surprised and said, “Oh, wow…I see you know the word ‘rock.’”  I just smiled and thought, “Oh, she knows many words!”
            The day before her GI appointment we had OT and PT assessments, which we do every three months to measure her progress.  In PT she met every single goal, except the one involving a stander because she has outgrown the one they have.  One of her goals was to be able to sit with her legs straight and elbows supported on a bench by herself for ten seconds…she did this for minutes rather than seconds!  We are also starting to see good things like her moving her legs in succession, first the right and then the left.  She knows what she needs to do, it’s just a matter of loosening and then strengthening her muscles.  In OT we are working relaxing her arms and hands, which she is definitely improving at doing.  Like most of her body, we are finding that the tightness in her hands and arms is more under her control than it may appear.  If you just want her to open her hands and relax she may or may not, but if you ask her to make ballerina hands it’s almost a guarantee that you are going to see beautifully soft hands and flexible arms.
            Another highlight of last week was Abbie losing her first tooth!  One of her lower front teeth had been wiggly for a while, and was barely hanging in there when Debbie helped it to exit gracefully.  I had been trying to do this myself but couldn’t work up enough courage to just pluck it out.  Abbie was very excited about the Tooth Fairy visiting her house.  When she is happy about something she will nod with both her head and her eyes at the same time.  She was doing this heartily when we told her about the upcoming night visit.  She had two shiny quarters in her tooth holder the next morning, and kept them in her hand all day.
            I have tried to become more diligent about getting my Psalms cycle done every day, and the blessings have abounded.  Sometimes when you’re reading you can just feel something quicken inside you and you know that verse is for you.  I felt this as I was reading through Psalm 34.  Verses 19 and 20 read, “Many are the afflictions of the righteous; but the LORD delivers him out of them all.  He keeps all his bones, not one of them is broken.”  I knew that was for Abbie, especially the part about keeping all the bones, which is a strange thing to say unless you are someone facing a surgery where they want to remove parts of each leg!  I know Abbie will grow to be tall, keeping the entire length of each leg intact; this song of David was written for her!
            The other thing I have been utterly convicted of (again) these past couple of weeks is just how wretched I can be, and how much I need the awesome grace God so freely gives.  I don’t mess up in big, splashy, newsworthy ways, but rather in the little drip-drip-drip of the small mistakes and wrong attitudes that pile up over time.  One night as I laid Abbie down to sleep I began to pray with her as I always do, but was then overcome with the feeling of “How can I even presume to raise these prayers to a holy God?”  The Lord answered, “That’s why I taught you to pray in Jesus’ name…not because it’s a magical password, or mystical chant, but because on your own you cannot come to me and you know it.”  For a dark, quiet moment God let me see myself as I truly am, which drove the preciousness of His grace and mercy to the center of my bleeding heart.

            Psalm 39:4-7
            LORD, make me to know my end,
            And what is the extent of my days,
            Let me know how transient I am.
            Behold, Thou hast made my days as handbreadths,
            And my life is as nothing in Thy sight,
            Surely every man at his best is a mere breath.
            Surely every man walks about as a phantom;
            Surely they make an uproar for nothing;
            He amasses riches, and does not know who will gather them.
            And now Lord, for what do I wait?
            My hope is in Thee.

Tuesday, 10/4/05
            Another week where we are seeing exciting new things from Miss Abbie.  A couple nights ago I was sitting on the floor, leaning on the couch with her between my legs.  She was resting on me at about a 45 degree angle.  Then, she decided, “enough laying down already!!” and began to try over and over again to sit up.  She made it to almost-vertical several times, and then I said, “Abbie, you need to use your arms to help pull yourself forward.”  A couple more tries, and I could see her doing that.  Soon she was not only pulling herself to vertical but also catching herself with her arms if she went too far forward.  She could then purposefully stretch and reach toward her toes, which she loves to do.  I also saw really good head control during all of this.  My football-fan voice came out as I cheered each attempt and her growing success!
            On Sunday I was trying to sleep off a migraine, and in the grogginess that comes before alertness, the Lord gave me a vision of a steely little thread coming toward me through a jumble of chaos.  He said, “I have given you a filament of hope…” 
            “Well, yes, You have given me hope, but why just a little thread?  Sometimes I need so much more than that to hang on to!” I thought.  But, knowing that the choice of words makes profound differences with God, I meditated on the word “filament” which I though was a strange choice when talking about hope.
            “Yes, Tiffany, I have given you a filament..now think about what you most associate that word with, and perhaps it will make more sense.”
            The only time I have ever used that word is when explaining light bulbs to my kids.  “Aha!” said the Lord, “Now you are on to something.  I gave you a filament of hope because you are not supposed to be a static, stationary object at the end of that thread.  Life is not a game of Crack the Whip where you just hope to hang on.  I gave you a filament to light your way as you go!  In your hoping, even in your waiting, you are not to sit still and wait for all your answers, hopes, and tomorrows to come to you.  Come, walk with Me…and bring your light!  And, haven’t you noticed by now, that the more the darkness presses in on you, the brighter the Light is?”
            This little chat with the Lord has changed my posture this week from one of hanging on to my thread of hope and praying it would swing in the right direction, to grasping it firmly and setting off in pursuit…of God, the future, and things that I want to change.  I have also learned that changing one’s posture doesn’t necessarily mean moving at warp speed, as I have yet to get rid of that migraine and it has been dragging on me for many days now.  But, changing your stance sure does change your outlook!
            Please keep praying for Abbie’s healing process to move quickly.  The muscle tone in her heel cords is quite a bit higher than it has been, but this, too, falls right in line with what we were expecting, even hoping to see.  Her stoma continues to look better each day, and she is hardly coughing out of it at all now.

Psalm 94:17-19 (amplified)
Unless the Lord had been my help, I would soon have dwelt in the land where there is silence.  When I said, “My foot is slipping,” Your mercy and loving-kindness, O Lord, held me up.  In the multitude of my anxious thoughts within me, Your comforts cheer and delight my soul.

Thursday, 9/29/05
            I’ve been trying to write this update since Sunday, but time has been elusive.  The message that Pastor McDaniel delivered last Sunday really pierced my heart, and elicited the tears that I usually keep way down in my toes.  He was speaking about how God is the God of the impossible (and how thankful I am for that.), but also talked about how a broken heart is an acceptable sacrifice to the Lord.  He used a quote from one of my heroes, Elisabeth Elliot:
            “If the only thing you have to offer is a broken heart, you offer a broken heart. So in a time of grief, the recognition that this is material for sacrifice has been a very great strength for me. Realizing that nothing I have, nothing I am will be refused on the part of Christ. I simply give it to Him as the little boy gave Jesus his five loaves and two small fishes--with the same feeling of the disciples when they said, "What is the good of that for such a crowd?"
Naturally, in almost anything I offer to Christ, my reaction would be, "What is the good of that? The point is, the use He makes of it is none of my business; it is His business, it is His blessing. So this grief, this loss, this suffering, this pain--whatever it is, which at the moment is God's means of testing my faith and bringing me to the recognition of who He is--that is the thing I can offer.”

(Elizabeth Elliot, Worldwide Challenge, January 1978, pp. 39-40)
            I so identified with what Elisabeth was saying that I wept, realizing that although I can often compartmentalize it, my heart is still broken.  The first week after Abbie’s accident I heard God asking me to offer heart as a living sacrifice.  He says that still, and I offer it all, in many, many pieces.
            Well, that message so moved me that I was emotionally drained and wanted to must get out of church and to the car as quickly as possible.  I didn’t think I had the energy to make conversation with anyone.  I ran to the bathroom quickly as Ray was brining Abbie down the elevator.  On the way out, the first in a string of angels met me that morning.
            Kim, whom I’d never met, stopped me in the hallway, saying that she’d heard about Abbie from our mutual friend Katy.  She told me about how she had fifty friends on the mainland praying for Abbie, and that Abbie’s journey had truly impacted her life and faith.  Those words were the balm that my soul needed.  I just hugged Kim and thanked her for being God’s angel to me when I so badly needed it.
            I walked about two steps and then met Ruth, Kim’s mom.  She told me she was just visiting from California, but wanted me to know how deeply Abbie’s journey had affected her daughter, especially in causing her to seek to deepen her walk with the Lord, and to search for a church home.  I felt God impressing on me, “Look what I do with a broken-hearted sacrifice!”
            As soon as Ruth stepped away, Ethel, another woman I’d never met, came up to me.  She said, “I have two churches here and three on the mainland that I want to pray for Abbie.  Many of the people don’t have computers, so could you just tell me what we can specifically pray for?”  I was overwhelmed with the outpouring of God’s love through strangers.  I think I told her to pray for Abbie’s vision and muscle tone, but I was so in awe at this point, I can’t be sure what I said.
            I thought I’d make my way to the door at that point, but then I was stopped by Zane and Dianne, who were visiting from Georgia and staying at the home of our precious friends, the Bosgras.  They, too, told me they had been praying for us all this time, and then Dianne shared a story that made my heart stop.  She said, “Our daughter drowned when she was three, and now she is 29 and expecting her second child.”  Through Dianne, God said to me “Look way out there..great things, wonderfully normal things will come!!”  That girl’s daddy still choked up when describing how he gave her CPR 26 years ago, but he said, “She made it, and so we can believe with you for Abbie, and we do!”
            Five angels whom I ‘d never before seen met me that morning when my heart was shattered.  “I will never leave you nor forsake you” has never been so real to me!
            Now, as for Miss Abbie…lots of good stuff to tell you!  The day after I asked you all to pray for her to stop coughing up junk all the time, she did!  She has been very clear this week.  The combination of your prayers and the new blenderized fresh food diet we have her on is making a huge difference.  Her stoma is often sticking together now so that it looks completely sealed, so we are moving in the right direction!
            At our last Vital Stim session last week, Abbie’s therapist told me how to treat her face with the Biomodulator to improve her facial muscle tone.  We are incredibly blessed that Shau Jwo is not only a therapist but also the mom of a three year old special girl, Teresa, who also uses a G-tube.  Shau Jwo also recently purchased a device and went to Dr. Tennant’s conference, so she is very supportive of using it with Abbie.  I followed her directions, and in three days we saw a huge difference.  Abbie’s lower lip used to droop a little, and kind of rest on her chin.  Now it is up in the proper position, looking beautiful, and cutting down on the drooling greatly!  The change was very apparent to her PT on Tuesday.  She is saying more sounds now as well as the tone in her face improves.
            Her PT session on Tuesday was great!  Her muscle tone is still a bit high as she continues through her energetic healing process, but we saw some exciting things.  She got to bounce on the ball for a while, which is a favorite, and then got to go down the slide many times.  We noted much improved head control, with Abbie being able to lift her head without tensing her arms or legs.  She is able to isolate just the proper muscles needed to lift, and use only those, which is an exciting advance.
            Overall, she continues to become more alert, aware, engaged, and animated each day.  She is moving her eyes to objects much more quickly and tracking even better!  We see her blossoming daily, and it’s a thrill to have daily progress after taking a leisurely pace for so long.
            Many of you have asked about the phytoplankton we have just started her on.  I sent information to those I had email addresses for, but if I didn’t have yours and you would like info on this hope-giving product, you can email me at varasix@aol.com.
          My Psalms cycle took me to 119 today…I always seem to get really busy on the days when 119 pops up and have never read the whole  176 verses in the same day.  Today I committed to doing it and was so blessed.  I already knew many of the stand-alone gems in 119, but I discovered a repeated theme that I didn’t know was in this Psalm.  Many, many times the psalmist says, “Renew and quicken me, give me life, renew me, according to your Word, ordinances and promises.” (I condensed many verses there).  I read this Psalm as I was treating Abbie with our device knowing that I was watching renewal take place, not because of technology but because our God is true to His Word and it never changes or fails.  I told Abbie today, “When you are all better, just make sure you always tell the story of how God healed you, and what He did for us.”  I can’t wait to hear her spin on the miracle of her renewal by God’s grace.

Friday, 9/23/05

After all these months of moseying along this path I feel like I am watching Abbie blossom moment by moment in front of my eye!  Yesterday she got to “read” her computer books again.  We saw several encouraging things.  She is starting to track more consistently when something interests her.  She was doing a good job making choices with her switch.  And, my favorite, when she chose to click on the grasshopper to see what he would do, she grinned as he sang a silly song.  She was engaged and even entertained by what she was doing.

Another huge difference this week is Abbie’s temperature sensitivity.  The slightest breeze has always set her off, and we have to bundle her up to go outside even on balmy days.  She often looks like a little orphan, all wrapped up in colorful blankets with just two eyes peeking out.  I wanted to get more sunshine onto her skin this week, so I dressed her in shorts, loaded her in the jogging stroller, and headed out for a walk.  Not one complaint, even as the breeze kicked up!  I’ve done this several times this week.  Yesterday we rode to therapy without Abbie wearing a sweatshirt, and with the air conditioner on.  The AC has always been a bone of contention between Abbie and everyone else in the car.  We would all be about to pass out from the heat, yet even the lowest setting of air conditioning would bring gales of complaints from Abbie.  This normalization of her thermostat is a huge praise, and a significant sign that she is getting better!

She had her last session of Vital Stim yesterday – I have decided to take a break for a while, which her therapist fully supports.  We saw a big change in her yesterday in response to the electrodes.  We couldn’t turn up the level to anything close to what we have used in the past.  She was far too sensitive for that!! So, it seems that on the inside and on the outside, Abbie is regaining normal sensation and control.

            Our PT/OT session was interesting this week.  We didn’t get to do anything fun like walking  because Abbie’s muscles were far too tight.  Her legs most closely resembled a pair of pale telephone poles.  It may surprise you, though, to hear me call that a good thing.  Her entire body has been degenerative (low energy) since her accident.  To get back to normal she has to go back through the inflammation (high energy) phase.  When I measured her levels that day they were about off the charts, as inflamed as it gets.  So, what we are doing with her is working, and we are making progress!  As I’ve continued to work with her this week her legs have loosened up and been almost floppy at times.  The one highlight of that session was when Arlene was working with Abbie’s arms, using her hands to bring an object towards her face and then out again.  She said, “Look!  Her pupils are reacting when I bring it closer and then take it away..she is trying to focus on it!  She is seeing it!”  Praise God for answered prayers!

And, speaking of prayers, I feel very pressed to once again ask you to join me in praying for a specific family among the multitudes who are in the midst of the storm.  But, this time it is a church family.  Champion Forest Baptist Church in Houston has ceaselessly encouraged me during this journey.  I have often received cards from their “prayer room” where they have a 24-hour prayer ministry, as well as personal notes from their members.  Please just cover them with prayers for safety, protection, and preservation as we remember all who are in Rita’s path.

I have one more personal request to make.  In July of 2004, as we were preparing to finally take Abbie home from the hospital we ended up next to the Afandor family on the general peds floor.  Donna was a Godsend, because she was a “been there, dealt with that problem” special needs mom, as well as a fellow homeschooler.  Her daughter Alejandra, who is about Abbie’s age, had been born with complex needs which were still unclear.  Donna gave me little tips like “Make sure to ask for the bag that goes with the suction machine” and “Here’s how to get  through a month with only ten trach ties”.  Alejandra also had a trach, and would plug it with her finger to make herself heard.  That spunky little girl is now at Stanford for treatment and her lungs are not doing well.  Donna has set up a page for her, www.caringbridge.org/visit/alejandraafandor.  If you have a moment would you send up a prayer for her and her family?

The last new thing we have added is real food!  The more research I’ve done the more I’ve realized that even though we got the best possible formula for Abbie it still has a lot of ingredients in it that are bad for Abbie, and actually work against what we are trying to do.  So, last night I got out my VitaMix and tossed in some free-range chicken, organic yam, steel-cut oats, blueberries, banana, mango and poi.   Yum, right?  I was a little apprehensive with the first feeding this morning, but Abbie did terrific.  I am excited by the healthier diet we will be able to offer Abbie, as we try with each step to use more and more of what God has provided for us.

I pray that peace, comfort and joy are yours today, no matter where you may find yourself.

Monday, 9/19/05
            I am writing with joy to tell you that I got to see Abbie be a little girl again last Friday.  Her phenomenal speech therapist, Lisa, coordinated a new program at the university for kids using switches to communicate.  It will give the speech therapy students a chance to work with this technology and the kids who use it, as well as providing a chance for parents to meet each other and talk about our common challenges.  I was curious to see how Abbie would respond to other kids who are similar to her.  Honestly, I wasn’t expecting much.  But, they rolled a little boy named Mark up to her chair, and he hit his switch to say, “Hi! My name is Mark.”  Abbie immediately responded by hitting her switch to answer with , “Hi! My name is Abbie!”  Once she heard what the voice output device said, she was off and running!  I must’ve heard “Hi! My name is Abbie” five times in the next 30 seconds.  She was excited to meet the third child in her group and greeted him as well.  Tears sprang to my eyes as I observed her caring about other kids and wanting to interact with them – and having a means to do so!  When the student took her switch away to reprogram it to say something new, Abbie got upset and gave her “the look!”  She really understands now that the switch can give her a voice, and she is VERY determined to be heard.
            After a half-hour with just the three of them, the second session kids, four more, joined the crew for story time and music.  The parents went right next door to observe through 2-way glass since the room was too small for all of us to fit.  It was so refreshing to talk with moms and dads who have many of the same issues, struggles, hopes and joys.  Many of the families were already acquainted, so the afternoon was full of, “Wow!  Look how he’s grown!” and “Look at how great she is doing now!!” – much like baseball team parents getting together for a new season.
            Watching Abbie enjoy this session prompted me to get much more aggressive with how often we use her switch.  She pretty much has access to it all the time now, if I can help it.  As she lies on her stomach for a treatment or massage, she “sings” to me.  I program in her favorite song, and she has to hit her switch to play each line.  She has gotten so good that I am truly sick of hearing the “Wiggle” song, and I suppose other shoppers in the market think I’m strange when I burst out with “I can wiggle my elbows and even my nose…”
            Her trach hole is so tiny now, but she is still coughing out junk daily, which prevents it from closing completely.  Would you just pray that she would not have any sinus drainage and coughing?  It would only take a day or two of being completely clear for her stoma to seal up.
            The Carvers will be returning to New Mexico on Wednesday.  We are so thankful for the time they’ve been able to spend with us, and pray for a safe and smooth return to Los Alamos.  It will seem strangely quiet to have “only” six kids in the house after they leave.
            One of the kids had a rough day at school last week – kid stuff that is normal but still really hurts the heart, especially the heart of a mom.  As I was talking at length with him, the Lord said, “Don’t worry.  It is always hard to watch a heart of compassion being made.”  I’m so thankful that we don’t ever suffer for nothing, and pray for the eyes to see the blessing in the midst of the hurt.  I also thought of how many, many hearts of compassion are being carved in our country right now, in the Gulf states.  We continue to pray for you!!

Abbie working with her switch.  The ball hanging down off the
gooseneck is her switch, which is connected to the voice output device
(with the purple top). She just has to move the ball slightly to activate
the voice output device. She uses a different type of switch right now, and
is getting better at it each day.  Technology is such a blessing in this area!

Wednesday, 9/14/2005
            My hands are raised, I’m standing still…don’t shoot!  I know I’m way overdue on an update.  We have the blessing of houseguests right now – the Carver family from New Mexico is here, adding seven more to our joyful chaos!
            Much has happened since the last update. The first thing I want to tell you about has very little to do with Abbie, but everything to do with my travels with God.  In the last update I told you about our dear friends, the Garguilo family.  Like thousands of others, they have been tragically impacted by Katrina.  Two weeks ago our small group prayed specifically and insistently for them..two days later Fred called Ray and said, “You’ll never guess what just happened!!”  Fred had decided to withdraw his Army retirement paperwork, and the Army had issued him new orders making him the chief medical operations officer for Joint Task Force Katrina, based in Mississippi!  So..Fred would be reunited with his family, in his home state using his skills to bring help and healing!  The speed and completeness of this answer to prayer is a large granite marker on my road with the Lord.  I laughed aloud with joy as Ray told me what had happened, until the joy bubbled over and I danced around the house.  Like all of you, I am sure, we continue to pray for those displaced, separated, hurting, and grieving in the wake of the storm.  Katrina has issued a personal challenge to each of us, to be the hands and feet of Christ.  May we not fail.

(biomodulator)  This is Abbie's biomodulator device in the hands of Luci, the nurse practitioner who gave Abbie her first two treatments.  This device holds tremendous promise for Abbie, and we are grateful for the way God has provided it to us.  The labels running vertically are different modes that I can use it in depending on what area I am treating.  The lights running horizontally across the top show whether the particular area I am treating is low energy (degenerative), high energy (inflamed) or normal.  I have had fun watching Abbie's energy levels change with treatment.

             We started Abbie on the phytoplankton that I told you about in the last update.  Between that and my improved treatment skills with Biomodulator we are seeing improvements!  During her last assistive technology session Abbie was “reading” a computer-based book.  To turn the page she would have to depress her switch, which connect to a voice output device that was programmed to say “yes, please.”  Then, within each page she could select items to look more closely at.  Of course, on the page where she could choose between the mommy and the daddy…she chose the daddy!  She did very well, and at the end her therapist said, “She’s just..it’s like..I don’t know how to say it.”  And I said, “Well, I am just seeing faster processing.”  Lisa heartily agreed.  We are also seeing much more smiling, especially in response to stimuli like tickling or favorite songs.
            As a result of everthing I learned at the recent Energetic Medicine conference I have been diving deep into research about nutrition, to try to figure out how I can give Abbie the best nutritional platform to stand on.  It would take me pages to explain all I’ve learned, but the best resource I’ve found is a “cookbook” called Nourishing Traditions by Sally Fallon, which I bought at Amazon.  It has lots of good recipes, but more than that it is full of information and research about nutrition.  My boys, including the biggest one, are a little scared about mom’s transitions in the cupboards and refrigerator, but even in just a short time we can see the changes with improved eating habits.  Just one more way that Abbie is pulling all of us along on her path.
            It has been nice to have the Carvers here to see Abbie’s changes.  When “outside eyes” can tell when she is mad, upset, hungry and happy, then I know I’m not just seeing things.  Yesterday, as we were getting her in the harness for the Walkable, she told her therapists, “hungry, hungry!!”  She was clear enough that even they understood her!  It was still 30 minutes until eating time, so up she went. 
            Abbie walked for about 25 minutes to get to a slide.  Since she clearly stated that she’d rather be eating than walking we thought we’d better give her an incentive.  It is very hard work for her to be upright, trying to coordinate the relaxation and movements of all her muscles, so we all cheered when she made it across the room.  As she sat at the top of the slide in victory, she held her head up so tall and proudly. 

Our sleeping angel is wearing a hat brought to her by our special friend Cheryl Desko.  Cheryl, a surgical nurse, went on a two-week mission trip to Guatamala that ended the day before their family vacation to Hawaii began.  She bought this hat from villagers in Guatamala and brought it all the way across the ocean to Abbie.

            Her vision is also improving..she will look up and down now to see parts of a movie, and will focus on what is going on.  She also seems to be paying attention to her movies even when the screen isn’t right next to her face.  She is blinking much more when she is alert, which is a sign that she is trying to adjust her vision.
            Today we had Vital Stim, Abbie’s eating therapy, for the first time since early June.  She was sleepy, but still participated.  Her therapist noted that her tongue is much stronger now, another evidence that God is always at work, even (especially?) when the therapies cease.
            When I was brokenheartedly praying for those affected by the hurricane, I was led to Psalm 30.  It pierced me so deeply that I spent time memorizing it – the words continue to encourage me daily.

            Psalm 30:1-6
            “I will extol Thee, O Lord, for Thou has lifted me up,
            And hast not let my enemies rejoice over me.
            O Lord my God,
            I cried to Thee for help and Thou didst heal me.
            O Lord, thou hast brought up my soul from Sheol;
            Thou hast kept me alive, that I should not go down to the pit.
            Sing praise to the Lord, you His godly ones,
            And give thanks to his holy name.
            For His anger is but for a moment,
            His favor is for a lifetime;
            Weeping may last for the night,
            But a shout of joy comes in the morning.”

Tuesday, 8/30/05
            I realized this evening that I’ve been procrastinating writing an update because I don’t know how to condense all that has happened lately into a sensibly-sized update.  So, I’ve given up on the Shrinky-Dink effort, and will instead break this into several parts.

Part I:  A birthday and a gift
            Thank you all so much for your birthday wishes for Abbie.  We had a quiet, simple celebration at home with her.  She really enjoyed helping open her presents!  We didn’t have a cake this year, partially because it just didn’t get ordered but partially because we want to wait until next year when she can eat it with us!
            Right before Abbie’s birthday the Lord gave our family a gift. As much as we’ve cried out to the Lord to heal Abbie, and the dark hours we’ve spent wondering why He allowed this, when we experience a “near miss” we truly know what we have been spared.  Chase has recently taken up cycling after getting Ray’s old racing bike tuned up.  He really enjoys it and is finding that he has a great natural ability for it.  Last Sunday he was on a ride to prepare for The Century, a 100-mile bike race scheduled for next month.  I knew something bad had happened as soon as I heard the tone of Ray’s voice after he answered the phone.  Chase had been hit by a car not far from our house – again, our worst nightmare was coming true.  But, I must tell you just how benevolent God was…there was a police car sitting at the intersection of the accident, because there had been an auto accident there just one hour before and the officer was completing his report.  He heard the collision, saw Chase fly through the air, and was there immediately.  Shortly after the accident some very good friends of ours happened upon the accident.  The “God” part of it is that they live on the other side of the island, in Kailua, and had simply missed the turn to Diamond Head, and Tom just “happens” to be vascular surgeon.  So, even before we left the house we had Tom on the line telling us that Chase was OK.  He was very shaken, but only had bumps and bruises.  I felt especially bad for the man who, through no fault of his own, hit Chase.  He was very kind, and obviously very affected by the accident.  Chase could’ve, and actually should’ve been injured much more seriously, but the Lord protected Him and I thank Him for that every day.  We know how it feels to take a grim ambulance ride and have the tests return with poor results.  We know the smells of the PICU and the cold fear of the unknown and uncontrollable.  God saved us from all that this time, and I must praise Him with the same intensity with which I cry out to Him on Abbie’s behalf!           

Part II:  Incredible Hope
            As I’ve written about previously, we have been using something called a “Biomodulator” device with Abbie.  It was invented by Dr. Jerry Tennant based on a Russian device called the SCENAR.  The Biomodulator works with the energy in the body – our bodies are wired much like our houses, with circuits transferring energy from one place to another.  You see the  body’s energy in action in an EKG of the heart or an EEG of the brain.
            Although I purchased the device and began using it with Abbie back in June, the training conference was this past weekend, 8/25-27.  I thought it was going to be a “let’s show you how to use the device” seminar.  I got infinitely more than I bargained for!  There were people from around the world and the US there, as well as many professors from the UH nursing and medical schools. I only wish I could condense the 20 hours of lecture, but there was not one wasted minute. I learned so much that I am still processing it.  But, the bottom line is that I feel rearmed and renewed for the battle to save Abbie from the scalpel, as well as the wheelchair!  And, God has used the trials of others to provide means of restoration for Abbie and others.
            Back in June Dr. Tennant sent me a long email with a lot of specific advice for Abbie, including nutritional advice.  Abbie needs to build new, healthy cells, and to do that she needs lots of the right kinds of fats.  And, we also need to restore the voltage in Abbie’s body.  You can think of our bodies like batteries, and when voltage is low you can’t heal.  If you don’t have the right amount of water and minerals you can’t hold a charge, just like a battery.  So, he recommended that we give Abbie eggs, because they are a complete food that is very high in one certain compound needed to build healthy cell membranes, as well as minerals and fat.  We tried for a few days, but they made Abbie nauseous, so we had to stop.  While listening to his lecture about how important  the nutrients in eggs are, I was getting depressed because Abbie’s liver cannot handle those fats right now, which is why she was getting sick with the eggs.  In the midst of that frustration came a “But, God” moment.
            Another “complete” food is sea plankton, the microscopic food that some whales feed on, but there had never been a way to harvest it for human consumption.  But then…a shrimp farmer in British Columbia wanted to feed plankton to his shrimp and created large ocean-fed tanks.  All was going well, and then he was diagnosed with a rare and fatal cancer, mesothelioma.  There are only 2000 cases in North America every year, and the survival rate is zero.  As his health was declining, for some reason one day he stuck his finger into one of his tanks and ate the plankton.  His adult daughter was very mad at him..as if cancer wasn’t enough to make him sick, now he was eating plankton!!  He kept doing it though, and eventually the growths in his chest were benign.  His physicians surmised that maybe he never even had cancer, because no one recovers from mesothelioma.
            His plankton has been available commercially for just a little while now, and Dr. Tennant has been using it in his clinic for about a month.  When I spoke to him on Saturday he said, “I’ve only been using it month, and don’t have a tremendous number of cases yet..but, the results I’m seeing are astounding.”  Needless to say, I ordered some for Abbie that very night, and await its arrival anxiously.  I thank God that He truly, truly has provided all we need for health and healing…even a little microscopic organism!!
            The other therapy we have had in the back of our mind for many months is Cranial Sacral therapy..too long to describe it here, but it require manipulation of the cervical spine and head to get things in alignment and allow the cranial sacral pump to function again. As I was listening to Dr. Tennant talk about how important proper alignment of the C-spine and skull are, and the role the pump plays, I felt that I was getting a confirmation of the need to pursue that therapy.  That was Thursday.  On Friday, he asked for a volunteer from the audience, and a local man went up on stage.  We could see that one ear was higher than the other, as well as one shoulder and one hip –he was out of alignment.  Dr. Tennant took the Biomodulator and treated this man for one minute on a specific spot on each side of his neck.  After moving his head, shoulders, and back, and walking a few steps, the man’s ears were level!  The device accomplished in 2 minutes what would’ve taken months of Cranial Sacral therapy to do!  I was astounded, and so happy to cross one more “to do” off our list!  I came home and “zapped” (as we call it) Ray, Chase and Crystal.  The younger set thinks they have a crazy mom with a cattle prod, and won’t come near me for a treatment!
            We’ve tried, and are using many things with Abbie that I don’t really write about or publicize, but I can’t keep this to myself because the potential it has to help people heal and be well is too great.  Dr. Tennant is based in Dallas, so he often lectures there but is also traveling to Orlando this fall and will be back in Honolulu this January.  Do whatever you can to see him, the nutritional advice alone will change your life!  There were some tears and grumbles when I trashed every single thing in our house containing Aspartame (a potent neurotoxin) or Splenda (basically a pesticide), but I want my family to be well!  Dr. Tennant lectures for Senergy Medical Group, www.senergymedicalgroup.com.  It is not cheap to buy a device or attend his lectures, but it’s a whole lot less costly than being sick or having to take prescription drugs forever!
            Just like the plankton farmer, Dr. Tennant’s vision is borne from trial.  He is a brilliant physician, graduated college at 19, and medical school at 23.  He pioneered outpatient opthalmalogical surgery, and then invented the lenses that are implanted in patients after cataract surgery.  When he started doing these implants he was the chair of the department in a teaching hospital.  He was fired for doing the implants, because anyone “crazy enough to do that shouldn’t be teaching”.  It’s now a common procedure. He then went on to help test the excimer laser that is used for Lasik procedures, doing 4000 cases or so.  What they didn’t know at the time is that in each case dust came up off the cornea with each cut and penetrated their masks.  The dust contained live viruses, and Dr. Tennant ended up with viral encephalitis, an infection in the brain. For seven years he slept 16 hours a day, able to mentally function 2-3 hours per day.  There was “no hope” and he declined to the point where it was thought he would certainly die in the summer of 1999.  “But, then..” he had a friend with a lymphoma in her neck who had failed all treatments at MD Anderson, and was told there was nothing else to do.  She went to Mexico, and through a circumstance ended up being treated with methods utilizing and aiding her body’s energy system.  Within four days she went from nearly being choked to death by the tumor to normal.  That stoked Dr. Tennant’s quest, and the results of desire meeting brilliance have produced an approach that will bring hope to the hopeless!
            I know I’ve just written perhaps a lot more than many of you wanted to read, but to me this is one way that Abbie’s journey may bring tangible help and hope to others.  I have already seen noticeable changes since this weekend when I started using the device in the most effective ways on Abbie.  She tried to talk to our friends, the Latimers, who were bidding her farewell today before moving back to Canada.  She said “go” several times, as we talked about our family going to see them next summer (we have a camping date in Kelowna.)  She also tried to say other things that came out garbled.  We also got to share with them Abbie’s unique nod.  When she heartily agrees with something she moved her eyes up and down very quickly.  It was obvious even to Warren and Jody that she understood what we were saying and was communicating as best she could.

Part III:  Heartbreak
            I have learned this week what I suspected all along.  It is actually easier to be the one going through the trial than the one watching someone you care about go through it.  When you are the one being tested, God carries you and pours His grace upon you.  When you are the spectator the heartbreak and frustration of not being able to do anything are overwhelming.
            We have some special “Army-days” friends, Fred and Michelle Garguilo.  We were thrilled when they were stationed here not long after we moved here ourselves.  After Abbie’s accident I think Fred and Michelle took the boys for about 10 straight weekends.  We joke that now our kids know them better than we do.  They are just exceptional people.  Since this is Fred’s last assignment they bought their retirement home on the way to Hawaii, and rented it out while here.  Fred moved Michelle and the kids to the house in July so the kids could get started in school there while he remains here until February.  Fortunately, they moved to the town where three of Fred’s brothers live, so Michelle would have plenty of handymen if she needed them.  Unfortunately, Fred’s brothers live in Gulfport, Mississippi.  Ray talked to Fred today, and because no one can get in they are uncertain of things right now, but their neighborhood is under ten feet of water so they assume the house is a total loss.
            The magnitude of what has happened on our Gulf Coast is impossible to absorb, and the suffering of thousands upon thousands must drive us to our knees.  It is all we can do.  I am so incredibly frustrated that, after all the Garguilos did for us in our hour of need, we cannot do anything tangible to help them now.  But, I have met God in the pitch black and I know that is where He is most powerful and most tender.  Please join us as we lift up the many, many whose live have been obliterated.  If you are in that area, please know that prayers are converging upon you from all over, even way out here in the Pacific.

Saturday, 8/20/05
            Much has happened since the last update, and it’s taken me a while to mentally digest it and come to terms with it before I could even think about distilling it down into an update. Last weekend Abbie’s right leg began to swell, and on Saturday evening I noticed that her toes were bluish around her nails.  The coloring was fine again on Sunday, but I measured her thighs and found that her right thigh was 1 ¼ inches bigger than her left.  I thought that perhaps we had injured her knee or her leg, and kept an eye on her until our therapy session on Tuesday.
            Her PT checked her leg very closely and couldn’t find an injury or a cause for the swelling,  which was still obvious in her right leg.  Because Abbie clotted on that side while she was in the PICU, that was a concern.  So, immediately after the session we took her downstairs to the ER to be assessed.  An ultrasound was performed which showed no clotting, and Xrays were taken to rule out a femur fracture.  Abbie’s bones are weaker now since she hasn’t been bearing weight for so long, so fractures can happen easily.  Praise God, those films were clear!  I took a copy of the Xrays with me so that we could take them to our Shriner’s appointment on Friday.  I glanced at them quickly and to me her hip joints didn’t look any worse than they had in June, but I’m just a mom and we’d have to wait three days for the orthopedist’s thoughts.
            Friday morning we had more Xray’s taken at Shriner’s because they wanted a slightly different view.  We were concerned about Abbie’s muscle tone, which has been increased since she got sick back in June.  I was even willing to talk about intrathecal Baclofen, which requires implanting a pump into Abbie so that medication can be delivered directly into her spine.  This allows for the muscle relaxation but avoids the systemic sedating effects of the oral Baclofen. 
            Abbie was particularly tight during the assessment there, not even allowing her ankles or left knee to bend, which are things she does easily at home.  The nurse practitioner got two Baclofen pumps for us to look at.  I was taken aback by their size and weight.  The old style is the size of a tuna can, but heavier.  The “new and improved” style is the same size but half the width, and still very heavy.  It is difficult for me to imagine how that device would fit in Abbie’s little body.  I was reeling from this when the orthopedist showed us her new Xrays next to her Xrays from one year ago.  Her right hip is now 75% dislocated, with her left about 60% out.  I was so sad to see how much she had changed from that little body that was so strong from running and playing.
            The bright spot that we tried to cling to that morning is that Dr. O said, “If she was not making progress, this wouldn’t be an issue..we would just let the hips dislocate and not worry about it.  But, I see that she is making progress, so there are three options we need to talk about.”  There are two main muscle groups who are the culprits in pulling the hips out.  The least invasive option is to inject Botox into one set of muscles in the inner thigh, and then brace Abbie for several weeks to get those muscles stretched out again.  But, the second set of muscles can’t be reached by Botox injections, so this solution is incomplete, and really only buys us time. 
            I started going numb on the inside as he described the second option.  It involves actually cutting the muscles in both of the problem groups.  He said that Abbie will not lose function, and that they eventually grow together again, but that this would release the tension on her hips.  I hated the thought of her being opened up and cut apart, but it was about to get much worse.
            The third option is called a “bony procedure” and is by far the most major operation.  Dr. O. would open her up and actually take a portion out of each femur to shorten her legs, which would release the tension in her muscles.  He will also have to reconstruct the head of her hip bone and the cup it fits into because they are being deformed during this period of subluxation.  I could not bear to even fathom doing this to her, but he looked at me and said, “She will have to have a bony procedure, it’s just a matter of when.”
            I held it together until the parking lot, when I just broke down by the side of the van.  Ray  held me and reminded me that it was a “good appointment” because these things are necessary because Abbie is making progress.  We prayed together as I leaned on the door of the van, and then I drove home to begin wrestling with the decisions we need to make.  We will see Dr. O in two months to discuss our plans and timelines.
            I must admit that this was the first day that I really had moments of anger toward God.  “How much??” I asked..”How much does she have to go through and suffer??”  I got mad when I went back in my mind just two days, and remembered a quick trip I’d made to Gymboree.   Abbie has outgrown most of her clothes and I wanted to get her some new pants.  My sister  made a Gymboree run with me last summer, just before Abbie was discharged from Kapiolani.  At that time I found a beautiful size 3 ballerina dress, complete with tutu.  I wanted to buy it, but Tara said, “Don’t buy that yet, it will just make you sad right now.”  I agreed and put it back.  A couple months ago I had a dream about that dress, knowing that I should’ve bought it because Abbie is going to need it.  But, they were long gone from the stores.  Well, on Wednesday, there were two lonely little ballerina dresses on a rack in Gymboree, and one of them was a 5/6.  It was time to buy it.  On Thursday I hung it on a hook right by Abbie’s bed, because this is the dress she is going to dance in.  I felt that very clearly as I prayed, and I wondered how in the world that dress corresponded to discussions about removing parts of Abbie’s legs.
            I lay on my bed a long time Friday afternoon, wrestling with the decisions, my fears, and my sadness.  I felt as if a huge brick had been added to the weight we have been carrying for so long.  In my mind I saw a big weightlifter, straining to raise the bar, struggling, shaking…then finally bringing his foot up even with the other and standing tall.  Just about the time he was looking smugly at the audience, I saw the two huge hands that were really holding the weight…it wasn’t the man after all, it was God.  In that moment God said to me, “All I am asking is that you make the motion to stand, I will bear the weight.  I am not even asking you to stand under it, just make the motion to stand.”
            And so I did.  The motion He wanted was for me to remember all I have learned of Him and from Him in these months, to recall His faithfulness and His promises. Once again He was asking me to believe His Truth over facts on a film.  We are not going to sit down and accept that Abbie must eventually have this gruesome surgery.  We are going to stand on His promises, and we are going to fight using the tools and methods He has given us.  We covet your prayers for her muscle tone and her hips as this specific battle begins in earnest. We are thankful that He has already provided all we need to win this one:  her program, her supplements, the Biomodulator device, terrific therapists, our wonder-nurse and teammate, Debbie, and above all, the power of prayer!
 The Lord confirmed His word to me about the weightlifter amazingly today.  I picked up RJ’s Bible, which is a New International Reader’s Version – the language is simplified to a 3rd grade reading level.  I was doing my Psalms cycle, except that I thought today was the 21st.  So, I landed on Psalm 81, and verses 6 and 7 stunned me.  “God said, ‘I removed the load from your shoulders.  I set your hands free from carrying heavy baskets.  You called out when you were in trouble, and I saved you.  I answered you out of a thundercloud.  I put you to the test at the waters of Meribah.”  The simple language allowed the message to sink deeply into my heart, and realize that my image of the weightlifter wasn’t just my imagination, it was an encouragement and comfort from God!
            We also saw Abbie’s ENT, Dr. T. this week.  After two rounds of a powerful antibiotic for sinus infections, Abbie was still having lots of mucous drainage.  I asked if perhaps it could be allergies, since I and two of her older brothers take allergy meds.  Dr. T. thought this may be the case, so we started her on Zyrtec.  Here’s just one reason I love Dr. T. – she thought Zyrtec syrup would be better than Claritin because it tastes better, and eventually we will be giving it to Abbie by mouth rather than g-tube.  Having a physician not only allow optimism, but encourage it is a true blessing!  We started on Thursday night and it has helped tremendously!  I am now very hopeful that Abbie’s tracheostomy stoma may finally close since she isn’t coughing mucous out incessantly.
            This was a very trying week for us, as we continued our rollercoaster ride with Abbie while also trying to be available and involved parents of five other kids.  RJ blessed my heart today, though, when we saw a poster of Rosie the Riveter from WWII.  As she points to her bicep, the caption above her head says, “We can do it!!”  RJ looked up at me and said, “That’s you mom – that’s you about Abbie! And that’s Abbie, too!”  In their own ways, they know we are in the fight of our lives, and they realize deep down that the sacrifices they make are so that we can win.  Brave and true little soldiers.
            This week will bring Abbie’s fourth birthday on Tuesday, the 23rd.  We are so grateful to be celebrating this day with her.  She is very aware that she is going to be four, and I cannot wait to see what this year brings.  If you remember her on Tuesday, please just sent an extra praise up to God for allowing her to be here and to be blossoming again.  Thank you for your prayers – I cannot begin to describe the comfort they bring during weeks like this one!

This is the Litegait Walkable that we used with Abbie this week.
She loved it, and hopefully we’ll be able to post pictures of
her using it soon!

Friday, 8/12/05
         This has been a crazy week with two school orientations, and many appointments!  Abbie did get to go walking again, but this time we took the Walkable away from the treadmill, and instead we strolled down the hall!  Abbie was on her feet for 45 minutes, which thrilled her therapists, because that is a long time for someone who generally never bears her own weight.  She worked hard the whole time, and took at least one step all by herself.  I just love this piece of equipment, as does Abbie.  She starts clucking in the morning when I tell her we are going to play on Auntie Lynette’s Walking Toy that day.
         After her PT/OT session we went to see her gastroenterologist because I felt that Abbie was putting on too much weight.  Her thighs and and tummy are looking plump, and our backs are feeling an extra strain when we lift her.  Well, yes, I suppose 4.5 pounds in three months is a little excessive!  That’s how much she’s gained since her last GI visit in May.  She now weights 43lbs 6oz…and is just a few milkshakes away from catching up with the twins!  So, we are cutting her calories again, and hope that this reduction, combined with an increased activity level now that she’s healthy, will help to stabilize her weight.  We don’t want her to lose weight, we just want to stop her here and let her height catch up with her weight.
         On Tuesday night, after walking that afternoon, Abbie was again lifting her legs all night.  I had her on the potty around 11pm, which is her “bright and shiny” time (if only we could have therapy then!) and she was raising her legs incessantly.  I was talking to her about her brothers going to school, and she was very interested in this. So, I said, “Would you like to go to preschool, Abbie?”  Out came her dimple as she grinned in agreement. We spent the rest of the night talking about fun things big girls do at preschool, like painting, swinging, coloring and singing…and she would smile with each new idea.  I congratulated her for using her potty, telling her “That’s what big preschool girls do!”  But, I also told her that to go to preschool she has to be walking and talking, which prompted more leg raising and clucking.  We don’t intend to send Abbie to special-ed preschool, and that was not what I was talking to her about.  In my mind I pictured her with her friend, Sophia, who just started at a great co-op preschool.  The bottom line is that right now Abbie is all about going to preschool, so we are using that as a big motivator for her.  Our small group was praying over her on Wednesday evening, and after we finished, I told them about Abbie’s preschool dreams.  They were thrilled to see Abbie respond when they asked her about going to school, and I was happy to have others share our excitement.
         I found out again this week that the internet is a wonderful thing, as it brought two special blessings to us.  The first is the story about a woman named Marlene, who, as the result of being born very prematurely had Cerebral Palsy as a child.  That’s not a typo – she had it, but at the age of twelve she was miraculously healed.  Isabelle’s mom, Annie told me about the story and I searched for it online.  Here is the link to this amazing and encouraging story
http://www.cbn.com/700club/features/amazing/healing_marlene_klepees110501.asp >
         The second blessing started at Google (what would we do without that?)  A woman in Georgia, Tammy, had a new baby granddaughter named Abbie, so she googled that name to see what she’d find.  She found Abbie’s site, which is not so incredible, but the amazing part is that Tammy is also the mother of a miracle girl.  Her daughter, Megan, survived an anoxic brain injury at 14mos, while in the process of getting a new heart.  Megan has made terrific progress, which you can see at http://www.babiesonline.com/babies/m/miraclemegan.
            Although I believe Abbie is healed on the basis of what the Lord has said in His Word, He was gracious this week in sending two stories of what He has done for two other girls.  I felt Him saying, “See..it DOES happen!” 
            Honestly, this has been a week when I have felt stretched to my very limit, and have clung to the fact that His grace is sufficient for me.  If you would, please pray for wisdom for Ray and I as we reorganize our lives now that all the kids are in school.  And, the other thing heavy on our hearts right now is Ray’s Uncle Chuck.  He is awaiting open heart surgery after two recent heart attacks, but slipped into a coma yesterday at the Cleveland Clinic.  He regained consciousness today, but they have to monitor him for a few days before even attempting the surgery.  Please remember Chuck, his wife Jetta, son Dana, and Ray’s mom Sandy and his grandma and granddad in your prayers.  It is difficult for us to be so far away at times like this. 

            “When we pray ‘Give us this day our daily bread’, we are in a measure shutting tomorrow out of our prayer…They pray best who pray for today’s needs, not for tomorrow’s which may render our prayers unnecessary and redundant by not existing at all!”   -- E.M. Bounds

Friday, 8/5/05
            First, I want to apologize for how long it’s been since I’ve been able to post new pictures of Abbie.  The computer I use to download images from my camera was functional for about 10 days before it crashed again, and I missed that window.  Ray took my long-dead laptop to the computer doctor today, so hopefully I’ll be able to show you soon how well Abbie is doing.
            We got to use a brand-new piece of equipment at PT on Tuesday.  We have been waiting for months to get Abbie into the Litegait Walkable, and it finally arrived at the hospital last week.  Abbie is not the child in the picture, but this is the exact set-up we used.  We put the harness on her and then once we clipped her straps to the apparatus, we used the electric lift to raise her out of her chair to a standing position.  She loved being upright without having to bear all of her weight.  I got her left foot and her therapist, Lynette, got her right foot while Debbie helped with her head.  We then turned on the treadmill and helped Abbie take steps!  She did pretty well with her legs moving back, but we had to swing her legs around to get them forward again at first.  After about ten steps it “clicked” with her, and her legs relaxed quite a bit, making it easier to move them forward again after she stepped.  The standard first session on the Litegait is only three minutes, which is what we did.  I was sad it ended so soon, but I didn’t yet know that I was going to see effects through the next day!
            Every time we laid her on her back that night, up her leg would go.  Each time she sat on her toilet, up her leg would go.  Any time she had a moment when we weren’t doing something with her, she was practicing her steps.  I saw the same thing the next day.  She’s kept that up all week, although not with the same frequency.
            We have another big praise from this week.  On Tuesday we met with Abbie’s new case managers from the program she will be transitioning to because she no longer has a trach.  I have been worried about this transition for months, ever since we started seriously discussing decannulation.  We have been told that this new program does not authorize RN-level care, and since Debbie is an RN we were worried that we were going to lose her.  We were also told to be prepared to have our nursing hours cut each month until we got down to zero.  I was worried about that because with everyone in school now I wouldn’t have the help I need to take Abbie to appointments and therapies.  About a week before this meeting, while praying about it, I finally came to the long over-due point of just giving it up to God and trusting fully in His provision, trusting that He would provide exactly what we need.  On Tuesday He showed Himself yet again as the God of exceedingly abundantly. 
            At the end of the meeting Ray just asked directly what the transition means about keeping Debbie.  The answer was, “Not only do we agree that Abbie needs to keep Debbie, but we think that you may need more nursing hours than you are currently getting.”  WHAT?!?  Yes, exactly what we’d prayed for and more.  I don’t know that we need that many more nursing hours, but just knowing that we can keep Debbie lifted an enormous load from our shoulders!
            I was reading a devotion yesterday and the Scripture reading was Matthew 18.  I read in the amplified version, and verse 10 brought joy to my heart.  It says, “Beware that you do not despise or feel scornful toward or think little of one of these little ones, for I tell you that in heaven their angels always are in the presence of and look upon the face of My Father Who is in heaven.”  Abbie has an angel in heaven, standing right now in the presence of the Father!  I then thought of all the little ones like Abbie, restrained in bodies that don’t work, living in a world that largely doesn’t understand..but to God they are so precious!  They are never overlooked, in fact in His kingdom they have a very special place.
            Abbie’s vision is something we are still working hard on, and we covet your prayers and praise in that area.  Her antibiotic is making her feel so much better, and one of the sweetest fruits of that is the abundance of smiles we’re getting from her.  Again..hopefully soon I will be able to show you how beautiful she looks with her dimple!

Sunday, 7/31/05
There’s so much to write about I don’t know where to begin, or even how much to include in this update.  It’s like God has transitioned me from a dial-up connection to DSL with Him this week. He has been speaking constantly and deeply, and it’s all been good!

But first, Abbie…I took her to see her pediatrician, Dr. L. on Saturday morning because she had started into the same trend of lower sats, lots of mucous when she coughed, low-grade fevers, and fussiness.  We decided to put her on a 3-week course of Levofloxacin, the antibiotic she was on most recently.  We debated whether to extend the course of the last one, but decided to wait and see.  She got the first dose last night and is already so much more comfortable and relaxed.  A much happier girl makes for a much happier mommy.

 Going to see Dr. L. is always a treat for me, as strange as that sounds, because she has been, and remains such an encouragement to me.  She had spoken to Dr. K., the ophthalmologist about our recent visit.  She was very happy to hear that Abbie’s optical nerve, while a little atrophied, is intact and viable.  We talked about Abbie’s lack of response and agreed that it doesn’t mean Abbie never has sight now and will not in the future.  We also agreed that we should be stimulating Abbie as if she doesn’t have sight, but working with her vision as if she does. Dr. L. also shared another encouraging tidbit with me. Abbie had a contrast-dye study done on her stomach in June, by the same radiologist who read her CTs and MRI the week of her accident.  When Dr. L. saw him after the recent test he was a little “puzzled” by Abbie’s responsiveness and ability to move her legs during the test.  The pictures he saw last May caused him to say, understandably, that Abbie would not survive, but if she did she would remain vent-dependent and unresponsive.  The fact that even during a short test he could see that Abbie is already doing so much more than most ever hoped for made me smile all weekend!

Ray and I had a great date night on Friday, and it gave me time just to be quiet and meditate.  And, don’t you know..when you do that, God speaks.  About a month before the accident the Lord said to me, “You are not loving your children with abandon..you are holding back a corner of your heart because you are scared something will happen to them.  You need to trust Me.”  It took me a little while to comply, and I agreed to “love with abandon and without fear” only days before the accident.  Well, I have learned a lot about what “trust Me” means.  It didn’t mean nothing bad would ever happen, it meant He would make a way and carry us through it. On Friday night He said, “Last year you knew nothing about trust, but you have learned.  Now I’m telling you that you know nothing about rejoicing…and you are about to find out!”  Oh, Praise God!  That’s the kind of message I long to hear!

This morning our pastor, Dr. Duane McDaniel, gave an awesome message about spiritual warfare.  I wish I could quote it verbatim here, but there was one point that really stood out to me because I learned something new.  Pastor McDaniel was preaching about the armor of God found in Ephesians 6.  The last one he talked about was the Sword of the Spirit, the only offensive weapon we have.  Actually, the sword is the Word of God, but pastor went to the original language to delve deeper (which I love doing.)  There are two words for “word”:  “logos” is the general word of God and “rhema” is a specific word of God.  The passage in Ephesians uses “rhema”…we are to fight the battle with the specific word of God. Yep, that means we’ve got to know some verses, we’ve got to read and study.  We’ve got to be able to respond to attacks with “It is written”, just as Jesus did.  That one piece of knowledge, that He has called us to use the rhema word of God as a weapon, has stoked my desire for study all the more. 

We had a potluck at church today, and Abbie was a trooper.  Huge blessings came from this for me.  One of her little friends, Keanu, was holding up a little red elephant for her to see.  She turned her head, and looked down directly at it several times.  Keanu’s little sister, Abby, was in her stroller next to Abbie’s chair, and when “Baby Abby” started fussing, “Big Abbie” looked over and tried to reach for her.  The reason for our potluck today was to pray in our sanctuary, which is currently under construction.  As we gathered in the stripped out shell, looking up at framing and duct work all I could think was “This is just like Abbie – everything was stripped away, and something even better is coming..soon!”  I have to admit to saying “Glory!!” as I looked up at the new air-conditioning system, since it’s a “new and improved” feature, and it made me wonder what new qualities we are going to see in Abbie.

Abbie’s vision has been apparent as we’ve been working more intensely with her this week. She is seeing. Finding new ways to do old things, like turning her portable DVD player on its side so that the screen can be very close to her face, have rejuvenated our efforts.  Please just continue to lift her occipital lobe up to Jehovah Rapha, the God Who Heals.  It’s the part of her brain that processes all the images her eyes send.  Thank you for your continued faithfulness and never-ending encouragement!

Psalm 107:19-21 “Then they cry to the Lord in their trouble, and He delivers them out of their distresses.  He sends forth His word and heals them and rescues them from the pit and destruction.  Oh, that men would praise the Lord for His goodness and lovingkindness and His wonderful works to the children of men!”

Wednesday, 7/27/05
Time for a long overdue update…sometimes when I get delayed in writing, God just pours it into me in one big rush, which is what just happened..so I have to sit down and write before life delays me yet again.

We took Abbie to the opthalmalogist today, for the first time since the accident.  I didn’t have high hopes for this appointment, because we have been working with her vision for so long, and know very well that she isn’t seeing normally.  But, it was still painful to hear Dr. K. say that unfortunately he didn’t see a visual response.  Her optic nerves and eyes are fine, it’s just the optical processing part of her brain that is not working.  He did say that he puts a lot of stock in what parents say because they are with their kids all the time opposed to the short time he sees kids in his office.  I feel like she does see sometimes, and other times she does not see at all.  So, we are not giving up on her vision, this is just the point we are at today.  The first thought that came to my head when he gave us his assessment was, “Well, Helen Keller changed the world…” 

Of course, on the way to the car Abbie watched the lights in the ceiling go by, and then squinted as we went into sunlight…things she didn’t do for the doctor.  I allowed myself five minutes to be sad, and realized during that time that I wasn’t crying because I fear Abbie will be blind, because I don’t.  I was crying because of the comfort she could gain by seeing us well, and seeing her surroundings.  I was crying because I was imagining what it must be like to want to speak and have the words come out garbled, want to move and have your limbs not respond properly, want to eat and not be able to use your tongue correctly..and then to be sufferering all of that in the dark.  I was overwhelmed with how distant from us her vision impairment may make her feel.

Ray rescued me by taking me out to a wonderful and relaxing lunch, which gave us time to really talk out our feelings.  On the way home, thinking about Abbie’s suffering, I was just overcome by the fact that my Heavenly Father know my pain intimately..He knows the torment of watching His Child suffer.  I found comfort in that, but my heart also broke as I thought about the multitudes of people who turn away from the fact that Christ suffered, as God watched, and how that would make the pain even more profound.

I have prayed for over a year about when to write this next portion.  I knew the time was nearing as I watched a precious friend lose one of his best friends suddenly, with absolutely no warning, this month.  The agony on my friend’s face as he wondered where his buddy is now, because they didn’t really talk about Christ – that picture will be with me forever.  I write this because I need to return the love we have received from so many of you, and because I would feel that same agony if you had followed Abbie’s story, even prayed for her, and yet never heard from me about Christ.  I don’t know exactly who I am writing to, although there are some names on my heart, like J.K in Japan.  I don’t want to tell you about traditions, religion, or rituals - -those always give folks a lot to fight about.  I want to tell you about a person and describe a relationship.

You are a precious and totally unique person, created in the image of God Himself.  Created to be perfect and be in perfect relationship with God.  When Adam and Eve disobeyed God, sin entered the world – sin meaning that we miss the mark.  We have all sinned, and in God’s eyes there are not really degrees of sin – a white lie takes us away from God in the same degree that murder does.  It’s like being pregnant – either you are or you aren’t.  God is holy, and cannot coexist with sin – so that there is no way for us to be in relationship with Him.  But, He loves you so much that He couldn’t stand the thought of spending eternity without you.  He knew you could never measure up on your own, so He sent His son, Jesus, down to save you.  Jesus sought only to do His Father’s will, which was to save you – he obeyed to the point of being beaten beyond recognition and nailed to a cross.  He died on that cross, was buried, and on the third day he rose again, having conquered death.  His sacrifice was given so that your sins could be forgiven, and your relationship restored.  He has laid forgiveness and restoration on the table for you, but you have to pick it up and receive it.  I know it doesn’t make sense, I know it sounds implausible…but it’s true.  If you were the only one on Earth, He still would’ve sent Jesus to die for you.  And, He promises that when you accept His gift He makes you new from the inside out, sends a Helper to aid you in getting to know the Father and doing His will, and gives you eternal life with Him.  I didn’t pick up that gift and open it until I was 25 years old, and  I think if you asked those who’ve known me a long time, the difference is obvious – God is true to His word.  It’s not a physical gift, it’s a spiritual one, and you receive it by prayer…it’s a simple prayer, something like, “Dear God, I know that I have missed the mark, I know that I have sinned.  I ask your forgiveness and I accept Jesus’ sacrifice in my place.  I know that He died for me, and rose again.  I want to be in relationship with you from now on.”  I promise that He will lead you gently, and that He is patient and kind as you seek to get to know Him.  Heaven, Hell, and eternal life may sound like mythical phrases, but they are real…and I cannot go to my Father knowing that I may have allowed any of you to be separated from Him because I didn’t speak up. I always pray before I write an update (often quicky prayers, thrown up as I sit at the keyboard, I admit).  I ask God, “What do you want me to tell them?”  The answer is always, “Tell them I love them”..but it is spoken with a passion I cannot convey in words. If you have questions about any of this, please email me at varasix@aol.com  or, if today is the day that you met Christ, please let me celebrate with you and pray for you..will you let me know?

As for the last week around our house…Friday night was the date night to end all date nights…Norwegian Cruise Lines just brought a new ship, The Pride of America, to Honolulu.  Before their maiden Islands voyage, they donated the ship, staff and food to charities for a one-night benefit.  One of Ray’s hospitals was among the charities bles