Friday, 12/30/05
Ray tells me that his health may be endangered if I don’t write a long overdue update…So sorry for the delay, the past couple of weeks have gone a bit differently than I had planned. On the morning of 12/19 my mom called to say that my Uncle Jerry was having a second amputation surgery the next day, even though they weren’t sure if he was strong enough to handle it. I knew it was time to go, so a couple hours later I was at the airport heading for Portland. It was good that it happened so fast, because I didn’t have time to ponder the fact that I was leaving Abbie for days in a row for the first time. I madly wrote lists, recipes, schedules and directions before I left the house and then left Abbie in the capable, loving hands of Ray, Crystal and Debbie. She did wonderfully while I was gone, and it was good for me to learn that her world didn’t crumble completely because I wasn’t here. After a good time of catching up with my extended family along with my good friend Wendy, and meeting my nephew Oscar for the first time, I headed home on 12/23, just in time to celebrate Chase’s 15th birthday. I am so happy to report that Jerry came through the surgery well, and was even joking with us a little on Thursday. Please pray for his continued recovery. I must admit that Christmas was more difficult than I expected it to be. We are in such a different place than we were last year, but we also are not where we had hoped to be this year. I was tearing up during the Christmas Eve service as we began to sing “We Three Kings.” The video playing behind the lyrics showed camels plodding across a desert ridge, and I stared at them as I sang the words “Westward leading, still proceeding…” Westward is the way home, the way back to the Garden, and I felt the Lord saying, “You’re still on the way – don’t despair – I am still guiding you and together we are still proceeding.” Christmas morning was joyful chaos, and Abbie grinned, dimple and all, throughout the process of unloading her stocking. It was such a pleasure to have her be engaged and enjoy the morning. She took a little snooze while the boys unwrapped presents, but she soon awoke to begin catching up. I think her favorite gift of all was a pair of real ballet slippers from Auntie Tara. I had noticed that she seemed a little withdrawn and not as playful, but I wasn’t sure it if was reality or my sadness distorting reality. Finally, on Tuesday we took her to the pediatrician to confirm what I suspected – she had an ear infection. Actually, I think she also had a bit of a sinus infection, too. As soon as the anti-biotic kicked in she returned to her smiley self, and I realized that my Christmas blues had been largely caused by her infection. Abbie and I are much like E.T. and Elliot in the movie “E.T.” – you know the scene towards the end of the movie where they are both hooked up to monitors, and as E.T. declines, so does Elliot. When Abbie is not doing well, neither am I. As soon as she perks up, my whole world is brighter. This morning brought a check-up with the orthopedic surgeon at Shriner’s, one of my less-than-favorite things to do. You may recall that back in August he recommended a very drastic surgical procedure for Abbie which involves fixing the head of her hip bone into the socket with a pin, then removing portions of the femur and reconnecting it with screws. We felt Abbie’s flexibility and tone had improved since the last visit, and the measurements they took indicated that they surely had. (For you therapists out there…both heels came to neutral, knees were about 130 degrees flexion, knees came almost to belly together, and then she could extend one leg fully. On her tummy she did not raise her bottom when they bent her knee and raised her heel back, and she had good internal and external rotation.) We were blessed to have Abbie’s PT, Lynette there with us for the entire 3 hours. She helped us work with the nurse practitioner to set up getting new, hinged foot splints to help Abbie when she walks, as well as hip splints for when she’s asleep. She was also wonderful at asking good questions that we may have missed. I now better understand why Dr. O wants to do that major surgery. Particularly on her right side Abbie’s hip bone is coming out of the socket, and in the process it’s transforming the socket from a nice rounded cup into a flat surface. Until the age of 6-8 years old the socket is fairly flexible, so if we get the bone back in there the socket should reform around it. If we wait too long, it will be very difficult for Abbie to ever have a normally-shaped hip socket. But, that doesn’t mean we are ready to jump right into that. As a preliminary step we are going to have Botox injected into her hips, quads, and heel cord muscles. This will give us a window of time (4-6 months long) during which her muscles will be very relaxed and we can work hard at stretching and lengthening them. We will also be doing a lot of walking, because Abbie’s leg problems are really a brain problem, and walking is very stimulating for her. The more we can remind her brain where her leg muscles are and what they are supposed to do, the more we will be able to solve the underlying problem, her high muscle tone. It is very difficult to make decisions like this for her, knowing that Botox will require another round of general anesthesia, and that we will be injecting a foreign substance into her body – but sometimes it feels like you must choose the “least bad” option. Doing nothing really isn’t an option any more because we are confident Abbie will walk one day, so we want to set her up for long term success and comfort. We will schedule the procedure early next week, but I am hoping to delay it just enough for us to get some equipment at home that will maximize the benefit of the Botox. We gave Crystal a nice digital camera for Christmas, and I have since deemed her the official family photographer…so there is hope that there will be more regular postings of new pictures. We pray that you had a wonderful Christmas, and that like us you are looking forward to 2006 with anticipation of big things to come. You have blessed us so incredibly this year with your prayers, your words of encouragement, your gifts, and your friendship. People are the only true and lasting jewels, and I feel like an incredibly rich woman because of the gems the Lord has place in my life!

Sunday, 12/17/05
A day of balance for us – joyful highs tempered by saddening lows. Our church family worshipped together in our new sanctuary for the first time today – what a huge blessing! The best part, I think was hearing testimonies from two people I don’t know very well. They both left me in tears at God’s goodness, and made me realize again that every person has an incredible story, if we will only take the time to listen. This afternoon we decided to venture to Chronicles of Narnia as a family, Abbie included. Much like any normal preschooler, we were in and out of the theater with her for potty breaks and food. I had to cover her eyes and ears at the end of the movie because the battle scenes were scaring her -- hooray!! Just as we left the theater I was stopped by a woman who seemed to know me, and I scrambled through my decrepit face-recognition mental software but couldn’t find a match. She knew us through this site, and has been praying this whole time. I couldn’t say anything very coherent or intelligent, so I just hugged her and cried. I am still so overwhelmed at all the companions who’ve stayed with us during this whole journey, and wish I could hug each of you! In the early evening my mom had the unfortunate task of being a bearer of sad news. She called to let me know that my grandfather passed away in Montana today. As I tried to absorb that news while memories of my childhood were flashing before me, she also let me know that my precious Uncle Jerry is back in the hospital. He recently had a lower leg amputation due to diabetes, and it’s not healing well. He is having other various complications and they are thinking that more of his leg will have to be amputated. I am desperate to be in Oregon with my parents and my Uncle Jerry and Aunt Hazel, but this is certainly a difficult week to contemplate traveling, both logistically and family-wise. Would you please pray for Jerry’s strength and health, and for my Auntie Hazel – she and I commiserate about the trials of being a caregiver, and she really needs stamina and peace right now. Abbie’s nurse Debbie forwarded me an e-animation the other day because it made her think of Abbie. I cried as I watched it because it is so right-on. Here is the link: http://i.euniverse.com/funpages/cms_content/2529/4candles.swf What it says is so true – and Abbie has relit all of our candles with her feisty spirit that refused to allow Hope to be snuffed out. I guess the small-talk question of the week is “Are you ready for Christmas?” No, my presents are not all purchased yet, and I have quite a bit of wrapping to do (kids, if you are reading this..it’s not all for youJ!) But, that’s not what I’m concerned about. This week I am going to try to prepare myself for Christmas…to hang stockings full of gratitude on the mantel of my heart, to string twinkling lights of joy in my eyes, and to kindle the fire of awe in the cauldron of my soul, to allow all the world to become hushed around me as I commemorate the arrival of the Hope that never dies.

Friday, 12/16/05
             A mainland trip for Ray and the stomach flu for me have prevented a timely update – I am sorry about that!  But, now Daddy is home and I am back in shape, so it’s time to tell you what’s new in Abbie’s world lately.
            Because Abbie’s response time to questions has improved so much (it’s about normal now) it’s easy to have conversations with her via handsqueezing.  The other day Debbie reported that they “talked” for about an hour in the rocking chair.  She confirmed that Abbie definitely wants toys for Christmas, and that she also wants candy.  Debbie asked her she wanted chocolate..no, that wasn’t it.  So, thus began the long listing of every type of candy Debbie could think of – but still no response.  Finally, she said, “Do you want peppermint candy?” and was shocked when Abbie answered “yes.”  Then she realized what Abbie was really after…”Do you want a candy cane?”  Another “yes”.  So, of course, by that evening, Abbie was happily sucking on a candy cane!
            Abbie has also evolved into a hardcore ballerina.  The former Nemo-addict now throws a fit if we try to show her any movie other than “The Nutcracker.”  She always responds well with her body when we prompt her with ballet terms like “ballerina hands” and “ballerina toes”.  I asked her the other day if she wanted to go see the Nutcracker next Christmas and got a mild “yes”.  However, when I asked her if she wanted to dance in the Nutcracker next Christmas she was so emphatic about her “yes” that she about came off the massage table.  I asked her if she already had the whole thing memorized from the movie, “of course” she does!
            She has gotten to use the Walkable the past two PT sessions, and once she’s warmed up she absolutely cruises.  Because her arms and hands have relaxed so much she is able to use the support bars to help her upper body, which really aids in relaxing her legs.  Yesterday we walked out of the therapy room , down the hall and back.  Just as we were finishing up I thought back to early sessions in the Walkable where Abbie moved halfway across the room in 20 minutes, and that was considered a “good” session.
            One personal message:  to Abbie’s “Friends in the Firehouse”…we have wanted to meet you for so long.  I know you were on second watch at the time of the accident, but it has been a long time.  Would you email us (varasix@aol.com) so that we can arrange a time to get together?  It would mean a lot to us.
            Chase, Kyle, and Crystal are done with school for the semester, and the twins will be out next Wednesday.  I am so looking forward to having all the kids with me for a couple weeks.  This Christmas feels so entirely different than last year.  Last year we were celebrating the birth of the King who came to heal our heartbreak – this year we marvel at the King who came to fulfill our hope!

“The Lord has done great things for us,
and we are filled with joy.”
- Psalm 126:3

Friday, 12/2/05
            Our amazement continues to grow!  As so many of you, I’m sure, I’ve been incredibly busy as the holiday season shifts into gear, and thus have been prevented from sharing the great news that piled up all week.  I am in shock, to a certain extent, but this time it is a wonderful thing.
            In the last update I wrote about us figuring out that Abbie knows her colors.  But, it took a couple days for that to sink in enough for me to realize that we haven’t been working on teaching her colors since her accident.  So, that knowledge is from BEFORE her accident.  She has memories!!  And, identifying colors is a pretty high level skill to remember, so that gave us much hope as we headed to her appointment with her neurodevelopmentalist, Linda Kane, on Tuesday.
            I was honest in the written evaluation that I did for Linda, and told her that we haven’t been completing the program that she designed for Abbie.  Since the end of August our primary focus has been on Biomodulator therapy, which cut down the time we had for the program.  And, with Crystal and Chase now in school I no longer have the luxury of helpers always at hand to do Abbie’s patterns.  Of course, normal mom-guilt kicked in, and I hated to admit that we hadn’t been doing the program diligently. As always, Linda was very gracious and encouraging.  She redesigned Abbie’s program to include exercises which only require two people to perform.  But, the major changes in Abbie’s program were not based on logistics, but on progress!!
            I shared with Linda that Abbie can identify colors.  She was thrilled, and said, “Well, then..we’re going to move her right along.  Time to teach her words.”  My blank stare forced a more in-depth explanation.  She said, “You are going to take large index cards and write words in red ink.  You’ll introduce two new high-interest words a day until she works up to about twenty words.  You’ll be amazed at what she’ll be able to do if you are consistent with this.  She’ll eventually be able to identify the words by sight when you ask her to.”  It still took another minute for me to fully grasp that what we were talking about was teaching Abbie to read sight words.  Teaching her to read!!!  Just a couple days before I’d been looking through a catalog that had lots of learning-to-read programs and I felt a twinge in my heart because I’d looked forward to sitting on the couch with Abbie, teaching her to read, and had thought that perhaps that dream had been lost forever.  I never imagined that it was only right around the corner!
            Because Abbie knows her crawling pattern, even though she can’t do it independently, Linda feels that pattern has achieved its purpose of organizing Abbie’s brain at that level.  So, she is fully supportive of us getting Abbie ready to walk, and added new exercises to prepare her.  This is a huge step forward for Abbie!  I explained to Linda that Abbie is not at all motivated by crawling, but rather is very anxious to walk, so I am very thankful that she is ready to move toward that.
            I also spoke with Linda about certain times that Abbie seems very frustrated by her inability to move or speak which then transitions into confusion and fear.  At times like this I sense she’s thinking, “What is going on?  Why can’t I do what I want to do?”  When this happens I calmly and gently explain what happened, even though I hate to talk about it. I ask her if she remembers that she got a big ow-ee in her head while she was in the swimming pool, and then I remind her that she is getting better every day.  I asked Linda what she thought of this, and she related the story of a 14-year-old near-drowning survivor that she worked with.  The first time she saw him he was in a wheelchair not able to do anything. After a year of program, he was reading a word list to Linda.  “Dig, Dad, Deep….deep, deep, deep…” he paused, “deep…drowning.”  She just looked at him and said, “Yes, you drowned.  But, you are back and you are getting better every day!”  She really feels, as do I, that it is best for me to talk Abbie through those moments, and not ignore what she may be feeling because we’d rather not remember it or talk about it.
            When Linda looked at me and said, “She is doing VERY well!!” my spirit just soared.  She is so familiar with neurological challenges and can observe and assess even minor changes, so when someone of her knowledge and experience says that I take it to heart.  It think it’s fair to say I floated home from Kaneohe that day.  Linda comes from the mainland twice a year to see kids here, and I told her, “You never know – perhaps in March Abbie is just going to walk in and tell you ‘hello!!’”
            Yesterday we had both PT and Speech Therapy.  She did great at PT..holding up her head for long periods as she and Lynette went ‘round and ‘round in a swing.  But, then end of the session brought the sweetest gift yet, and one which made my blood run cold with shock (it sounds bad, but it’s a good thing!)  We were getting Abbie back up in her chair, and she was cold and throwing a little fit.  For just a brief moment I saw her…my old Abbie…she was right there in front of me.  I just gasped and put my hands over my mouth as tears started to fall.  The moment was over in a flash, but I SAW her.  Even now the preciousness of that moment is making me cry.  Oh, how I have missed her – that little feisty girl.  It was such a reassurance that we are getting ALL of her back, as well as a breaking through the calluses on my heart.  We’ve gotten so used to the new Abbie, and love her intensely, that sometimes the old Abbie seems like a completely different person.  To see her again so unexpectedly just shattered me with joy, if that makes sense.
            After lunch it was assistive tech therapy, with Abbie’s switch.  Before the session we told her therapists about the recent breakthrough with color identification.  They were thrilled and immediately changed the plan for the session.  We started out with Abbie matching colored bears to the same color bowl.  She did well with that.  Then Lisa said, “Wow!  Color identification is such a high level skill.  Let’s back up a little and see how she does with some other things.”  So, the next task was matching objects.  Rebekah held up a plastic orange and then said, “Let’s find a match.”  She held up a banana and asked Abbie if it matched..no response.  Then came a giraffe…no response.  Then she held up the other orange, and Abbie hit her switch to say “that’s the one!”  She then matched the banana and a train engine.  The next item was a little elephant.  As soon as Rebekah held up the other elephant Abbie immediately recognized it and used her voice to tell us even before she hit her switch.
            Her success at skills like this is good news on so many fronts.  Her vision is obviously very good now because she can discriminate the differences in objects that are not very big.  Observing her on Thursday Lisa said, “Her cognitive skills are at about the normal preschool level…we really need to start pushing her.” Normal preschool level!!!  During this journey Ray and I have lamented losing the little girl who was as bright as a new penny, and so smart…turns out that we have not lost her at all.  I told Abbie, “Wow!  You are still a little Miss Smarty-Pants!”  I am overwhelmed at the miracle we are seeing rapidly unfold before us.  There is nothing more profound than the birth of a child…unless it’s the second birth of a child.  I am grateful to the depths of my soul for the second chance we have received.
            Our joy this week has been tempered by one thing that I must share with you.  My friend Katie, who I’ve often written about, was diagnosed with Grave’s Disease this week, which is a hyperthyroidic condition.  As you may recall Katie has six kids, ages 8 and under, to care for alone while her husband Walt is in Iraq.  I saw her today and was shaken…her health is truly failing her and she is wasting away.  I plead with you to pray for her, and if you know of a Christian young woman who would be interested in a “domestic mission trip” and would be equipped to care for the children and help Katie, please let me know. 
            This month it feels like each day is a living Advent calendar…we open up another door in Abbie and see another part of her come through.