Thursday, December 10, 2009

Priceless

I experienced some serious stage fright today, on my way to speak to Abbie's future classmates. Not because I was scared of a roomful of third-graders, but rather because I felt such pressure to do a good job for Abbie. I went there to win their hearts, to lovingly ask them to befriend my precious girl, and to be Abbie's voice. I prayed out loud all during the drive, because I felt such a sacred responsibility to Abbie.

The time with the kids was wonderful! They listened intently, asked good questions, and were very upbeat. I almost lost it before I started, as one of the little girls placed a lei around my neck - such an unexpected kindness.

I think it really helped that they met Abbie on Monday. I described some of the special things Abbie has, like a G-tube button, suction machine, and communication devices. We also did activities to help them understand what it's like to have spasticity, and a brain where answers may take longer to process, but are still correct. It was a lot of information to throw at them, but I started and ended with the most important thing: Abbie may be a little different on the outside, but on the inside she is just like them.

Then, I said, "Abbie's invitation to you is to be part of a miracle. There are many who would say she should not be alive. Many said she would never breathe on her own, but she does. They said she would never see - and for a while she didn't. But, now she does. They said she would never talk, but she's trying. They said she would never read, but she does. They said she would never do math...but she loves it. Because of all these things, many people, including me, call her a miracle. Sometimes you have to wait your whole life to be part of a miracle, and sometimes it comes right to your classroom door. So, Abbie would like to invite you to be part of her miracle - YOU can help her get better!"

As I was leaving, Mrs. T, Abbie's regular-ed teacher handed me a book made by her classmates. How do you turn printer paper into gold? Cover it with love, and illustrate it with joy. On each page was a picture of one classmate, along with a letter written to Abbie. Although I cannot scan any of it to show you, I must share some of the phrases that brought tears to my eyes.

One girl ended her letter by saying, "If anything ever happens to you, I will always be there for you." One boy ended his letter with, "We will be happy to have another member of the class." A girl said, 'I will teach you how to do something you like to do at school." Such tender hearts!

Abbie looked carefully at each photograph, and was excited to hear how many of her classmates also enjoy reading, math, and music. At first, she will mostly see her classmates on the playground, but I am even more hopeful now that she will not be lonely out there! What a precious, long-awaited gift they have to give Abbie, and what fills my heart is that they realize it, I think. They glimpse the special role they may play in a very special girl's life.

God is good!

Tuesday, December 08, 2009

Spectacles

We visited the neuro-ophthalmologist for the first time in four years last Friday. So much time had lapsed because I didn't really see the need for frequent follow-ups, since assessing Abbie's vision with charts was pretty much impossible.

Once again, Abbie's journey has made me thankful for technology. It turns out that there is now a computer that can measure and test the eyes without any participation from the patient. The optometrist got the first measurement, said, "hmmmm", and then repeated it. The machine spit out readings that showed Abbie is pretty darn near-sighted. She is now about the age I was when my eyesight went off the cliff.

We then saw the ophthalmologist, who confirmed the readings the old-fashioned way, with a light and varying lenses, which was even more impressive to me than technology. He got the same results. -3.75 in one eye, -3.25 in the other. He felt that since she is reading, and has enough vision to see near objects, we should not feel required to get her glasses. My bias, however, is to make everything easier for Abbie whenever I possibly can. I think that her nearsightedness could explain why she does not engage in things across a room, rather then just chalking it up to brain injury as we've always done. So, I am excited to see if a cute pair of glasses (pink and purple are available) will broaden her world.

Speaking of broadening her world, Abbie went on her first school field trip on Monday, even though she hasn't officially started school. We met all the third-graders at the high school gym just up the road. The high school "Health Academy" students were putting on a health fair for third-graders from many schools. So, it was noisy and full of energy. Abbie had been on oxygen earlier in the morning, prompting a decision to cancel. But, once she got better, we went because I knew her heart was set on it. I am so glad we did.

The regular-ed teacher is wonderful, and assured that Abbie was included in everything. At one station, empty packages of various snacks and drinks were passed out for kids to assess their sugar content. Abbie looked at hers carefully, and then we measured out the 22g of sugar to see exactly how much of it is contained in 5 little miniature Reese's peanut butter cups. Yikes!!! Don't think I'll be eating any more of those....ever.

Mrs. T, the teacher, had read part of a story I've written in Abbie's voice to the children, explaining her life. They were very curious about Abbie, but the forum did not allow them to interact with her much. I will be going to read the rest of the story, answer questions, and do some show-and-tell this Thursday. Would you please pray that most of all I can leave them with open hearts, so that Abbie will be warmly and boldly welcomed in January?

Another spectacle today has caused a time of introspection for me, as it has for many in these islands, I am sure. "The Eddie" ran today -- or, more properly, The Quicksilver in Memory of Eddie Aikau Big Wave Surf Contest. For those outside Hawaii, this contest can only be run when waves top 20 feet, so the last time it ran was 2004. Today, with wave faces of 35-45 feet, Waimea Bay was packed with folks watching out for the figures dwarfed by the waves. Brave, crazy, both? But what gives pause is not only the improbability of surfers riding life-threatening waves, but remembering Eddie, a man who perfectly embodied John 15:13, "Greater love hath no man than this, that he lay down his life for his friends." You can read a good summary of his story here.

Striking, shocking, willing sacrifice. And while I am sure that people like Eddie would disagree with those first two adjectives, I pray that we more often are struck by goodness, shocked by love, and inspired to magnify those qualities in our own lives.

"Eddie Would Go"....and so should we.

Tuesday, November 24, 2009

A Theme to Match the Times

All of Abbie's recent changes merited a change on her site, so - voila! Welcome to Abbie's garden of miracles, complete with fluttering butterflies! I can't wait to see the what kind of flowers are going to bloom in the coming months.

We spent a beautiful long weekend out in the country, at a beachouse at Malekahana. Our yearly small group "camping" trip is always much anticipated, but the flavor is different each time. This year it was sweet-and-sour.

The beauty of the raging ocean, the lushness of the open land, and the freedom from all the demands on the homefront are uplifting and rejuvenating...sweet. Being away at a place where all the other kids are running, playing, building an awesome fort, and generally too busy to engage with Abbie...sour. I don't realize how different our life is, how different Abbie is, until we are surrounded by "normal" 24 hours a day. My heart just hurts for her, and I realize that as her brothers, friends and peers grow older, the bridge between them gets longer, and the distractions that keep them from crossing to be with her are multiplied. It just presses me to pray harder, plead more insistently, and believe more fervently for her restoration. I would be so encouraged if you would join me in this effort.

Abbie was more than ready to get back to therapy on Monday, hopeful that she would be able to walk down the hall. Unfortunately, she was encouraged in these hopes by an unwise mother. I did not know the therapy plan for the day, so I talked to her about walking all morning. Oops. The therapists wanted to focus on her arms instead. That will teach me! Despite her disappointment, Abbie worked hard, and was able to bring her head up when laying on her tummy and leaning on her elbows. She would lift and I would hold it until she wanted to lift it higher. I was very impressed, since this is not something we've been working on.

We're still trying to work out the nursing support at school, so we don't have a firm start date yet. But, we did receive another packet of homework, so Abbie is working on the same spelling and vocabulary words, and math problems as her soon-to-be classmates.

I may not get a chance to post again before Thursday, so let me say now how deeply grateful we are to each of you who choose to follow Abbie's journey, pray with and for us, and continue to believe that with God, all things are possible.

Have a blessed Thanksgiving!

Tuesday, November 17, 2009

Maddening Disappointment

I truly believe that many of Abbie's recent advances are the fruit of her stubborn persistence over the course of many years. SHE would not quit, even when all those around her wilted at one time or another. So, it makes me smile when I can see that feisty streak in full bloom.

Monday's therapy session included the use of the Walkable, a harness device that would allow Abbie to stand for longer periods during our sit-to-stand practice. Unfortunately, Abbie heard it as "WALKable." When we first got her up, the harness was too high, so she was suspended in the air. Her little legs started going like mad...back and forth, back and forth. They did not stop until we had her feet back firmly on the ground.

We practiced sit-to-stand several times and she did well. When we were done, we got her out of the harness and laid her on the mat. She was so enraged that her face turned splotchy, which is rare. We thought maybe she was having an allergic reaction of some kind. Yea -- she's allergic to disappoinment, alright. When we figured out that she was just ticked off, we asked her why...and those little legs atarted going again. Up and down, against gravity, with her heavy tennis shoes and orthotics on...not easy to do for her. We had to spend time reassuring her that we are working through the process to get her walking again -- obviously not quickly enough for her liking!

I LOVE it that she knows so clearly what she wants, and is using her body to demonstrate her desire and readiness.

Other things are emerging as well. Maria did quite a bit of work with Abbie this morning. A little while after the session, Abbie sneezed several times, and then looked at Genevieve and said, "you, you, you, you" and grinned. We couldn't tell if she was playfully blaming Genevieve or asking for her help, but the clarity of the word was striking. Our little butterfly is coming out of her cocoon!

A short Mrs. Kravitz follow-up for Lost fans: It was quite the to-do on filming day last Tuesday. By the evening, they brought in enormous lights on cherry pickers and lit up the street. We were sitting on our front lawn having dinner, watching it all. Ray took that opportunity to remind me that if our hedge weren't dying a slow death (which I've been known to complain about), we wouldn't have had front row seats.

Then, one of the crew came to tell us that we would be in the shot if we stayed there, and invited us across the street for a close-up view. Show business is NOT glamorous, and I don't envy the actors who show up after the crew has been working for long days preparing...talk about pressure to perform!

Genevieve had taken Abbie to the mall, and walked right into the outdoor "set" on the way home. Unbeknownst to her, the corner in front of our house was lit up for a reason, and it wasn't just for her. She stopped there with Abbie to watch what was going on, which soon resulted in a voice coming over a bullhorn saying, "Excuse me, but if you continue to stand there, you are going to be very famous!" Genevieve then disappeared with Abbie into the shadows, on the way to our side door. A moment later, we heard the same voice say, "We can still see youuuuu."

If you are a hardcore Lost fan, be on the lookout for a scene with Ben Linus, where a girl comes to the door (I heard she plays his daughter??) and he talks about how he should have left a note on the door earlier. It seems as if they were shooting over his shoulder, so the (dying) hedge, stone wall, and wrought-iron fence you see are ours...woo-hoo, we are (almost) famous.

One last thing I feel pressed to share. Abbie was sick briefly last week (103 in the morning, 99 at night...that girl is strong!) As I was keeping watch through the night and into the morning, I picked up her Bible to read whatever opened up. 2 Kings 4 - a familiar story about the widow about to lose her sons to slavery. Elisha asked her what she had to repay the debts with, and she told him, "nothing but a little bit of oil." He instructed her to go to all her neighbors and ask to borrow empty jars, and "not just a few". Once they'd gathered the jars, she and her sons closed their door and began pouring.

Verse 5 caused me to stop cold. As long as there were empty jars, the oil kept flowing. But, when the widow asked her son for another jar, and he answered, "There is not a jar left" the oil stopped flowing.

What struck me in that moment is that as long as we offer God our prayers, his spirit will keep flowing. And, just like the widow, all of the jars are not in our own homes...often we must ask our neighbors for their jars, their prayers. I pray that we would become bold in asking for prayer, and in praying for others so that we would never have to say, "there is not a jar left - there is no more room for God's spirit to move."

Since I read that passage, the Lord has brought some exceptional people into my life that need a jar or two, or ten. Go check your cupboards for jars, and then watch to see who comes to your door.

Monday, November 09, 2009

Kindness from Every Corner

I suppose when things are going well, the whole world looks sunny. That's sure how it's seemed around here lately. Every time I turn around, someone pleasantly surprises me with thoughtfulness.

I must admit to being a bit of a Mrs. Kravitz at the moment...curious and crabby rolled into one, because the TV show Lost is using a house across the street for filming tomorrow. In preparation, the "No Parking" signs appeared out of the blue on Saturday. I was miffed, not knowing the reason that we apparently would not be able to park in the same ZIP code as our home -- the barricades with notices were everywhere.

Yesterday we found out it was Lost, and watched a crew move the normal furnishings out of the house, and move the set furnishings in. As I type, all the semi-trucks are moving into place outside. I was concerned about how we would go anywhere with Abbie if we had to walk over a block to the van. It takes more than one trip to get all of her stuff into the van, along with her.

I decided to be the modern version of Mrs. Kravitz, who simply stews and doesn't open her big, cranky mouth. Good thing, because it allowed me to receive the gift of compassion. We were loading Abbie up for therapy today when one of the crew guys walked by. We chatted for a moment about Abbie's chair, and then he disappeared. He came back with a security guard and the location manager in tow. Devon, the location manager, told me -- "You just park your van right in front of your gate tomorrow...just disregard those signs. If anyone hassles you, come see me right away."

It means so much when people can see with their own eyes, and hearts, without explanation or request. I'm back to plain old me now....well, almost. There's enough Mrs. Kravitz left to ensure I'll be parked in my living room tomorrow, overlooking the goings-on across the street.

We then went to therapy - and had more excitement. We've been working with Abbie's arms intensely using a method Maria showed me last week and an oil I created. Pardon my lack of humility here, but we have achieved stunning results so far. Not only are we getting the arms to open up, but we are getting inward rotation, flexible wrists, and open hands. I was so happy to share this progress with our faithful therapists.

Then, Abbie got to do her favorite therapy exercise: sit-to-stand. She loves being in charge of her body, and "telling" us when she's ready to stand by starting the move herself. She looks amazing on her own two feet (with Lynette supporting her.) After a few iterations, we measured her knee flexion to compare to the measurements we'd taken before beginning. She broke her records for both knees today!! 75 degrees!

After bring Abbie home, I went to her school toting the medical paperwork we needed to complete the enrollment process. I must say again, the staff just blows me away. A packet was waiting there for me, but before I could open it, the principal came out and wanted to introduce me to the counselor, who was coordinating an upcoming field trip. You see, we don't know exactly when Abbie will be starting school, but even so, they have already planned to include Abbie in the field trip. They had a permission slip for me to fill out, and we made plans for us to just meet them at the site, since it's two blocks from our house. They are going SO far out of their way!

Once I opened the packet, I just blessed the name of our new Teacher-Angel, Mrs. T., the regular-ed 3rd grade teacher. She had included three baggies of seeds for Abbie to do the science experiment, as well as worksheets for the current language arts chapter. What thoughtfulness, and willingness to go the extra mile for a student who is not even technically hers yet.

Blessed, blessed, blessed. That is how I feel tonight!

But, in the midst of all our joy, there is a reality check and sorrow. One of the links on the left side of Abbie's blog says "Tori Schmanski." Tori was a beautiful, bright, dancing teenager when the car she was in ended up in water. She had the same kind of injury Abbie does. Tori passed away on November 7th, leaving behind a family who did everything, EVERYTHING they could to support, nurture and heal her. I can't say that events like this, sudden turns like this, don't haunt my heart, even on days as shiny as this one. Please, pray for the Schmanski family tonight.

Monday, November 02, 2009

All in the Right Timing

As we've learned so many times along this way, delays and detours often lead to answers better than we could have hoped for in the beginning. Today, was verse number four of that song.

In the morning, we took Abbie to visit her potential classroom at Ali'iolani elementary. She was excited to see the other kids, meet the teachers and aides, and see the room. As I talked with Paul, the teacher, and looked at the layout of the room, I began to share Abbie's excitement.

Then came the screeching of mental brakes...I learned that all of the third-grade (as well as second-grade) classrooms are upstairs. There is no elevator. My hopes of her having time in a normal classroom evaporated, and I tried to hide my disappointment until I could really reason through it. We had a meeting scheduled with the whole IEP team later in the afternoon, so I figured we could talk about it then.

I sought counsel from a trusted special-needs mom, and talked a bit with Ray. Mostly, I felt like a melting Jack-o-lantern. My hopes had been burning so brightly, but now the candle was snuffed out and my smile began to turn down at the corners.

I arrived at the meeting with a knot in my stomach -- so torn because I truly like every member of the team at Ali'iolani, but I just didn't want to trap Abbie away from her peers. I am glad that Ray and I opened our ears more than our mouths! As we outlined our concerns, as well as Abbie's recent cognitive explosion, not only were we able to come to reasonable conclusions and create workable plans, but we got to know the team even better...and realized how profoundly blessed we are.

Just some examples:

* I showed them Abbie's curriculum when they visited the house, one of which is a homeschool curriculum. Not only have they already researched both in-depth, but they have already ordered them to use with Abbie, to ease her transition to school.

* The teacher showed me a consent form for videotaping in the classroom, and asked if I would strongly consider signing it, because when the therapists visit his kids, he tapes the sessions so he can make sure he is working with the kids correctly.

* During the meeting I asked the third-grade teacher present if at some point I could look at the third grade content to ensure Abbie would receive all of it. After the meeting she pulled out each of the texts and workbooks, walked me through each one, showed me where the class was now at, and gave me copies of blank worksheets they have already done.

* Abbie's teacher mentioned that he is very into technology, computers etc, and runs the Lego-robotics activities at the school. I told him that thrilled me, calling technology "Abbie's bridge to the world." He smiled and said, " You know, I am really thinking of her as more of a Stephen Hawking....she is so intelligent, we just have to find a way to get it out. I see her as more of a 'Resource' kid than an 'SMI' Kid, and I was a resource teacher for three years before moving to SMI, so I am very familiar with that."

I had to ask him to define those terms for me: SMI means something along the lines of "severe, multiple disabilities", while "Resource" means just needing some extra help or different adaptations to learn. He already sees her for who she is, and is very willing to welcome me into his classroom to help everyone get to know her better.

We are hoping that we can get all the necessary paperwork done to have Abbie start in 2 weeks or so. If you happen to have children at Ali'ioilani, you should be very proud of the staff and school. I have, at times, had severe reservations about the Dept. of Ed's ability to deal fairly with a girl like Abbie. I knew it would take just the right people to gain my trust...and today we found them!

Abbie also had a lot of fun on Saturday, dressing up as Alina, the butterfly princess from one of her beloved Barbie movies. We even decked out her chair with some butterflies, ribbons and streamers. I was so sick that I missed her morning therapy session, as well as her trip to the mall that evening....but, faithful Auntie Rae took this picture on her phone for me:

Wednesday, October 28, 2009

He Made All Things Beautiful

This morning began with a group of very nice visitors -- the principal, special services coordinator and special ed teacher from Abbie's potential school, along with another woman from the district, came to see Abbie and what she's been up to lately. The Purple Board was front and center as they walked through the door.

Abbie was a little sleepy, but did do some math problems. I also showed them the book where Rae is carefully recording her progress. As I told them "She's changed since the meeting on September 15th", the depth of that understatement made me smile. They were very interested in all of her curriculum, and in her general needs. They are open to me going to class with her to train everyone, and help them get to know Abbie better -- which is huge relief for me. Her class already has 5 kids with wheelchairs, so she will feel right at home. But, we will talk more next week about mainstreaming time with regular ed. classes. Her intelligence and ability to learn rapidly is making me think more and more that she belongs with regular kids, learning the same material, and expressing her knowledge in adapted ways. I also think being around kids who walk, talk, interact and learn quickly will be motivating and enjoyable for Abbie. We'll see.. But, the bottom line for today's visit is that I was really encouraged by how kind, open, and interested the staff members were.

After the visit, Abbie began working on her Cubbie verses. Which, for most of you requires a little backstory. "Cubbies" is the preschool section of a church program called Awana that all our boys did. As Cubbies, the twins wore bright blue vests, and earned patches for the vests by memorizing verses.

Shortly before she was injured, we were cleaning out the garage. Abbie found her brothers' old vests, along with a "Cubbie Bear" backpack. She promptly donned both things and marched around the garage proclaiming that she would soon be a Cubbie. September wasn't too far away, so I was excited to think about her being a Cubbie, too.

That September is long gone now, along with that sassy two-year-old. However, as she began blossoming lately I thought, "I bet she can memorize verses!" Cubby verses are short and simple, so I figured that would be a good starting place. I asked my friend Sandra, an Awana leader, if she could get a book for Abbie.

Well, Sandra mentioned this to one of my favorite ladies at church, who wishes to remain unnamed, but is the Cubbie's leader. She said, "Oh - not only will I get a book for her, but also a Cubbie bear and the finger puppets that go along with the story. I was waiting for her that fall, and so looking forward to her being a Cubbie..."

I wept when Sandra told me that -- even now, we are not the only recalling the loss.

Abbie was THRILLED when I showed her the Cubby bear, and kept the finger puppets on for hours. Then, the work began. I introduced about six verses, to catch up to session three, where the group is now at. I told Rae all about it this morning, and we devised a way to test Abbie's memory. The deal is - if she memorizes the verse, she gets a sticker for her book, so she is VERY motivated.

I'd written the verse in entirety on an index card, and then each word separately on cards. We put the whole verse up and had her find the words in order. Then we took the verse card down, put some of the words up and had her fill in the blanks, which she easily did. Lastly, we took everything down, and Rae simply said, "I want to see if you've memorized it" without even detailing what "it" was.

Abbie correctly chose every word, in order, without missing once. She then picked out the Scripture reference from a choice of three. Here's what she "said"

"He made all things beautiful. Ecclesiastes 3:11"

Indeed!!

Saturday, October 24, 2009

Abbie in the News

I almost titled this post "We Have a Witness!!" because as part of the news story, a very kind photographer visited our house. Dennis Oda, from the Honolulu Star Bulletin spent an hour with us, capturing Abbie doing many different things, most notably, multiplication.

We seated her in her chair, set up a complex problem, and let her go. When she picked the right answer, I held it in front of her face and asked if that was her choice. She gave me audible confirmation, which elicted a "Wow" from Dennis. Finally! Rae and I were so relieved to have a third party witness what she can do....if only it had been on video.

The day before I'd spent almost an hour on the phone with Christine Donnelly, whose talent became obvious to me when I read the article that she produced from that interview. I think she made me sound much more coherent than I felt I was in the interview.

Here's the link:

Name in the News: Tiffany Vara


I owe Christine, Dennis and the Star-Bulletin a huge "Mahalo" for bringing generous and positive attention to brain injury recovery.

My interview with Christine also presented me with a challenge of opportunity. For the past several months I've been working diligently at preparing a company for launch. I felt I was about a week out from a soft opening the day I talked with her. When she told me the piece would run on Friday, and would include the web address, I said, "Well, it will be open Friday!"

I hung up the phone and wondered what I'd done, and if I could pull it off. A little sleep deprivation and lot of typing later...it's done! So, I would like to invite you to visit Matrisse, my wellness company built on everything that Miss Abbie, and many generous teachers have taught us through this journey.

Abbie and I have been keeping in our routine of reading Psalms in the morning. Sometimes, when I am certain no one is within earshot, I even sing them to her (making up my own off-tune melodies as I go). One that we read this week seemed penned just for her:

Psalm 20: 1,4-5

May the Lord answer you when you are in distress;
may the name of the God of Jacob protect you.
May He give you the desires of your heart
and make all your plans succeed.
We will shout for joy when you are victorious
and will lift up our banners in the name of our God.
May the Lord grant all of your requests.


I see Him answering and protecting her daily. I know some of the desires of her heart, and can guess at a few plans, but I think there are many that remain just between her and God. In these recent days, however, I sense God pulling back the curtain just a bit, and revealing the giggling girl full of anticipation and excitement who has been waiting to burst forth.

My spirit shouts even now, while at the same time I hear "You ain't seen nothin' yet!"
May God grant the mercy and grace for us to see her completely victorious.

Saturday, October 17, 2009

Multiplication

Saturday morning found Abbie at one of her favorite places - the University of Hawaii. No, despite all her recent gains, she's not going to college quite yet, but rather was reunited with her long-standing group of friends who also use devices to communicate.

Abbie was not able to participate in the Saturday morning clinics last year because of all her surgeries, so we are both excited to be part of it again. I really liked her student-therapist, and am looking forward to receiving help figuring out how to keep pushing, and opening doors for, Abbie.

In the parent conference at the end I was gleefully detailing Abbie's recent academic progress, which led to a lengthy discussion about how we give her more choices from which to select answers. The short answer is -- it's difficult right now, and will be changing.

The longer answer is, we are going ahead with planning for the hand/arm surgery. The meeting we had on Thurs. was a parent's dream. For all you special needs parents out there -- can you imagine having every single therapist you work with AND the orthopedic surgeon in the same room? There's a lot to figure out, as a team, to determine exactly what the procedure will look like, but at the end of it, she'll be spending four weeks in casts.

I feel guilty for the fact that I can so easily dismiss the arm casts as a concern -- but after two spica casts, they seem comparatively inconsequential. Not for Abbie, though. She did NOT look happy during the entire meeting. I keep reassuring her that she will not wake up with a huge leg cast on, and that it won't be nearly as painful (I am hoping!!). I continue to explain all the things that will be easier -- using communication devices,fingerpainting, drawing, having her nails painted...it doesn't seem to make a dent in her well-earned resistance. This just boils down to one of those times when as a Mommy I have to choose what is best for her even if she disagrees.

After working hard at UH for three hours, Abbie then came home and did over two more hours of school work. She would not quit. We hadn't planned on introducing multiplication for a week or so, but since she wanted more...we gave it to her.

After being with Abbie all morning, I was spending time with Ray and the boys while Rae played tutor. She introduced "groups of numbers", as in "two groups of two". Using this method she introduced the twos times table up through 6, which Abbie quickly picked up. For 7,8 and 9 she simply put up cards that said 2x7, etc. Abbie did not miss one.

At the end of their session, Rae beckoned me in to see the last problem Abbie had worked correctly:

2 x 5 + [picture of four dots] - 6 + 11 - 2 = 17, with choices of 17, 23, and 14.

I giggled like little girl getting a lollipop. But, Abbie wanted me to see for myself, so she insisted on one more.

We set up the following problem:

2 X 6 + [picture of five dots] - [picture of four dots] + 13 - 2

Rae and I had to signal each other behind Abbie's back to make sure WE had done the problem right, so that we could include the correct answer in her selections.

It took a while, but Abbie eventually chose 24 (and, so you don't have to do the problem...she was right.) I wanted to confirm it was her choice, so I got the 24 card from the board, and held it in front of her and asked, "Is this your choice?" With more than a hint of indignation, she used her voice to make sure I knew that's the one she wanted...I had to laugh.

When I told Matt a few days ago that Abbie understood subtraction, and that we were planning to show her multiplication next week, he added "and the week after that...astrophysics." Put another way, her speech therapist said, "I want to improve her communication access so that we can find her upper limit...because I am not seeing it yet." I went looking for it today....I stepped outside, looked up at a clear, blue sky and said, "Yep, there it is."

God is good.

Wednesday, October 14, 2009

More Math

We have decided to keep a composition book to better track what Abbie does each day during "school." Since she had been excelling with addition, we thought it was time to introduce subtraction.

Rae started out the same way, asking, "If you have three circles and I take away two circles, how many do you have left?" Abbie selected "1" as her answer, and thus concluded the entirety of instruction about subtraction.

With that simple little lesson, Abbie went on to correctly answer:

[picture of three circles]-[picture of two circles] - during this problem she was again asked "if you have three and I take away two, how many do you have?

5 - [picture of 3 circles]

9-5= [picture of 4 circles] -- the only thing said to Abbie was "Find me the answer"

Then, we decided to challenge her, and mix it up a little bit.

9-5+3=7
10-2+[picture of three dots]=11
10+12-[picture of four dots]=18 -- on this one Abbie needed to hear what many children working mixed problems hear, "Pay careful attention to the signs"
10-3+24=31
12-3+4-10=3

Wowza!!

So, if that's what she can do on Day One of subtraction...look out for multiplication and division coming right around the corner!

We'll be having a meeting tomorrow with her orthopedic surgeon and all of her therapists to discuss a possible hand/arm surgery. Her thumbs just love to lay on her palm, which makes it hard for her to use a joystick, and other communication aids. Her arms rotate out, which again, make access to communication devices more difficult. Dr. B. can remedy both of these situations through surgery. We will be talking as a team tomorrow to determine the what/how/when of the procedures.
Although I'm never thrilled about surgery, when I see how her quality of life and ability to do things has improved as a result of the major hip/leg surgery, I project those results onto her arms and hands and imagine what she'll be able to do -- especially with communication. Please pray for wisdom in this area.

Abbie was very excited to find out today that her faithful friend Cassidy will be welcoming home a little sister from China in December, after a 3.5 year wait! We can't wait to meet her!!

And, I must send out hugs and prayers to my extended family in Illinois. My Auntie Lavonne passed away last night, leaving a husband, eight children and many grandchildren. I wish I could be there with you as you say "farewell" and celebrate the thought that her suffering is over and she is in the presence of God in a perfect body!

Sunday, October 11, 2009

Riding the Same Ol' Train

If you've read the recent purple board updates, you know we've been thrilled with Abbie's academic progress lately. Over the years I have learned the lesson, though, of not taking what she is currently doing, or the speed at which she is progressing, and projecting that into the future. You have to celebrate the victories for what they are in the present, not as precursors of future gains. Most of this past week reminded us once again, that we are riding the Brain Injury Train, and let me tell you, it is certainly not an Express!

Abbie didn't have a lot of interest in school work last Saturday and was giving random answers just to get through it (as many kids often do.) We thought perhaps she was distracted by excitement over that night's plans to attend the symphony. You should have seen her....all dressed up and riding in the van late in the evening, she was all grins - knowing she looked beautiful AND was up past her bedtime. The symphony was a wonderful experience for her, since we do many of her exercise sessions to classical music. Abbie was so excited to hear real violins, cellos, flutes and horns! It was an especially appropriate performance for Abbie because one of the actors from Lost narrated The Story of Babar (delightfully, I might add), with musical accompaniment and enhancement. Although she konked out at intermission, Abbie had a memorable experience. Once again, it was made possible by the generosity of caring people! A woman that has never even met Abbie, but hears about her from Genevieve, purchased tickets for our entire family. Since the boys had plans, Genevieve's family came with us. Amazing. At eight, having already been to the ballet and symphony, Abbie is becoming quite the cultured girl.

Her disinterest in school, and most everything else continued through the week, and she just seemed very far away. Those kind of days are difficult for me, and when they pile up I begin to wonder if the good days were just a mirage I dreamed up

I started focusing on some specific interventions on Thursday, and she had a pretty good day in PT and Speech on Friday. Even better, she was smiling all day long. And then today, I arrived home from a very long day today to find this note from her nurse, Rae. I love it when someone writes an update for me!!

"Hi Tiffany-

Since we didn't get much of a chance to talk today, just wanted to fill you in on how smart our Abbie really is. She is using her eyes, and working hard, as usual. When she has a good day, she really has a good day.

She was able to look at the purple board and do the following math problems by herself. I didn't say anything to her about what the numbers were or anything, except asking her to find me the answer. She did 9+8=17, 9+8+10=27, 23+2+5=30. I can't believe how far she has come!! I'm so so proud of her, and I can't imagine what you must be feeling.

OK, so if you think that was amazing, she just did 23+12=35, with choices of 35, 31, and 50. Correct!! 23+27=50, with choices of 35, 31, and 50. Correct!! 23+27+12=62, with choices of 62, 30 and 75. Correct!! There is no stopping this girl. She is on her way to college! Unbelievable. And, all by herself without any help from me at all! I honestly did not say anything to her at all. I am speechless!!

23+31+[picture of four dots] = 58 Correct!!
23+31+30 +[picture of three dots] = 87 Correct!!

Now I'm puzzled as to how she is figuring out the answers! She can't be counting because those numbers are way too big. All I can say is WOW!! AMAZING!!

23+31+30+[picture of three dots]+26 = 113 CORRECT!

I wish you were here to see this because you probably think I am crazy -- but she really is adding!

And the problem of the day:
31+11+25+[picture of three dots]+24= 94, with choices of 110, 94, and 86. CORRECT!

I tried to call you to let you know how she was doing and to put a smile on your face...

Abbie is unbelievable and is going to continue to thrive if we push her!"


I was stunned when I looked at the purple board, and saw that last problem there. I have not one clue how she can accurately add up numbers in a problem that spreads over two rows of flashcards. When her brothers saw the problem they said, "Whoa...I would need a pencil and some time to get that right!" They were then silent for a moment, as the depth of Abbie's intellect finally sunk in.

"Mom, I think she is brain child," said RJ without a trace of irony in his voice. "I think maybe her brain injury worked backward. Instead of killing cells, it created a whole bunch of new ones." His precious still-childlike logic made me smile.

Matt added a very observant, and I think, accurate, assessment. "I think that since she can't move her body, she is able to focus her brain very, very well."

The clickety-clack of the Brain Injury Train wheels always sings out the same song: "Who really know? Who really knows? Who really knows"

No one -- not about why the frustrating, heartbreaking confusing things happen, and not about why the incredible, hopeful, confusing things happen.

We just have to keep on riding, taking the valleys with the hilltops, ever trusting the Conductor, and celebrating when His grace is shown in such amazing ways.

Friday, October 02, 2009

Authorizations and Appointments

This has been a week when we've truly realized that having a special needs child is a full-time job. I feel like I've been pinging from meeting to appointment to meeting to phone call.

On Monday morning we were joined at our PT/OT session by the medical director of the managed care company that authorizes Abbie's therapies, along with a care coordinator. I was very nervous about this visit, and the meeting that would follow therapy, because I worried that Abbie's access to therapy would be cut off. After all, she is over five years out from her injury, and I didn't know what kind of progress they would be looking for to justify continued therapy.

I was encouraged to find out that the medical director is a physiatrist, and had a long history of working with brain-injured patients. She was very observant, and gave Abbie time to respond to requests. Abbie did her part by having a very "on" day, thank goodness. She did well in the sit-to-stand practice, and then she activated the power chair when was she asked to do so. All the while, though, during her brilliant performance, I was dreading the post-therapy meeting.

It turned out that all the chatting we'd been doing during the therapy sufficed as the meeting. As the session drew to a close the Dr. turned to me and said, "So what I am thinking is one OT/PT session and one PT/Speech session per week, and then we'll reevaluate in three months because she is changing so quickly." I almost cried.

I told her how very grateful I was to not have her put the "fill in the blank" (e.g. "one year out, "two years out") limit on Abbie's recovery. She answered "Oh no..not with an injury this diffuse in a child, you just never know, you never can tell. Let's just she what she does."

We got home just in time to prepare for the next meeting, with the folks who authorize Abbie's nursing hours. Back in July we were told that her hours would be cut from 30 to 2-4 per week. We were trying to prepare ourselves for this axe to drop on Monday afternoon. We were told that while cuts are on the way, they cannot be implemented until a new policy is written, which could be December or January. So, we have a reprieve for now. After two hours in that meeting, my head was spinning, but I was relieved to be through it.

Yesterday morning we received a call from our neighborhood school, who determined they could not care for Abbie, to tell us what school had been selected for her, Ali'iolani Elementary.

We've set up an appointment for their staff to meet Abbie, and are trying to set one for Ray and I to visit the school. We will also have to have more IEP meetings, especially since Abbie has now met many of the goals we set for her just last month.

Yesterday afternoon I took Abbie to see our fantastic orthopedic surgeon, Dr. B. We started out with Xrays of her spine, hips and femurs, which were fine. We discussed the timing of taking out the hardware in her hips and femurs. I was hoping it wasn't a strict one-year timeline, because that would mean an OR trip next month. Nope - no time pressure on that front, we could wait up to a year.

But, there was discussion about the possibility of a completely surgery. Abbie's thumbs are contracted are pretty glued to the palm of her hands. In addition, her forearms always roll to the outside. Dr. B. can do a procedure to release those stubborn thumbs, and can reroute tendons to rotate her arms to a normal position. I wouldn't consider this surgery, save for the fact that there is now a huge upside. Abbie's communication and expression has been exploding lately, and with open thumbs and properly-rotated arms, her ability to access communication devices (and the power chair) would be greatly increased.

I was thinking about pushing this procedure off quite a while when Dr. B. made a very compelling point, "Remember that her hand is her communication tool. So, think carefully about how far down this track of new communication devices and methods you want to let her progress before you knock her back with a surgery and then have to adapt to new positioning." Hmmmmm, he is so right. We are going to schedule a meeting with him and all of Abbie's therapists so we can decide what (and when) is best. Please pray for wisdom for us in this matter.

Abbie continues to change and progress in amazing ways. Today, as we did our morning "dancing" session, a new, very foreign thought came to my mind. As she shows us how quickly she learns, how ardent a learner she is, and as college for Abbie has crept into my mind, that lead to "what then?" Today, I imagined her life as an adult, and for the first time since the day she was injured I considered that Abbie may live apart from us as an adult. Perhaps not independently, but "on her own". I didn't know how to feel about that at first, as I've grown to assume she'll be my forever daughter, always with me. I now suspect she has much bigger plans than that!

Saturday, September 26, 2009

The Purple Board Part II

Abbie has astounded us today to such a degree that I promised her I would sit down and tell you all about it right away. That Purple Board seems to be the tool she has been waiting for, as we are finding intelligence beyond our dreams.

Ray and I got home from Matt's cross-country meet and RJ's football game today to find Abbie "doing school". Today, Abbie was shown the words "Christmas", "Thanksgiving" and "Halloween" once, along with picture cards that depicted each day. After being exposed to them once, she knew them! Not only that, but she was able to pick them correctly out of three choices.

Until now we have only been giving Abbie two choices, one on the right and one on the left. Her nurse, Rae, wanted to challenge her, so gave her a third option that was her "up" choice, requiring her to lift her arm to select it.

She built sentences that said things like "Christmas is on December 25", with her responsibility being to choose "Christmas", "December" and "25". The stunning thing about that particular sentence is that we hadn't really taught Abbie December yet, as we have been focusing only August, September, and October. Somehow she either read it or deduced the right answer. She also chose 25 promptly when her other choices were 27 and 31, so it wasn't an obvious choice.

Then, Rae decided it was time for math. I felt confident Abbie understood the concept of addition, but we haven't really worked on it. After ten minutes Rae came to get me to say, "1+1, 1+2, 1+3, and 1+4...so easy for her".



Abbie was continuing to choose from three options, which required her to use her body very precisely. Hmmmm, we wondered...how much more math could she do. This picture answers that question:




It took Abbie less than ten seconds to look at this problem and select the right answer. She also correctly answered 2+5. She is so incredibly happy when she is at work, and able to exhibit her intelligence. Her reading, and more fundamentally, her vision, are blossoming at rates that takes our breath away.

OK....I was just finishing the sentence above when Rae came in and said, "I think you
ought to leave the camera with me." Check out the problem below!



You can see how the selections are set up on the left and right, and the "up" position. Abbie correctly chose 9 as her answer. The sensation of pleasant shock is making my hands tingle as I type. There are NO limits for her!

You would think, with all of this future-altering progress, that I would be walking on air. The frustrating thing about sadness and grief is that they are so illogical, coming in waves at times that make no sense. Perhaps because Chase's departure is making me realize my days of hands-on mothering truly are numbered, I have just been very down these past few days. I am not a woman given to fancy jewelry (I don't feel as bad with 11 single earrings if they are cheap), but I realized, when we went out for the last family dinner before Chase's departure, that my children are my jewels. Being seated with four sons around me made my blessings so extravagantly obvious. I am a very rich woman indeed, in the things that truly matter.

Still wallowing in the blues, I answered the door this afternoon for the pizza man, bringing lunch for our inpromtu gathering of teenage boys. Many of them were outside, which caused him to ask how many kids we have. When I answered "five", he smiled and said, "Wow! I used to have a son but he died three years ago."

Now, this particular pizza man knows us well, and I tip him generously because I am always touched by the sight of this slight, stooped over old man slinging pizzas up to our door. I don't know what prompted him to share the story of his son, Martin, who just went to sleep one day and didn't wake up, due to an undiagnosed heart problem.
His pride, sadness, confusion, and longing mixed together in his eyes and overcame his Vietnamese accent. Grief is universal. As we finally parted ways, I felt deeply in my humbled heart, "LOOK at what you have, not what you don't. All your children woke up this morning." The fog began to lift.

Ten minutes later, Rae came to tell me Abbie was doing math.

I think the lesson is, we all have a story. When you feel lead to share yours, please do! I didn't mention anything to Hiep about Abbie, and he probably has no clue how deeply he ministered to me in his brokenness. With God, tears are never wasted.

Wednesday, September 23, 2009

The Purple Board

Some classrooms have blackboards, some have whiteboards, and these days, some even have Smartboards. But, not Abbie's classroom..oh, no, she has a Purple Board!

OK, I admit, it wasn't necessarily by design, but when I went to buy some black flannel to affix her word cards to, there wasn't any available. There was, however, a big fat bolt of bright purple! Easy decision, and beautiful, Abbie-pleasing results.

Some time ago her therapists built a PVC-pipe "gym" for Abbie, from which we could hang things for her to kick at or bat with her hands. As she began to flourish in reading, we decided to put the gym to academic use. Simply laying a piece of flannel over the top bar gave us the now-beloved Purple Board.



And, here's what she's been up to this morning:


In each of the following pictures Abbie had to choose three of the words herself in order to build the sentence. In this one she had to correctly choose the day of the week, the month, and the date.



In this one she had to choose the words "hot" and "sunny", and choose the right picture to depict "sunny"



This one is my favorite, because she had to work extra hard.



In this last one, Rae told her that she was looking for the word "swimming", but then showed her the words "swimming" and "raining" without telling her what they were. Abbie quickly (and correctly) chose "swimming." I was stunned and challenged. We thought these sentence building exercises would be challenging for her. Not so much. So, if she can already read "swimming" without explicitly being taught that word...where do we go from here? I LOVE problems like that!

This past weekend brought the first big shift in our family, as we took Chase to college at Santa Clara. It was a profound "full circle" experience for me, because Chase was born during Christmas break of my senior year at Santa Clara.

After I'd dropped him and his stuff off at the dorm, I circled the campus to find a parking spot. Walking back towards his dorm, I approached the mission church as the first rays of pink sunlight were finding it. Ushered down the driveway by myriad rosebushes, the long arc of God's faithfulness struck awe in my heart.

Having Chase so young was a scary thing. Youthful naivete and a good bit of bravado made it possible for me to walk through campus ignoring the whispers, and to sit sideways in those desk-chair combos that are completely unfriendly to pregnant women! Although I didn't know Him well then, God's grace attended my every step...not just though graduation (on time, with my class), but through each day of motherhood since.

Standing in the shadow of the large cross that sits before the mission, the "rightness" of my decision back then was utterly confirmed. Oh, I have always known it...from the first flickering ultrasound images, to counting toes, lost teeth and As on the report card. But, for the first time I felt like I have completed an assignment, and received a complete affirmation from the Lord. God's faithfulness, and the answers to prayers may best be measured not in moments, but in years.

Being Chase's mom has taught me much about how I journey through life as Abbie's. When folks try to measure Abbie's potential in a snap-shot, I will smile and recall the revelation of that long arc, looking forward to the day, in the shadow of the cross, when I will sense once again, "Well done....", and rejoice in the joyful outcomes of the decisions we are making today. We choose hope, faith, and love, and we trust God for the end of the story.


Right before we said goodbye, on the steps of Mission Santa Clara


Among some of the many roses in the Mission Gardens at Santa Clara



Chase and I together at the foot of the cross.

Friday, September 04, 2009

War and Peace

I've been too busy to write, and am now faced with figuring out how to relate all that has been happening without keeping you here 'til Christmas. Tolstoy I am not, but you may think I'm his niece if you read this whole update in one sitting!

I'll start with what I am sure Abbie would say is the most important:

PART I: ABBIE'S EIGHTH BIRTHDAY:



Her day, August 23rd, did not slip by unnoticed, especially by her. She wore a shirt proclaiming "Birthday Girl" to church, but we left the tiara at home because it pinched her head. I told her that was because she's getting so smart. Our pool is undergoing some renovation, so we decided to wait to have the official party until that project is complete. The pool is Abbie's "Happy Place", ironically enough, so she wants to have her friends over for a pool party.

After church we took her down to the Pacific Club so she could swim with her Daddy. I thought her face would freeze with that dimple in place (not that I would mind one bit), because she never stopped smiling. We enjoyed a nice dinner, and them came home to savor the wonderful birthday cake that Auntie Rae had made. Perfect for Abbie with lots of whipped cream and chocolate pudding, it wasn't a hard sell to her brothers either!


She swam with me a little bit too, but it's not quite as fun as with Daddy!

She is so very proud to be eight! We've used this to our advantage in therapy recently. Lisa, her speech therapist, had her "build" a birthday cake by making her pick out the pieces in the right order. She then sent it home for us to decorate.

Well, Abbie has been blossoming so much in her reading lately (more on that later), that we decided she could "write" on her cake, instead of just putting stickers on it. So the cake you see below, every it of it, was built through Abbie's hard work. You see, not only did she have to identify the right color and size for the layers, but she had to correctly identify every single letter on that cake. We would give her a choice between two letters, and she never missed...not once! This is one birthday cake that is going to be framed and hung on the wall!



PART II: Scary Times and Sirens

Last Sunday, Kapiolani was having a huge event at the zoo to celebrate 100 years of caring for children and women. After church we quickly changed Abbie, slathered her in sunscreen and got her in the stroller, ready to go. Moments later, as we were set to walk out the door, I noticed that her lips were purple.

"That's odd," I thought. So, I checked her with the pulse-ox. It showed 81. "No way!" So, I grabbed our back-up fingertip pulse-ox to check -- it said 79.

We quickly got her onto the massage table and watched her cheeks and eyes puff up and turn purple, and her trunk and arms get splotchy. She was really struggling to breath, and even 4 liters of oxygen wasn't helping her. As it became obvious she was having an allergic reaction to the sunscreen, I ran and got some Benadryl (thank goodness for G-tubes!)

After 10 minutes we still couldn't stabilize her breathing, so I had to call 911. Pretty surreal, as we have never had to do that in all these years since Abbie's injury.

The firefighters arrived first and put her on 15 liters with a non-rebreathing mask. This at least got her sats to 90, but she was still taking over 60 breaths a minute, and each one was a struggle. Once the paramedics arrived, we decided to go the ER, because I could not support that level of oxygen need at home.

At the ER they gave her an injection of epinephrine and a breathing treatment, after which she was very vocal. As we waited and watched, the doc said he was still deciding whether to give her an IV. Abbie was looking away as he said this, but the second she heard "IV" she turned to look straight at him, as if to say, "I don't think so."

We were able to come home after a few hours because we have oxygen and a nebulizer at home. I was thankful, and sure that all the drama was over. Turns out I was wrong. It's now five days later and we are still dealing with flare-ups. Just this morning her sats went into the 70s, and I had to put her on 5 liters of air, give a nebulizer and Benadryl, and try every trick I know to get her to breath and cough.

I am always so careful about what goes into and onto her body. Sunday was a total lapse in judgement, in the rush to get to the zoo. I simply grabbed a "Baby" sunscreen we had in the house, because it said "hypoallergenic", and I thought that if it was safe for a baby's skin, it would be OK for Abbie. Dumb, dumb, dumb.

So, all I can say is DO NOT USE Banana Boat Baby Tear Free Sunscreen SPF 50, and toss it out if you have some. After Abbie's severe reaction, I researched all the ingredients and was completely amazed that this concoction can be labeled safe for babies.


PART III: Smarty-Pants

We are blessed with some very exceptional nurses. After hanging out with Abbie for a while, they seem to morph into nurse/therapist/teachers. One of them in particular, Rae, is always thinking about how to open new doors for Abbie academically, and coming up with new ideas to try. Lately, she has been focusing on Abbie's reading, and over the past two weeks we have both been taken by surprise at Abbie's response.

Because Abbie is getting more movement in her arms, she is now able to move her hand between two choices on a little lapdesk, which allows her much more freedom of expression, and quicker choice making, than just using her one little hand-held switch.

One Saturday Rae confirmed that Abbie knows all the color, shape, and number words, as well as many of her reading vocabulary words. Still amazed a week later, she wanted to find some way to show that Abbie was actually reading and not guessing. So, she wrote the word "rainbow" on a card and showed it to her a few times. She also made cards with a picture of a rainbow on one and a flower on the other.

She then showed Abbie the word "rainbow" without telling her what it was, and said, "This is what you are looking for." Then, she showed her the two pictures and said, "This one will be on your left, and this one will be on your right."

Abbie was able to use her arm to find the rainbow picture. So, in one activity she had accomplished many things: reading "rainbow", connecting it mentally to the picture, knowing "right" and "left", remembering which side the rainbow picture was placed on, and then moving her body to find it.

Rae and I were jumping for joy - literally, I am glad there is not a video. It is just so glaringly obvious that there is great intellect inside that little body that is beginning to cooperate! My thought that evening was, "This little girl is going to grow up and go to college!"

When I shared that "crazy" thought with her speech therapist, Lisa, a few days later, she looked straight at me and said, "Well, of course she is. She's not going to let you hold her back, you know!"

PART IV: School

We have been doing many wonderful things in our homeschooling, as you have just read. But, we are beginning the IEP again to see if we can find a safe, appropriate place for Abbie to attend school part-time. She very much wants to go, but we have to make sure that everything is in place to support her medically, physically, academically, socially and emotionally.

Since this process is going to take time, we are going to keep pushing ahead with homeschooling, adding some new things we just found out about. One is "Precision Academics", which Abbie's neurodevelopmentalist showed us yesterday. This program is all online, and the workbooks are easily adaptable for what Abbie needs. I am very excited to have a little more academic structure, and can't wait to see what Abbie will surprise us with next.

PART V: Assignment: Dance

As I mentioned, we saw Abbie's neurodevelopmentalist, Linda Kane, for the first time in 18 months yesterday. During the drive out there, I was psyching myself up to find a way to do the exercises with Abbie that Linda would be assigning us. Many of them take four people to do, and are difficult for Abbie to physically accomplish. But, if we were going to commit the time and money to "doing program" again, we were going to do all of it faithfully....somehow.

Well, God heard my prayer of desperation before I even recognized I was praying one. In the interim since we last saw Linda, she has learned a new modality of therapy for children with high spasticity, like Abbie. It turns out that rather than the aggressive and difficult exercises, these kids respond beautifully to "Rhythmic Movement", which is just gentle, rhythmic rocking motions on various parts of the body.

As Linda showed me "Movement 1", which is just laying Abbie on her back, holding her ankles, and rocking her legs up toward her trunk, I thought, "Hey...THIS, I can do" All by myself, where ever we find ourselves during the day, I can do this!

The rest of the movements were just as simple, and, even better, enjoyable for Abbie. As she lay on her tummy, and I gently rocked her hips, she just melted. Linda told me we need to spend as much time each day doing this. I almost laughed, and told Abbie, "Our job now is to dance together all day....can you believe it???"

Ray and I were talking late in the evening, and the enormity of this appointment was finally sinking in. For almost five years I've carried a daily burden about what we need to be doing with Abbie's body, about how much we are not doing, and how to figure out a way to make it happen. I didn't realize how heavy that burden was until it was lifted, and replaced with an invitation to dance.

Linda also got to watch Abbie learn a new reading word, "Thursday", in about 30 seconds. So, our new goal is for Abbie to read and communicate in sentences. This goal dovetails nicely with the progress in speech therapy, which is leading to new communication devices and strategies. Again, I say, "This girl is going to college!"

PART VI: Where the Rest of Summer Went

During this lapse in posting, we took a family vacation to the Cascade mountains in Washington state. As usual, Abbie traveled very well, and the new wheelchair was as much of a blessing as we thought it would be. The day we were to fly dawned with Kyle still in the hospital, being treated for complications of mono. He was released an hour before we left for the airport.

So, our normal parade through the airport was enhanced this time by having two wheelchairs instead of one...it was quite grand! Kyle spent the first few days of vacation in bed, after which he could finally eat and drink again. After that he made up for lost time, and we became concerned that he might accidentally eat one of his hands in the rush to stuff as much food into his mouth as quickly as humanly possible! He continues to recover, and unfortunately was not cleared to play water polo this fall. We are happy enough, though, that he was healthy enough to start school on Aug. 11 and has not missed a day yet.

Now we're full-swing in the school year hub-bub: RJ's football, Matt's cross-country, band instruments, homework and looking forward to taking Chase to college in a couple weeks.


Matt and RJ's first day of 7th grade. I am finding that boys don't care nearly as much about what they wear the first day of school....obviously!

Most of all, I am finding that each day is bursting at the seams with joy! Abbie awakes every morning with smiles, and those early hours with her are the sweetest part of my day. Please pray for her health, though, as these flare-ups from the allergic reaction are very challenging, happen quickly, and are limiting for her.

God is good!

Monday, August 24, 2009

Better Than A Dream

I am overdue in writing about a magical day, but I didn't want to let the story slip by without being told.

A week ago Sunday (8/16), Abbie and I, along with her nurse Leila, met my friend Nina at the ballet!

Ballet Hawaii has a 3-week summer intensive, combining local dancers with professionals from the mainland. At the end of that whirlwind 3 weeks, they stage a complete production, with this summer's offering being Peter Pan. Could be there be a more perfect first-time ballet for an adventurous girl like Abbie?

The ushers and fellow patrons were so kind, and we were easily seated and ready, complete with the light-up Tinkerbell wand Nina gave Abbie. I could not believe that Abbie was finally going to see real ballerinas, after wearing out so many DVDs watching them.

As the curtain rose to reveal an enormous, beautifully decorated stage I think the joy temporarily propelled me out of my body, to observe the whole thing from above. After a while, I noticed that Abbie, being seated at the end of the aisle, wasn't getting the best view. So, I moved her onto my lap and her experience really began.

Magical...truly, truly magical. I wanted to bottle those moments to keep forever. We were at the ballet, listening to lush, enveloping music, watching lithe, joyful bodies, and merry, rascally Lost Boys. It was a moment I envisioned the night Abbie was born -- a vision that had drifted away to the point of disintegration until Nina invited us to join her. How thankful I am for precious friends who restore lost hopes.

I was reminded that, although others may view her as limited, Abbie has a big life. During intermission, folks were filing past to go outside for refreshments. As one particular group of girls stepped by, one said, "Oh, hi Abbie!" I still don't know who she was, but my heart leapt that Abbie had a friend there. I was also reminded that we are never alone, even when we feel lonely. A gentleman approached just before the show started to let me know that he and his wife still pray for Abbie daily. Wow...how do you thank someone for that??

As Wendy and her brothers flew back through the bedroom window, I whispered in Abbie's ear, "They're HOME!" She grinned so broadly that Nina saw her dimples in the dark. Even adventurous girls realize that home is a very nice place to be!

I was still trying to process the whole event as we strolled outside to the stage door. Nina's good friend is the artistic director of the ballet, and we hoped that she would facilitate Abbie actually meeting some of the ballerinas. Since we were among the last to leave the theater there was already quite a throng gathered outside the door. But, there was Pam -- even amidst of the closing show hullabaloo -- outside looking for Abbie. As soon as she saw us she parted the crowd to usher Abbie inside. We met several of the Lost Boys, some of the fairies, and the hilarious, scene-stealing crocodile. And then, Pam escorted us onto the stage...

There she was, on the big stage, looking out at all those seats -- my amazing, brave ballerina. I could not stop the tears then.

A keepsake day, to be sure. And, a reminder that though the route of our dreams may change, they do not have to die.

Bless you, Nina, for making one of those dreams come true!

Monday, July 27, 2009

Another New Car

After the thrilling surprise of the power chair on Monday, I thought that would assuredly top the list of This Week's Highlights. Well, perhaps it's still tied for the lead, but there weren't any dull moments this week.

On Friday morning I awoke looking forward to digging into our last big box project, hoping to finally reclaim our living room from the Public Storage brown cardboard decor we had going on. Kyle awoke, with a terribly swollen throat, and changed those plans.

After seeing the doctor, we went to the lab for bloodwork. I waited just outside the lab door, by the elevator. I smiled when I saw him coming, looking rather pale. He said, "Oh, Mom, I don't feel so good" and gave me a hug. I love it when my big boys do that. Then, it became a really big hug. "Oh...he is so sweet!!!" I thought. Whoops...wait a minute, he wasn't showing me affection, he was passing out in my arms. Cold. I couldn't hold him up, but managed to break his fall to the floor. So, there he lay, completely out, right in front of the elevators. The poor folks trying to get off were quite shocked when the doors opened.

The hospital's rapid response team arrived very quickly, just as Kyle began to come around. A wheelchair ride to the ER, a wide-open IV of fluids and some steroids had Kyle feeling much better by the time we got the diagnosis: mononucleosis. Ugh. His pediatrician had suspected this, and warned that if he did have it she wouldn't clear him to play contact sports for three months, because of swelling in his spleen. There goes this year's water polo season!

He's been utterly miserable and in great pain. His throat is so swollen that eating solids is completely out, while even drinking is difficult. We would so appreciate your prayers for his comfort and healing!

On the upside, we met another of the cadre of wheelchair technician angels yesterday. Pete brought the new stroller that we had ordered and anxiously anticipated. During months of googling "reclining wheelchair" I found an amazing chair that has all the features I wanted. But there was more...it has an innovative design that may help Abbie's posture, muscle tone, and ability to work with her hands.



Here's our new "Thevo Twist"





One special feature is has is flexible lateral supports -- those black things sticking out midway up her seat. In normal wheelchairs that is exactly what they do...stick straight out to help keep the child sitting straight. But, often they end up getting is the way of the arms, and not being a good fit. These ones, while retaining some rigidity, wrap around Abbie's midsection and buckle together. What a difference this has made in keeping her back straight! And, after 5 years we finally have a head rest that works and keeps her head aligned with her body -- woo-hoo!

It reclines all the way back, and has already proven a GREAT place to change Abbie without having to transfer her. This means we can always keep her clean and comfortable no matter where we are at; important now that she has outgrown the changing stations in public restrooms.




This is what is so different about it:




The back of the chair is not solid, but is constructed of rows of these sensors. When Abbie's body moves, these respond, giving her input that helps her know where her body is in space. This specific type of input has always been very helpful to Abbie, and leads to her sitting up straighter, having more head control, and relaxing and moving more fluidly. The suspension on the stroller is also adjustable. With the pull of a pin, the shock system is locked, so that the Abbie will feel every bump and jiggle...leading to even more sensory input for her. I had high hopes for this stroller, and now, actually having it here with Abbie, it has far exceeded them.

We purchased a new car seat from the same company. It is very adjustable and supportive, but the coolest part is that it has an iPod plug at at the bottom of the seat that feeds to speakers situated within the head rest. I plugged my iPod into the seat and let Abbie listen. This is her response:






We purchased both of these items from a company called "Exomotion" www.exomotion.com. They are the only American importer for these, produced by Thomashilfen in Germany. Exomotion is located in Seattle, and I cannot say enough about their terrific customer service. If you have a child who may be in need of a new chair in the near future, I urge you to check out what they have. Getting this chair has been life-changing, and I know other wheelchair families will recognize that statement is not hyperbole.

As this week comes to a close, I just feel very, very blessed. I pray as you reflect on your life, that same sense comes over you!

Tuesday, July 21, 2009

Powering Up

A lot has happened since the last post. Our "moving without moving" project has come quite a long way, as every closet, drawer, and shelf have been emptied and sorted through, while every piece of furniture we own has been moved to make way for the painters and carpeters. In the midst of this we had a slight complication, when a minor cut on Ray's finger became infected with MRSA and his hand swelled up like a softball. Part of the effort to keep him out of the hospital required him to constantly elevate that hand. This prevented him from helping much with the house projects, but, even worse, made him the victim of 12-year-old humor.

You know the kind: slightly funny, mostly annoying, relentless. "Dad, do you have a question?" "Excuse me sir, can I help with something?" Poor Dad just wanted to bring his hand down, if for no other reason than to cover the twins' mouths! They couldn't just say it once, or even three times. Oh no, they were certain it would finally make us laugh at repetition number fifty!

Ray did manage to avoid the hospital so that we could meet Chase in Santa Clara on Thursday for his college orientation. I have not been on that campus since I graduated. It was nice then, it is beautiful now! I wanted to ask whether they accept moms for a second go 'round. It was a blessed time as we learned where, how, and with whom Chase will be spending the next four years growing into a godly man.

We arrived home on Saturday to find our anxiously awaiting princess looking beautiful. Genevieve said she was sad while we were away, but the day she knew we were coming home she jumped at every sound, even from a dead sleep, looking for us.

Today, I learned that some angels wear green and drive big vans. One is named Derrick. This particular angel, a wheelchair technician, has been conspiring with Abbie's therapists for well over a year about how to get her into a power wheel chair. Today, we were blessed with the results of their behind-the-scenes planning. I had expected a wheelchair like she has now with a motor under it, not knowing that we would be speed warping into High Tech Land.

The power chair looks NOTHING like what she has now. It sits on a base that reminds me of the scooter chairs you see seniors zipping around in, although Abbie's chair has two front wheels. We seated her in it, and she fit very well. She was then able to use the toggle switch to control the chair: elevating her seat way up in the air -- to a position that will allow us to seat her without bending over, what a blessing for our backs! She could then move it all the way back down. She also learned how to recline the chair (it went wwwaaayyyyy back) and then incline it again. It took her a little while, and a change of the type of switch, for her to really get the hang of it, but she definitely conquered the recline move by the end of therapy today! Eventually, she will be able to use the switch to drive the chair around -- although I did ask about remote control brakes!

We will be working on the switch access at OT on Wednesday, and then perhaps we can bring the chair home. I am stunned by how remarkable a piece of equipment it is, and so overwhelmed that all of this planning went on without my even knowing it. Much of a special needs mom's mental energy goes to figuring out what her child needs and how to get it. To have this process go on without me, and result in such an amazing chair....I cannot put into words what this means to me. More importantly, I cannot imagine what having some control is going to mean to Miss Abbie.

I got a huge grin from her when I mentioned, "Abbie, you are going to be able to drive before your brothers are!!!" So, consider that fair warning...if you visit Kahala Mall or the surrounding neighborhood, be on the look out for a girl in pigtails speeding by in black blur. Once she gets going, I'm not sure there will be any slowing her down....in many, many ways!

Friday, July 10, 2009

Gimme Five (Times Eleven)

Wow, I didn't realize it'd been so long since the last post. This summer schedule has been kicking my tail, and now we are in the midst of painting the whole interior of the house and moving rooms around -- a little extra chaos is always fun.

Abbie has been doing magnificently. During PT on Monday we sat her on a chair because we wanted to work on knee bending. She was doing it so well herself, that we decided to have some fun with her arms and hands. An easel was set on a desk in front of her, upon which we sprayed globs of the foamy soap she so loves to play with. Now understanding this was her chance to make a big mess, Abbie began moving her arms toward the middle on her own, something she's never done...back and forth she went. We would support her elbows to help with the weight of her arms, but she knew just what to do. Seeing new things makes therapy sessions fun!

On Wednesday we went to se a different therapist, who asked what we'd worked on in Monday's session. Abbie, laying on the floor, lifted her arms and moved them toward the middle. Wow! Working against gravity AND answering a question. We were quite impressed, but that was just her opening act. Soon after, still lying on her back, she started bending her knees and lifting her legs. She's never done it that way -- she would only lift a straight leg. Right leg, left leg, right leg, left leg...we were giggling by this point. We then sat her in a chair, so she could practice good knee-bending, as well as moving her leg to kick a ball. She worked hard for a solid 30 minutes, which prompted her nurse to say, "Abbie, I don't know what's changed, but it's all clicking inside you now...you know how to move your body." Another really fun day of therapy.

We recently took Abbie to one of RJ's allstar baseball games. It was more than a little hot that day, which I remedied by taking wet cloths in a cooler with an icepack, rotating them on her head to cool her. It's always a hard call. We so much desire to have her with us everywhere we go, but the reality is that some places, some events are just not good for her. This trip was worth it however, before the game even started.

We were sitting under a shade tent, up a little embankment behind our boys' dugout. I had just begun her feeding shortly before the game started, when Coach John asked if the team could come see Abbie before the game. I dumped that tube of food back into the bottle so quickly sparks may have flown. He coached the twins the summer Abbie got hurt, so the tender spot in his heart for her rivals the Pacific.

The players lined up in front of her wheel chair, and took turns giving her a high five. I spoke for her as I raised her hand..."Good luck Maka...good luck Jarrod...good luck Nohili....Noah...Eli..RJ...Austin..Kalehua.." At the end I couldn't even say the names because I was tearing up. For her presence to be recognized -- and valued -- by the team overwhelmed me with gratitude. Knowing she is such a precious gift gets us through even the hardest of days, having others see it too enriches even the brightest ones.

Friday, June 19, 2009

EEG

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

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

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

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

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

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

To quote a dear friend: "Onward and Upward!!"

Friday, June 12, 2009

Two Thumbs Way "UP"!

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

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

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

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

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

Saturday, June 06, 2009

Link for the news story

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

Here is the link to see the video:

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

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

Hope you are having a great weekend!

Friday, June 05, 2009

Abbie on the News Friday Evening

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

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

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

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

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

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