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 easy for her".

Abbie was continuing to choose from three options, which required her to use her body very precisely. Hmmmm, we 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:


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 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!