Wednesday, March 19, 2008

Therapy laughter

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

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

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

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

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

Monday, March 03, 2008

The Call and Some Answers

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

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

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

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

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

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

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

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

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

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

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

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

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