A Bigger Balloon

It’s taken me a few days to catch my breath enough to write this update.  I don’t know what it says about me, or where we’re at in this journey, that I question therapists expecting to have my balloon popped.  I always have a twinge of fear that my expectations of Abbie may be oversized, and my observations of her abilities are skewed by love and hope.

Last Wednesday we were able to visit her Augmentative Communication speech therapist for the first time in a very long while.  Lisa is the one who helps us with Abbie’s switches — she’s the one who has given Abbie a voice.

I brought her up to speed on what Abbie is able to do now — most importantly, “two-step scanning”, using two switches to make choices.  In my mind, this brought her very close to being ready for a dynamic communication device — a computer whose display moves from one screen to the next when she makes choices.  Not only did the balloon not go “pop”, but it became hyper-inflated!

Lisa told me that another family we know, whose daughter uses a dynamic device, flew up to San Diego a while back to have a wheelchair seat custom-molded for their daughter.  The chair is now ready, so instead of flying the whole family back to California, they are flying the wheelchair guy to Hawaii.  He would like to train the staff while he is here, so is looking for a couple of other kids to work with.

Oooo-oooh — pick me, pick me!!

It looks like we will be able to see him, but get this — the chair he has put together for Shari is a power chair, and she will be able to use the same device to control her chair and her communication device!  Oh. My. Goodness.  This thought had never occurred to me.  I had concerns about how she would be able to move from one joystick for driving to another for communicating, but my mind had never wandered to such an elegant solution.

So, the possibility is there, and her speech therapist thinks that from a control-device access point of view, Abbie is ready (for the communication device AND the chair)…but what would her other therapists say?

The next day we went to OT, and as Providence would have it, Eydie had planned to let Abbie practice in the power chair again.

We got her all set up, and she started backing up again.  She hit the desk behind her, and then apparently decided that actually going somewhere might be more fun than just crashing into things.  She started moving forward…toward the door.  We all looked at each other, and said aloud “Should we open the door?”

Duh.  Of course we opened the door.

We helped with the tight turns, and then…..there she went.  Rolling down the hall, driving herself.

I saw other kids in the hallway stop what they were doing to watch Abbie roll by.  My soul rejoiced as they saw HER, and as they processed that she was doing this herself, so she had to be smart.

When we made it back to the room, Eydie looked at me and said, “I am calling today to put a stop to the manual wheelchair order!”  We have been waiting for this chair for 5 months now, and I have been getting a little more than aggravated at the delay.   Ha ha ha — always for a reason.  A wonderful, beautiful reason.

There is much to consider as we pursue this new possibility.  Would you pray for wisdom for us, and for the perfect, perfect chair and communication system for us.  Each chair has to last 5 years, so we must do our best to look into the future and determine what will best meet Abbie’s needs at age 14. (If she still needs a wheelchair by then.)

If we can make this power chair/communication device combo happen for her, it will truly change Abbie’s life.  I can’t believe she’s here.  She works so hard every day, yet we know that it is God’s grace that has lifted us to this broad place – and we rejoice with (off-key) singing!

New Information, New Accomplishments

As usual, when I’ve let time slip by between  updates, I need to start in the present and then see what I can drag out of my shadowy memory. So, let’s start with today…

We had an appointment with an audiologist, because at a check-up with Abbie’s ENT last week, lots of fluid was found in her ears.  Dr. T. wanted to do the audiological testing before determining whether to place PE tubes in Abbie’s ears.

When the audiologist called yesterday to confirm the appointment and talk specifics about the testing, she mentioned “Remember when we last did the ABR testing (2004 or 05), it was determined that Abbie has Auditory Neuropathic Spectrum Disorder (ANSD)?’

Ummmm….no, I didn’t recall anything being wrong with her auditory nerve, and for years have found comfort in at least one of her senses being intact.  Ugh.  This unexpected news pushed me further into a pit I’d been slowly sinking into.  The rest of the day was spent researching this relatively new diagnosis, which was formalized in 2008, I believe, at a meeting in Como, Italy.  Thoughts of that beautiful place were momentarily distracting, but my heart was still pierced.

My research didn’t show much, as like many “spectrum disorders”, information is broad and not particularly useful.  This morning, however the audiologist said she needed to perform certain tests to ensure the ANSP was not progressing.

What??  This whatever-it-is can be progressive leading to profound deafness???

First came the tympanogram which showed that her right ear is completely full of fluid, while her left is is also affected, but not as completely.

She then tested the left ear, and was able to get the results we were hoping for, despite the fluid.  Abbie can hear — as we assumed she could.  But, all this fluid does explain why sometimes it seems as if she is distracted during school, working on the computer, or interacting with other people.  We all sound like Charlie Brown’s teacher to her!

I scheduled the PE tube surgery, along with audiological testing that is done under sedation, for the early morning of November 11.  I fly out that night for a special retreat in Washington State — only for moms of near-drowning survivors who are coming from across the country.  (Woo-hoo!!!)  I am confident that all will go smoothly, and that, in fact, Abbie will feel a lot better once it is over and all that pressure is relieved.

That whole ear situation leads me to an example of Abbie’s improving communication skills.  The day after we visited her ENT, she slept a lot in the morning.  Around 3:30pm Genevieve came into the kitchen and said, “I need you right now.”  This is rare, and I was immediately concerned.

Abbie was laying on the massage table bawling her eyes out.  She never does this unless she is injured — as in broken femurs or torn ligaments.  I knew that she had not done anything that day that would have exposed her to the risk of injury, so I was stumped.

I said to Genevieve, “Tell me exactly what happened.”

As Abbie continued to wail, Genevieve told me that she had carried Abbie from her bed to the massage table with no complaints.  Then, she picked her up and took one step toward the hyperbaric chamber, at which point the crying commenced.

Aha!  Given what Dr. T. had seen in her ears the day prior, I had an idea what was causing the fit.

“Abbie, does diving hurt your ears?”

More crying, but blinking yes in response as well.  Then, more crying.

“OK, OK…we are not going to dive.  You are not going to dive today.  I will rock you instead.  Let’s go to the rocking chair instead.”  I had to keep reassuring her until she could hear me through her distress.  Once she understood, the crying ceased immediately.

I smiled as I rocked her.  Kissing her tear-stained cheeks I said, “Abbie you knew what was going to happen — you knew you were about to go diving, and you knew it would hurt and you found a way to tell us ‘NO!’  That is called communication.  I am so proud of you!”

Out came her dimple.  I enjoyed that while also relishing the realization that she was able to anticipate and communicate.  No more diving for now.   Lots more rocking.

The second big thing is how she is doing with her communication switch.  As I mentioned before, she is now using a joystick with her right hand.  Because she likes to roll her hand and arm to the outside, we have been using flexible straps to help her keep her hand on the switch.  Her school OT wanted to write an IEP goal that Abbie would hold her hand and arm in a neutral position for five minutes.  I replied that we needed to start measuring in seconds, not minutes.

Silly Mom  (That is my new name, for as often as I earn the moniker)

When the school therapists were here, I placed the joystick in her hand, and went to look for the straps.  When I came back with them, she was holding on and using the switch just fine by herself.  So, I set the straps down and watched.

Fifteen minutes.  All by herself.

And then – she got tired and let her arm roll to the outside, which pulled her hand off the switch.  We were all so excited about how long she had held that position, and were talking about what to do next that we didn’t see her roll her arm back over and place her hand back on the joystick.  All by herself.  I cannot tell you how momentous that little movement was.

She continues to enjoy working on the computer, especially with a program called “Choose and Tell”, in which she gets to choose the hero of the story, the mode of transportation, the destination, and then the paths to follow and doors to open.  She is exceptionally picky about the doors she chooses, because one hides a treasure and one hides a monster.  She remembers which one is which after she’s built a certain story once or twice, so always wants to make sure she finds the treasure.

I watch her, and realize that I have already found mine.