MRI Update

On Friday, Clay had his 4th MRI since starting this clinical trial in the Fall.  Yesterday the three of us went downtown for Clay's monthly appointment and to review the results.  We pulled up the scans from October 2012 and from Friday, so JD could see the changes in one clear comparison. They are truly amazing, and a beautiful thing to see. No white spots (indicating tumor spread) no white enhancement (indicating tumor cell activation) no bulging tumor crowding out brain and fluid.  More black (fluid). More space -- literally, in Clay's brain; and figuratively -- for us all to breathe.  After seeing the smile on his face, Clay's doctor said to me, "This is why I get out of bed in the morning."  Amen to that.

"Marty" is now a baritone?

Clay continues to enjoy working with Marty the SMART brailler.  All visitors get a preview and it is

funny to see how everyone enjoys typing out their name or some funny sentence.  (At left is Clay showing the brailler to his K teacher.)  It must be the spy-like code of typing in braille that keeps everyone interested.  As I continue with the course "Introduction to Braille" that I am taking, I learn new things that help me understand the braille code and how the dots make "sense."  For example, the first 10 letters of the alphabet in braille (a-j) are the same as the next 10 letters (i.e., a is the same as k), minus a dot in the 3rd cell.  The next 5 letters are the same as the last 10 corresponding letters, minus another dot in the 6th cell.  Of course, knowing this does not make it any easier to remember the letters, or to read them using your hands!  Clay helped me with my last lesson, "Using a Stylus and Slate."  Knowing how to use a stylus and a slate is useful for taking notes or for when there is no brailler around.  Here is the amazing thing--you must type the "mirror image" of the braille letter when using a slate & stylus, because after you create your note you flip it around to read it.  So once you have memorized the letter to use a braillewriter, you must "flip" it to use a slate.  Are you still with me?  I would make a terrible spy... 

Tonight when I was cooking dinner, Clay brought over Marty and put it on the stool he usually stands on when he helps me cook.  He sat on the floor at my feet and got to work using a few new features we discovered about the SMART brailler.  First, we changed MARTYs voice.  Trying out the different voices drove our dog Pearl crazy. There are two female voices and one male voice (Ryan).  We settled on Ryan.  Then, we discovered an "app" program for quizzing the braille user on letters and words.  This was much more fun for Clay to do than to have me standing there telling him what to type.  And, he was very pleased with the "good work" response after each correct answer and then at the end the cheering that came with his 100% score.  This is a great tool for teaching him to spell and braille at the same time.

Clay has camp at his elementary school for the next two weeks, and he will bring along MARTY for his braille lessons.  Then the brailler will be off to the sixth, and final child in the testing program. 

 http://www.wonderbaby.org/articles/backpacking-smart-brailler-event

Marty Goes to School

Clay brought Marty to school for the last two days. He spent some time showing his math teacher what he was able to do, and then all of the TVIs (teachers for visually impaired) from our county came to see Marty and have Clay give them a demonstration! Of course they all all hoping Marty gets to stay here for Clay's second grade. It is a perfect time for Clay to be using this brailler since he is learning to read and learning to braille right now.  This brailler makes both tasks easier by providing him with immediate verbal feedback.  This allows Clay to work on his own, without needing a braille teacher to check his work. That is a huge benefit at this particular time in his development.  Here he is working with his math teacher doing some simple equations (each of the first 10 letters in braille are also the first ten numerals) and his name:

Grace also continues to use the SMART brailler. She stayed up late to type him a note to sneak in his lunchbox so he could read it with his teachers on the last day.  Marty is enough like a computer that it is fun for sighted kids as well.

To learn more about the brailler read here:  http://www.wonderbaby.org/news/perkins-unveils-smart-brailler

Marty the SMART Brailler Arrives!

Clay has been watching the mail very closely for the past few days and he was not disappointed.  First he received a box with a Perkins backpack, and the next day he received the SMART brailler.  The backpack arrived, full of fun treats, on Tuesday.  Here is a shot of Clay getting his hands into the backpack.  It was filled with books, a jump-drive, and a few cool "friends" to hang around with while doing braille...

With the countdown to summer vacation on, he was thrilled to receive the brailler on Wednesday afternoon so he could work with it in school for a few days.  It is much lighter than the old-style brailler he works with at school, but still heavy for a 7 year old.  However, he managed without toppling over.

As soon as we got it out of the box we had it on the kitchen table.  After listening to about half of the 8 minute audio tour, he couldn't wait any longer and he just pushed the "off" button for the tour and started typing.  I was amazed to see him type his entire name without one error.  Of course I only knew there were no errors because the brailler announces each letter as you type, and then at the end of the word it speaks the whole word.  There are lots of choices to turn on or off the voice, to select the voice, to do contracted or non-contracted braille, to save your document on a flash drive, to change user profiles, and to review your document.  Very cool!  I immediately see the benefit of using this in a mainstream classroom environment like ours where the teacher does not read braille.  I was impressed to see Clay hit the button to show me contracted braille (like shorthand), and was happy with how proud he was with the verbal confirmation of his correct work.

Today Grace got involved.  She couldn't stand to watch him typing, so as soon as he took a break she took over and very quickly typed everyone's name in the family.  The best part as far as she could tell? "Mom, they pronounce our name right! Nobody ever does that!"  Here is a shot of her enjoying the secret-code concept of braille.  She does not know any of the braille alphabet, but this inspired her to learn it (with help of a braille alphabet sheet next to her) very quickly.

Two days in, we give it two thumbs up.  Clay has already asked if we can keep it for longer than our 2 weeks of the program. How great is that?

We will post back in a few more days.

To learn more about Marty you can go here: http://www.perkins.org/smartbrailler/
To follow the route of Marty, you can go here: http://www.wonderbaby.org/articles/backpacking-smart-brailler-event

Lunachick Victory...and Marty

Grace's softball team won the playoff game yesterday after a nail-biting close game with a final score of 7-5. This season has been filled with rainy days and lots of cancellations, so we were glad that both Saturday and Sunday's games got played.  Grace has really improved this season and she had great teammates and great coaches, so it was a wonderful way to end the season...with 2 trophies--one for the division league first place and one for the playoff win.  Here is a photo- Grace is bottom row one  in from left.

Now for Marty.  Clay was selected as one of six children in the U.S. to test out a new Perkins SMART Brailler (called Marty) in advance of its release for sale.  Four children have already had Marty in their homes for 2 weeks each, and Marty is currently on his way to us.  Currently, braillers are very much like typewriters, with six keys to make the dots for the six cell braille letters.  This new Smart Brailler has audio to provide immediate feedback, and lots of other cool features that should make learning braille much easier.  This link will tell you a bit more about the program, and you can also read about the other four families that have already tested out the brailler.  At the end of the program, readers vote for one of the children to keep the brailler.

 http://www.wonderbaby.org/articles/backpacking-smart-brailler-event

I have just started an "Introduction to braille" class myself offered by the Hadley School, but I am only 1 lesson in.  So hopefully this will speed me along, as well as be a fun project for Clay and the rest of us.  I will be posting about our time with Marty so stay tuned...and if anyone wants to come by and see the brailler let me know.  

June 14

Thank you to so many friends and family who included prayers for Clay in their Sunday.  Thank you to everyone who has included Clay in prayer groups and prayer chains, masses dedicated to Clay, special prayers in baptisms, communions, and many other times that were supposed to be just about someone else's special day.  Clay has touched so many people in his short life, and hearing these stories reinforces that we are not in this alone.   One of his teachers wrote in a note to me recently, "Being with Clay makes my heart smile."

The service on Sunday was easier than I had expected because as soon as they signed us in they told us that children get prayed upon first.  So after about an hour of listening to a spiritual talk and hearing stories of healing, we were led to the front of the room and Clay was third or fourth in line among other families bringing children for healing. 

So now we wait, and we pray that we start to see positive changes.  In Clay's monthly appointment Tuesday his doctors said he is looking fantastic.  His facial palsy has almost completely disappeared.  One funny story: we have been noticing that Clay's hair is getting lighter.  Grace noticed it first, and then other people started commenting on this to me.  He had lighter hair as a baby, so I just figured it was reverting back to blonde.  Anyway, one of the doctor's mentioned it also this week, and it turns out that the clinical study nurse has noticed it with one or two other patients, so going blonde is now classified as a "side effect" of the medication.  I am getting my prescription filled tomorrow!

Special prayer request- for Sunday (not Saturday!)

I am writing today to ask for your prayers for Clay's health and specifically for the return of his vision. Please pray for him NEXT SUNDAY, June 9, in the morning.  We are taking him to a special healing mass with a doctor who has healed many of his patients and those attending his masses.  This will be a 4-hour service, so please also pray for Grace's patience (just joking about this one).  I was led to this doctor by an amazing book that details his relationship with God and his healing ministry that arose from his experiences curing some of his patients, and I feel like we need to bring Clay to him to experience this ourselves.  I am certain that God is evident in many people -- and in some, even more so-- and I am hoping to find that presence for Clay next weekend.  If you are in any prayer chains, please pass this prayer request on.  I have heard that the power of prayer is compounded when people pray at a specific time for a specific petition, and so that is why I am asking specifically for your prayers for Clay next Sunday beginning at 10 am.

We enjoyed a happy month of May and a wonderful  Memorial Day weekend.  Friends invited us out to their farm in Virginia, and the kids had a wonderful time making friends and exploring the beautiful property.  We attended a Nationals ballgame with an exciting inning where the Nats scored 5 runs. Finally, the pool opened and the kids enjoyed the first outdoor swim of the season (we sat nearby with jackets on). Clay has been feeling well and doing well in school.  He attended a class trip to the National Zoo, and he has been walking home from school one day each week with either me or his O&M teacher.  He is on month 8 of the trial and the doctors continue to be very pleased.  For this we count our blessings.

Finally, a little housekeeping-- I have had to turn off the comment feature for non-registered users of this blog.  Unfortunately, some people have started posting their business links or worse (far worse...) in the comment section.  Most of you e-mail JD or me your comments, but others leave comments here, so I did not want to turn it off completely.  So please keep commenting, but if you are not registered you will need to do so first.  Hopefully that will keep the "anonymous" posters away.

Thank you in advance for your prayers for Clay next weekend.