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.

Race for Hope

On Sunday we joined 11,000 others, including a team of Clay's doctors from Children's Hospital, to run the Race for Hope 5k downtown.  The event raised over $2 million dollars for brain tumor research and there were 350 survivors participating, including Clay.  Grace and I ran the 5k while the boys walked. As Clay crossed the finish line they announced his name and time on the loudspeaker.  It was great to see a few friends participating in the race, including Ms. Foreman, Clay's special education coordinator at school. Here is the race's website if you want to see more information about the event or a few photos.

  http://www.braintumorcommunity.org/site/PageServer?pagename=RFH_DC_Homepage

April 18

Clay had another MRI on Friday and we went over the results yesterday. Although the radiologists are calling the report "stable" I saw the scan myself and it looks much better than stable to me (and to his doctors). The white spots (showing uptake of the dye) are smaller (or gone in some spots), and the tumor in his brain is skinnier and is leaving more areas of normal brain tissue around it.  We compared this latest scan to October and also to February, and there is consistent shrinkage and decreasing enhancement.  So we now go to MRIs every 3 months instead of two.   Clay continues to feel great and we notice a real difference in his interest in school and ability to focus.  We also had an appointment with the neuro-opthamologist. We were hoping to get some indication that the optic nerve is transmitting light, but that does not seem to be the case.  We are not giving up hope here, and neither is Clay.  If you are praying for Clay, please pray that he gets restoration of his vision.

Last Saturday night JD and I took Clay to a healing mass.  It was a wonderful experience, and it was very different from most typical Catholic services in that there was a band playing, people singing, arms and tambourines waving.  After the Mass, people got up to give testimonials of their healing.  After this, the Priest attended to anyone who wished to have a laying of the hands.  We waited for about an hour to have the Priest come attend to Clay. 

On our way out, Clay was walking between JD and me and he said to us, "Has your heart ever hurt so much it felt like it was going to burst?"
 I said, "I'm not sure, exactly, what do you mean?"
"Well, mine feels like that, like it is exploding inside, and it is going to break into two pieces, split right down the middle."
 I looked over at JD, wondering if Clay was feeling sick or where this was going. 
"Why does it feel that way Clay, what do you think is wrong?" I asked. 
"It is going to explode because I am just so happy," he said, "because I have Daddy and I have you in my life." 
We feel exactly the same way.

Monthly check in

Yesterday Clay and I had appointments with his oncology team as well as his physical therapist.  He received medication for the next month, which is Clay's 6 month on this trial.  Physically he is doing great - he has regained most of his facial movements and he has gained weight and height in the past month.  The doctors are working on approval to get this medication into a Phase II clinical trial.  This is a very positive note and means that they are seeing enough response with no debilitating side effects from the 12 children currently in the Phase I trial (Clay being one of them). 

Clay is adjusting to a longer day at school.  He is doing very well with his new Braille teacher who came to Arlington after teaching for years in a school for the deaf and blind.  She told me the hour she spends with Clay each day is her favorite hour of the day.  Clay sent me his first e-mail from school the other day: "hi mom this is your buddy. see you soon."  He has an iPad, a laptop, and a brailler at school and he is learning to use all of them.  Braille is important so he can learn to read and write; but keyboarding on a computer is going to be the easiest way for him to communicate with sighted-teachers and pretty much everyone else he needs to communicate with. 

The best thing about today is that Clay is feeling so well, and the worst thing is that he cannot see.  We are praying for a cure, for a miracle, for an intercession from God to restore Clay's vision.  I know it can happen and I am hopeful it will happen for Clay.  Each day brings challenges, but also laughter and happiness.  The other day I came upon Clay in the kitchen where he was petting one of his small stuffed animals, and saying "I miss seeing you" to it.  Tears of sadness came to my eyes.  Then, later in the day, we were in my bedroom when Grace came running in.  She jammed her toe on the door frame, and started crying.  Finally, through sobs, she said "my little toe, I jammed my toe..." to which Clay replied, "Oh, I know Grace, that hurts so much, I do that all the time now!"  We all laughed, most of all Clay.   His positive spirit continues to lift us all.  It will be four years on Easter Saturday that Clay has been battling this tumor. 

"Survival activates miracles when a person relies on the graces of hope and faith." - Caroline Myss