Wednesday, April 30, 2014

New Power Chair - Permobil K300, C300 ; and a test walk in the Upsee!

This cool kid is so very excited to have his new power chair! For the first almost 2 weeks he wanted me right by him and to have my hand over his then all of the sudden he had it and to say he was off is an understatement! Now he'll crank up the speed, yell, "Ride the Wind Bullseye!" and then look out! If I try to put my hand on the joystick now he pushes me away!

It was about a year ago that we requested an equipment evaluation at Perlman Center. After waiting for that appointment and then going through many appeals of the denial by our insurance company, we finally got his chair! He was excited from the beginning. Here he is getting seated in it for the first time. At the end he says, "It's my power chair!"

Here's his first test drive:

Then today Gus got to try out the Upsee at Perlman Center. Ours is supposed to get shipped out to us from the UK sometime the week of May 19 and I'm even more excited about it now that I see how well Gus does in it!

From our family to yours, we hope you had a blessed and wonderful Easter!

Sunday, April 20, 2014

Conversations with Gus

  Mommy: "Are you all done?"
Gus: "No, not yet."
  Mommy: "How about now?"
Gus: "No, silly!"
  Mommy: "How about now?"
Gus: Giggles
  Mommy: "How about NOW?"
Gus: Sternly "Mommy, that's too much."

Gus: Bored and restless, doesn't want to wait in line. "Can we go now?"
"Is it our turn yet?"
  Mommy: "Would you like to turn around and meet the girls behind you?"
Gus: "GIRLS?!"

Mommy and Mama pick up Aunt Gaga from work to come with us
Gus: "I love Aunt Gaga! Is she coming with us?"
  Mommy: "Yes"
Aunt Gaga gets in van.
Gus: "Hi Aunt Gaga!"
  Aunt Gaga: "Hi Gus"
Gus: "Aunt Gaga?"
  Aunt Gaga: "Yes, Gus?"
Gus: "How is your work?"
  Aunt Gaga: "It was pretty good today, thank you, Gus."
Gus: "Oh good!"

Mommy lays Gus down to sleep.
Gus: "Mommy, where's my music?"
  Mommy: "Oh, I forgot to turn it on."
Gus: "You can turn it on on your computer."
  Mommy: "I was going to use your iPad."
Gus: "Where is my iPad?"
  Mommy: "Up on the dresser." Mommy goes to get the iPad and opens it up to find his nighttime                      playlist. Usually, Mommy asks Gus at this point which song on his playlist he'd like to start                 with but...
Gus: "Mommy, you can pick tonight."
  Mommy: Selects Gus's most oft chosen first song and it starts to play
Gus: "Frozen! Good choice, Mommy! You're a good girl!"

Mommy and Mama: Never taking a word their boy speaks, and speaks so clearly and eloquently at that, for granted! "Thank you God for our funny, precious, funny, thoughtful, talkative boy!"

Lights fade

Saturday, April 19, 2014

Our journey taking Gus to pray the steps and TV coverage

We were blessed with the opportunity to share Praying the Steps with Gus yesterday and it went well. The day and the weather couldn't have been more gorgeous. And our company was fabulous - our friend Phyllis, Aunt Gaga aka Cate, and Cierra, an intern from WCPO who tirelessly chronicled our whole journey. We were amazed what she was able to do with the random blubberings we gave her on film to put together wonderful representations of our story.

Supporting him to take some steps up the stairs there were a few times when I really felt him find his own balance and put some power in to his standing and stepping! I believe our boy will get there and will take steps on his own someday.

Thank you so much to all of you who took time out yesterday to add Gus to your prayers! Knowing you were sending so much love and support gave us the strength to make our pilgrimage and I can't wait to someday share the news of him walking!

Here is the TV footage. Cierra came out to our home Thursday and then spent 3+ hours with us on Friday. Thank you, Cierra and WCPO!

I can't seem to find the footage from the day they came to the house so maybe they put this one in its place.

Monday, April 7, 2014

Prayer Campaign for Gus to Walk

I liked the idea of "Praying the Steps" ever since I heard about the century+ old tradition of doing so in Cincinnati (history here) and the times I've been able to do it only strengthened my resolve to do everything to make time for it annually on Good Friday. Good Friday has always been a time of deep reflection for me. The mystery of the crucifixion, the tremendous sacrifice by Jesus and our Heavenly Father, the heartache of Mary, the thought of how cruel people can be to one another but how selfless the response can be - these things and more give me much to consider and pray about in my own life.

And so I've been planning to take the day off work on Good Friday this year for some time. It was only in the recent past that I thought how much it pains me to not share this tradition with Gus when I realized, "Why can't I?" Ok, yes, it's highly impractical to consider bouncing him up 96 steps in a huge crowd in his wheelchair and to carry a 40+ lb boy whose cerebral palsy makes it difficult to carry him up and down even a few stairs will be no small feat but it's not impossible. What better day to take this on than when we remember how Jesus willingly showed up, allowed himself to be mocked and whipped, and carried a huge cross up a hill through the crowds only to die on a cross to redeem us all? So I will carry my sweet boy up the steps in prayer to the top where we will pause to reflect on the life size crucifix as a reminder that with God all things are possible. To this God in whom all things are possible, I will bare my deep seated desire for my child to walk someday, if it be His will.

When Gus's PVL (the diagnosis that indicates his brain damage) was first discovered, I distinctly recall that my biggest expression of sorrow was, "Oh my goodness, my precious son might never walk!" As we go to take delivery of his power wheelchair on this Friday, I want to be clear that the power chair in no way is the waving of a white flag or any indication of acquiescence to confine him to a chair for the rest of his life. We specifically fought for a power chair so that he can devote his limited physical energies towards NATURAL MOVEMENT and NOT wear himself out by attempting to manually wheel himself in a chair! As excited as I am about him getting his own power chair, I find it has still stirred some very deep emotions in me around him walking. That, combined with a whole flurry of other happenings has produced a huge churn inside me over his ambulation. "They" talk about the brain forming 9X% of its neural pathways by age 3, an age Gus has now surpassed. Our CP doc said that it's usually children who learn to get from prone in to sitting on their own by age 4 who will learn to walk someday - this is a milestone we have yet to achieve while age 4 is looming large. I went to great lengths today to make our purchase of the Upsee, a device I hope will help encourage Gus to want to learn to walk on his own. All of these things plus the fact that Maria finally seems to be out of immediate mortal danger from her 15 months of horrible health have all produced the confluence of circumstances that have sent my brain working on the task of getting Gus walking.

(Side note - Do people take their first steps well past Gus's age? Absolutely! You will hear the occasional story like that of the high school student who made it his mission to be able to walk by the time he graduated so he could cross the stage to grasp his diploma triumphantly. Yet admittedly I feel with all of the time and money we have invested in to equipment, traditional and non traditional therapies, countless hours of working with Gus, that he should make it soon if he's going to make it. To say I feel the clock ticking is an understatement.)

That is where this idea hatched and where you come in. We have plans to go full bore in several areas towards the goals of getting Gus from prone to sitting on his own, to get him crawling, and to ultimately get him up and walking. Would you please join us in adding your prayerful intentions, especially on Good Friday at 3 PM as we mark the time of Jesus's death on the cross, to our own beseeching chorus to God that Gus will learn to walk?

If you're local and so inclined, we would welcome you to join us in our journey to Pray the Steps as well. We hope to arrive at the Saint Gregory Street base of the steps in Mt Adams around 11 AM to get in line. (We are not doing the steps all the way from the River level.)

Would you please RSVP on our EventBrite site, ?