Rejecting kidney

The news for Maria here isn’t good. Bottom line – she’s in rejection.

Let’s talk about types of rejection first. There is cellular rejection and antibody rejection. Cellular rejection is somewhat common and is the type that Maria had a couple times within the first 6 mos of her transplant back in 2003. The other type is antibody rejection and that’s the big bad boy who wipes out transplanted kidneys, though both types can end a successful transplant.

Based on the biopsy results, Maria is definitely in a cellular rejection. This one they are thinking is at least type 2A, whereas her previous rejections were 1A. The doctor says that is quite a bit more serious.

Possible double whammy alert – There is a “smoking gun” that this could also be antibody rejection. When they tested her antibodies in 2012 they were fine and this time around they are sky high. The biopsy won’t tell its tale on antibody rejection until tomorrow.

For now, they are treating the cellular rejection. That involves IV meds, thymoglobulin, which can happen inpatient and/or outpatient.  They pair this with solu-medrol.

If there is also antibody rejection, then the treatment is more involved. They have to do plasmapheresis to do something with the antibodies. It works similarly to dialysis. Maria has a working shunt but has never had it accessed for dialysis so there is some anxiety for that.

Whether or not the kidney can be saved, the probability of saving it, and the exact treatments are all up in the air for now and I’ll give more details as they unfold.

What we do know is that Maria is hospitalized through Monday at a minimum. Even if she gets out of the hospital Monday or soon thereafter, she will have a slew of outpatient appointments and treatments for a minimum of weeks.

This throws us back to that vulnerable place where we can’t do it all alone. I don’t know exactly what we need or when but I can tell you we will need plenty!

Gus starts back with conductive ed on Monday. That’s getting him to Covington 5 days a week from 9 AM to 2:30 and back home again.

I have no idea what shape Maria will be in to drive or not but she will need to make frequent trips to Christ Hospital for her outpatient stuff. We went down to 1 vehicle to afford the wheelchair conversion so if someone else takes Gus and our van to school, Maria doesn’t have transportation even if she can drive.

Problems for another day….

We appreciate the blessing of you all, our family and friends, more than we can say! Please keep praying! 

Botox From Maria's Perspective

As a child Gus's age, I was very ill. Many nights were spent in hospitals with high fevers, infections and kidney disorders that the physicians just couldn't figure out. Tests upon more tests in facilities that were not meant for children but because of the insurance that my family had, were the places that I had to be treated. I was held down and stuck with needles. Often more than 5 times because my veins were so bad. I was allergic to almost everything that they gave me and so vomiting became a way of life. No one at the time thought a child should have procedures or tests explained to them and my parents did not even understand what was being done to me so I was left with out any information. The memories of all this have left me deeply scarred. So when Gus was diagnosed with PVL and CP I knew what lay ahead for him.

From his birth we have always tried to do what is best for him. We have tried many therapies and researched many more. When Botox was mentioned, I was very apprehensive. No way am I holding my kid down and letting someone stick needles in him, even if it is the best thing for him. I am not strong enough. But as the years and Gus's CP have progressed, we researched the Botox therapy and decided that is was Gus's best chance to reach his potential.

I knew what was going to happen yesterday. I was assured by other parents, therapists and doctors that the procedure would go quickly and that the numbing cream plus the cold spray would lessen the burn of the injections. For those of you that don't know, inter-muscular injections usually contain HCL to break down the tissue enough to allow the medicine to work. HCL is Hydro Chloric Acid. It hurts!

I was torn as soon as the appointment was made. I knew I could not hold him down. I didn't know if I could be in the room with out getting upset. In January when Gus had to be admitted to the hospital, I could not be in the room when he had his IV put in. I got upset. I made his experience mine and could not let that happen in front of him so I left the room and Christi stayed. I was a coward.

So yesterday I was determined to not leave the room. I could not hold him down but I would stay and try to provide some kind of comfort or at least try to make sure things went as smoothly as possible. The doctor did try to explain what was happening while she did the injections. Other hospital staff was there to assist Christi in trying to provide a distraction. But nothing distracts you from that kind of pain. My son cried. He cried out, "Mommy!". And in that, "Mommy!", I heard, "Why is this happening to me? Why are you letting them hurt me? Why are YOU hurting me? Help me! Help me!". The procedure took less that 10 minutes but seemed to last forever. I swallowed the acid that boiled up from my stomach and did not shed a tear. Christi held him and his tears lasted only a minute. I told him he was brave and that it was over (for now). The  doctor spoke to us gently and said this was the best way.  I believe her but it comes at a high cost.

My son learned that I would allow him to be hurt. I do not know that he understands that it was for a good reason, no matter how many times it is explained. As an adult, I understand now how some things are necessary but even with that perspective,  I know it is an experience that will shape him. He has already asked for the doctor's name and how to spell it. He is preparing for the next time all ready.

Yesterday, I laid an awfully heavy burden on my son. Endure a painful procedure so that you may not have to have your hips pop out of socket, you can sit up, stand and maybe even walk. It is a horrible price to be paid by a three-year old. I wish I could pay it for him but I cannot.

We have seen little signs that the Botox is working. He seems more flexible and less spastic. I still ask myself, "Is it worth it?". I hope it is.

Botox was the worst thing I've ever seen happen to my kid!

Botox was the worst thing I've ever seen happen to my kid!

So, we went for Gus’s first round of Botox yesterday. (Don’t know why and how Botox benefits kids with CP? Article, though 10 years old, is still relevant, click here.)

Somehow I thought because we applied a numbing topical cream and left it on for over an hour, because we brought some really fun and exciting distractions for Gus, and because we had Child Life come in and be involved, that there would only be minimal pain and we could keep him from thinking about it while it was happening. THIS WAS NOT THE CASE!

First they laid him on his belly and he doesn't have much good control from there. Then the doctor used her weight to kind of sit on his butt while a nurse restrained his legs. Then they used the needles to do about 8-12 injections from his hips to his calves.

I was laying on my belly next to Gus managing the distractions so I didn't watch the procedure. With the first needle insertion he fussed and said, “Ow, ow, OW!” Then the burning must have started because his whole body went rigid. He yelled for Mommy and asked for it to stop. When it didn't and the needles and burning kept coming he just sobbed and I mean body wracking sobs and when he’d catch his breath he’d yell, “MOMMY!” over and over. These were the worst moments of my life and haven’t stopped haunting me since yesterday.

When they were finally done with the injections and I sat up so I could scoop him up, I was horrified at how much blood there was. Okay, it wasn't a ton but probably quarter sized smears around the sites on the last leg they did.

Maria was on the other end and watched the procedure. Her comments were:

“I didn't know they went so deep with those needles!”

“I wanted to vomit.”

The doctor said that the big kids tell her it burns for a few seconds and then it doesn't hurt again. Gus did seem to bounce back quite well and we pampered him the rest of the day. He got to go see the new baby giraffe at the zoo, he picked the restaurant for dinner (Bob Evans), and he got ice cream for a treat, etc. Maria and I avoided discussing our horrors in front of him but when I put him to bed that night and left the room he cried and wanted me to come back. Going in to talk to him, he opened up the topic with, “The doctor hurt my legs!” So we talked about it and I did the best I could to try to tell him that even though it was awful and it hurt, we are hoping it will really benefit him and help him move and feel better for a while. And I told him I was sorry, though sorry doesn't seem to begin to cover it.

Interestingly, he asked me the name of the doctor and even how to spell her name. She is most certainly on his hit list!

Kidding aside, this has really got me thinking about the psychological impact of this sort of experience. How terrible must it be as a child who trusts you to witness his mommies allowing this to happen to him? This is a kid who fake coughs and says he needs to go to the doctor to “feel him better”. How will this change his perception of doctors? Will he believe us anymore when we tell him things?

I feel terrible and that I should have, at the very least, prepared him better. I didn't tell him it was going to hurt so much or talk enough about why and what we were doing.

Perhaps the worst part is that I’m weighing in my mind what would make it worth it to do it again. Really?! Is there ANYTHING worth putting him through that experience again? Where is this coming from? Are we so desperate for him to walk someday that we would trade his innocence and trust for it?

So, this afternoon when I pulled his chair back from his table he actually placed both of his feet up on the table’s ledge. I gasped and showed Maria. We were told not to expect to see any results from the Botox for a week or two and here, 24 hours later, he’s done something that’s never been possible for him before. He could maybe do that with his right leg, though I don’t believe I've ever seen it happen but his left leg doesn't seem to have much voluntary movement at all so no way that’s ever happened.  And, though I hate myself for it, I find myself thinking, “If we get this in 24 hours, what else might happen? Where is that phone number to schedule his next round of Botox?”

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!

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

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!

http://www.wcpo.com/lifestyle/religion/family-prays-the-steps-in-mount-adams-as-way-to-display-faith-in-god-love-for-son-who-cant-walk

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.

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, http://www.eventbrite.com/e/prayer-campaign-for-gus-to-walk-tickets-11217099647 ?