Thursday, August 14, 2014

When no news isn't good news

I've been holding off posting with the hope we would have some good news. It's been more than a month now since we found out Maria was in rejection and these are the dark wearying days when the initial rush of rising to a challenge have sagged while the waves keep crashing in bigger and closer together.

So, I think a lot of our emotional disappointments have been that we were already on plan D for Summer Vacation and now we've slid back to Plan F, which is also the grade I give to Summer vacation 2014. This is my week off work for this summer. Friday night we decided to go to bed early, rise early Saturday, and head north to Paulding County, Ohio, for some fun but Maria didn't sleep much and was in so much pain Saturday morning that we spent many hours debating whether she should go right back to the hospital or not. She had just been released after spending Wed to Fri there last week. Ultimately, after speaking to her nephrologist, we decided to stay home and just drug her heavily, which got her over the hump. We were both fully disheartened after speaking to the doc as this is the guy we'd been waiting eagerly for to come back from his convention. I think we were both hoping he would return, review the chart, and have some brilliant insights and devise a great plan for getting her well. Instead, he was more of the tone that gee, they've run every test and checked things out, what more did we expect?

Sunday we drove up to just shy of Cleveland for a viewing and funeral. We spent the night and had a nice swim and ate inside an Ohio Buckeye's themed train before heading home. Bonus - it was all fully wheelchair accessible!

We have another kitty, Celeste, going downhill. (We just lost a kitty 2 mos ago.) She'd had surgery Friday for an abscessed tooth so we picked her up Monday as we got back in to town.

Maria had to run out to get her blood drawn Tuesday morning so I got up with Gus and had a great plan for the day! Knock out Celeste's home care, feed and bathe Gus and me, pick up the house before Maria gets home, run a few errands together, and have plenty of time to take in the Red's game that evening! Reclaim the week!!!

Well, an hour in to trying to care for Celeste I am pretty sure I have not done anything right, she's bitten my index finger piercing through the nail bed from the top and another puncture on the pad, and I have wet cat food slung from one end to the other of my kitchen, all the while dealing with Gus whining and complaining constantly because I'm caring for the cat and not him. Maria calls about this time having finished the blood draw, and I just lost it. I am so sick and tired of no one being able to figure things out for her medically and I'm utterly failing keeping any balls in the air at home.

I manage to rebound enough to slap some food on a plate for my son when Maria calls me back, this time opening up with, "Listen, Christi, you're going to have to pull yourself together. I've been in an accident."

She was sitting at a stop light when a lady in a 2014 Lexus slams in to her from behind, causing her to hit the Volvo in front of her. My dear wife, who thinks of everyone else first, is so upset at having wrecked a car that was being loaned to us by friends, gets all the way through the police report and drives the damaged car up to other friends' body shop before realizing, "Gee, I don't feel so hot." Gus and I raced out the door to meet her at the shop so at this point we hand Gus off to our friends (thank God for the Boitnott's!!!) and head back to Christ to the Emergency Dept. Her transplanted kidney is in the front right where the seat belt comes across so they needed to check out the kidney to see if everything looked okay. Christ ER now has a "quick care" section so heck, while we're there, I get a tetanus shot and antibiotics for my stupid cat bites. For Maria, they don't find anything from the ultrasound but warn her that her whiplash pain is only going to get worse. I'm not convinced her kidney is altogether well.

So, Tuesday's blood draw was for her Wednesday transplant clinic visit. This middle of the week visit is the reason we couldn't get out of town for the week so we were going to take off Thursday and Friday for Lexington, KY, to go see the Horse Park. The folks at clinic had other plans. They said, "We penciled you in for a biopsy tomorrow." We counter with, "How about Monday instead?" Well, here we sit waiting for biopsy results....

We did get to the zoo for a few hours and went to dinner at the new restaurant that one of Maria's nurses and her husband recently opened.

If you are near Independence, KY - go to Angelo's!!!

Okay, so, this just in, and I finally a bit of good news to share!!! The doctor just told Maria the biopsy results show definite improvement and she doesn't need any more treatments!!! Hooray!

Now, to salvage the final days of our Summer vacation....

Thursday, July 31, 2014

Frustrations in Maria's treatment

We took Maria to the hospital Tuesday for a follow up biopsy and what we thought was a quick overnight. Some people even mentioned we could probably talk the doc in to letting us go that night and not even spend the night there. How quickly things change!

The biopsy procedure itself seemed to go better than the last one. Maria didn't have much pain. She asked for medicine in advance so didn't suffer the usual nausea.

I left her Tuesday early evening with plans to come back for her the next day.

Wednesday morning she called and left me a pitiful voice message about how much pain she'd been in from cramping almost ever since I'd left the evening prior. And let me tell you - Maria is no wimp about pain but this had her curled in to the fetal position and completely miserable, which is how I found her late morning when I arrived. The doc had been there already and was saying maybe she had C-Dif and they were testing for that. Maria thought maybe her gastroparesis was rearing its ugly head. But as I started talking to the many nurses we have known so long and asking if this could be related at all to the biopsy, they were all of the opinion this could be a hematoma. Maria's assigned nurse just gave her some pills to treat the symptoms and Maria pretty much passed out after that. When I left her that afternoon for a doc appointment of my own, I didn't even wake her up knowing how often she'd be awakened anyway and that she needed rest from her awful night.

Being away from her the rest of the day yesterday my frustrations only grew. Why does modern medicine seem to just throw pills at symptoms and not treat root causes? Maria's main nephrologist who sees her at the hospital is in San Francisco for some huge international transplant convention. Why can't things get done in his absence? What is the problem with making decisions here and taking action? If the biopsy results are back what else are they waiting for to determine if there should be more treatments?

After a demanding work day, a frustrating day of Maria's medical stuff, and then I got an uber cranky little boy in full meltdown mode handed off to me around 6, I was just done for the day. We were in jammies and in bed by 6:30 PM last night and even then it was another 90 minutes of fussing and screaming before we both got to sleep.

But, today's a new day! We were up early and after taking care of some work stuff, I thought I had an early enough start to get to the hospital and see the doctor but I missed him. There was at least some news and a little progress.

The biopsy shows improvement over the one from a little more than 2 weeks prior but it still shows cellular rejection and her antibodies are still too high, though improved. They do want to do more treatments and they actually started more thymo last night. What I didn't fully realize and learned today is that the plasmapheresis takes the thymo out of her blood so they have to be careful about when they do that. And, the antibodies can have more opportunity to attack the kidney as a result of the thymo. So, being in both forms of rejection is really pretty tough given that the therapies for each combat each other. Ugh!

This afternoon the doctor called her and here's the plan for now: No more thymo after last night. Plasmapheresis tonight and Monday, which pairs with the cancer drugs, too. She has a clinic (kidney transplant clinic) visit for Monday. I just pray that her normal Doc is back from CA and sees her on Monday to make sure all of these decisions are solid!

So far they aren't talking about another biopsy, though I would think another is in her future...?

We appreciate your continued prayers, thoughts, and support!

And here's the picture worth a thousand words as to what the stress of a sick mama and the hard work of going to Conductive Ed 5 days a week has on a 3 year old!

Monday, July 28, 2014

Another biopsy tomorrow

Time will tell its tale after we get results from a biopsy that is being done Tuesday morning. We should know about the cellular rejection tomorrow by end of day and about how the kidney is holding up with the high antibodies by end of day Wed.

Maria had another treatment today - plasmapheresis, solumedrol, and the chemo drug. It sure does take it out of her. And her poor arm where her shunt is being accessed is very swollen and bruised. She's not allowed to lift over 5 lbs with that arm. You don't realize all the things you lift in a day over 5 lbs with your dominant arm until you aren't supposed to do it! Add having a disabled toddler in the house and well, you get the idea.

She has been an absolute champ considering the high doses of steroids she's been getting! I would be crawling the walls and taking everyone's heads off!

We leave early in the morning for the hospital. I'll post results as they come in.

Thank you as always for your continued love, prayers, and support! It surely does take a village!

Tuesday, July 22, 2014

Maria giving her own update - that's a good sign!

I am sorry it has taken so long to update you all on my health. The last week and a half have brought some major changes in my life. I am in rejection of my transplanted kidney but it seems as though it may be able to be saved. While in the hospital I received a series of medication of thymoglobulin and steroids to help stop the rejection. Both of which had some pretty nasty side-effects. now in addition to those treatments I am receiving apheresis dialysis to rid my body of the antibodies built up against my kidney and two more chemo drugs to keep my body from making the antibodies again. I have had two of these treatments and will have another two before having another kidney biopsy next Tuesday. Hopefully, that biopsy will come back and the rejection will have stopped. If not, I will get four more apheresis and chemo treatments. I am pretty wiped out and sick to my stomach on treatment days but feel better by the next morning. I am encouraged that everything is working the way it should because my numbers are coming down closer to normal. I am not there yet but I have a lot of hope. I can not tell you how much your prayers and comments have helped. I am so grateful for all of you in my life. Please keep praying that my kidney can be saved and things can return to normal. Thank you again.

Monday, July 14, 2014

Turning a corner?

Today's news was all much more positive!

The doctor who saw her today thought that the treatment is already showing signs of working and stopping the rejection! I try not to think about the damage the kidney has suffered in the meantime and the years it takes off its life and just be grateful for every day it does its job.

Because my Maria follows her own path even with her illnesses, a whole team got together today and reviewed her case. They have determined they still want to do plasmapheresis. I'm not sure when that will get scheduled - perhaps Thurs or Fri. Her central line went in today and they have decided she can get a porta cath when that comes out. That's a more permanent access so they won't have to keep doing central lines.

She is getting her thymo treatment tonight and she hasn't answered the phone so I'm thinking they had to knock her out again.

No one is speaking the d word yet - discharge. It will very likely not happen until Fri or Sat.

Meanwhile, this boy wants to be back in Mama's arms! He started back at conductive education today.

Sunday, July 13, 2014

Day 3 Kidney Rejection Saga

Today wound up being a good day.

She didn't need the thymoglobulin today because her t cell levels were still showing enough suppression. I've been reading up a bit on how this all works and basically, "thymoglobulin effects large reductions (through cell lysis) in the number of circulating T-lymphocytes, hence preventing (or at least delaying) the cellular rejection of transplanted organs."

They believe she will certainly need it tomorrow but from what I've gathered it's a bit of a tightrope to give enough but not too much of the thymoglobulin.

We enjoyed dinner together from the food I brought her from Aunt Missy’s birthday party. Happy Birthday again, Missy!

Tomorrow Maria will have some sort of line put in. There has been an ongoing debate every time she is hospitalized about whether or not they should put in more “permanent” access or if they should keep having to put in central lines each time she needs stuff. I think the plan is for a central line at this point. She’s been through so much that her veins don’t keep IV’s for long so the central line makes things easier for IV meds, blood draws, etc.

We’re just tucking in for a big week here as Gus heads back to Conductive Ed and I have a work trip to Nashville this week. 

Here's Gus sitting on my office chair "helping" me with my work! Before conductive ed he would not have been able to sit on a chair like this that swivels, where his feet don't touch the floor, and he doesn't have armrests to grab. He was in the process of going from leaning back to upright in this picture!

Saturday, July 12, 2014

Day 2 of Rejection Saga

Thank you so much for the incredible outpouring of love and support! It's knowing you are all in our corner that keeps us going!

Maria had a horrible night but all in all there are glimmers of hope today.

The thymoglobulin has violently horrid and immediate side effects. She had her first round last night. After a series of weaker medications which they attempted to ease things for Maria over the course of about 5 hours, they finally gave her dilaudid and she just passed out. When she came to this morning and then got a little more rest, she had a pretty good day.

They had scheduled her to go ahead and start the plasmapheresis today but they called it off and have decided to hold on that until Monday and evaluate again whether to include it.

Her biopsy results today were not showing a lot of damage from the antibodies. So, there is still concern there since the blood results for the antibodies are so high but with the kidney not showing much distress from the antibodies. they aren't sure the plasmapheresis is necessary.

The plan for now is to monitor what the thymoglobulin does and react accordingly. As mentioned yesterday, that is administered IV only. She will get 5 treatments of that every other day. So, she had a good day today because she didn't have to do that. We're buckling in for tomorrow.

As of this moment we are predicting her being hospitalized until at least Tuesday and it's possible they'd keep her until Saturday next week to do all of the thymoglobulin treatments inpatient given her awful reaction. Time will tell.

Through the generous help of family and friends, I think we just may have this coming week covered for Gus. If Maria gets released and has to be transported for appointments, we're still short there, but there are so many unknowns it's hard to plan for that.

Her normal cocktail of anti-rejection meds is also being adjusted with the hopes that this rejection can be halted and she can go on from here.

Aunt Missy says Maria got her best medicine today out of her visit from Gus. We took his walker/gait trainer and Gus made Mama march through the halls twice to get some exercise. In the patient waiting area was a table he could get right up to so he happily played trains there for quite a while. It was good for all of us to just sit and do something so normal.

At some point, probably in about 2 weeks, there will be another biopsy to evaluate progress.

I snapped this picture yesterday because this sight took my breath away then and it still chokes me up now. This beautiful woman reaches that hand out straight from her heart. It's the hand I nervously yearned to touch 16 years ago, flush with new love; the hand I held as we exchanged vows 14 years ago and I slid that ring on to her finger; the hand that has extended comfort to so many of our pets as we've had to say goodbye to them over the years; the hand that touched my belly in wonder with the knowledge a new life was happening there; the hand that was the first one our newborn son gripped though his premature hand didn't even wrap all the way around one finger; the hand that had to hold his as he slept in his bassinet every minute of every night for the first year. Here is that hand reaching towards me as she lies vulnerable and worried for what's to come.

Three squeezes, baby, and you better keep squeezing back!

Friday, July 11, 2014

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! 

Tuesday, May 6, 2014

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?”

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, ?

Monday, March 17, 2014

Happy St Patrick's Day - what better day for a wee Fergus update?

First, you should check out last year's reminiscent St Patrick's Day post:

I think it's because the wee Fergus had only just started wearing clothes on his first St Patrick's Day that I remember his darling little shamrock outfit so well. But it also seems to shrink in size such that I can no longer conceive that my huge boy today was ever tiny enough to fit that first little outfit. And he had practically doubled in size already from birth by the time he wore that!

Here is my little man's 4th St Patrick's Day and I couldn't be more proud of my son.

He started public preschool in January and is just thriving. We are all about phonics and other pre-reading skills. So, if you hear us saying things like n-n-n-n-nighlight starts with "n" you'll know why. "N" sounds like n-n-n-n-n....

Gus still goes to Perlman Center twice a week. He's still making slow but sure progress. His left hand gets gradually more involved all the time. Gus got his first set of DAFO's - you'd call them leg braces - we call them super legs. He is able to stand in better form with those. Now when I take him to the potty I can have him hang on to the handicap rail while I take his pants up and down as he can hold himself up like that for a few seconds at a time. Crawling doesn't look much different than many months ago - it's still more dragging himself along with mostly his right arm but he's bending his legs more even if they aren't powering him more yet. He takes better steps and gets further at a time in his gait trainer now and I just brought one home for him that will hopefully work better than what we've had. We are longing for warmer days where we can take family walks!

It's been time for all sorts of equipment - we modified our van for a wheelchair, put in a lift to get from garage to house level, I just tonight got him a gait trainer (walker), portable stroller for when the wheelchair is just too much, and a crawler, and we are doing battle with the insurance company for a power chair. Oh, and Wed we will bring home a stander.

We have been meaning to try Conductive Education for a long time and we are hoping to finally do that over the Summer. It's another alternative (read that as no one no where is going to help pay for it!) therapy that has shown some positive results for kids with CP.

We now have total conversations with the little man. He is very detailed and clear in his language. Thank God we have one area where he's ahead of the milestones!

Maria is finally doing better, though it's scary to put that in print for fear of jinxing it. After about 10 hospitalizations in 15 months, we finally made the tough decision to not take the advice of her nephrologists here and we sent her to Tampa, FL, to the Norman Parathyroid Center at Tampa General to have a parathyroidectomy. She has gained strength and health back in a way she hadn't been able to in years. Now she walks alongside us at museums instead of propping herself up in her scooter!

Happy St Patrick's Day!