Back to Bloggin'

My goodness... I hate when I let so much time pass. Of course, I have my reasons, which at the time seem valid.  With the opportunity to look back and reflect, I really do regret the break. There's no better way to describe it other than I was just tired of sharing. I recall my father encouraging me to write and mentioning how therapeutic it must be for me, but at the time, it had grown to be a burden. It was a stark recap of what we were experiencing and it required me to face the emotions I was trying to brush past.

We're in a different place now and SO MUCH HAS HAPPENED in the almost 2 years since my last post. Ari is in 3rd grade and will turn 9 in January and Liv is 12 and a 7th grader.

Here's a family pic from last winter :) It was Ari's first time ice skating and he loved it!

 The first thing I need to do is set the record straight about Ari's esophageal peristalsis. I just re-read my last post from November 2014 and was saddened by how naive and hopeful I sounded. Maybe I've become more cynical over the past couple of years, but it turned out to be nothing... he can swallow, but has to drink to move any food or liquid down his esophagus. There is always something sitting in it and it builds up like a column until it gets about 2/3 full, at which time he feels like he needs a drink. He'll take a sip, wash down whatever is in there and it just builds up again. We did a creative esophagram where we dipped food in barium and washed it down with liquid barium and then watched what happened, so we finally have an idea about how his esophagus works. At night, his saliva builds all the way up in his esophagus until he gags and chokes on it... every. single. night. There is nothing we can do but run to his room and reposition him (even though he sleeps elevated) and pat his back to help him clear his airway. He definitely has daily micro-aspiration, but somehow he managed to escape any permanent lung damage so far (per a recent CT scan).

We removed his g-tube (second time around) a year ago because he seemed to be eating well and every time he was tube fed, he had horrible stomach pains and bowel issues. A few weeks after the tube removal, I requested a lactose test because I suspected he had developed an intolerance and his results were off the chart. I regret not having the test before the tube removal since the issue was an intolerance to his formula, not the tube feeding itself. We removed our "safety net" in the case of an esophageal impaction or anatomical issue, but thus far, things have been ok.

So many other things have changed... we went to Cincinnati Children's for 10 days last summer for bowel management and now his cecostomy flush is so much better than it used to be. He's still catheterized through a mitrofanoff made out of a piece of colon (a hole in his belly button that leads to his bladder). Unfortunately, he constantly leaks urine so he has to still wear a pull-up. He's not old/mature enough for any next steps, which would require closing off the bladder neck and a bladder augmentation using a piece of his colon. Considering his colon was narrowed and hooked to his bladder at birth, we're certainly getting a lot of use from it!

Something happen this past summer that made me question everything I've done with his care up until this point. I will share with you... but not in this post. It was the wake up call I didn't even know I needed. Do you ever have those moments? The ones where you are so grateful for the bad stuff because it is a catalyst for something good?

One of the outcomes was a visit to CHOA's aerodigestive clinic where pulmonology, GI, ENT, Surgery, Nutrition and Speech all work together to collectively identify problems and and work toward a common goal. We had our initial visit last week and Ari's procedure date is this Monday, Oct 24. We will be at Egleston, which feels a little funny to us because we are always at at Scottish Rite. (Both are CHOA hospitals). The plan is: an endoscopy with esophageal dilatation and biopsies of the esophagus and stomach, a colorectal scope with biopsies to check for food intolerance (I suspect a glucose intolerance), scope of his vocal cords and larynx (suspected laryngeal cleft and possible vocal cord damage from intubations), and a lung scope and wash out to check for bacteria. He'll be inpatient at least 1 night... maybe longer if he ends up in the PICU.

Now that Ari is older, he has become obsessed with everything related to his surgeries and procedures... it's heartbreaking to hear him talk about it so much. We're doing our best to keep him distracted. He often talks about what he sees, hears, and feels while the anesthesia is being administered and during his surgeries. Rainbows, voices, yellow clouds, God and Angels are mentioned... and sometimes a ferris wheel and happy people. It's both frightening and fascinating to hear. I'll share more about that later... for the record, he (nor I) have seen any of the movies that mention such things.

I would love some feedback... In the past, my blog posts were more emotional than medically detailed. This format does not lend itself to the quick "at urology... dealing with another UTI" type of post. Would y'all like to see quick report-type updates on Facebook (Roar Little Lion Ari Shumbres Updates), Twitter (@jodishumbres), or this Blog?
So many people ask us about Ari every day and I'd love an opportunity to share some of our daily experiences in addition to the deeper stuff.

I'll leave you with the promise that I WILL update more frequently... I have a lot to write about!  Plus it's time for this page to get a facelift with new pics, links and layout. :)

Check out the AJC article about Cape Day and my favorite little super hero! Cape Day Ambassador ARI featured in the AJC

Ari is featured in the Cape Day video this year, too... that's my boy playing football with some Atlanta Falcons! Children's Healthcare of Atlanta Cape Day Video 2016

Ari will also be in the Forsyth County News tomorrow! I'll post the link once I have it.

Thanks again for all of your prayers and inquires about Ari's health... it mean so much to us!

Strength and Miracles

Ari pre-cecostomy change... before the fear set in

The past few weeks have been crazy... we've had so many medical appointments for BOTH kids.  I'll start with Liv... Bless her heart, that kid cannot stay injury-free.  For those of you who are new to my blog, Liv is our 10 year old daughter.  She's in 5th grade and is super sweet (ok- I'm a little biased!) and an amazing big sister to Ari.  I've often described her as "stoic" over the years and I still think it's fitting.  She was 3 when Ari was born and over the past 6 years, she's seen, experienced, and dealt with more than any child ever should.  She labels herself a caregiver and takes her role very serious despite our repeated efforts to encourage her to just be a kid.

I'll never forget this one time when Liv was 4 and we were walking down our wooden staircase together.  I had Ari in one arm and his IV pole in the other, his feeding pump connected and running.  Liv was talking to me and slipped.  I couldn't put down Ari or the pole because they were attached... I couldn't even reach for her.  I had to watch her fall, tumbling down the stairs until she reached the landing, then quickly bring Ari and the pole down the steps before I could help her.  She was ok, but I wasn't.  My guilt was overwhelming.

That's just one example of many... She's held him down while I replaced buttons, changed colostomy bags, and cleaned bleeding diaper rashes.  She's stepped out of her bath to find a house full firemen and EMTs working on her brother, the ambulance and firetruck outside of her window.  She taught herself how to catheterize Ari, so that he will never be in an emergency situation where she couldn't help him.  She's seen him in the hospital, unable to breath on his own and experiencing terrors from a mix of pain and medications.  She's had to sacrifice so much... Leaving parties, play dates and even Disney World when Ari had a medical problem that needed immediate attention.

Through it all, she's been a solid source of comfort to him, always knowing the right words to say.  I often write about Ari's strength, but Liv's should not be overlooked.  She, too, did not have a choice in what our family dynamics would be, yet she has stepped up, without resentment, to help and unconditionally love her brother.

We were so grateful when Liv found a sport that she loved... there was finally something just for her.  She started tumbling at ATA in 2nd grade and tried out for their competitive cheer team the same year.  I cannot say enough positive things about the impact this gym and its program has had on her.  It's a place where she can go and escape our medical-centric life at home.  It's about being on a team and working together, about setting goals and gaining new skills, and a place where she can tumble with a crazy amount of intensity.

This same intensity is what inspires her to push through pain... through signs that her body needs a break.  Through ankle sprains and breaks, a broken back, and most recently,  3 small breaks in her left hand.  Ironically, none of these injuries happened at the gym.  Not once did I rush her to the hospital for treatment because I didn't even know she was seriously hurt.  She works through the pain until she can no longer take it and THEN tells me there's a problem.  That's one tough girl.

So... back to the doctor appointments... Her hand injury required 4 doctor visits in 10 days.  Yesterday was her first day cast-free.  I picked up carpool last night and could not believe that she was on the floor with her team, stunting and tumbling as if the injury never happened.  I admire her perseverance, but certainly hope she learns to listen to her body a little bit more.

Liv practicing stunts

Liv tumbling

That brings us to Ari.  We are facing a serious problem with pre-procedure anxiety.  Maybe it's a form of PTSD or maybe it's just nerves, either way,  it's bad.  Ari gets this "high" of sorts any time we go to a doctor's appointment or to the hospital.  He's all happy and silly and then the minute it's time to begin, he is overcome with intense fear.  He starts to shake and cry, screaming "I'M NOT READY!" "I NEED MORE TIME!" "IT HURTS!" "DON'T TOUCH ME!" and backs himself into a corner, blocking his body and any attempt to touch him or pick him up.   He complete freaks out.  There is no rationalizing with him once he starts.  It usually takes many adults to position him and hold him down.  Here's the crazy part (as if that's not crazy enough), as soon as the doctor begins, he snaps back to being funny and happy.  For example, after 3 of us had to pin him down for a flu shot, he received the shot and said, "Well that was fun!" and got up like nothing happened.

On Tuesday, he had his cecostomy button changed.  I'll be the first to admit that it doesn't feel good.  His anxiety was over the top when Dr. B was ready to begin.  He yelled the same things and blocked his body from everyone.  It took 4 adults to get him in a safe position for the procedure.  As soon as it began, he calmed down, talking to Dr. B as if the struggle didn't even happen.  When we left, he turned it me and asked, "Wasn't I brave?"  Ummm... How do you answer that one?  I seriously think he erased the screaming from his mind and only focused on the actually procedure.

And then there was yesterday... Ari was scheduled to have an esophagram, which is a barium swallow study in fluoroscopy.  We scheduled it because he has been audibly refluxing in his sleep.  I can actually hear the swoosh of reflux and then he chokes on whatever comes up, putting him at risk for aspiration.  Before ordering any other tests, Dr. B wanted to see "what we were working with"... basically how the esophagus looks today versus last year.  During this study, we watch the barium go down his esophagus and into his stomach- kind of like a video X-ray.  He's had dozens of esophagrams before.  Sometimes we see severe strictures and sometimes we see food stuck, but we always see bulbous pouches, random narrowings, and unnatural bends.

The esophagram began like all of his other tests recently... he totally freaked out.  I tasted the barium to show him it wasn't so bad (it was flavored with Kool-aid), the radiologist even positioned herself in the equipment and drank the barium to show him that it was easy and painless.  He would't budge from the corner he had backed himself into.  It took her threatening to remove me from the room to get him to reluctantly comply.  After all of the drama, he took one sip and said, "mmm...yum..." and just like that he snapped out of his fretful state and was sweet and compliant.

As the procedure began, I watched the screen with anticipation.  It has been 13 months since his last esophagram and I remember it well... the barium just sat there and didn't move.  He had no visible peristalsis (the wave pattern of squeezes that moves food from the mouth to the stomach).  The results prompted his specialist to order a test called Esophageal Manometry which can accurately test esophageal motility.  The test results were devastating... after his swallow, Ari had ZERO peristalsis.  The specialist sat down with us and explained that Ari needed to go back to g-tube feeds for all of his calories and nutrition.  Eating by mouth would be for recreation only, purees, and followed by sips of water... This was long-term, not temporary.

2 years prior, we had removed Ari's g-tube that he had since birth because we thought he no longer needed it.   Unfortunately, the hole never closed and he ended up having surgery to "core out" the tract that had formed because every time he ate by mouth, it poured out of a hole in his stomach and down his body.  It was a horrible as it sounds.  Removing his g-tube was a major step forward... replacing it is an even bigger step back.  He was choking daily and losing weight, so we knew it was the right thing to do.  Last October (2013) he had the surgery for a g-tube placement again.

Over the course of this past summer, he seemed to be eating better, so we let him eat by mouth more and more.  Eventually, we stopped using his feeding pump altogether and he was getting all of his calories by mouth.  We assumed that with maturity came the understanding that he needed to drink after every bite to help the food go down, which he was doing.

I was not prepared for what I witnessed yesterday... for the first time EVER, Ari had peristalsis.  Not just a few irregular squeezes, but a normal wave pattern.  I looked at the radiologist in disbelief and she looked a little shocked, too.  She confirmed that Ari, indeed, had esophageal motility.  There were still narrow sections, pouches, and bends, but all of that paled in in comparison to what I seeing.

I was overcome with emotion and knelt down to look Ari in the eye.   "Do you know what this means?" I asked.  He shook his head no. "It means you are one of God's miracles."

"Aww... it was nothing." he answered coyly, flashing a big, barium coated smile.

I hugged him tight and prayed, so thankful for that moment and for his miraculous healing.

I haven't talked to his GI or surgeon yet, so I don't know what our next steps will be with controlling the reflux, but for now I'm just going to bask in the glory of a day I never dreamed I'd see.

He Can

Larry and I are still overwhelmed over the amount of prayers, encouragement, kind words, and donations that have been showered upon us over the past week.  "Thank you" does not seem like a strong enough sentiment...

After posting "Emotion Overload" (my last blog post), I was not prepared for the amount of social media "shares" it received...  I was especially shocked to see it on North Point Community Church's Facebook and Twitter feed.  Never... and I do mean NEVER... could I have foreseen the amount of blog hits and support we received this week. Thank YOU for reading about Ari's journey and allowing me to share my emotions, worries, and triumphs with you.

There's something that has been weighing on me over the past few months and I'd like to share it with you...

As a parent, we are conditioned to tell our children not to say "I can't".  We tell them that they can do anything if they try hard enough, or at the very least, know that they gave it (whatever their "it" is) their best effort.  I, too, tell this to my children about all sorts of things.  Lately though, I find myself telling Ari "YOU CAN'T".  Even typing those words makes my heart hurt for him.  Can you imagine the impact of these words on a child?

It started this summer when the neighborhood boys decided to play a daily game of dodgeball.  Ari wanted to play but knows that dodgeball is not a good idea for him for 2 reasons. First, he could get hit on his buttons which would be extremely painful, or worse, a button could get pulled out if the ball hit him at the right angle.  Second, as I mentioned in the last post, any time he gets hot, there is a high likelihood he will experience gastric dumping and he'll poop.

"I'm sorry Ari, I know you want to, but YOU CAN'T play dodgeball.  Why don't you watch and cheer on your friends instead?"

So Ari, being the happy child he is, nods his head knowingly and goes back to watch, albeit a little deflated.  Guess what happened? He got too hot running around cheering on his friends just like I suggested and pooped anyway, ending his play time and forcing him to make an awkward exit and run home.  He was angry with me... "You told me to cheer them on and look what happened!"  I understood his frustration and knew that he did not really think it was my fault.  I tried to comfort him and guided him to his bathroom so we could do his cecostomy flush because once it starts, there's no stopping until we completely clear out his intestines.  I had other things to do, but everything had to come to a halt so we could take the next hour to immediately deal with with Ari's medical needs.  As soon as we started his flush, his mood lifted and he told me, "It's ok mom, don't be sad, I didn't really want to play anymore."  He does this often when he senses sadness from me.  Of course he still wanted to play... he just cared more about making me happy than his own feelings.

Next came Boy Scouts... oh did he want to be a scout in the worse way.  Every day after school he came home and told us all about the amazing things you can do as a scout... Ziplining! Canoeing! Hiking! Camping! Meetings 2-3 times per week! He pleaded with us over dinner, clasping his hands together and shaking them for emphasis.

"I'm sorry Ari, I know how much you want to be a scout, but YOU CAN'T.  The zipline could catch your buttons, we don't want you in a lake because of the potential bacteria, and hiking and camping puts you at risk of being out in the woods and pooping, or worse, having a medical emergency.  It's not reasonable to put this responsibility on the scout leader.  YOU JUST CAN'T."

I'm sure you see the pattern by now, but it continues... YOU CAN'T play tackle football with the boys, YOU CAN'T go to Lake Lanier Islands with your friends, YOU CAN'T go out to dinner with your friends without an adult that understands your risk of choking and knows what to do.  YOU CAN'T  be dropped off at a classmate's house for a playdate just in case you poop/choke/catch your buttons playing with friends that don't know about your anatomy.  YOU JUST CAN'T.

This has been on my mind for a while.  I see how it affects him.  This week, Ari had an accident on Monday, so we did his flush.  We flushed him again on Tuesday, to guarantee he'd be good to go for Hip Hop class on Wednesday, but on Wednesday, he had an accident an hour before he was supposed to be in class.  I tried to be cheery and tell him about all of the fun things we'd be able to do together that night, but he read through it.  As I set up his flush, he told me "It's ok Mom, I'll catch up next week."  Again, he was trying to comfort me.  I guess my emotions were more transparent than I believed them to be.

On Friday afternoon, all of the neighborhood boys were at our house playing football in our side yard.  I peeked out the window and saw Ari sitting on the hill, by himself, watching.  I called him in and asked him if he felt left out.  He was so upbeat when he answered, "The guys are letting me be the coach- I'm part of the game!"  I was beaming with pride over his positive outlook.  There is so much I can learn about life through my son.  Not 20 minutes later he came in, looking for me with tears in his eyes.  I knew right away... "I pooped." He said, his chin quivering.  I hugged him, brought him upstairs and started to set up his flush.  "They let me be the coach, Mom." He told me again with both pride and sadness in his voice.  I was so upset for him and tried to hide it, but again, he knew.  "Don't worry Mom," he said after we got started.  I'll get to be the coach again.  I'm really good at it."  Of course he is... because "HE CAN," I thought to myself.

HE CAN do so many things... HE CAN be funny, and charming, and well-behaved, HE CAN play with his friends and never be embarrassed for the way his body is made, HE CAN dance and sing and live life to its fullest, HE CAN inspire so many people, many of whom have never met him.

You know what?  Larry and I CAN, too.  We can help Ari get to the point where all of these CAN'Ts turn into CANs.  We will research and continue to look for a solution to all of the obstacles in Ari's way.  We CAN get him the best care, from the best doctors, at the best places.  We CAN get him to a point where all of the limitations become history and he can begin to live without anything holding him back.

WE WILL...

Until then, I will learn from his optimism and not let small setbacks overshadow the big picture.  Maybe he's the coach not just in backyard football, but in living a life with gratitude and a smile.  That is something HE CAN do, and he does it well.

Emotion Overload

The past 2 days have been extremely emotional for us...

It all started in church on Sunday.  I mentioned in my last post that the current series is called "In The Meantime" and addresses what to do when there's nothing you can do.  This message is pertinent to everyone I know... whether it's a rocky marriage, a job loss, financial insecurity, a child with a learning disability, a sister battling cancer, a child with down syndrome... everybody's got their something.

Larry and I are definitely in our own state of "in the meantime".  Sunday's message was delivered by a man named Andy Jones.  Andy spoke to us about his own situation, which happened to be not one, but two children with autism.  He verbalized the self doubt that Larry and I have felt for so long...

"What did I do (or my spouse do) to cause this?"
"Will someone ever love my children the way they are?"
"Will they ever get married?"
"Can he ever play on a sports team?"
"Is this karma for something I did (or my spouse did) in the past, when we were too young to know better?"
"Why our child?"
"How are we going their handle this today, tomorrow and forever?"

The more Andy put these thoughts... these secrets that parents of special needs children think about but never discuss... into words, the more it sunk in.

I started to cry.  Not the "wipe a tear falling down your cheek" kind of cry, but the overwhelming, all-consuming type of cry that catches your breath and causes you to shudder.  I was mortified, but I couldn't stop.  So there I sat, in the second row, silently sobbing, with Larry to my left, fighting back his own tears, and my dear friend Kelly on my right.  Both attempted to comfort me, but it was no use.  I wanted Andy to stop talking, to stop saying these words, but he kept going.  The pain in my heart was excruciating and I had no where to go to escape.

Andy went on to discuss how he overcame these doubts, how he realized that autism was God's gift to him so he and his children could do big things with their actions, their message and their love.  I thought about Ari and the positive glow that surrounds him.  I have always felt like Ari's birth defects were given to him so his story, his fight, his perseverance and his joy in everyday life could be shared through us and through his very being.  Hearing Andy's message just confirmed my thoughts, though surfacing the buried doubts was difficult to handle.

As we went to pick up Ari from his small group after the service, I was still trying to catch my breath.  When I finally looked up in the crowded hallway, I made eye contact with my friend Stefanie.  For those you who have been with us since the beginning of our journey, you may remember Stefanie.  In addition to two healthy kids, her oldest daughter has Down Syndrome.  She was the first person I called as soon as I found out about Ari's birth defects.  She talked me off the ledge, she told me everything was going to work itself out, that I could handle the challenges of the unknown.  I am so grateful for Stefanie and her husband Jeff- both role models for us in our journey with Ari.  It was fate that we saw each other at this exact time.  She had been crying, too.  We immediately hugged each other tight.  She understood.  I understood.  That moment meant so much to me.

Of course, I went on to see about 20 people I knew after that and they all saw what a mess I was.  For those of you who saw me with a complete (and rare!) loss of composure... I'm sorry!

In case anyone is feeling their own "in the meantime" moment and wants to hear the message that was so impactful for me, you can watch it here: http://northpoint.org/messages/in-the-meantime/

The other thing that has Larry and I spinning is how quickly Ari's GoFundMe page went viral.  I didn't want to create it... at all.  For a year, multiple friends have asked me to create the page.  I had every reason why I wouldn't.  Larry and I didn't want to feel like "charity".  I was worried that  people would look at me and think "hmmm... I gave them money... Jodi has on new jeans... I wonder if she used my money for that?"  Ok... so I know deep down that this would (hopefully!) never happen, but just in case I wanted to protect myself from judgement.  My friends thought I was crazy.  I finally realize how selfish I was being... people wanted to help Ari, but I was trying to protect myself.

This past week, both my best friend from college (Julie!) and my friend Kelly launched their own individual campaigns to get me to create the page.  Kelly told me that one of the moms from ATA (Liv's cheer gym) had contacted her, wanting to help.  I was so touched by this gesture.  I finally gave in, with the condition that I would only send it to the two of them.  I was extremely honest on the page, as I always am in my writing.  It does not blatantly ask for money, like so many of these type of pages do.  Instead, I share Ari's story and the financial impact his medical care has on our family in real numbers.  I had to set a goal to publish the page, so I chose one that would cover past medical expenses we still owe and expenses for the upcoming year.  I thought it would only circulate amongst a few of my friends... HA!!! How wrong was I?!?  In 1 day... ONE DAY... the page has been shared on Facebook and Twitter over 200 times... all from 1 friend posting it 1 time.

We're humbled, overwhelmed, emotional, and in awe over the response.  Ari's reach is further than we thought.  His fight, his journey, his positive attitude, and his perseverance have touched so many people.

This is it... this is why Ari is here, why he is such a gift to us.  It all ties back to Sunday's message.  He has a story to tell... one that's uplifting, and positive and miraculous... and we'll be his voice until he's ready to share it on his own.

I had no intention of sharing the GoFundMe link on this blog, but at this point, many of you have seen it already.  So, here it is! http://www.gofundme.com/dr14f0

From the bottom of our hearts, THANK YOU... thank you for the prayers, the kind words, the encouragement, the love, and yes, the donations.  It still makes us a little uncomfortable, but I understand and am at peace with it now.

I also wanted to give a quick update and let you know that we WERE able to get insurance... at least for now.  What a relief!!

I can't do a post without a picture, so here you go... my big guy (messy hair and all!) showing off some muscles. Little does he know how strong he really is.

Doors

I can't believe I let the entire summer pass without an update!  There is so much going on in our family.  We're facing a difficult time right now, but more on that later...

I'll pick up where I left off... Ari had urodynamics to test his bladder function.  I hate that test.  It's painful, traumatizing (for Ari AND us!) and not exactly accurate... it's a snapshot in time and not indicative of what happens before or after that moment.  Imagine Ari with a catheter taped into his mitrofanoff (the hole in his belly button that leads to his bladder) and a probe taped into his anus.  Yep... you read that one right... wide awake, no anti-anxiety meds and a probe up his bottom.  Liquid is them pushed into the mitrofanoff, filling his bladder.  The purpose of the test is to check for the point where urine (or the fluid being forced in) leaks out.  I'm here to tell you that my son leaks urine ALL. THE. TIME.  It constantly drips out, even during his catheterizations or right after emptying his bladder.  Add a little bit of exertion or running around and he doesn't stand a chance of staying dry.  Yet, every time he has this test, he tightens up so much due to the discomfort of the probe that he holds the urine in.  It's a reaction and not something he can control, but it happens every time he has urodynamics.  So... according to the study, Ari has bladder control and he can hold over 500 cc of urine, which is completely way too much for a child his size.  Average should be about 240 cc.  The large volume in his bladder is so painful for him.  I actually stopped the test before he leaked anything due to the pain he was experiencing.  Bottom line is we've done this test repeatedly with the same result and then the same leakage occurs.  Trust me when I say he cannot feel when he has to urinate and cannot feel the leakage, but he certainly can feel the pressure of a bladder artificially filled with a dangerously high amount of fluid without the ability to release it on his own.  I'm not allowing him to do this test anymore... at least not for a while, which is fine because we decided that waiting is the best thing for him anyway.  His scrotum is too small for the pump that is needed for an artificial urinary sphnicter.  We are waiting until he grows physically and emotionally before taking that step, which will be in 5-7 years.  Plus, who knows what medical advances will take place in that time period?  Decision made, it's time to move on.

We have purchased a couple of things that have made a positive impact in managing Ari's incontinence.  The first is a medical watch that vibrates when he needs to use the bathroom.  As I mentioned before, he cannot feel when he has to urinate.  The more time that passes, the more he leaks.  This watch is a gentle reminder that he needs to be catheterized or sometimes he'll even go to the bathroom and can force urine out the traditional way.  He never fully empties his bladder when he does this, but it helps... especially when he is at a friend's house or away from us for an extended period of time.

The second thing we purchased was a new type of underwear made by Huggies called Tru Fit.  They look like real underwear, but have a plastic, elasticized lining that holds a disposable pad.  I cannot begin to tell you how much of a positive impact they have had on Ari's life!  Here's a picture... He's so proud!

There's only one problem with wearing the underwear instead of a pull-up... bowel accidents.  Just typing the words brings on a rush of emotion for me.  Our lives revolve around Ari's bowels.  We're still doing his flush via cecostomy, the button on the right side of his body.  It doesn't matter if we flush him every day or every other day, he still has accidents.  Can you imagine scheduling an hour in a bathroom every single night?  Liv has practice and we have commitments, yet we have to find the time to do it.  NOW imagine dedicating the time and then your child has unexplained bowel accidents between flushes.  Sometimes it happens right after a meal and other times it's just out of the blue.

There is one trigger that we know for sure and that is overheating.  It's August in Atlanta!! Of course it's hot!!  All it takes is one outdoor game with the neighborhood kids and everyone knows what's coming... Ari is going to poop... and once it starts, there's no end in sight.  The only way to get him relief is to do his flush again.  His bowels have us trapped.  I pray every time he gets in a pool that he doesn't have an accident.  I pray that the kids at school don't know what is happening and that he doesn't become "the kid who poops his pants".  I pray that we can go out to dinner without using my entire supply of pull-ups before getting home.  I pray that I can change him and remove the acidic poop from his bottom before he goes again, uncontrollably, on the floor of whatever bathroom we're in.  I pray, I pray, I pray... and you know what? It still happens... way too often.  I realized that God is not going to control his bowels, so now I pray for guidance toward the solution.

I truly believe there is a connection between Ari's autonomic nervous system, overheating, and gastric dumping.  I'm on a mission to find the root cause of the problem, which may, in the end, just be the way he is made.  I am going to help him live a better life and find a solution for him, even if it means after all efforts are exhausted, going back to a colostomy.  I want him to have the freedom of running around and being a kid and simply not worrying about having an accident.  This is an ongoing mission and I'll keep you (promise!) in the loop as we progress.

So many other things have happened recently.  Ari started 1st grade and Liv started 5th.  Once again, I am pleased and humbled by the accommodations the school has made for Ari.  Here's a picture from the first day!

Ok, it's a little blurry, but I love that they are laughing together.  Liv's cowboy boots are cut out of the picture, but totally made the outfit.  She's growing up!

And now for the difficult time I previously mentioned.  Remember the whole "financial nightmare" post from April?  Yeah... if only that's where it ended.  In April, Larry's company reorganized and he was promoted.  There was an opportunity for us to move to California and for a multitude of reasons, we decided it was not the right thing for our family.  I'm grateful we made that decision, because in the beginning of July, they reorganized again and Larry was let go.  Let's put this into perspective... recently promoted, successfully managing a team, attaining prominent new customers is a vertical segment where they didn't have a presence before, got along well with everyone in the company... the list goes on.  So why, you may ask, did this happen?  I have my own theory and it's one that's not unfamiliar to us.  I think our family was too expensive for this small company to insure.  We can't prove this, but I know benefit review was late June for open enrollment in July.  Ari's durable medical equipment and surgeries were not cheap in 2013.  This happened before, when Ari was still in the NICU.  At that time, the company actually told Larry that we were too expensive to insure and held his commissions, severance, and insurance over our heads in lieu of signing a paper waiving the right to sue them for wrongful termination.  This stuff really happens... hard to believe- right?

Anyway, what's done is done and we're left in a situation with no income and no insurance.  Sure, we can always do COBRA retroactive to August 1st, but the Company's new plan started on this date as well and has a deductible of $6,000 (minimum), plus $1,600 per month premium, plus copays (50% for DME).  That's a lot to pay when hopefully new employment and new benefits are just around the corner (I hope!!).  Our DME costs have gone down significantly since we are no longer using the g-tube (I'll update that in my next post!), so we are only purchasing catheters right now.  We have self-payed for all medical care and supplies so far, but it can't last for much longer.  One trip to the hospital and we'll be in a very difficult situation.  This is the part when many of you will suggest looking into ObamaCare.  Let's just say I looked and even tried to move forward with it and it is NOT an option.  I'll go into detail about that in my next post as well.

Surprisingly, our spirits are high.  The kids are happy, our marriage is strong, my parents are here and amazingly supportive, and we are starting attending  Northpoint Community Church where the current series addresses "what to do when there's nothing you can do". It's so pertinent to us right now.  We've overcome so many challenges as a family.  I'm able to look at this time and not feel like the world is ending, instead I have a feeling that a door is about to open for us... one that will lead us in a new direction and hopefully bring contentment and security to our family.

Until next time...
XOXO,
Jodi

Reflection and a Look Ahead

For many years, Larry and I have attended a Derby Party benefiting Children's Healthcare of Atlanta.  Many of our friends support this event as well, donning fabulous hats and Derby attire.  I had the honor of speaking as a "patient family" on behalf of Children's at this year's event.  Though I've spoken a dozen times for Children's in the past, speaking in front of my friends made me nervous.  My friends all know and love Ari, but most didn't know his history or ever see pictures from some of the really tough times.  I had the opportunity to share his story, and now it's as if a weight has been lifted from my shoulders... the unintentional secret is out there.  They have a glimpse into the past six years and can piece together how the course of events helped shape us into who we are today.  They also heard a little about how much time we invest daily into Ari's care.  I think this part was the biggest surprise for everyone.

It was hard for me to relive the past, telling some stories I tried to forget and some I never want to.   I really believe that for a few, the responsibility we bear is too much to bring into a friendship.  I wonder if some people made a mental note of this and they'll gradually start to pull away.  On the flip side, maybe they admire how we've handled the challenges and want to join us on the journey.  We never know, but I can say with conviction that we appreciate each and every friend who has welcomed us into their lives and treat Ari like he's just one of the boys. We are also so grateful when  their children treat him like a peer instead of a kid with special needs, making accomodations without drawing attention to it.  

On a different note, things are good right now, but they're about to change as we prepare for the next major surgery.  As most of you know, we manage Ari's urine output by catheterizing him through a channel that his urologist created out of a piece of bowel called a Mitrofanoff.  It goes from his belly button to his bladder.  This works well, but the Mitrofanoff kinks, making it impossible to catheterize Ari at times, which could lead to kidney damage.  Additionally, despite frequent cathing,  Ari still leaks urine, requiring him to wear a diaper.  We're lucky that he can still fit into size 5T pull-up, but this is the largest size.  The next stage is adult-style incontinent diapers.  As he progresses in school, we see this as a major social setback for him.

Ari has Urodynamics this Wednesday, a fluoroscopy test (that he hates!!) that measures the bladder and urethrea's function and efficiency.  He will also have a VCUG (voiding cystourethrogram).  The outcome will be reviewed at an appointment on Friday.  The next step will most likely be an artificial urinary sphincter.  It is a large, invasive device with a cuff that wraps around the urethra, a pressure regulated balloon that would be placed under the abdominal muscles, and a control pump that would be placed in his scrotum.  He would most likely have a Mitrofanoff revision at the same time.

I hate the thought of another summer where our plans revolve around a surgery, but it's better than doing it during the school year.  Who knows, maybe Ari will start 1st grade without a pull-up?  There's one caveat... he has uncontrolled bowel dumping, too.  It doesn't happen often, but when it does, it's bad.  Last week it happened twice, before that it was 3 weeks.  Do we risk putting him in underwear, knowing a bowel accident could happen, but most likely would not?  I'm open to opinions on this one. Maybe we should wait until he gets a little older and recognizes the signs that it's about to happen.  He said he can't feel anything, but many there's a little sign he could identify later?  Obviously, there is still a lot of unknown.  I'll send an update after we determine next steps with his Urologist.  Please pray for calmness, bravery, and tolerance for him during this Wednesday's testing.  He needs it! Thank you!!  More next week...

Larry and I at The Derby Benefitting Children's Healthcare of Atlanta

Insurance Fail

I've mentioned time and time again about my fear of losing Ari's secondary insurance.  Well... it happened.  I've resigned to the fact that I've lost the battle, which quite frankly, shouldn't be a battle at all.  I've been fighting this since July.  JULY!!  Nine months of paperwork, forms, letters from doctors, discharge summaries, surgical images... you get the idea.  It's all very sad on so many levels.  

So many people ask me how this could happen, so here's a brief explanation...  The Katie Beckett Deeming Waiver was created for medically fragile children who have significant medical expense, but do not qualify for SSI or Medicaid.  There are three ways to be eligible:

1- The child needs extensive rehabilitation services such as OT, PT, and Speech.  Examples of these children would be ones with cerebral palsy, down's syndrome, or autism.

2- The child has known hospitalizations of 48 hours or more scheduled for the upcoming year.

3- The child does not require hospitalization, but has medical interactions that are usually performed by a licensed nurse on a regular basis.  These children are often considered medically fragile and have an underlying medical condition.  This child must require skilled nursing on a "regular basis".

Ari always qualified in the third category since he had home health nursing since birth.  Last summer, we were denied additional nursing hours from our insurance company and instead of fighting this decision, we took it as a sign that I should care for Ari full-time without the assistance of a nurse.  This would create a more "normal" home life as he prepared for kindergarten.  There are a lot of medical interactions throughout the day, but I cherish every minute of it.  It's often hard to juggle, especially at night if Larry is traveling and Liv has practice, but we manage.  We stick to a strict schedule and my parents step in whenever we need a hand.  (They deserve a huge THANK YOU!!) We've all been so happy with our new normal.  

I had no doubts that Ari would be approved again and was shocked with the first denial.  The bottom line is we needed nursing to qualify.  Most families in our situation have nursing.  We are being punished for taking care of our child without assistance.  During this period of time, a court date was set to fight the Katie Beckett decision.  I was told if we got nursing reinstated, I had to withdrawal my appeal and reapply again to the program.  In other words, start all over.

Resigning to the fact that we were going to have to allow someone in our home again to give Ari the care that we are capable of doing ourselves and knowing the financial impact of losing Katie Beckett, we applied for nursing again, which is a major process. 

Nursing was approved,  I found an agency and they started the "case" (ugh- I hate that word) for Ari.  We now have nursing 3 nights a week.  The whole family dislikes the disruption to our lives.  It's so uncomfortable.  Easy things like adjusting his g-tube feed or giving Motrin needs a doctor's order.  He has to stop his playdates to get an assessment and they're just... there... all the time.  It was different in the past.  Ari was a toddler, I worked,  and we loved our nurse.  Now that he's in school, he wants to come home and play, not be a patient.

So... we canceled our appeal, reapplied for Katie Beckett, and then... received a denial.  After all everything we went through, the amount of nursing hours used was not enough to qualify.  We needed daily care, not just three times a week.  Our insurance would cover more hours for only a short period of time, then we would need a program called GAPP for more hours.  The only way to get GAPP is to have Katie Beckett.  We are in the nursing black hole.  The larger problem is we do not want the nursing we have, let alone more hours.

Larry and I decided it is in the best interest of our family to not have any nursing.  So, We are losing financial assistance because we are competent, responsible parents.  Something is very, very broken here.  

The impact of losing Katie Beckett is monumental to our finances.  It's our worst case scenario come true.  Our primary insurance covers 50% of durable medical equipment.  Catheters and feeding supplies alone are $3,700 a month (bill rate).  This doesn't include appointments, medications, procedures, or hospitalizations.  We don't know what our portion will be yet (it's harder to find out than one might think), but it's going to be financially devastating.  

We talk about me going back to work, but Ari's care is so intense and unpredictable... he really does need me.  As it is, I'm never far away from him, even when he's at school.  I'm not sure what we'll do...  just survive, I guess. We still need to do things that typical families do for the sake of sanity... occasional vacations, dinners out, etc... we don't want to be judged for doing these things because we have medical expenses.  At some point, we all just need to LIVE... enjoy our families and friends and accept that there's a path for all of us... we just don't always know which way it's going to bend.