Upgrading and Fundraising

The last month has revealed a new way of living for our family.  Ayla's transition from NG to Gtube created a ripple effect that was impossible to anticipate.  Living with a NG tube-fed child is something that only becomes normal at home.  The moment we stepped out of the house, the world clearly saw things differently. 

A tube on the face indicates an acute illness, one that warrants constant concern, sympathy and conversation.  The daily reality that once served a therapeutic purpose for all of us, turned into a burden that I did not realize until it was gone.  Ayla's tube is now undercover.  The public sees her as they see any other child.  Ayla no longer ilicits the double-take, the extra compliments that covert pity into something more sensitive and loving.  The constant public reminder of her disease is now largely amis, and far from missed. 

I had no idea how much of my energy was evaporating in response to the looks and the conversations.  When Ayla's NG disappeared, I started to notice myself.  I was a mess!!!  More than once I had left the house without checking myself in the mirror.  On a couple of occassions, I saw myself only once I returned home from a day out and saw a mismatched, discheveled and grossly unflattering version of myself.  Ayla's "upgrade" was an inspiration for my own.  I set out to get a new haircut, bangs and all (much to Steve's dismay.  Sorry, hunny!).  Next, we moved Ayla out of our bed, out of our room, and into her own (granted, we're still trading off sleeping with her, but at least we have reclaimed the master bedroom).  Then, we painted the master bedroom, covering the putrid excuse for yellow with a lovely neutral gray (it's pretty, I promise).  Next, I signed the kids up for a music class.  We now have a list of house projects and camping trips that we didn't even have the energy to compile before. 

What I am most proud of, however, is the commitment I have made to run a half marathon in July in Ayla's name.  I am training with Team Challenge, the fundraising portion of CCFA (Crohn's and Colitis Foundation for America), and am feeling pretty strong running over 4 miles at a time.  I have just recently started the fundraising portion of the run, and am aiming ro raise $3200 for CCFA in the next two months. 

While the tube transition has been monumental, we are still far from living a life free from the burden of Crohn's disease.  Ayla still gets substantially ill at least once a month (ear infections abound), which inevitably manifests in bouts of vomiting and signs of a flare (bloody stools, scary!).  And must we not forget we have another child who also deals with normal illnesses and accidents as well.  This past weekend was a record-breaker.  Friday night Ayla awoke crying inconsolably and vomiting.  At midnight we decided it was time to take her to the ER.  We arrived back at home at 4am on Saturday.  I decided to skip my Team Challenge training.  At 3pm that day, Jonah bombed our hill on his bike and took a huge spill, fracturing his elbow.  A 4pm trip to the ER resulted in xrays, morphine, and a CT scan.  Jonah and I got home at 11:30 pm.  Yep, that equals two family trips to the ER in 24 hours.  Glad that's over.
Here is the letter I'm sending out to fundraise.  Please read it and donate if you can.  Even $5 is hugely appreciated.

April 10, 2013

Dear Family and Friends,

For most of you, the news of our daughter’s health issues is nothing new.  I have made a valiant effort to assault you with emails, Facebook posts and blog entries.  If this is news to you, the headline should read: 6 MONTH OLD BABY GIRL DIAGNOSED WITH CROHN’S DISEASE.  While every mother feels their child’s every breath is newsworthy (rightfully so!), Ayla might in fact deserve the front page, since there may only be a few hundred of such cases in the world.

Dealing with Ayla’s disease has been the biggest challenge of my life.  So why not add yet another?!  In honor of Ayla power sliding into her second birthday, and her strength and tenacity in spite of her illness, my new cause and challenge is to complete the Napa-to-Sonoma Wine Country Half Marathon on July 21^st with Team Challenge, the fundraising arm of the Crohn’s and Colitis Foundation of America (CCFA).  Ayla’s health has been fairly stable since being on a biologic therapy called infliximab, the research and development of which were funded by CCFA.  Ayla, like others, is likely to develop antibodies to her medication over time, resulting in a resistance to her medication regimen.  With there only being a few medications available to treat Inflammatory Bowel Disease (IBD: Crohn’s and ulcerative colitis), it is essential that we fund research before Ayla runs out of treatment options.

The Foundation has already raised and invested more than $168 million in research.  82% of the funds raised by Team Challenge participants will directly fund CCFA’s mission: to cure IBD and to offer support and information to adults, children and families affected by IBD.  These diseases are painful and incurable illnesses that attack the gastrointestinal tract, not only affecting the daily quality of life, but also general health and longevity. 

The implications of living with IBD’s are many: pain, diminished energy, surgery, death, social consequences, isolation, and the real but often ignored consequences of a lifetime on strong medications.  Our mission statement says: we are running to find a cure.  My hope is to see this in my lifetime, and until then support the discovery of safer, gentler treatments for my daughter and my Team Challenge family. 

Thank you for listening to one mother’s rant.  It is my desire to raise awareness of this disease and dollars for research.  Your tax-deductible donation goes directly to fund research and patient support.  Please help me further the mission of the CCFA to the best of your ability, and please pass the word along to anyone with an interest in this cause, especially if they are in the position to do some charitable giving!  You can make a donation on my website at online.ccfa.org/MenoReiner or mail me a check made out to CCFA.  If you would like to read more about Ayla and our family’s experience, see my blog at http://aylaalligator.blogspot.com

Thank you for your support and I wish you health!

Meno Reiner (menoreiner@gmail.com, 760-525-3013,

43 Meadowglen Dr., Petaluma, CA 94952)

A big change afoot

In the Fall of last year we were considering a G tube (gastrostomy tube) for Ayla.  We discussed the procedure and lifestyle change with the surgeon at the requisite pre-op consultation, and she recommended that we do everything possible to get Ayla to eat by mouth again before we put her through this surgery.  I loved this recommendation, especially since it had come from the surgeon herself, who has essentially sidestepped a hefty paycheck in the interest of my child.  Yay for Dr. Mueller at CPMC/Lucille Packard!  With a newly charged motivation to get Ayla eating again, I began taking Ayla to a feeding therapist.  After 4 sessions, Ayla started showing a little progress.  Sadly, however, insurance then refused to pay for the $800 bill and we had to cancel therapy.  Using the tips I learned in her feeding therapy sessions, I practiced with her at home a bit but rather than showing more progress, she reverted back to a state of food aversion. 

We are now going on a year of her being fed primarily through her NG tube and we have again made the decision to get her the Gtube.  It seems a little odd to say but I'm nearly ecstatic.  With the exception of the few short moments following her NG tube coming out by accident, I haven't seen my little girl's face without a tube taped to it in a year.  Her skin underneath the tape is chronically irritated, sometimes to the point of bleeding, and I can't imagine how irritating it must be to have a tube constantly in her throat. 

On February 26th, Ayla's NG tube will come out of her throat and off her face.  She will instead have a tube that gets surgically inserted through her abdomen and leads directly to her stomach.  While she is tube fed, she will still be given primarily Elecare formula.  But with the tube being larger in diameter, we will have the ability to puree food, REAL FOOD, and push it through the tube.  This will give us the ability to experiment with foods to help us identify which foods agree with her and which do not.  Thus far, our ability to do this has been heavily restricted, as it is subject to what she is willing to put into her mouth and swallow.  She probably has ingested a total of 15 different foods, all of which seem to agree with her except dairy.  My short-term goal is to attempt to transition her to the GAPS diet through her tube (assuming she can tolerate it).  My long-term goal is to get her transitioned to eating the GAPS diet by mouth, and then possibly a slightly more normal diet, with the help of feeding therapy.  It looks as though we're in for a battle with our insurance company over getting this covered, but I am confident that our perseverance will yield the desired result.  We will get our girl to eat.

Please cross your fingers or pray or meditate or do whatever you do to help Ayla in a seamless surgery at the end of this month.  We completely depend on your love and support to get us through every step, every transition, good or bad.  We are coping quite well because of your love, your words of encouragement, your sympathy, your help, your presence.  Thank you so much.

Things are looking up!

When so much time has passed since the last post, it seems nearly impossible to craft a summary that captures all the intricacies of this experience.  Which is one of the reasons why it's taken me this long to write another post!  Not a day goes by that I don't think of a new post to write, the catchy and ironic title hitting me before the story itself.  By the end of each day, when the kids are finally asleep, I am a shell of a human being.  I can hardly muster the energy to open a book or press the buttons on the remote, let alone write something meaningful about our daily life over here.  This is not because Ayla is feeling poorly.  In fact, she is feeling quite awesome these days.  I think it's because I finally have the chance to relax, reflect, clean, sleep, and let my body feel how exhausting it is just to live an almost-normalish life. 

September was the last time Ayla was in the hospital, and it was for just a day to rehydrate and check her blood for signs of a flare.  We were in SoCal for a week and perhaps a virus or some hardcore teething pushed her over the edge, causing her to vomit for days and preventing us all from sleeping any reasonable amount of time.  Blood tests did not indicate a flare so we just got her IV fluids, gave her a medicine that would prevent nausea and vomiting, slowed down her NG feeds, and kept her on Tylenol around the clock until we got her home.  She recovered nicely and has felt pretty well ever since.  Two months of stability has been AMAZING. 



Jonah loves to wear the pump backpack while pushing Ayla in the toy stroller!



Trampoline giggles.  If only AquaNet was strong enough to hold this style!



Over the last few months we have been blessed beyond imagination.  One of our most treasured friends, Jen, has been living with us and helping us with...well...everything.  The love that has developed between her and the kids is magical.  She plays with them, takes them on adventures, dresses them, feeds them, cleans up after them, does their laundry, and loves them as they were her own.  To top it off, she does all of that for me and Steve too (except she doesn't dress us because that would be wierd)!  Jen has never failed to make me laugh when it counts or offer me sympathy and understanding when I need it most.  Because of Jen, I have been able to go on several long-awaited dates with my fabulous husband, and I've been able to pursue resources that have turned our lives around.  Jen is moving out in two days, if we haven't kidnapped her before then.  I am excited for her as her new life of travel and mystery unfolds before her, but I am doing a significant amount of grieving as well.  She has been present for, and has a lot to do with, our transition from a state of desperation to a place of peace, acceptance, occasional denial, and the most balance we've had in 19 months.  We've had a rich history together, as she stated so well in her blog: http://heygirlniceblog.com/2012/11/come-and-knock-on-our-door/ , and I so look forward to seeing how our lives will unfold together in the future.

Happy Halloween!  Our little garbage man and Ayla after she deconstructed her fairy costume.

Love and light

Ayla and Auntie Janet...I mean Jenny.

Three's company!  So appropriate on so many levels!

Another life-changing force that has blessed us beyond belief is the Carousel Fund (http://www.carouselfund.org/).  This organization provides financial support for Petaluma families with children who have a life-threatening or catastrophic illness.  Within a week of presenting our case, founders Arnie and Susan Cohen, were at our door with gifts for both of the kids, and a card with a check inside for us.  Steve, Jen, and I were in tears as they presented their gift that would pay off our weighty health insurance deductible.  They also offered to help us with alternative medical care for Ayla and respite care so we could take a much needed breath.  The financial and emotional relief that this organization has provided is beyond measure.  In just the couple of months since they showed up at our door, our lives have changed dramatically for the better.  It's like we're getting the chance to rise up from the muddy pit of exhaustion, dust ourselves off, and buff out the past year's scuffs.

I am starting to understand that "angels" and "saints" are simply those people that walk among us, materializing that which we really need at the times we need it most.  It's no miracle.  It's human nature.  It's a significant lesson in life.  One that we will never take lightly.  And one that will change us to the core.

Unveiled

My view of the world has changed; I mean this in the most literal sense.  For a while I was thinking that it was my bandage that was obstructing my view.  It was getting on my nerves so I pulled it off this morning.  I then realized that the obstruction was the new shape of the bridge of my nose, combined with residual swelling.  This is even more annoying now!  It's inescapable!  Until the swelling subsides, at least.
I must have been 12 or so when I loved the soap opera "The Young and the Restless."  A character named Eve, I believe, had a scar that ran across her cheek about 2 inches.  Her devastation was irritating.  She was clearly a beautiful woman despite this minor flaw.  I would do just about anything to trade in this thing for a 2-incher across my cheek.  Eve got off easy!
So here I am with no bandage.  You better believe I'm going to post a bunch more photos of myself as I look better!

Progress!

I'm still freaking out a bit about my face everytime I take off my bandages.  However I am pretty amazed with the amount of healing that takes place each day.  Thought it might be fun to toss all vanity aside and post photos now and then so you all can see this amazing transformation.

Skin around my eyes is turning a lovely yellow.  Parts of the incision are visible on my forehead and under my left eye.
Still quite swollen around eyes and cheeks.

Mamagator

These days the universe has a lot to say to my family.  I have yet to determine why exactly we have been chosen to deal with so many huge hurtles in a year.  Did we need to learn a lesson in humility?  Did we need some Jedi warrior training?  Were we too soft?  Was I too pretty?  Ha!  Love that one!
This last Thursday I flew down to San Diego WITHOUT my kids.  Despite the crappy impetus for the trip, the moment I was dropped off at the airporter shuttle I was on vacay.  I kicked my feet up on my luggage and started catching up on phone calls I hadn't been able to make for days.  Knowing that a People magazine and a glass of wine awaited me at the airport, I was instantly steeping in relaxation.  9 hours of travel couldn't have been more blissful: private time, social time, reading time, sleeping time, going to the bathroom without holding a baby on my lap!
The next morning my mom took me to the Moh's surgeon to have two basal cell carcinomas removed from my face.  Once on the surgeon's table, I giggled at the fact that although I was about to go under the knife, I still felt like I was on vacation!  A few hours later, just before the medical assistant bandaged me up, he asked if I wanted to see my face.  I hesitated and then decided I needed to look.  I think I may have left my body for a moment because the world slowed down a bit and I stared at my face in the mirror as if it was something had it's pieces glued back together after shattering on the floor.  This couldn't be my face.  And yet it was.  I was far from freaking out as I would expect myself to under the circumstances.  I thought to myself that most normal people would probably have a good cry at this point.  But I didn't feel like crying.  Gasping a little, maybe, but not crying.

Just finished with surgery.  Classic smile of shock and denial.

   
Turns out the cancer on the bridge of my nose ended up being rather large and left me with a dime-size hole front and center.  Another small cancer was under my left eye, and was removed leaving nothing huge and ungodly like the other.  In order to cover up the spot on my nose, the doctor took skin from my forehead and pulled it down to cover the bridge of my nose.  This left me with an incision that starts on my forehead, comes down between my eyes, and branches into a Y, one side crossing over the bridge of my nose and the other side swooping under my left eye.  To be honest, I think I'm still in denial about the whole thing.  It's as if my brain is impervious to the fact that this has actually happened to me.  I am in the middle of the most profound part of the healing process--still incredibly swollen and bruised--and it looks as though I was in a head-on car accident.

Today's hot look.  Hard to believe this is an improvement from yesterday.

Meanwhile, Steve and the kids and Grandma and Grandpa are keeping life flowing up in Petaluma.  Before I left I gave Grandma the crash course in operating Ayla's pump and administering all the meds and supplements, and Steve is in charge of changing the tape on her face, requiring the classic leg pindown on the floor.  Not Ayla's favorite.
I'd like to say that I'm healing up in a vaccuum free from worry about Ayla but I can't cut myself free considering we spent another night in the hospital just last week.  After a day of screaming and being unable to sleep we took her to the ER in case it was something serious.  Her white blood cell count was up but we never found out what the source of it was.  She's been quite well ever since but a fussy day can turn into something more serious in a heartbeat.  Since being at home she's been doing very well.  So far so good on that front but that doesn't exempt me from stressing about it from time to time..
At least once a day I want to throw myself a pity party because of all the stuff we've been faced with lately.  Sometimes I go through with it and sometimes I take the "bigger person" approach and try to breathe through it.  What I have realized in all of this and what I am reminded of everyday is how resilient each of my family members are.  We keep putting one foot in front of the next and we get stronger everyday.  Maybe the universe is telling us that Ayla is not the only alligator in this family.

A week in the life

I absolutely love how Ayla is commonly referred to as Aylagator these days.  Oh how that name fits her!  Just this morning she got upset at Jonah for taking over the game she was playing and she proceeded to cry, grunt, growl and even attempt to bite my leg!  Bite the innocent bistander??  I did what any responsible parent would do and kindly redirected her to bite her big brother instead. 


Looking good and chubby, just the way we like her.


Last Saturday my dad, PopPop, arrived to take his shift here at Aylagator Manor (sounds so classy, huh?).  He works some great magic with the kids and as much as I know my dad loves his quiet time and privacy, I can tell he gets a lot out of hangin' with the little ones.  Squeels of joy come echoing up from the downstairs play area as Jonah and PopPop play chase and trains.  Ayla has actually lunged from MY arms to be held by PopPop (this is practically unheard of with anyone other than Mommy or Daddy).  He has been an asset in so many ways around here: cooking, doing laundry, babysitting, mowing the lawn, removing dandelions by hand, planting a succulent garden, fixing the balcony, and keeping me positive.  During the course of his visit Ayla has gone from feeling mediocre to feeling downright crappy to feeling pretty amazing.  My level of anxiety directly correlates with Ayla's state of health so PopPop has witnessed me go from highly-functioning, grin and all, to nearly paralyzed with fear of a flare.
     
Here's how the week went: PopPop arrived and all was pretty typical--Ayla fluctuating from a little independent play to clingy and whiny.  Then she vomited and her NG tube came out.  My reaction was an odd combination of fear and excitement.  We took this as an opportunity to see how she would do without it.  She refused to take broth out of a sippy cup so I crept it into her mouth with a syringe.  I offered her bits of chicken and turkey and she was super into it.  Some well-cooked veggies soaked in broth were offered next and she vehemently rejected them.  Water via sippy cup was accepted in small doses.  The next day she wouldn't accept anything.  A day or two of this and she would start loosing weight and getting dehydrated again.  She proceeded to feel worse and worse over the next couple days, cried a ton, and camped out in my arms with her cheek firmly planted on my shoulder.  We knew it was essential to get the NG tube put back in.  The very next day, after an appropriate amount of calories and fluids (all from a combination of Elecare, chicken broth, probiotics and some juice from Chris Vibberts' homemade sourkraut, she perked up.  I was elated!  All in the world was okay again.  Not so fast!  Yesterday I saw a new ulcer in her mouth.  I just about crumbled with sadness and anxiety and the only thing my body would do is walk.  So we walked.  And despite the mouth ulcer, Aylagator appeared to feel alright.  Today, she's back!  She's energetic, spry, sassy, smiley, and bossy.  NG tube and all.  I'm back too.

Taking over my computer session.  Whatever you want, baby girl.

PopPop leaves tomorrow or the next day.  Then we get Baba for a couple days, and then Boppy for a couple weeks.  Oh how we love the love...and help!