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.