She's Back!

 You know, I find it kind of crazy, and I bet you will, too, that this blog was last updated on May 19th, 2014. Little 3-year-old Ayla was still struggling with Crohn's disease and doing her best to survive her storms with a smile. Now, it is February 14th, 2025, and I’m almost 14, and boy, has a lot happened in 11 years.

I can't tell you how many times I’ve looked up this blog and admired how far I’ve come. From the start, I've been fighting battles I didn't sign up for, but from the start, I've been surviving battles I didn't sign up for. But I’m not the only one. My brother, Jonah, who is 16 now and has newly acquired his driver's license, had fought Lyme disease for years before getting into a deep remission (might I even say cured?). He started to get sick when I was in second grade. Mold had filled our school's walls to the brim, and while I was slightly sick from it, it was nothing compared to what my brother went through. It had seemed like his body completely shut down on him. He got regular fevers, and his body became so weak he needed a wheelchair to get around, and that was only what I could see from the outside. The rest of his hell was on the inside. We both left school and, at some point, temporarily moved in with my grandma, Boppy, my mom's mom. I probably won't remember most of the timelines right, and I’m writing this going off of pure memory of my own, so I’ll do my best to tell it realistically. 

We moved in with Boppy because we found mold in our house. So my dad stayed behind for work and to get rid of the mold in our walls. At first, my mom, Jonah, and I stayed with Boppy for three months. I had never felt so homesick, and I missed my dad more than anything, even with his visits every now and then. 

When my brother was feeling better, and we thought we got all the mold out, we moved back into our home in Petaluma. Unfortunately, this only lasted about a month until Jonah once again got sick, and we found more mold. This time, we stayed at my grandmas for eight months. We were also still being homeschooled, and I had no friends down south, so it was extremely isolating. During this time, COVID-19 also started, talk about isolation, now I couldn't even leave the house! 

At one point during our second stay at Boppys, it had been many months since I had changed my G tube (or Mickey as I liked to call it). It was about time for a change because my usually white/gray tube was starting to show pink! But since I hadn't been needing any liquid medications in a while, could eat on my own, and didn't have an extra G tube to change with, we decided to take it out for good. Because replacing my tube had proven incredibly painful in the past, it took me two hours to finally muster up the courage to tell my mom to take it out. To my surprise, it was barely painful this time at all! I guess it was the insertion of the new tube is what really hurt before. Now, it's easy to find where my stomach is by the round, hole-looking scar on my stomach. Knowing little Ayla, you have to count on me making an iconic name for it, so, of course, I named it after what I thought it looked like. A bullet hole. 

directly after I got my G tube out

Although I was no doubt struggling with depression and probably anxiety at my grandma's, I was physically doing extremely well. A year or two after we came back to Petaluma for good, I got my annual colonoscopy done (every 10 years, I need to do one) when I was 11 and in the 5th grade. Tests came back to show that I was in deep remission!! I'm so grateful that I could celebrate that victory with my fellow IBD friends that I had met in Camp Oasis not long before. I had no idea how much I needed to be able to relate to kids my age until I met the people who understood me on a new level. That first week, I still know and remember as the best week of my life, on the last day and night, so many tears were spilled we probably could have filled up a swimming pool. We kept in touch and occasionally visited each other throughout the year, and then the next, and then the next.  Unfortunately, one of the reasons we cry so hard at the end of each Camp week is because, for me, at least, the closest Camp friend is eight hours away. But we were able to survive by keeping in touch the best we all could. 

Camp Oasis 2024 (Rock and Roll breakfast)

Because I was in a deep remission, I was finally able to mostly let go of the diet that both kept me healthy and restricted me from so many things in life. No dairy, wheat, corn, grains except for rice or oats. Although I am grateful for how much that diet has done for me, you would not believe how far a diet can go from a food restriction to a restriction of life. And although that might seem a bit exaggerated, my whole life, I had lived in almost constant fear of eating the wrong thing, thinking that just a bite would cause me the excruciating pain I was unfortunately familiar with. At friends' houses, I would read and check the ingredients myself even after the parents said they had done it for me, at every class party, I couldn't have any of the food, and I would see friends and family eat delicious foods in front of me that I couldn't have. Finally, I could let go of most of it and expand my food range. But of course, I didn't let it go fully and still restricted myself a little bit with corn, dairy, and wheat, but I didn't feel the need to hold on to the fear of accidentally eating something I shouldn't. It felt so good to not be so disappointed at grocery stores. I was finding new foods, and I could finally have food at class parties.

During this time, I was also really into dance. I was participating in talent shows at my new school and going to dance classes twice a week. About two or three years into dance, I decided to give it a break in early 7th grade. I thought that I would just be stopping for a season and would come back later, but it turned out to be permanent. Around this time, I started to feel nauseous quite a lot, but it wasn’t really interfering with my everyday life because, thank god, I never threw up. I went to my pediatrician, and they gave me Zofran, an anti-nausea medication to take as needed. 

In 2024, I slowly started transitioning myself back onto my food restrictions, but this time, it was only dairy, gluten, or corn. I did this because we had no idea if my nausea was because of Crohn’s or not. 

Fortunately, and very unfortunately, one of my best friends, Luca, had also been extremely sick and was eventually diagnosed with celiac disease. We both started going on a gluten-free diet at around the same time, though hers was much more severe, and I would do anything to take it all away from her so she could go back to her normal life. Because of our autoimmune diseases, we’ve bonded so much more than I thought possible through the support we give each other.

Luca!!!💗💗

I barely remember which symptoms came first and when, so I'll do my best to tell it as realistically as possible. Around the end of 2023 and the start of 2024, I was getting menstrual pain almost throughout my entire cycle, and the pain was pretty bad, too. Around the same time, constipation started to come into play. Though at first it wasn't too terrible, able to mostly treat it with Miralax, and when I got it all out, that was usually the end of that for a while. The next to come in was leg weakness. Just like most of the others, it starts not too bad, every once in a while, my legs would start to feel incredibly weak for maybe a couple of minutes. This would happen a couple of times a week, and although it was something that I brought up in doctor's appointments, It never seemed like a concerning symptom. Leg weakness kind of came into play with lightheadedness, even though I had been feeling lightheaded for longer, they were both things that made me want to fall or go to the ground. 

Now, here is where I almost completely lose track after the leg weakness with what came first because, after that, it was just a parade of different tiny symptoms coming together in a shared passion for making me feel terrible. After this, I started to feel dizzy, my head started hurting constantly, I became extremely fatigued all the time, and I gradually started to lose my appetite. In early October, I got a colonoscopy to see if this was all my Crohn’s, tests came back to show that I was out of remission but not in a flare. Good and bad news for multiple reasons. Even with all of those symptoms, I was still able to go to school, go for walks, hang out with friends, and still live a relatively normal life. I didn’t gain many more symptoms after this, but they did get worse. That's when I started not to handle things so well. 

Nausea turned from temporary to all the time, constipation became chronic, Miralax stopped helping and only made me more nauseous, leg weakness turned constant, and I started falling from it, lightheadedness started to come at more times than just standing up, my appetite became rare, and I started to lose weight, and I became so dizzy I could barely see straight. In December, I went to the hospital for a week because I was physically unable to pass any stool, especially without extremely intense pain. Walking was proven very difficult, and I had lost ten pounds in the previous week because I was unable to eat.

both of these photos are in-patient in the hospital
this one is getting ready for an MRE

getting an ultrasound

In the hospital, they started me on a clean-out and inserted an NG tube to do so. It took three rounds and 2-3 days to get almost all of my stool out, and my in-patient doctor said it could take up to 2 years for my intestines to go back to normal without getting constipated again. I was put on IV nutrients and was offered to be fed through my NG tube because of my lack of ability to eat. 

Now, it is February, and I haven’t been to school since my hospital visit. I am still undiagnosed and a medical mystery once again. Except this time, things are different from when I was younger; for example, I’m able to talk and speak for myself.

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Donation time!

Dear Family and Friends,

On July 20^th, I’ll be running my second half marathon in honor of Ayla, my tenacious 3-year-old daughter who has struggled with Crohn’s Disease since she was 6 months old.  As of now, there is no cure for this debilitating disease and the current drug therapies carry many scary risks.  But in the two years that I’ve been paying such close attention to medical science, I’ve witnessed some tremendous strides in research that brings big hope to our family.  Much of the money that pays for this research comes from the Crohn’s and Colitis Foundation of America (CCFA), the foundation benefited by my half marathon. 

Ayla’s symptoms have included severe pain from hundreds of intestinal and oral ulcers, vomiting, chronic nausea, diarrhea, bloody stools, horrific body rashes, unremitting fatigue, and for a time, the inability to walk.  A cocktail of drugs, including Imuran (a chemotherapy), Remicade (an immunosuppresant) and antibiotics (a gut flora terrorist), have had her Crohn’s largely under control now for 8 glorious months.  We’re grateful for the state of comfort that her therapy regime brings, but we’re tremendously fearful of the accompanied risks of serious infections and cancer. 

Despite the absence of her Crohn’s symptoms, Ayla has still spent a tremendous amount of time in the hospital over the past several months.  After too many painful pokes to count, xrays, and a surgery to have her port-a-cath (central line) removed, we discovered she had pneumonia.  Her compromised immune system was definitely at the core of this illness, which is why we need better treatments and a cure for Crohn’s Disease. 

As the Team Challenge fliers boldly claim, last year’s half marathon was LIFE CHANGING.  On race day I was met at the finish line by my smiling, cheering, sign-holding family and friends.  The flood of emotions was tremendous and it brought me to tears.  During trainings, I connected with people who ran furvidly despite struggling with Crohn’s or Ulcerative Colitis.  They helped reframe my view of our situation.  I began to see that my family and I don’t have to live our lives as helpless victims to Ayla’s diagnosis, and fundraising for CCFA is a way to actively participate in finding a cure.  As Ayla’s mother, and an advocate for all those with these diseases, I am fired up to seek answers and find solutions. 

Please help me find a cure for Crohn’s Disease and Ulcerative Colitis by donating in whatever capacity you can, and by passing this request along to others.  Over 80% of your dollars go directly to research, and I assure you, big things are happening in genetics and microbiome research that will lead to a brighter future for Ayla! 

As you all know, this has been an unbelievably rough road for us.  The support that we’ve gotten from you, be it emotional, monetary, or culinary, has been THE thing that has gotten us through.  Our ability to stay focused (mostly) on silver linings is entirely a result of the love and support we receive, in all of its forms.  Please know that your donation is not only helping to find a cure, but it’s helping our family stay positive and strong, and we are INFINITELY GRATEFUL for that.

Your tax-deductible donation can be submitted on my fundraising webpage at http://online.ccfa.org/MenoReiner.  All donations must be received by July 8^th.

Steve, Jonah, Ayla and I thank you for your support, and wish you wellness beyond your wildest dreams. 

All my best,

Meno Reiner

Hospital Frequent Flyer

Although Ayla has had great relief from her Crohn's in the past 6 months, she certainly has not steered clear of the hospital.  In fact, we just returned home yesterday from a two night stay at the luxurious CPMC in San Francisco, and this was our fourth visit in 6 months.  

I am very public about when Ayla gets sick.  Our extended family and all Facebook friends know this well.  For one thing, it increases overall awareness of Crohn's disease, which is so important.  This disease is so widespread and yet so publicly underrepresented!  But my main intention for announcing Ayla's bouts with illness is to gather positive energy for a quick healing.  We ask, and our people are so generous with it.  It makes us feel loved and supported, and more importantly, it works for Ayla!  Her acute illnesses have been quick, and our stays at the hospital have become shorter and shorter.  We are blessed with SO MUCH LOVE, it's ASTONISHING!  Keep a lookout for writings in the sky: "Ayla Rae now accepting prayers, love, positive vibes, intentions, and meditations!"  

I would like to give a proper explanation for why Ayla is in the hospital so much, despite her Crohn's being under control.  She is on 3 pharmaceuticals to control her symptoms, two of which are immunosuppresants, which leaves her far more apt to pick up a bacteria or virus than a healthy child.  Once the bug gets in her, her illness is more intense, and seems to last longer (even abrasions take longer to heal).  One of Ayla's medications, Remicade, is administered intravenously every 7 weeks.  Two years ago we had a port-a-cath, which connects to a central line, surgically placed in her chest to make these infusions and her copious blood draws easier.  

Here's her "port" when it's not accessed at the hospital.  However, usually it doesn't have those three red dots on the bottom left.  Those were a result of an access gone bad.  Poor girl was very upset that day.

Like all other medical interventions, a port-a-cath comes with risks, and with this is it a possible CENTRAL LINE INFECTION = DANGER!  Anytime Ayla gets a fever of 101 or higher, we have to suspect a central line infection and take her into the hospital for testing and IV antibiotics.  

So now you might be able to imagine this cycle of madness: Immunosuppression + Central Line = Hospital Frequent Flyer.  

Can we please get some miles for this???

Unfortunately this last hospital stay also fell on her 3rd birthday.  Yep.  LAME!  But we did manage to squeeze in a sweet little birthday celebration before we realized she was sick... 

She enjoyed her party despite her lack of energy.  We were vaguely suspicious that something was off, but had no idea a 103.4 fever was around the corner.

Custom-made birthday crown for our SuperAyla!

And we did more celebrating in the hospital...where everybody knows her name (sung to the "Cheers" tune, of course).

Daddy brought in a large suitcase of gifts that had yet to be unwrapped before our rapid departure to the hospital.

We just got back in our cozy home yesterday.  Let's hope/pray/meditate/etc that we're here to stay for a very very very long time.

Kicking off the 2014 running and fundraising season

I knew I was taking a blog hiatus but I had no idea it would be an entire year! My last post introduced what would be my first of many fundraising efforts for CCFA and half marathon trainings with Team Challenge. Here are a few moments from last year...

Mile 5 on a hot training run last season

Upon seeing my superstar kiddos at the finish line with these signs, I cried of course.  My sister, hubs, inlaws, and neighbors were there too.  It was nothing short of fabulous.

My running partner was THE BEST!   

There is a tremendous difference in my state of mind going into this second year. I show up to training not knotted up in fear of my daughter's condition, or wrung out from the previous night's vomiting episodes. I am rested, confident, and fully grounded in a calm and happy existence because Ayla has had a six month stretch of AWESOME (with three "minor" exceptions). 

Feeling 100%!!!!!

About seven months ago, we discovered that in addition to her Crohn's, Ayla had a bacterial gut infection called Clostridium difficile (aka: C Diff). The poor thing was miserable. Excrutiating belly cramps, projectile vomiting, painful stools 12 times a day. She was wrecked. As was the rest of the family. We ultimately treated her with a "big gun" antibiotic called Vancomycin. Within 3 days she was on her way to being clear of C Diff AND of her Crohn's symptoms! When "Vanco" is used intravenously, it is a bigtime antibiotic with serious implications. But we're using it orally, and the drug does not get absorbed into the bloodstream so it essentially keeps her gut clear of the bacteria that have been wreaking havoc on her GI tract, without straining her other organs. Of course this means that she also has virtually NO gut flora, which also has its implications. But for now, this is what's working, and nothing until this point has given her relief like this. 

We have witnessed this child be reborn in a way. Ayla's development has now had 6 straight months of free reign. She laughs as she races her brother around the culdesac. Mind you, he's on a bike and she's on foot. And she keeps up! Her language development has soared. Our ability to communicate with her about how she feels and what we can do to help her is so much greater now. Her height and weight are right on target, which is truly a gift in the pediatric Crohn's world. Ayla and Jonah have been able to develop a "normal" sibling relationship now, instead of one revoloving around Jonah's sick little sister. 

I am entering this new fundraising and training season feeling charged, empowered, and excited. We don't know how long this drug will work for Ayla, so we feel more than ever that we've got to get a move on with this finding a cure business. Stay tuned for the soon to be released "ask" letter. Or, even better, train and run with me!!! 13.1 miles of running through the carneros valley vinyards to be met at the end with wine tasting, pool lounging, and celebrating. Anyone? Anyone?

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.