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!       

Feeling alright, learning to walk, and stuck on Elecare

We're going on just over 3 weeks of Ayla feeling pretty well.  She had a cold in there somewhere, including a fever, and we swetted it a bit since viral infections in the past have very possibly triggered flairs, resulting in horrible illness and requiring extensive hospital stays. 

Photo taken during last hospital stay.  Feeling pretty miserable.

But she came out of it this time!  A "normal" baby cold?  We have no idea how to determine normal from abnormal at this point. 
She has been rather fussy on and off for the past week, but she looks pretty amazing.  We question whether she's teething, her belly hurts, or perhaps she's simply asserting herself more. 
NG tube is still in place.  Wednesday of last week I fed her chicken broth via NG tube.  She awakened that night crying quite a bit, and has done so every night since.  Could chicken broth really hurt her belly????  Since then we have gone back to an exclusively Elecare diet.  I think I may start her on broth again but just a tiny amount at first. 
The visit to Dr. Cowan was interesting.  He wants to put her on the GAPS diet, fermented turmeric (anti-inflammatory and probiotic), a therapeutic grade probiotic, thuya (to reverse negative vaccine affects), and low dose naltrexone.  He also would like to see her weened off of her current immunosuppresive meds: Imuran and Remicade.  Ayla's GI doc supports all of this except for the naltrexone and getting her off the other meds.  I haven't started her on any part of the new regimine yet and am still researching and debating in order to decide what to do. 

The adventure to walking has officially started!!!  Crawling is still the preferred method of locomotion...rather, holding onto the hands of Mommy or Daddy is greatly preferred, ensuring that we really will won't get anything done, ever! 

Sister and Brother stroller napping after a sunny downtown adventure.

The role of diet

Fingers raw and eyes weary from endless research to discover how we can help our little one feel well, gain weight, reduce inflamation, eliminate ulcers, absorb nutrients, grow, develop, reach milestones.  Today she still has her NG tube.  She consumes 900 ml/900 kcalories of Elecare per 24 hour period.  I am starting to introduce broths again, with the intention of transitioning her fully to the GAPS diet (http://www.gapsdiet.com/).  So many people are healing and sealing their guts using this diet, and are achieving remission (dare we call it a "cure?") for decades.  We have an appointment tomorrow to see Dr. Cowan in S.F., a doc recommended by our acupuncturist and a friend of a friend (whose son has been grappling with a "failure to thrive").  He is well-versed in the GAPS diet and is known to integrate treatments from various traditions.  I look forward to his input and an introduction to a new pathway to health for Ayla.

A few days back I found myself sobbing on the phone to a social worker we've been working with, and through our conversation I'd realized that I had stopped exploring options to heal our little girl.  I got tired.  On one hand, seeking various forms of treatment is incredibly empowering, especially when it appears that one is getting results.  On the other hand, it's exhausting and costly, and prevents us from snuggling up to that cozy state of denial when she's doing well.  But then, as the pattern goes, she gets sick again, and we're funneled into the hospital, where she needs IV fluids just to get her back to functioning, and then a blood transfusion because she's so anemic, and then an NG tube because she won't consume the calories necessary to function or grow, and the labs to ensure she doesn't have a serious infection before she gets her next Remicade infusion.  Really?@#!!!  I continue to be baffled by all of this.  For the last couple weeks she's been feeling quite good.  For the last few days she's been stellar.  If it wasn't for her NG tube, nobody would be the wiser.  So today I began implementing the GAPS introduction diet.  And tomorrow we see Dr. Cowan.  On to the next chapter.......

Daddy and Ayla (with NG tube....still out and about)

Jonah still having a blast!  LOVE it!!!

Gratitude and a Silver Lining

PopPop and Jonah

Granpa and Jonah

Grandma and Grandpa

Auntie Carli, Jonah, and Daddy

Jonah and Grandma

Boppy, Grandpa and Grandma (sorry for the poor quality!)

The outpouring of love and support that we have received in the past 6 months brings tears to my eyes.  Our families come up to stay with us for long stretches of time just to help us function and keep the smiles flowing.  I swear I think they have sprouted wings and become angels. 
Currently, Carole, my most amazing Mother-in-Law, is staying with us.  She cleans the house, does our laundry, cooks amazing dinners, and plays with the kids.  Her steadfast cheer is an added bonus.  My Father-in-Law was also just here for a week.  He finds all kinds of projects to do: pool cleaning, gardening, assembling toys, etc., and he's the king of dishes.  My mom comes up for weeks at a time, helps with just about everything, and finds all sorts of ways to make our house more organized and efficient.  My dad came up for a week not too long ago (and has another trip up here scheduled soon) and floored me with his hero-ness in just about every way.  My step-mom, Janine, has come up (also planning another visit soon), powers through laundry like no other, cleans like mad, and treats the kids with goodies she has collected since her last visit or shipment.  Auntie Carli has taken many days off work to hang out with us in the hospital, bring me lattes, keep the cheer, and be my rock when I need support the most.  She also comes to our house, grocery shops for us, and plays with the kids so we can sleep!  Uncle Mark has stayed with us, offers great moral support, has cooked for us and keeps the kiddos entertained.  Friends have dropped off home-cooked meals, had food delivered, left flowers and cards, and even given us cold, hard cash.  Calls, texts, and emails poor in, offering to take Jonah for playdates, drop off/pick up from school, take Ayla for walks, accompany me during doctors appointments, and hang out with us in the hospital.
If anyone ever doubted the love and goodness in people, let me assure them it is not lost.  There's nothing like a crisis to bring out the magic in humanity.  I'm not sure I will ever be able to repay anyone, and I realize nobody is asking me to.  Each day unfolds before us, bringing forth a fascinating concoction of anxiety and gratitude: dark clouds with a bright and shiny silver lining. 
I don't know how I can ever thank any of you enough.  My heart swells with appreciation for every little gesture to make our lives a little bit smoother.