End of First Grade

Annie is officially a Second Grader now -- and we have the 'last day of First Grade' pictures to prove it . . .

And just a couple cute pictures of her little brothers . . . 

Annie with her Spanish class at her 'High Flying Hawks Awards Ceremony'

Cousins

Greg's brother and sister in law came into town with their four kids, and my girls could not possibly be more excited to see their cousins.  Isaac thinks it's fairly cool.  Owen's indifferent :-) 

We've had so much fun with them here, with BBQs, pictures, zoo trips, and several other fun outings planned . . . and (not shockingly) I've tried to capture all the great memories . . . and therefore have countless pictures to share on the blog.  Enjoy.

Three Months

It was March 27th when we first met with a Pediatric Gastroenterologist, and within minutes she said, "Sounds like Ellie has Celiac."



April 2nd, the other three kids met with the same doctor, and the decision was made they also needed endoscopies because of suspicious symptoms.

April 5th was Ellie's first endoscopy. Annie and Isaac were a few weeks later, the 26th.  Owen was scoped last on May 3rd.

By May 8th, I had all of their diagnoses, and my world was completely turned upside down.

Since then I have felt some of my deepest lows, some of my biggest fears, greatest frustrations and anxiety like I never had experienced before.  But, I feel like things are starting to even out.  I'm not as afraid as I was, though it does roll over me in waves at times.  I'm relaxing a little, not on their diets, but on how their diets make me feel.

This Friday Ellie has her follow up endoscopy.  I'm excited (for potential good news), anxious, nervous and slightly bitter and grumpy about the costs.  Two weeks later the other three children will get scoped again (though we may push off Owen's scope for another couple weeks, I'm still waiting to talk to the G.I.'s office about it.)

I can't believe it's been three months since Ellie's first scope.  I can't believe in the last three months I've learned all about this disease, and we've transitioned to such a restricted diet.  I can't believe I've weaned my baby, because of a fear that I was doing him more harm than good.  I can't believe how many times, sometimes daily, I crumple under the pressure and sob to release it all.  I can't believe how many times my children have gracefully turned down food that others are eating, almost nonchalantly, and I can't believe how heartbreaking it is when that's not the case and I have to carry away a crying or screaming child from food other kids are eating. I can't believe how much my two year old tosses around words like 'gluten free diet' and 'we're dairy free'.   I can't believe Owen hasn't gained any weight in this last three months, and I am at a loss of what to do about it.

But, we're on our way to more answers.  Hopefully good ones.  Hopefully not more questions.  Hopefully our hard work and dedication in paying off.  And maybe by the time we go on vacation later this summer, my kids will be able to eat peanut butter and nuts -- 'cause, man, that would make things easier!  :-)

End of an Era

I'm on my third day without nursing Owen.  Besides being the first time I've weaned where I've felt a lot of physical pain, this has also been the most emotionally painful weaning I've experienced.  He isn't ready, and the rest of my kids were.  This morning after getting smacked upside the head with a phone, courtesy of his cousin Bailey, he was cuddled on my lap, crying and tugging at my shirt, asking, "Nur? Nur?"  My baby doesn't even call me 'Mama' or his Dad 'Dada', but nursing is one (maybe the only?) thing he asks for by name.  And I feel mean not giving it to him. 

But, I think this is for the best.  Stress has been my excuse to fall back into some unhealthy (and some not 'unhealthy', but not on the kids' restricted diets) food choices, and when I 'cheat', Owen 'cheats' by association.  And since he's my one kid who doesn't seem to be improving since his diagnosis, I've got to cut out every last bit, and that includes nursing.  It is too stressful for me right now to manage all of their diets and my own to perfection.  Also, all of my other kids shot up a couple pounds shortly after weaning, and I'm hoping that's the case with Owen.  (Though in the three days we've been breastmilk-free, he has lost a half pound, so um, not working yet.) Also, with nursing being a bit of a natural laxative, I'm hoping by cutting it out of his diet, it helps cut down on the diapers I change each day and how quickly things go through his system.  Also, I just recently finally saw his complete pathology reports from his endoscopy and saw that his gut had far more damage than they had mentioned to me on the phone. Even with Ellie having Celiac, Owen's gut is far more damaged ('villous shortening') than hers, 'causing a lot of malabsorption and digestive issues. I just want my little boy to feel better, but in the mean time I've made an appointment with early intervention, since he's missing milestones and I'm worried about his hearing.  It breaks my heart to think of him in pain, and to think that his tiny body isn't getting what it needs, unable to even absorb it, when we work so hard day in and day out to provide him with healthy food.  I sometimes wonder what damage has been done in the last 18 months, eating things that were killing his own intestinal lining, malabsorbing all the vital nutrients and vitamins he needs.  Is any of it irreversible?  Did we find out some of this too late?  Even knowing, have we changed what we need to, to make things better?  Because things don't seem better yet, and we've made countless hard change in the last several months, and he hasn't gained any weight, we haven't seen any improvements.  In fact, he now is suffering from eczema we'd never seen on him before, and he's losing weight again.

I held him today and read him a story, and eventually he stopped tugging on my shirt and helped me turn pages.  Sooner or later this 'not nursing' thing will become our new norm, and it will be good.  But in the meantime, this is kinda hard. 


Oh, and this is the first time in over seven and a half years where I have not been pregnant, nursing or both.  Weird.