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IMG-4513.JPGAbby’s diet consists of 90% fat.  Fifty percent of the fat she consumes is in the form of heavy cream.  Specifically, the heavy cream she consumes is special 6g of fat per serving cream.  Most heavy cream available in stores is 5g per serving.  For comparison, whole milk (which contains a ton of carbs and isn’t suitable for the diet) is 4% fat, her cream is about 40% butter fat.    The 6g fat cream isn’t easy to come by.  Trader Joe’s sells it, but they don’t always have it.  Organic Valley and Stonyfield Farms also have a 6g cream, but only Whole Foods carries either of them regularly – and even then you have to be careful to check labels to make sure you’re getting the 6g cream.

Some independent dairies make 6g cream, but you have to contact them directly to find out.  It’s not simple.

CHOP has also partnered with WaWa to provide the special 6g heavy cram.  WaWa makes a 6g heavy cream but it is not typically available on shelves in regular Wawa retail stores.  However, for CHOP’s keto patients who live near a WaWa store, WaWa will special order the heavy cream and have it delivered to your local store weekly.  This is amazing.  It saves me having to track down the cream every week and takes some of the stress off.  Still, I was wondering exactly what this was going to cost me because this diet is *expensive* (the gram scale alone costs $200 and CHOP recommends we have two of them… fat chance!) .  Imagine my surprise to discover, upon speaking with their corporate offices, that the cream would be provided to our family *free of charge* for as long as she was on the diet.  Two quarts a week as a baseline, but if we need more, we just need to call.  If we are traveling and need to switch delivery to another store, just call.  If we need less, just call.  No questions asked (we did sign a HIPAA release so that CHOP could send a letter of medical necessity first).

We even received a WaWa Mascot in the mail!

Obviously, WaWa doesn’t get *nothing* out of the deal.  This week when I went to pick up Abby’s cream, I also picked up milk, which I wouldn’t normally ahve done at WaWa, but since I was there anyway…  And Sam was with me and he wanted orange juice, so…  It was a win for WaWa, but I still consider it a win for us.  It’s amazing that WaWa does this and I will sing their praises from here until eternity.  They also do a lot with funding programs for food insecurity and have endowed CHOPs volunteer program (they distribute complimentary beverages twice a day to the inpatient floors.  (of course, they also get to plaster their name all over the hospital as part of the deal…).  I’m still proud to say we are part of the WaWa family right now.  Every little bit helps… and this is a lot more than just a little bit!

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IMG-4473Yesterday marked an important milestone:  Abby’s body officially begun the transition into ketosis – her morning blood ketone levels were over 2.4.  The team here looks for anything over 1.5, so she was well beyond that.  She is now, officially, a KetoKid (TM).

 

 

 

 
This was a huge and happy milestone and she earned a bajillion stickers on her sticker chart (note that each chart is for one full day):

 

sticker charts

Each time she fills out a chart, she gets a big-ish prize.  Yesterday was a fidget spinner and a barbie-knock off doll from the dollar store.  The key to keeping her engaged has been lots of positive reinforcement and as little focus on negative behaviors as possible.  The same behavior management/parenting techniques that are tried and true remain true for a keto kid.

Despite yesterday’s successes, it was still a tremendously difficult day.  In addition to the difficulties of the diet, I found out first thing in the morning that my cousin had died so my emotional reserves were toast.  Combine that with Abby having an extremely hard time managing the switch to a 4:1 ratio yesterday, and it was the hardest day so far and we still have training wheels on.  The test comes when we are home navigating this ourselves.

One very frustrating thing is that Abby is *very* hungry.  Some of this is psychological – the meals are small and you have to make a psychological shift in what your relationship with food looks like.  Some of the hunger is to be expected (her stomach is used to larger, bulkier meals).  But some of it may be that the meal plan wasn’t sufficient calories for her – this was definitely a possibility as her blood sugars took a precipitous drop on Wednesday, so we added another 160 calories to her diet (in the form of a second snack) and we are hoping that will correct the issue.  It did seem to correct her blood glucose but she’s still ravenous.  Hopefully that will shift soon.

But that brings me to another issue – she is sneaking food every chance she gets.  I know she’s not just doing it impulsively and forgetting she can’t have it, because she’s hiding it (badly) from me.  Sorry kid, but the mini-sugar-free-chocolate chips all over the floor were a dead giveaway.  I’m worried because she was already a bit of a food sneaker even with free access to fridge and pantry.  This diet is not going to make things easier for her and will likely exacerbate that behavior in the short term.  We may need to get locks for fridge and freezer and the pantry.  Hopefully this behavior will self-correct before it’s a huge problem.  For Abby, the practicalities of sneaking food are that when (not if) I find out that she snuck food, I have to do my job to give her brain protection against those carbs – whether it’s a lick of a lollipop, a handful of cucumbers, or a giant cookie, the treatment is the same:  Give 1 fat exchange (serving) in addition to the rest of her meal plan to compensate.  This means that in addition to the fat she’s already ingesting, she has to have 4 grams of canola oil, or 5 grams of butter, margarine or mayonnaise.  No kid wants to do that, but Abby’s ADHD of course keeps her sometimes from thinking through the consequences of actions.  So who’s the bad guy?  Moi.  Who else?
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People speak of this mythical lethargy that hits kids when they are making the change over from carb burning to fat burning (entering ketosis).  I was starting to believe it wouldn’t happen, but while Seth and the other kids were here visiting, Abby fell asleep and took a several-hour nap.  When she woke up and ate her pre-bedtime snack, she perked right up and was then completely bouncy, but crashed again shortly therafter.  I can’t say I was totally hating the nap.  More of THOSE times, please!  (but not forever – I’m still a Jewish mother and I worry)

I have a draft post started about the meal-planning, math, and recipes, but I’m tired – I only slept for about an hour and a half last night and have no real time left during the day before (hopefully) discharge.  Today I’m basically on my own in terms of figuring out what to feed her (the team will check my calculations for me if I want them to – and they will do so even after discharge if I email them copies).  As soon as we get home, assuming there’s time, I’ll cook a couple things for her to get through Shabbos.  Otherwise, there are plenty of other things.  The most important thing is that I’ll need to preweigh anything that I can before Shabbos starts, but that should be easy enough.  I hope.  It’s hard to believe the training wheels come off today.  It’s scary, but it means that Abby is doing well.  If she weren’t stable, they would not discharge her and it looks likely that we *will* go home this afternoon.

The team here has been amazing.  They’ve adjusted her calories, worked hard to find options that will make Abby feel mostly normal, and they’ve bent over backward to help me find foods that will keep Abby excited (or at least, begrudgingly willing) to keep trying her meals.  She’s been a real superstar.  She’s almost at the edge of being on the older side in terms of kids for whom the diet is most successful (in terms of compliance) – a baby never knows anything different, but an almost 10 year old knows exactly what she’s missing out on.  The whole team is absolutely astounded at how well my ketokid is doing and we are just so grateful to CHOP and the KetoTeam for *all* that they do.

More later, but I’m off to class!

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CHOP KETO ADMISSION: DAY ONE

Today was admission day for Abby to start the Ketogenic diet.  The best I can say about today is…. at least we have set the bar low for tomorrow… after today, even the tiniest success will mean that it was more successful than today.  We haven’t exactly gotten off to the *best* start.  For one thing, we arrived late.  It was mostly my own fault.  I had too much to do and I messed up.  My husband had a mid-day appointment and I should have told him to take the car, not the van, so that I would have had more freedom of movement, rather than feeling like I was stuck at home while he was away, but I figured I had plenty of time.  Except we didn’t.  Abby’s admission time was 3pm, which meant we needed to leave the house at 2:30 at the latest and… well, we didn’t leave on time.  And I forgot a few things, and packed way too much of a couple of other things.  But don’t sweat the small stuff, right?

I called CHOP on the way and told them we’d be here before 3:30 and they said, “No worries – we aren’t closing or anything.  Thanks for calling!”  We were, indeed, here before 3:30, so we weren’t *that* late.  Nothing much happens on Day One anyway – the restrictions of the diet don’t begin until breakfast tomorrow, so that’s good.  Abby was still able to eat normal food right up through dinner.  But no pre-bedtime snack, other than water.  Fair enough.

We arrived on the floor – Abby, me and our entourage, since Seth and the other kids came with us to help Abby get settled – and found out that the kosher keto family (I’ll call them our “keto-coach” from this point forward) that’s been helping us get acquainted with the ins and outs of the diet and who have been true cheerleaders and absolutely indispensable to me throughout all of this had left a package for Abby with some presents fro- sugar free snack-pack gelatin (like jello cups), a bracelet/charm making craft project and a quilt-tying craft project.  What a relief.  She was delighted, I had another keto-friendly (and kosher) food I could give her, and now I had two other new activities for her to do while here!

abby CHOP admission day
Shortly after we got to Abby’s room, one of the kids asked for gingerale, and I went to the nutrition room to get some and next thing I knew, I slipped on a patch of water that was on the floor and … well, I was on the floor, too.  I banged my knee and elbow pretty badly and my hip (the arthritic, sciatic one) had shooting pain going through it.  Seth came running when he heard me cry out and he got a nurse.  I got band-aids  (I was bleeding!) and ice packs and then things just kept seeming to feel very busy, so I sort of forgot about it…. until later when things were quiet and I realized how much everything hurt.  UGH.  This is going to hurt for a while.  Ugh.

Of course I realized a few things I’d forgotten which was bound to happen.  Seth will bring them tomorrow.  Much, much later when I was unpacking everything, I was talking to a friend (R) and suddenly…. I realized I did not have our gram scale.  The gram scale is vital for the diet.  Without it, she can’t do the diet.  I MUST HAVE IT.  I called Seth in a panic.  Obviously I didn’t pack it.   Except I distinctly remembered packing it!  It was the first thing I packed so I wouldn’t forget it!  I must have taken it back out of the suitcase when I was rearranging things so I must have left it in my bedroom.  But Seth couldn’t find it anywhere.  He sent me photos of my entire bedroom (which made me realize how badly I need to clean and organize my bedroom!) to prove it.  It wasn’t in the kitchen, it wasn’t in the basement, the garage, dining room, no where.  It wasn’t in either suitcase, any of the drawers I’d put things in, not the cabinet, not on the desk, not the bathroom, not on top of the fridge.  How had a $200 scale disappeared.

I texted my keto-coach in a dead panic.  Not to worry, she said.  Take a deep breath.  They have extra scales on the unit.  She knows someone with an extra scale in Lakewood and Chai Lifeline comes down from Lakewood every single day with food, so they can bring the scale to me before the end of the week.  Take some deep breaths, stop worrying, get some rest or at least read a mindless book, she said.  I couldn’t help it.  I was panicking.   I felt so stupid.  How could I have forgotten this essential item?  How could I have *lost* this expensive tool?  How were we going to afford another?  Once the freakout program had been started, there was no going back.

Finally, I decided it was lost forever and I needed to sit down at the desk to work on something else.  I pulled the chair out and… there it was.  On the chair.  Because yes, I *had* packed it, and I’d already unpacked it and I’d put it on the chair so that I could get it set up on the desk.  But then I had shoved the chair under the desk and… didn’t see the box anymore.  Eek.  I called my friend R back, told her I found the scale and she said that’s great!  And I said, yeah… and then I burst into tears.  “I can’t do this.”  “Yes you can.  You can because you don’t have a choice.  If it were my kids, they’d be in trouble, because of all the math – math and I don’t mix.  But your kid is going to be fine. You’ve got this.”  Somehow, I made it through without going into a full on panic attack.  Which is ridiculous regardless, because there never was anything to panic about.  I am certain I wouldn’t have been the first person to not have a scale.  They’ve had patients who have been placed on the diet as the result of emergent circumstances rather than planned admissions – those families don’t come with all this equipment in hand.  Obviously they have ways of handling it.  But, like I said, once the freak-out program was engaged, it had to run its course.

And then, when I thought it was all going to be okay?  I lost a filling.  Because this is MY life and it wouldn’t be nearly complete if I didn’t have just one more thing happen to top it all off.

I quit.  I’m going to bed now.  Tomorrow had better be better.

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For a long time, I’ve thought that I’d like to get this blog going again, but something is always in the way.  Still, I feel the void left by not having this outlet that I used to have during my darkest years.  For all my years struggling through infertility, this was my place of solace, of solidarity with other (far more clever, witty, intelligent, and strong) women going through the same journey, albeit each with our own paths.  Even after my children were born, I found joy in documenting all the little firsts, the struggles, the joys.  But the realities of my life started to make me feel too heavy to make my fingers move across the keyboard with quite the same regularity.  Until, one day, my cathartic blog posts became so infrequent as to stop all together.  Life as a special needs mom, life as a chronically ill mom, life as a disabled ex-professional-turned-homemaker… I couldn’t bring myself to write much more than quick, smarmy FaceBook posts about it – brushing off the challenges as hilarious little vignettes in the screenplay of my life.  But without the catharsis of this process of journaling, no matter how many people support me, I too often feel alone with the challenges we face, when I know from experience I most certainly am never alone.

So, this is me.  Wife, mother, sick person.  Unabashed advocate for the needs of my children – who are all special, though some are more needy than others.  If you don’t remember me, well, that’s because I wasn’t that memorable, or well-known in the first place.  Let me reintroduce you to the cast of characters in my adventure.  Maybe next time I’ll throw in some photos, but mostly I don’t want to put that kind of pressure on myself just yet.  I just want to write and see where this takes me.  So … the cast of characters:

The J-Man: Not really a current cast member, but an alum who never leaves my thoughts very long, so I feel the need to mention him since he is bound to appear periodically.  Our first son, the J-Man came into our lives when he was a year old.  We were asked to foster him for a year, but we had him for nearly seven.  At the time that his genetic donor (I can’t bring myself to call her his mother anymore) called me and said she wanted him back, we hadn’t heard a single word from her in over four years.  It was a shock.  We spent a year litigating to ensure a safe, secure, and emotionally sensitive transition from our household to hers.  But I recently found out that he’s not even living with her anymore.  As I understand it, she can’t stand the sight of him, so she dumped him on a relative.  When I found that out, I stopped calling her his mother.  *I* am his mother.  I always was and always will be, even if I never see him again.  We have no contact with him.

Sam-a-lama-ding-dong: (he hates when I call him that, so I try not to do it too often).  My vroombunctious 9 1/2 year old boy.  He is so many things that it feels inadequate to simply mention his diagnoses, but I would be remiss in failing to mention that he is autistic and has ADHD.  He probably is also bipolar or at least has some sort of mood regulation deficit.  But none of those things are who my son is.  He’s sweet and kind, funny, though he doesn’t always mean to be.  Rigid, but working on it.  Smart.  So smart.  He’s just a kid in all the ways that matter.

Ellie-bean:  My sweet Ellie is also 9 1/2.  She’s smart and curious and chatty and considerate.  She is filled with empathy, quick to laughter, extremely thoughtful and has 87 questions about everything.  She and Sam have a particularly close bond, which is such a joy.  Ellie has pretty severe asthma, but she never lets this get her down, so I don’t either.

Abba-Dabba-Doo-Bah:  My other 9 1/2 year old (yes, they’re triplets.  No, they aren’t identical.  Yes, they are natural – they aren’t made out of a space aged polymer.)  Abby is ALL of the feelings.  She’s funny and sweet, but moody and sad a lot of the time.  She is quick to laughter, impulsive and very in-the-moment.  She doesn’t dwell on the past and isn’t bogged down by worry about the future.  She is simply carried by her particular mood right here, right now.  Sometimes that makes life particularly easy for her, but othertimes it means she’s stuck in a sea of confusing emotions.  Complicating all of this is that in addition to having ADHD, she has what is called “Treatment Resistant Epilepsy” (or intractable epilepsy).  She is the reason I’ve decided to restart this dusty old blog.  Our path toward trying to treat her epilepsy has been a difficult one and we are about to embark on the next leg of our journey by enrolling her in the medically prescribed ketogenic diet program in hopes of finding relief for her and hopefully improved quality of life for all.

The Tobe-ster (Tobie):  My 7 year old demon-child.  She gives the best hugs and smooches and is still super snuggly. She’s the only one who still wants to be tucked in at night and only Mommy does it right.  She’s self-assured and bossy.  Quirky and fun.  Happy as long as she’s getting exactly what she wants every minute of every day.  She is… special.  She’s 7 going on 17 going on 27.  She doesn’t like to work too hard, but she does love to play hard.  There’s nothing that delights her more than dirt and puddles.  Except, perhaps, mud puddles.

Seth (no nickname): Husband extraordinaire.  Pharmacist.  Father of the Year.  Seth just started a new job that takes him away all week so he’s only home on weekends, which makes some of this stuff even more daunting, but he is always there when I need him (just sometimes via phone instead!) and he is a very present father despite his current employment situation.  I’m grateful to have such a wonderful partner in our parenting adventure.

The Plot:  Over the last several years, there have been a number of times when things have been so funny or joyous or challenging that I’ve had invisible posts written in my head that never make it to the cyberspace version of paper.  But now, we are about to take on a new challenge – one which will test us in new ways.  We are about to enroll Abby into a medically prescribed ketogenic diet program.  This will require a significant lifestyle change for the whole family, but most especially for Abby and for me.  The impact will be felt by us all, though, and I feel that I would be doing our family a disservice if I didn’t document the journey and use this as a resource for working through ALL THE FEELINGS that come along with such a complex and overwhelming path forward.  I doubt the blog will always be about the diet – I have three other complex kids and a difficult medical condition of my own, so I’m sure there will be much of those things as well.

I hope that ultimately I’ll find this space to be a positive one, but for the moment, bear with me as I work through all the feelings I’m experiencing right now.  I admit, most of them aren’t positive:  fear, worry, anxiety, etc.

But … for the first time in a long time, there’s hope as well.

More to come!

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