Boil, Blend, Repeat

Things around here are hard.  There is truly no coating that over with much, and certainly not anything sugary or filled with corn.  Everyday we boil, blend, and repeat. And repeat again.  In the middle we work, do laundry, try to feed the family, and look around at the things we don't have time to clean.  Then there is home school, the research, the doctors appointments, and....well, you get the picture.  The last thing I enjoy doing is adding another regular activity to the every day schedule.

Long before going GAPS I investigated the issue of disposable diapers.  Conversations about butt rashes, diaper creams, and diaper choices are common in the FPIES community.  How could it not be with so much revolving around poop? I too, participated in the investigation of which diapers had corn, which did Ellie seem to be ok with, and the reality that her uber sensitive self should probably be wearing cloth and not disposable.  But like mainstream thought, I had examined through the lens of 'what can we get away with' and not 'what we truly should be doing'. 

We switched Ellie over to cloth diapers and her skin improved.  I had no doubt that it was beneficial for her. But then came the laundry and the time involved.  It's work to keep cloth diapers clean, and to figure out how to keep a child who seems to pee 12 cups in one shot from peeing all over the house.  It wasn't just a matter of pee filled diapers, either. It was pee filled beds, and pee filled car seats, and an entirely new hurdle for even leaving the house.  Over time we became more lax, and back to disposables we went.  First it was just when leaving the house, and then it reversed to only using cloth at night to help contain the pee.  And I began to complain of the cost of disposables again. And the old way of thinking was back. 

"These disposables are probably not the best for her, but she seems ok....look how well she has healed that she can tolerate them....and she always did ok with Huggies...and the expense will be short lived once she is potty trained....and holy cow who wants to wash an FPIES poop off of those cloth diapers anyways??" 

The little beads that were left on her skin when I changed her diaper bothered me still, but they didnt leave a rash and any other diaper either had corn or caused a rash.  So onward we went.  Until recently.

Recently Ellie had a staph skin infection.  It was extremely heartbreaking to feed her the anti-biotic which I knew would be damaging her intestines and set us back on the healing journey.  She had never had staph before. In fact, all of our battle has been largely tied to fungus and those corkscrew little demons that can burrow right into the gut and leave gaping holes.  I had never stopped to consider other bacteria, such as staph or strep.

And then over twitter came a link to an article on disposable diapers.  I glanced through the article quickly, and assumed it would be like most of the other articles I read - discussing how landfills were full of them, and how our government was probably putting them in capsules and burying them in the ocean or some other environmentally damaging tragedy.  What I was shocked to find actually came near the bottom of the article and just happened to catch my skimming eyes.  Staph.  Staph. huh? STAPH!

Here is what I read:

One of the dangerous chemicals inside disposable diapers is called Sodium Polyacrylate. Even the “eco-friendly” diapers contain this chemical, too. This is the chemical added to the inner pad of a disposable that makes it super-absorbent. When the powder gets wet, it turns into a gel that:

• Can absorb up to 100 times its weight in water.
• Can stick to baby’s genitals, causing allergic reactions.
• Can cause severe skin irritations, oozing blood from perineum and scrotal tissues, fever, vomiting and staph infections in babies.

What in the.....

A quick google search confirmed.  This is another one of those 'common facts' that no one cares to share, or even thinks is important.  Dear Jesus, forgive me.  My eyes had been opened to risks so long before, and I couldn't deal with the thought of more laundry.  I was ashamed.

My 8^th grade teacher required the entire class to memorize a fantastic little quote. It has bounced through my mind repeatedly in the last few weeks.  Having been a professional educator now for more than 10 years, I feel confident in saying he would be pleased that I still have it tucked away in memory. While in junior high I had absolutely no idea what a little jewel this quote was.  I remember thinking it had everything to do with me not wanting to complete my homework, and this quote was meant to rub it in.  Now I see the incredibly important life lesson behind it.  Here it is:

"Perhaps the most valuable result of all education is the ability to do the thing you have to do when it ought to be done, whether you like it or not." - Thomas Henry Huxley.

I was not exposed to the second part of this quote.  The entire quote by Mr. Huxley goes like this:

Perhaps the most valuable result of all education is the ability to do the thing you have to do when it ought to be done, whether you like it or not.  It is the first lesson that ought to be learned and however early a man's training begins, it is probably the last lesson that he learns thoroughly.

Indeed.  The last lesson that he learns thoroughly.  And in my case, must learn repeatedly.

Ellie survived her round of compounded keflex, but her skin still struggles.  We have transitioned her back to cloth diapers and the laundry has begun to pile up.  I have no idea if we will see a significant change in her skin after this, but I can be comfortable knowing I am not giving her a staph infection (or cancer).  And I also do not find it coincidental that in conjunction with the anti-biotic, her pee amounts have decreased significantly (what was in her bladder?) and she has begun to sleep for longer stretches for the first time. 

Only God's grace would allow that.  In the end I may get more sleep!

It Finally Happened

My worst fear. Well, at least one of them. I packed up our bags and headed out yesterday afternoon to a meeting. It was a half hour drive to get there, and about 45 minutes into the meeting Elianna starting signing her flappy finger gesture for a bottle.

That was when it happened. I realized I had forgotten one. No bottle. No bottle in the diaper bag or in the car. No way to feed her. Panic.

Borrow an alternative? No way. Not for Elianna. Are you kidding? She won't even let us feed her with a spoon. I tried changing the spout on her bottle this week one time at bedtime when she was half asleep. I changed it from an Avent bottle nipple to a silicone NUK bottle top that had more of a spout shape, and she screamed and tried to unscrew the top of the bottle. She can't swallow successfully from a cup, and she refuses to drink her 'soup' from a straw. In my panic I tried to feed her from a small regular cup which almost resulted in a huge mess. She tried to throw it and the screaming began.

Luckily the meeting was also a with a personal friend so it was a meeting-slash-playdate. I have to GO! We jumped in the car and headed to the nearby Safeway. Sounds fine except that Ellie goes from 0 to 900 in about 2 seconds. She has ALWAYS been that way. Personality? Maybe. But I am certain that broth goes right through her and she has never been too fond of feeling hungry. She always lets us know quite loudly.

I drug both kids into the store at a dead run because we had limited time to get there and to piano lessons. Moriah was screaming "I cant run that fast mommy!" and Ellie was just plain screaming. Lovely. Another opportunity to be 'that mom' in the grocery store.

Bottle purchased we loaded back up and I filled it for Ellie. In an unwashed, cross contaminated bottle. And all I kept thinking was 'major mommy fail'.

It doesn't matter that she is no longer on the restricted elemental formula. She is still sensitive. Extremely sensitive. All I could think about was the cardboard dust and adhesive dust (corn) that she was ingesting on this unwashed bottle.

I had times in the past that I thought I did not have a bottle packed or ran out of broth too soon, but I always found something stuck in the diaper bag or was not far from home. This time there was nothing. No spare packed in the trunk. Nothing. And it was an incredibly horrible feeling. When she was on formula I carried a box in the trunk with extra water, formula and water. I guess since I can not pre-pack her soup I took out that box and never restocked it. Clearly it is time to!

Broth, Broth, Baby, To Go...To Go....

This topic keeps coming up. Many have quickly recognized the work that Ellie's diet change is taking when it comes to mealtime, or when it comes to preparing her special diet. But most do not seem to understand the implications of trying to actually get out of the house. Here is my attempt to illustrate and compare:

When breastfed, babies are so easy to pack for. Mama? check. Diapers? check. Good to go. All fitting neatly in a normal - to - small size bag. Risk level: forgetting diapers means a stop at the grocery store.

When using commercial formula things are a bit more complicated, and at one point I had the nerve to complain about it. Bottles? check. Formula? check. Heated water? check. Diapers? check? Bag must be a bit larger, and may need to include a thermos for water. Risk level: forgetting any items requires a stop at the grocery store, or finding a restaurant that can provide hot water or ice.

When using prescription formula the diaper bag must get even larger, and is more inconvenient. Bottles? check. Entire can of formula? check. Heated water? check. Ice to cool down heated water if needed? check. Extra clothes for the child prone to vomit or blow out? check. Extra clothes for mama? check. Diapers? check. And in Ellie's case: Homemade wipes? check. Cloth diapers? check. As you can see the bag required is much larger to accommodate the specific needs of a special child. Risk level: substantial. Not enough formula packed means no food. The fear of getting stranded somewhere too far from home without anything to feed my child spurred me to keep a plastic tub in the back of my car with extra formula, bottles, diapers, clothes, bottled water, and whatever else we were restricted to at the time. That covered everything except for the issue of hot water, because Ellie refused to drink her bottle unless it was warmed properly, regardless of how hungry she got or how loud she yelled.

When on a special diet, or in our case, a diet of bone and meat broth, meat puree, and a vegetable, getting out the door becomes much more complicated. We start by packing the 'regular' stuff: diapers, wipes, extra outfit, throw in an empty bottle or two. Then we have to stop and evaluate. How long will be gone? What will we have access to? How far are we traveling away from home? How long will we be in the car? We have two thermoses we can use, that can sustain us for about 3 hours outside of the house. Longer than that we must pack an ice chest. And try to figure out how we would heat more broth. After considering this we begin warming the appropriate amount of broth, pureed meat and vegetable on the stove top. If we are going to be longer than a quick run to the library we have to make it hot enough to last, which is too hot to drink. We warm it and fill the thermoses, and then fill an additional small thermos full of ice to cool down the broth if she needs to eat before it has cooled enough. (This always makes me a bit nervous because it waters down the nutritional content and calories in her bottle, and is another reason we can not stay out too long)

The bag required at this point is rather large. In fact, our bag usually wont fit in the basket of our McClaren umbrella stroller. I am currently shopping for a large backpack that would be similar to one used hiking. And the risk level? Tremendous. I have already made the mistake of not packing enough broth for her on two separate occasions. She just ate more those mornings than she normally does, and the result was a hungry baby who had nothing to eat until we were able to get home.

The three hour mark is a crucial one. When we are out and she is refusing to eat, that is about how long we can stretch her before having full meltdown. At home she eats one 9 ounce bottle every 1.5 - 2 hours, on average. But due to her sensory issues, she sometimes shuts down when we are out and about and refuses to eat. It may be too much stimulus, she may be too busy, or the moon may just be in a funky position. Who knows. Sometimes we can confine her to a stroller and block out surrounding stimulus, or put her in the carseat, and she will be agreeable and eat, allowing us to stay out longer.

Overall, part of our new normal requires us to be at home much more than before. Not because we have become anti-social hermits, but because it can be damaging to Elianna. Or because I have to make broth. And sometimes because I am too pickin tired to deal with the checklist. So for those of you who have gone out of your way to visit us, sometimes driving quite a distance, thank you. Thank you for allowing my two girls some play time, and for allowing this mommy to enjoy company where I know I have everything I need for Ellie. And for those times I am able to get out of my house, thank you for understanding our limitations, and allowing me to use your stove top (but I will bring my own pot)!