Tuesday, December 27, 2011

New baseline

If we are what we eat, then Juliana is a little lamb.

Two weeks ago I pulled dairy from Juliana's diet. She now eats nothing but lamb liver-based formula and she is doing very well on it! The eczema on her face actually increased for the first week or so before fading entirely. I've found that the eczema will return if I am not careful when measuring some of the ingredients. This has led me to believe that Juliana's eczema was a detox reaction.

She's not having any GI issues: no reflux, no diarrhea, no constipation, no diaper rash, no digestive pain. Her respiratory issues are gone. She's gaining weight. She's happy. Perhaps one of the most exciting things of all is that she seems a little less foggy and a little more interactive. Juliana has always been communicative and observant (when not in pain). But she's been only selectively interactive with us. For example, it's only in the past week that she's been smiling at us when we play peek-a-boo. In fact since switching to 100% lamb she has smiled much more overall. She has also just recently begun to mimic. I am hoping and praying that good nutrition will help her cognitive development.

This is our new baseline. I don't know where we will go from here. We are consulting with a GAPS-friendly nutritionist soon and I am hoping that her expertise will shed some light on our next steps.

Friday, December 23, 2011


Quite honestly, it's taken me awhile to feel thankful. After several months of trauma and drama, after many months of questions with no answers, after postpartum depression, after receiving bad news after bad news, after many failed attempts to help Juliana - I was not thankful. In fact a post from Ann Voskamp made me realize that I was on the fast track to bitterness:
“If God really works in everything, why don’t we thank Him for everything? Why do we accept good from His hand — and not bad?
This is hard. Maybe the hardest of all. 
I have held dying babies. Eaten with those who live on the town garbage heap. Wept with women who’ve been violated, with the bankrupt, the heart crushed, the terminal. And this never stops being true: Neglecting to give thanks only deepens the wound of the world. 
To thank God in all is to give God glory in all. Is this not our chief end?
After the realization, the confession, and the move to be intentionally thankful - things are better. 

This weekend I am spending Christmas with my family in a cabin in North Georgia. I am feeling so thankful for so many simple but wonderful things: kids who sleep well, lots of good GAPS food, a fun place to stay, cable TV to watch while I do therapy with Juliana, other people around to play with the kids, the emotional and physical support of my family. While this year has been nothing like I envisioned, I'm finally at a place where I can reflect on the past and look to the future with thanksgiving. 

A GAPS Christmas Feast

I've spent a wonderful Christmas weekend with my family. Check out our menu below. Everything is grain-free and sugar-free.

coconut flour pancakes
grain-free blueberry bars
eggs and bacon

Dinner #1
cheese burgers
cheesy green bean casserole*
(cooked in the dark, on a grill, after we lost power for several hours!)

Dinner #2
lamb roast
candied pecan butternut squash*

Dinner #3
carrot soup
7 layer salad*
cheesy coconut biscuits*

dutch apple pie w/ vanilla cream topping*
chocolate banana brownies*
coconut flour snickerdoodles

grain-free crackers*
beef jerky
spinach artichoke dip*

*These recipes are from A Whole Food Holiday

Wednesday, December 14, 2011

Ditching the canned nutrition (part 2 of ?)

When we switched to a real food formula I told myself that I would only go back to Elecare if Juliana's symptoms were noticeably worse. Even if her symptoms were exactly the same, I would continue to choose the real food formula over the 55% corn syrup solids formula.

Those first few days on raw milk formula were great. No reflux! No diarrhea! She was sleeping well and seemed happy and comfortable. And, an amazing development - she started drinking from a straw!

But then we experienced a brand new problem... constipation. Pasteurized milk can cause constipation but raw milk shouldn't. Apparently Juliana's little system just isn't recovered to a point where it can handle a diet of mostly milk. For some time I have suspected that she has low bile production and this constipation issue has helped confirm that thought. Per the suggestion of a knowledgeable Weston A. Price leader I started using raw milk kefir as the base of the formula. That helped but only a little bit. Fresh carrot juice also helped but not to the point of solving the problem.

I was in limbo for several weeks considering my next step. Go back to Elecare? Not an option. Go to the liver-based formula instead? I had a list of excuses and reasons why I didn't want to do that: she has only one safe meat right now (lamb). The liver formula is so, so much more work to make. I like knowing the exact amount of calories in the milk formula, whereas with the liver formula it feels a little less certain. I liked that she was quickly gaining weight on the milk formula.

On the other hand, constipation wasn't acceptable. So on 12/1 I made my first batch of lamb liver formula. Very quickly Juliana was no longer constipated. Still mourning the loss of the milk/kefir formula, I decided to add it back in. She now gets 50% liver formula and 50% milk/kefir formula. For awhile this seemed to be the perfect ratio of ingredients....

But now I am not as sure. Juliana has a bit of eczema on her cheeks and that really concerns me. It's popped up just in the past week or so. She's pooping just a bit too much. She has a small diaper rash but I don't like the looks of it. A typical mom might not pay much attention to these things, but to me they are red flags. I don't know if these are possible die-off/detox reactions or if they are indeed a food allergy. In either case I suspect the lamb. She was on raw milk formula alone for over three weeks and in that time she did not have any eczema or any diaper rash.

One interesting item of note: she likes her lamb formula very, very much. In fact it's not uncommon for her to finish a whole bottle of it! She doesn't like her kefir formula as much, I think because the kefir is so sour. I think this could be an important clue because the lamb must not bother her stomach if she is so willing to drink it.

So... we're getting there but we're not there. I can't call anything a complete success when she has eczema, even if it is a very small patch. Same deal with the poops (I pay an inordinate amount of attention to poop!)

I am still contemplating my next steps. We are in a decent position right now but we still haven't arrived at a real food baseline. I think that once we get to that point I will be able to push her in the direction of eating all of her food orally. I am eager to get to that point and hopeful that we are close.

Thursday, December 8, 2011

Ditching the canned nutrition (part 1)

My plan was that Juliana would never receive a bottle. I was (am?) a bit of a lactivist. Calvin was weaned just over a year ago; several months after his second birthday. The main reason I weaned at that time was because I was in the second trimester of pregnancy. I enjoy nursing and saw no reason why I wouldn't have the same experience with Juliana. Because I planned to stay home with my kids I didn't see any reason why I would need to pump or mess around with bottles.

The best-laid plans....

I fought and fought to avoid formula. I really think I did everything in my power to avoid it. I spoke with everyone who knew anything about breastfeeding.... from doctors to IBCLCs to La Leche League. (In fact it was an LLL leader who repeatedly encouraged me to try elemental formula, as she had been in a similar predicament with one of her children). If I could go back in time - to the time before I was even pregnant - then I think that possibly I could have avoided Juliana's GI problems. But kids with chromosomal disorders often have GI difficulties, so who is to say? In any case, I've come to peace with it.

Amazingly, the ingredients below were easier on her system than breast milk:

Yuck. It was important to me to get her off of this as soon as possible, but how to do that with a baby that had reactions to something in breast milk?

Enter GAPS. Dr. Natasha Campbell-McBride suggested right off the bat that I give raw milk formula to Juliana. I was too afraid. She had such a terrible reaction to something in breast milk and then to Neocate and now she was doing so well on Elecare. I didn't want to mess with a good thing. But the more I read about raw milk, the more I wanted to give it to her. But instead I just inched along trying out different broths.

A few months ago I learned that Elecare was changing their formula recipe. This made me incredibly nervous. Juliana is so sensitive - what if the changes to the formula didn't agree with her? We were at the end of the line having already failed all other elemental formulas. I waited for my next shipment of formula. When the new stuff I arrived, I decided to try it right away. I still had plenty of old formula in reserve but I wanted to know how she would react to the new recipe.

She did not react well. While it wasn't as bad as anything else we had previously tried, she was having reflux that was bringing her to tears and she was spitting up. These were both things that were completely gone on the old version of the formula. I quickly switched her back to the old formula and began desperately praying and researching.

I began to again wonder if Juliana has a corn intolerance. I read this article about a baby who didn't do well on anything except whole milk. I googled around and found a few similar stories (not many, but a few). I then spoke to a local Weston A. Price chapter leader who told me that she had seen a number of supposedly lactose-intolerant babies do very well on raw milk formula.

That was enough for me. I had to move Juliana to a homemade formula, and I had to do it before she ran out of the old Elecare.

On November 4th I mixed my first batch of raw milk formula, said a prayer, and gave four ounces to Juliana. And then we sat back and waited. Twenty minutes went by and she was still smiling and playing. An hour. Two hours. She took a nap without any problem. She pooped (this is an important detail for babies with GI problems!). She played some more. Everything was good.

I really couldn't believe it. My baby - the one who would scream the instant that breast milk hit her stomach - was totally fine with cow's milk (raw, grass-fed cow's milk!).

That's part one of the story. Part two is how I refined her diet and why I still think we haven't quite arrived yet at a real food baseline.

Tuesday, December 6, 2011

A day in the life

This week is not uncommon:

Monday morning: appointment with ENT. We are there for two and a half hours. I have both kids in tow.
Tuesday afternoon: a trip to DFCS to find out more about the deeming waiver. A failed trip, since again I had two kids with me and about 50 people ahead of me in line.
Wednesday morning: physical therapy
Wednesday afternoon: appointment with neurologist
Wednesday at some point to be determined: craniosacral therapist
Thursday morning: weight check and quick check-in with GI
Friday morning: physical therapy
Friday afternoon: occupational therapy
Friday at some point to be determined: another craniosacral session (maybe)

We also have some other typical things to do throughout the week. I try to go to a playgroup each Thursday. Obviously we have to go grocery shopping. I cook most of our food completely from scratch. I make Juliana's food. I try to do fun things with Calvin. I have to pay bills and I have to figure out insurance paperwork. I do laundry.

And I also like to sleep.

I have been forced to come to the realization that I need more help. Most weeks I can handle the load, but I am spent by the end of the day and the end of the week. Most nights David isn't home until around 8pm (he is working on a second degree). And oh yeah, my husband? Well I have not been out with him in a year.

What I dislike the most though is when Calvin spends too much time at the doctor's office and not enough time doing crafts, reading books or playing make-believe. Not every week is like that but this week has been.

But I've been reluctant to ask for help. For the most part I've asked for only the bare minimum.One reason is because I truly can manage it, I just can't manage it as well as I want. A second reason is probably pride and a severe, life-long case of "I can do it myself."  I may also feel a bit guilty knowing that there are kids out there who are in far worse shape and parents dealing with things far more difficult. The final reason, one that has paralyzed me more than the others, is because I feel strange about asking for help when I only have two kids. However the more I think about it the more I realize that when you have to teach your kid how to eat, have to figure out what in the world your kid can eat, have to learn how to be your kid's therapist and have to take your kid to a million appointments --- you're doing way more than parenting just two children. We've had weeks here or there where we only have one or two appointments, and those weeks are easy.

After a lot of contemplation I've realized that even just a little bit of help could go a long way. I'm not sure yet how this will happen, but I'd really like more quality time with Calvin, some time to exercise, and - if I'm really being optimistic - a little less house cleaning. And of course, a date with my husband would be nice - hopefully sometime this year.

Friday, December 2, 2011

Oral aversion, and how we moved past it.

Huge disclaimer: I'm not an expert on oral aversion or feeding issues. Every situation is unique. But I do want to share our story and how I helped Juliana overcome her oral aversion.

Late one night I wrote a list of things I needed to work on with Juliana. One of the things on that list: get her to burp without vomiting. Juliana had become so sensitive that a burp, a cough, or too much crying could cause her to vomit. We had a lot of damage to undo before she could even begin to reacquire eating skills.

Juliana's oral aversion began when she had great difficulty eating due to digestive pain and possibly some reflux. It peaked when she began vomiting violently. In the aftermath I was left with a baby who would gag to the point of vomiting if something (bottle, pacifier) was put in her mouth. She was overly sensitive and did not associate eating with pleasure but rather with pain.

The first step was to get to the root of the problem, and in retrospect it took awhile to do that. We went from breast milk, to breast milk on a Total Elimination Diet, to Neocate (fail), to Elecare (pass). During all of this we also gave her Zegerid, a proton-pump inhibitor that seems to help most babies with reflux. It didn't really help Juliana - I think that her reflux was minimal to begin with and I later determined that she was also reacting to the drug.

I do believe that a g tube could have been entirely avoidable if we had just figured out the problem sooner. She would have needed an NG tube for awhile but I imagine that she would have been taking full feeds by the time she was a few months old. I hate that this was avoidable but I don't blame anyone for it. Even now, Juliana's digestion is still a bit of an enigma to me.

Our second step was to get rid of the NG tube. The NG tube is such a catch-22: it gives your kid a way to eat but it also increases their oral aversion so that they don't want to eat orally. I was so glad to be done with it.

After g tube placement I gave Juliana a few days off to recover and to become accustomed to the sensation of a tube-free nose and throat. Then we began working in earnest. Her GI issues had been taken care of but the lingering effects of the trauma were still very much in her memory. She would gag, usually out of the blue. The gagging would turn to retching which would turn to vomiting. She has always been very communicative and I found that if I spoke to her in a comforting but somewhat firm voice I was able to convince her not to vomit. When that failed, I would quickly empty her stomach before she had the chance to expel anything (a huge benefit of the g tube, at the time). I figured that dry heaving is less damaging to the psyche than actual vomiting. During this time of extreme sensitivity I gave her very small, frequent meals. I also stayed away from continuous feeds.

Things slowly began to improve over the course of the next month or so. After awhile I noticed that Juliana had a pattern where she was much more likely to gag between the hours of 2AM and 11AM. Why those hours - I have no idea. But I really began to focus my efforts to those time periods in order to ensure a gag-free day. She would usually start to gag at times when I was not holding her, and I would run to her as soon as I heard the tell-tale sounds. I also tried to encourage her to burp or cough without gagging/vomiting.

As we worked past these habitual behaviors I also began to slowly desensitize her mouth. Eventually I was able to put a bottle into her mouth without any trouble. Unfortunately, she lost her suckling reflex after the vomiting spells caused an oral shutdown. Not too long after this I began spoon feeding her broth and I was thrilled that she would allow me to feed her this way.

It seems so simple: remove offending food, heal GI tract, encourage baby to stop vomiting, desensitize mouth, work on oral skills. But it wasn't easy. It really has to be done with great sensitivity - for instance I would always work with her in a quiet place which was not always easy with a rambunctious older brother running around. And there have been many times when I feared that I pushed the envelope too far and that I might undo some of the progress that we made. Fortunately any setbacks we experienced were minor and quickly overcome.

We still have some work to do but we've come a long way. Today Juliana can drink with a straw and most of the time she loves eating solids. I am really excited by her progress!

Thursday, December 1, 2011

More thoughts on receiving a diagnosis

We weren't sure what to expect at our appointment with the geneticist. Neither of us expected to receive a diagnosis so easily. I expected the doctor to say that it could be this or could be that and that we could try to run more specific tests. That seems to be the norm for a lot of people who get a clean microarray result. I kind of expected that we might be looking at a syndrome without a name.

The genetic counselor told us about Kabuki Syndrome and then she left the room to go get the doctor. David said "well, if that's the diagnosis, I'll take it!" We both know that there are far, far scarier things out there.

You might think that it would be sad to receive a diagnosis of a genetic disorder, but it truly wasn't. I had to face the fact that something wasn't right many months ago. It is very difficult to know that your child will have significant challenges doing the things that come naturally to typical children - even simple things like eating, or sitting up, or walking, or talking. When you have a typical child you may wonder when he or she will walk or talk, but you don't ever wonder if he or she will do those things. I suppose it will always sadden me but overall I've come to peace with it. It has certainly helped to read many stories of Kabuki kids who are doing quite well.

There are never any guarantees in life. We all know that yet we seem not to really know it. I've just barely begun to realize how much I take health for granted. I look at Calvin and can't believe how blessed I am to have such a smart, sweet, robust, healthy child. I look at Juliana and I'm grateful for her sweetness too and for the amazing progress that she has made. I think she is a smart and tough little girl.

So we did not greet this diagnosis with any sort of despair - in fact we felt immense relief.  I felt excitement that I could finally connect with other people who were also familiar with this label. Since Kabuki is very rare I've also felt a renewed appreciation for the internet and the way I've been able to connect with people all over the world.

I won't lie - life is very tough right now. But when I have a free moment to reflect on it (preferably this free moment will come at the end of the day and will also involve wine) I can truly say that we are blessed.