Truckin'

We have hit stage 3!  It's all eating from here.  Ellie is now eating winter squash, carrots, onions, leeks, nut butter, ....the list keeps growing.  Many of these things she could not tolerate at the start of GAPS and she is now doing great.  The fact that she can now eat 'sugary' vegetables means that she has fought back the yeast, begun detoxing properly, and healed beyond dissacharide deficiency.

There are odd adjustments going on in the family dynamic as she begins to eat.  Often she gives a surprised look when she asks for something and we respond with "YES!", instead of "Not yet! When Jesus heals your belly! but SOON!".  All day today I heard her singing her made up song of "pum-kin muffin yum-ME! pum-kin muffin yum-ME! pumkin muffin yum-ME to meeeeeeeee".

Aside from textures, she still can not truly chew.  This hang up is due to missing some developmental milestones, but also due to her lip tie. After her last growth spurt the restriction on the left side of her face became much more visible.  Her lip on that side does not move the same when she talks, and sometimes turns blue when the muscle is strained. I am certain the issue of chewing will not be fully resolved until she has the surgery she needs.  Unfortunately we can not afford it yet, so it will have to wait.

In the meantime she compensates by tearing microscopic pieces off of pancakes or muffins, and we are working on textures with things like nut and seed butters.  We are doing our best to offer her more and more options within her chewing limitations.  We have to think of her as a beginning eater, and remember she is susceptible to choking.

It's truly a whole new world around here.  As we near the end of Team Ellie's 6 months of prayer, I see God's faithfulness. I heard Him say clearly to establish a team of prayer warriors, and I heard Him say that 6 months was the time frame.  During this 6 months He has revealed hang ups and hurdles, and amazing healing. Thursday will be the 6 month mark.  And she is truckin', leaving FPIES and EGID in the dust.

Gettin A Move On

It has been 8 months on GAPS intro stage 1. Ellie has lived on meat, broth, and zucchini for 8 months. She has grown, thrived, and never been healthier. Any person can live on a diet like this forever. But there is no way I want her stuck there. There have been so many times I have thought there must be something else. GAPS got her started, but what is the hang up? Back to my knees, and the science, and my support system, and we keep plugging forward. I keep hearing of other GAPS patients who take 2 full years before really seeing large jumps in healing and progress. Ellie is on the extreme side of that, so 2 years may even be an unrealistic goal. I tell myself that 2 years for a lifetime of eating is a drop in the bucket. But that is not an easy goal to hang on to.

And then this week something changed. By the grace of God I got another glimpse into her system when she ate some wretched dried green peas. Those peas tore her up and I prayed every night that it would not set us back months. And it didn't. Which was amazing in itself. Once she was symptom free we decided it was time to retry chicken broth. Two days before her eczema on her legs erupted into a nasty painful mess that looks more like hives. We recently stopped her nystatin because she reached the six month mark, but I have no idea if this is the cause. Should we wait?

GAPS progress is largely individual and based on the healing that has taken place. It is completely possible that the small amount of fiber Ellie is getting in her zucchini is keeping her from healing, and we may have to pull it. When I got that word from Dr. Natasha, I cried. 8 months of broth and healing and that? And then the pea incident.

Back on my knees I went. Pull the zucchini? Move forward? Once the basis of healing has begun in a GAPS patient, foods should be tolerated easier and at a 'quicker' pace. Other FPIES kids have moved much faster than Ellie. This time I feel it is different. I may be right, I may be wrong, but there are some changes that show me it is time to push forward.

Three days ago we started our third attempt at chicken broth, armed with lots of fat from the feet and added lamb tallow. These chickens have been fed grain, and guess what? SHE DID GREAT! This pass makes me want to do a dance with excitement. I am feeling the green light. It feels scarey and exciting, but I am hopeful at another milestone of feeding Ellie.

So what is next? We begin with one drop of fresh carrot juice a day. Carrot juice has anti-fungal properties and will help with candida which she battles. Carrot, butternut, and pumpkin are on the list. Maybe even onion. And I am thinking it is time for a trip back to the feeding specialist to find help getting her off the bottle and onto whatever is next.

Here we go Ellie! Here we go FINALLY gettin' a move on!

First Fail After the Broth

I am calling it quits on carrots. I had a funny feeling from the beginning, but pushed through because I truly wanted these to be a pass for Ellie. But no luck. Constipation can also be a sign of 'allergic' reaction, and after starting carrots the first time Ellie stopped her now regular stool. So I stopped, and then restarted, and this second time it took three days before we were seeing symptoms: ear drainage, raspy nose/chest, eczema flare, urping (wet burps), very fussy nights, and no stool.

The good news is it was a less severe reaction and took much longer to be sure. I believe this to be a sign of FPIES healing. Hooray! The bad news is now that she is on the road to healing, I think this might be one of those foods she may never be able to have. But we will shelve it for now, and come back to it in about 32 months.

The only remaining factor is that we still have not received the test results for sugar intolerance from her biopsy. This test is taking so long! Carrots are extremely high in sugar content, so we will see if those test results shed some light on this fail.

I am hopeful that she will recover quickly, and curious how long it will actually take to do so. Back to zucchini and onions, which is already great progress from where we were a short time ago!

Holding My Breath

Today Ellie slept a lot. Yesterday we started carrots. And once again I found myself holding my breath. Is she growing? Is she sleeping better? Is she reacting? Two weeks of great progress and no symptoms. Yet it all comes rushing back like a bad dream. It brings me to a place where I wonder....regardless of the progress we make, or how old she gets, will I ever breathe normally? Or will I forever be at risk for that sudden streak of panic? Those moments where all of the possibilities run their marathon through my head while I remain breathless?

She has made incredible progress over the last few weeks. And then...

Last night she had a routine night time bottle, and coughed. I sat her up for a minute and it stopped.

Tonight she had a routine night time bottle, and then coughed. We got her up for a few minutes and it stopped.

And again it had me holding my breath. Was it something? Probably not. Again I march to the fridge where I keep her spreadsheet and log: coughing.

Holding my breath. Watching for symptoms, signs, problems. Stealing my joy, and robbing me of the blessings we have seen. It pushes me back to my knees. It reminds me that it is not I who makes the world spin, and it is not I that am in control. And forces me to take a deep, slow, deliberate breath.