Crazy Month and Skype Time with an Australian Doc

It's really late, but I can't sleep, and I figure I may as well do something more productive than toss and turn in bed. We just finished a Skype conversation with a doctor in Australia, and my mind is full. And as Parker likes to say now that we've read Charlotte's Web, "When your stomach is empty and your mind is full, it's always hard to sleep."I keep meaning to update this, so here goes it!

Since my last post, things really seemed to spiral out of control with Charlotte. We were backtracking, we were miserable, and in general, everything was a mess. It's been a messy, stressful month.

On the homefront, CJ is doing well at his job and settling in. After house hunting all summer and waiting on financial matters with a few banks, we were in a holding pattern and nothing was working out in the right timing. We looked at an apartment in Alfred (where I grew up, about 20 minutes from CJ's job) on Saturday. We were told there were 7 other families who looked at it that day, and we would hear an answer over the weekend. Well, we didn't hear anything, so we got to thinking they probably wouldn't offer it to a family with kids if they had a choice. But we knew if it was supposed to be the place for us that God would work it out. Monday morning at 7am I got an email offering the apartment to us. So, while home ownership was what we had our hopes set on, we know God's timing and provision is best. This will allow us to move out of CJ's parents' house soon (Oct 1), which needed to happen. It will also give us time to get settled and grant more time for God to show us where He wants us long term on HIS timeline. And one more major thing finally planned out. So, we are thankful for a clean, safe place, and look forward to making it a home. God gives us what we need, always.

Back to Charlotte, in the midst of trying to secure housing, and CJ getting into his new routine at school, Charlotte was just feeling lousy. She seemed to be reacting to everything, regressing on the diet, and I didn't really know why or how to support her or help her move forward. We had many many HARD days with her crying on my hip- long days after long sleepless nights, cranky, irritable, irrational, not fun. I knew we needed to get some professional help to help me know where to focus and what to do next.

I got some recommendations from the folks in the Facebook support group I'm part of, for some specialists who work long distance. I spoke/emailed with a few and decided to get help from a doctor in Australia who specializes working with babies and kids with severe digestive disorders and healing them through nutrition.

Let me say, for the thousandth time, God is faithful. We do not have two cents to rub together right now, let alone more money to sink into this extremely expensive diet, supplements, or even the money to talk to a doctor. Many people have asked me, and no, insurance does not cover anything we are doing. It is not mainstream medicine, and the medical community in general has nothing to offer us. Anyways, we were given a generous donation so that we would be able to actually talk to this woman all the way across the world who might help us.

We also have been approached by two different folks who would like to help us fundraise to come up with the money we need to continue helping Charlotte. I will add more details soon in another post, but stay tuned for a way you may be able to help, in addition to your prayers which we covet. If you live locally, please consider helping us by donating items you don't need, or crafty items you've made to a yard/craft sale, or baking something for our bake sale next month. I am humbled to receive these kinds of generous offers of practical ways folks can help us. The strain of trying to figure out how to afford everything is a considerable stress for us, and we simply don't have it. So we are incredibly thankful when God provides in creative ways through loving folks around us.

Okay, so tonight was the big night where we got to Skype with a doctor in Australia. In addition to enjoying her wonderful accent, we really felt good about talking with her. She told us in the beginning that she expects nothing less than a 100% recovery from Charlotte and she hopes soon this challenging time will all be a "deep dark memory." That alone was comforting to hear. When we spoke with a specialist in Boston we were told Charlotte's cases was one of the hardest types to heal, and it would be a very long and painful process the entire time. Talk about bleak. It was really depressing. With Sally Gray, this doctor from Australia, I felt a refreshing hope.

Sally talked about the different approaches to healing a child like Charlotte- the Boston doc's way being one- where you push and push and push, throw healing things at it, and eventually the body will respond and heal appropriately. Sally says this may work, but it'll be painstaking and uncomfortable for her and us. She does not think this is the best way to heal Charlotte. Her body is too fragile and sensitive for this.

What she does think is the best way, is finding a balance with Charlotte. Her body is reacting and responding and we need to listen. Pushing will only cause her body to be in a state of fighting, instead of where it needs to be, in a state of healing. Our immediate focus will be to bring Charlotte back to baseline- to the most limited foods and most healing ways of cooking them, until she is back to herself again. We need to focus on increasing her consumption of meat stock and go back to boiling her meats in stock for now, sticking with foods we know are safe. Eliminating anything else from her diet or environment that may be hindering this (most notably the probiotic she's been struggling with).

Once we are back to happy, contented Charlotte for a week or so, we will focus on trying to increase healing foods. She encouraged us to keep an open mind and not to consider only GAPS recommended foods. She says for kids like Charlotte, there is not a one size fits all approach, and right now we need to focus on nourishing and balancing her. We need to let Charlotte be our guide here. This will take time, and we need to go as slowly as she needs us to.

She really senses that Charlotte may indeed have an eosinophilic gastrointestinal disorder, and in that case GAPS may not fully work when you follow it as the protocol suggests. She says we may need to look outside that framework to find ways to heal her that will be less invasive (i.e. healing transdermally as opposed to continually trying to heal through foods which her body keeps rejecting). It's not that this approach will not work, but it makes it more complicated, and she says we should keep an open mind.

We spoke about how to ensure Charlotte is getting the nutrients she needs on such a limited diet, especially as I wean her, (we have worked down to nursing only twice daily) and she is going to send us some recommendations. One idea was to give her some Elecare (an elemental formula) but she said that was not necessary. We need to make sure she's getting the minerals, fats, and amino acids, and much of this is actually delivered to her through the meat stock, in the best form her body can recognize and break down. So, I'm not sure we need to worry all that much, because she said this period of limited foods is a transient time, and if she's healing now, soon she will be able and ready to take in more nutrients from a bigger variety of foods. This set my mind at ease a bit.

She will also email us information about other minerals and good things we can use on Charlotte's skin to get nutrients in. Where her body attacks so much when ingested, we may need to pursue getting good stuff into her a different way. Like the magnesium oil supplement we spray on her feet every night, other things are absorbed well through the skin. Yogurt and probiotics applied over her diaper area will find their way up into her digestive track. Our body is made up of so many microbes- she said there are 10 times as many microbes in and on us, as there are cells to our bodies! So we will consider other ways to support her body in getting more weapons in her arsenal of good probiotics to fight against the bad microbes in her gut.

We talked about doing some testing with the microbiome project to find out a better picture of what is going on internally, but this may or may not be helpful, for the cost. In any case, we would still need to proceed the same, slow and steady.

There is even a new therapy that is gaining in recognition- forgive the terrible picture which will come to mind- but it's taking healthy gut flora (within poop!) from a healthy donor and transplanting it into the bowels of a child like Charlotte. I have not done research about this but apparently it can drastically and more quickly improve the state of the gut. Shudder. This just plain grosses me out! But we'll read up on it!

Sally will be able to help us proceed from here. She is going to send me a detailed report and recommendations which should help us and we can contact her whenever we need via email or Skype. I was so thankful for the opportunity to talk to her and hear that Charlotte is on the right track, and we WILL work through this. Just knowing how to focus and knowing I should not push through symptoms takes so much guess work (and stress) away from me. And will make this a more comfortable journey for Charlotte. Poor little kiddo. She has been through so much already. I hate thinking how terrible she must be feeling; I don't even really know since she can't explain it yet. What a trooper.

I know I've rambled a bit, but it's 1:30 in the morning so I think I'm entitled! So, that's where we're at, in a messy little nutshell, and as always, we appreciate the prayers and encouragement more than you know. God is setting Charlotte up for a great testimony. I cannot wait to see how He will heal her and work in her life, and ours, as we go through this. We have much to be thankful for, things could be a lot worse, and we know nothing that happens to us has not been filtered through the loving hands of our heavenly Father. He will work all of this out for His glory and our good! Sending love and thanks to you all!