Tuesday, May 25, 2010

the good & bad @ 11 weeks...

Tomorrow marks 11 weeks since going gluten-free and I (Amy) thought I'd give a quick update on where we stand health-wise with Caroline. Just before we left for Florida, we received the results from some bloodwork on Caroline's food sensitivities which showed issues with 28 foods(!!). But because we were gone all last week, we weren't able to meet with our doctor to discuss the results and talk about how everything is going... until today.

Long story short, our doctor believes the bloodwork confirms that we are dealing with a temporary problem with Caroline's immune system & intestinal permeability. ("leaky gut" as a result of a hit to her immune system) So all the steps we are taking are aimed at supporting & regulating her immune system and healing her gut. That means we're doing things like:
  • avoiding the foods that her intestines are currently showing sensitivities to (gluten, dairy, soy, peanut, and most recently we're also suspecting corn)
  • giving her goods that are packed with nutrients and that will work FOR her (fresh, organic whole foods as opposed to packaged or processed)
  • adding in extra things like protein, calcium, zinc, probiotics & digestive enzymes to make sure she's getting the nutrients that she needs & help her intestines do the work
  • addressing her eczema issues as a related issue since it's also an immune response
I'm just so thankful that after so many doctors, we've FINALLY found one that is putting ALL of the pieces together for us and looking at all of this as a WHOLE. (instead of just seeing this as a hair problem.) She's hitting things from every angle and good about giving me a "plan" to help give Caroline's body the best chance for healing itself. Of course, we trust that ultimately it is the Lord that heals, but thankfully he uses ordinary means like wise doctors and medicines to accomplish it. I pray every night that He will heal and restore my baby girl.

We've also got some more testing to do on a couple of things our doctor wants to check, but she is optimistic that all of this is more of a temporary thing as opposed to a life-long thing once we get her well. And yes, she thinks Caroline will have hair again. At some point.

So that's all the good news--- the bad news is that my sweet girl got home from Florida and started running a 102.5 degree fever & is now fighting some kind of cold virus. (she's already got enough health issues!!-- she's not allowed to have regular-kid-health-stuff, too!) :) So our hands are especially full with keeping her comfortable, PLUS since returning home, her eczema stuff has taken a turn for the worse. (remember I showed you how perfect her skin looked at the end of the week?) She looks SICK to us. Ugh- you don't even know how heart-breaking it is to see your child look like this-- blistered fingers, itchy inflamed purple and red-patches on her elbows and wrists, even red dots on her face today, plus the dark circles under and around her eyes. I know she's also not feeling well from this cold and that makes everything worse, too, but it just feels like such a guessing game. (is it environmental allergies? was it the chlorine in the pool? was it the fact that she didn't eat corn products at all last week?) Not to get too graphic, but her diapers are just depressing us, too. Just wishing we could see any signs of improvement. And for the signs to then STAY that way!

It's quite the emotional rollercoaster ride-- when she's doing well, we're doing well. When she shows signs of improvement, we feel hopeful. When things get worse like the past few days, we struggle with despair. Oh if we could just keep our eyes and our feelings fixed on the One who has everything under control & even the numbers of hairs on our heads counted! What a struggle that is for Marc & I as we feel the physical & emotional stress taking its toll on our bodies. We just all three really need and covet your prayers right now.

Thanks, friends.

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  1. amy, i'm reading this through tears--y'all must be exhausted! we will continue to pray for you that you will receive comfort and strength to keep you going for one more day, and one more day, and one more day. we love you guys!

  2. You all could use a family VACATION!

  3. you need to talk to rachel. she said she'd love to talk to you. anyway, lauren can't have corn...it's amazing what corn is in...pretty much lauren doesn't eat it unless rachel fixes it.

  4. ps do you give caroline almond milk? there was a good coupon in sun paper for it. let me know and i'll bring it over

  5. She is absolutely beautiful.

  6. Nanny & PapaMay 27, 2010 at 10:04 AM

    We are praying almost every hour. I know God is going to heal this baby girl. He just wants us extra close to Him right now. Thank you God for your mercy and grace to all of us. Just keep on keeping on for Him and be there for little Caroline. We all are there for you all.

    Much love and prayers for y'all.

    Nanny & Papa

  7. I am so sorry for your heartbreak. Everyday I pass by TONS of fresh fruit and veggies. Men sell them along side the street. They don't know any other way here. I wish I could just bundle a bunch up and send them your way. Love you and praying for you