Tuesday, September 13, 2011

Range of emotions (and giveaway winner!)

First... it's time to announce the winner of my first-ever blog giveaway.

As you may remember, one week ago today I offered an opportunity to win a beautiful handwoven scarf or basket, made in Ethiopia, by women who used to do the back-breaking job of carrying fuel wood to earn a very small wage to support their families. These women are now paid a predictable, fair trade income for the products, which are marketed online and here in the U.S. by the amazing Connected in Hope Foundation. All profits are re-invested to support the women and their families.

So if you haven't already, head over to Connected in Hope's website to make a purchase (they make great gifts!) and help out these women and children. Oh, and a very cool fact I learned today - each of the products are signed by the woman who made them. When you receive your purchase, you can find her name on the website, and even leave a message of thanks for her! I just thought that was really neat.

So without further ado.... the winner is....

Deborah, from What A Team

Deborah, please email Ryane at ryane@connectedinhope.org to receive your prize

Thanks to all who entered!


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So the best way to describe my emotions since finding out about Luke's diagnosis: erratic.

I've been calm, then a ball of nerves, then joking about it, then suddenly full of anxiety.

One minute I'm scared that my son has a disease with an actual name, the next minute I'm laughing about how researchers believe Tiny Tim probably suffered from the same problem (um, he's fictional!).

One minute I'm thankful Luke doesn't have anything more serious, the next minute I'm worried he'll be among those who don't outgrow it.

The biggest thing for me is that I feel a little bit in the dark. I wasn't told all that much about it by his pediatrician (who I still need to call back and ask a list of questions). Thankfully, there are a couple websites that I have found that have good information (not random websites, but ones like the U.S. Dept. of Health & Human Services, and the National Kidney Foundation), but I still would like to have a better handle on it. Like... does he need to see a specialist? Are there foods he shouldn't eat? What are the chances he won't outgrow it? Will we check his blood periodically to see if his levels are normal? What caused it?

I don't believe I've even said what it's called. It's Renal Tubular Acidosis. NOT the adult kind, which can be much scarier. So if you happen to google it, don't pay attention to that. The kind babies have slows growth and is normally outgrown. No kidney failure. I'm getting a nervous stomach just typing that.

Has anyone ever heard of it? Had a child diagnosed with it?

I don't expect anyone to be familiar with it. After all, my mom is a school nurse and says she's never once had a child in school with it. I hope that means that children outgrow it and it's not an issue once they are school age.

I just read an article about it and now I'm nervous again. I told you my emotions are erratic. Ugh. I need to talk to his doctor. And pray about it.

Jesus, I trust in you!

8 comments:

  1. Ok, no more googling! Ask you pediatrician. In fact, I would ask to set up another appt with her just to discuss it more in depth. Nothing like dropping a little bomb on mom and then telling her to have a nice day! I hate that, and it happens ALL the time. Make sure all your questions get answered so you are at peace.

    I have not heard of anyone with this specific disease, but if it makes you feel any better my bff from college just had a little boy who has one operating kidney. The other is small (not disintegrating yet) but not functioning at all. His other kidney is enlarged. But he's great! And that's pretty extreme. He just has regular u/s's and can't play any major contact sports. A compromise, but pretty amazing considering.

    Now, I'm sending you a Mother's manual so you can pray specifically for Luke and offer all of this over to Our Lady. Her protection is unmeasured.

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  2. I know nothing helpful but I wanted to say that I'm praying for you guys. I know it must be scary but it sounds like your Dr has a handle on it...hopefully he was false positive! how great would that be?

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  3. Oh, you are reacting the same way I would. The same way I DO when anything goes wrong with my babies. I wish I knew more. But I would DEFINITELY corner my pediatrician on the phone or in person and ask all my questions. The unknown is SO much scarier than reality. Please, for your own sanity, get off google and call the doctor ASAP! (((HUGS))) to you, hang in there.

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  4. You know, I was thinking about little Luke a lot recently. This is hard! We don't like our babies to have problems "with serious names." But it also goes to show you want INCREDIBLE protection there is for a Catholic child. "All things work together for those that love God."

    At first it didn't seem good. What good can come from a baby who has "failure to thrive?" But that that failure to gain weight uncovered a hidden danger. Now you know. Now you can get him treatment.

    Get all your medical questions answered. Check out Children's Hospital and/or John Hopkins.

    Still know in your heart, that God is going to protect your baby. If He gave Luke some weird CO2 thing, he's got a higher purpose for handing out that cross. Keep your eyes open during this journey. Your going to start seeing some cool things during your wait in the pharmacy line or wherever Mr. Luke's journey takes you!

    By the way, I have to tease you! You got to dodge all the scary brain bleeds etc. during Clara's time in the NICU! Consider Mr. Luke a slight "payback" for all the sweat, blood and tears the LA nurses put into Baby Clara. God knows what you can handle, and obviously it isn't much!

    I'm totally teasing you!!!

    From your loving Carmelite Sister

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  5. If I were you I'd take him to a nephrologist and get his medical opinion. My husband works for a renal dialysis company and he said you could see a nephrologist for pretty much any kidney problem, not just kidney failure.

    It's scary when your child gets diagnosed with something and then the dr. sends you home with the advice that you just have to pretty much wait and see what happens. I've gone through it with heart murmurs and eye problems with my girls and it's always stressful when you find your child in these situations.

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  6. Praying for you! The unknowns are so scary. I hope your doctor can provide more information.

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  7. That must be so hard! Praying for you that you get some answers and find consolation.

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