Musings of a Marfan Mom

October 8, 2009
by marfmom
3 Comments

What Goes In…

…must come out. (Alternatively titled: When you shouldn’t call the pediatrician)

Every mom has been through having a constipated baby. There’s no way to sugar coat that. At the suggestion of my BabyCenter email (you know you’re a mom not when you find a photo essay on normal vs. abnormal baby poo to be interesting, but when you can read it while eating a bean burrito), I called Menininho’s pediatrician to see what to do about it.

The nurse and I talked for a few minutes and she recommended I buy a glycerin suppository (about $8) to use twice and then give Menininho 1-2 ounces of prune/pear/peach juice (5 for $4) every day for a few days to keep him regular. I bought the juice but the pharmacy was all out of the suppositories.

Thank goodness.

After Menininho’s dinnertime bottle I gave him 2 ounces of apple/prune juice and it seemed to nip the problem in the bud.

Flash forward to this morning.

I’ll spare you the details and just say the damage was…extensive. I stripped Menininho to his diaper and carried him into my bathroom to give him a bath.

This would have been easy, except for the GIANT SPIDER IN THE BATHTUB.

Killing the spider would have been easy if my husband hadn’t moved the spider killing spray outside.

Instead, I grabbed the only chemical I could find: Scrubbin’ Bubbles Shower Cleaner. By the time I drowned that nasty creature, I was getting a headache from the fumes.

I moved Menininho to the living room while I filled the sink in the other bathroom. Once he was bathed, I realized his diaper had leaked all over the living room carpet. I left him wrapped in his towel while I treated that with carpet cleaner.

No sooner was that cleaned, and Menininho dressed, diapered, and fed, then he spit up all over himself.

In summation, try the juice before the suppository and definitely only mix the two as a last resort. I can’t imagine how much worse the morning would be if we’d listened to the nurse.

The day can only go up from here, right?

September 30, 2009
by marfmom
0 comments

End of an(other) Era

Last Wednesday Mark had a milestone of his own; he ate a Wendy’s burger and chili-with-crackers for the last time.

Last Wednesday Mark was diagnosed with Celiac disease, an intolerance to gluten. Gluten is found in wheat, barley, and rye, but is also used as an additive in processed foods. No one is totally sure what causes Celiac, but it is an autoimmune disease that targets the digestive tract. In Celiac patients, the body reacts to the absorption of a protein in gluten (gliadin) by attacking parts of the small intestine, which causes the breakdown of the small intestine and difficulty absorbing certain vitamins and minerals. Mark was diagnosed because of his moderate anemia. We started the diagnostic process in March, when he was diagnosed with Type 1 diabetes, and it’s taken till now to determine the cause of the anemia.

Now, I know what you’re all thinking. Seriously? This family has ANOTHER weirdo disease? Pretty crazy, huh? Well don’t tell anyone, faithful blog readers, but we’ve decided to go for the world record in rare diseases in one family. I don’t know what the current record is but I assure you, give us enough time and we’ll beat it. Or if not, we should at least get featured on House.

I am grateful that we’ve been able to gradually slide into this. Last month Mark tested positive for the Celiac associated antibodies so we knew Celiac was a strong possibility, but the doctor gave us a list of a few other things it could be instead. Two weeks later Mark had an endoscopy/colonscopy and we got a 99% diagnosis of Celiac, but had to wait another week for the biopsy results to be sure. This gave Mark and me lots of time to research the disease, learn what a gluten-free diet would entail, and get used to the idea.

I’m really proud of Mark. He is a “foodie,” so having to give up a lot of his favorite foods is a huge sacrifice. His doctor said if he follows a gluten-free diet he will hopefully go into remission within a few months, but if he ever re-introduces gluten (in any real amount) he’ll get sick again. To that end we’re getting used to some new foods, cleaning out the pantry, and creating a better method of food storage (because I’m not going totally gluten-free). We’re also very particular about what foods Menininho eats because his immune system is still developing. If we keep gluten out of his system now, his pediatrician said we have a better chance at preventing him from getting Celiac (hard to know for sure, since the exact cause isn’t known, but it certainly won’t hurt).

Along those lines, if you’re interested in gluten-free cooking, I’ll be posting recipes to these blogs: Take That, Martha! and Healthy Eats.

I’m hoping that we can turn this bad luck into a kick-start into healthier eating for our family. 🙂

September 27, 2009
by marfmom
0 comments

Brad Paisley Concert

Last night, I had the opportunity to see Brad Paisley in concert and let me tell you, he was amazing! As evidence of his love for me and the fact that he’s a patient man, my husband agreed to accompany me. Saying “Mark isn’t a country fan” is kind of like saying “Hugh Jackman isn’t a bad-looking guy”; a gross understatement.

We were able to get to the amphitheatre with enough time to find a decent piece of lawn before the first opening act. Jimmy Wayne (who I’d never heard of) was about as country as Case Western, which I guess is why Mark liked him. I felt bad for the guy…he knew no one was there to see him. Dierks Bentley was the second opener and he was excellent. My only gripe was the length of time it took to clear and re-set the stage between sets.

Now rest assured, we weren’t bored. Because we couldn’t see the stage too well from the lawn, a large screen was erected. During the set changes, a cell phone company sponsoring the concert offered audience members the opportunity to text them and have their texts appear on the screen for everyone to see.

Some of these were pretty typical:
“Crystal your the best friend ever! Thanks for the ticket!”
“Happy birthday Allie!!!”
“Brad, your awesome!”
“Will you marry me?”

Some were perhaps better left untyped:
“I’m drinkin tonight because I found out I’m not pregnant.”
“Matt, you have a sexy girlfriend!”
“N*Sync needs to get back together.”
“Brian I wanna baby lets make one!!!”

“Hey, give me your phone!” Mark commanded at one point. “I am going to send a text!”

A few minutes later he proudly pointed and read (shouted) aloud as his message ran across the screen:

“Stop misspelling “you’re”!”

Yee-haw.