Just Heather

Long time, no see!

  • Anyone who could make it around the world in 80 days, clearly didn’t stop to visit family. Christmas alone took us 6.
  • Through a series of gluten free trials and challenges, it would appear that all 3 of our children are celiac. Updates to come when I have more time.
  • The chicken pox vaccine doesn’t work for shit.
  • Sick days plus holiday break makes for a very, very long 3 weeks.
  • The love of baths is clearly genetic. The wonders of an oatmeal bath have created yet another addict.
  • 9-year-olds do not know how to read in a tub without soaking the book.
  • I, however, have successfully read 5 books in the tub since Christmas.
  • Speaking of books, I once told my uncle that I would love to own James Whitcomb Riley books, but they are too expensive in our flea markets. Though I haven’t seen him for several years, I just received my 6th book in the mail from him this week. Also, though I don’t remember ever mentioning that I wanted to find Alice of Old Vincennes (my hometown), he sent an antique copy last month!
  • It’s Girl Scout cookie time! And my cookie mom will be out of town when the orders are due!
  • Also, the internets have suddenly decided that I don’t need to receive any email from said cookie mom.
  • Gluten free diet + sneaky child who loves to climb=very cranky, glutened child who doesn’t seem to understand cause & effect
  • Molars really hurt on the way in, poor baby!

I remove crumbs in a single swipe.
I stop cross contamination with the wipe of a sponge.
I decipher ingredient labels with my finely tuned eyes.
I am…
(dramatic pause)
Allergy Mom!

(Sort of.)

Lorelai’s allergy skin test was this morning and it was a good news/bad news kind of day. The good news is she tested negative for everything. The bad news is we still don’t know why she is reacting to certain foods. The doctor said she most likely has very sensitive skin, which explains the rash reaction to high acidic foods (like strawberries). She turned red with every skin prick, even the negative control, so the fair skin concept holds up well. The other dietary reactions she has experienced the doctor called food intolerance, though not a true allergy.

The good news with that is she will probably outgrow most of it, and we shouldn’t have to worry about anaphylaxis or anything severe. The bad news is it brings us back to the original celiac disease concern. The only way to confirm that diagnosis is with a biopsy, and she has to go back on wheat first. We’re declining that for now, but may consider a challenge when she’s 4 or 5. I see no reason to put something back in her diet that causes any sort of reaction, even if she isn’t officially allergic.

Right now we’re going with the theory that reaction trumps results. If she reacts to food, I don’t care what the test results say. The doctor recommended keeping her off wheat, corn, beef, and chicken. We’ve been avoiding dairy since she was 2 months old, but now that her stomach is healing from the wheat damage we may try reintroducing milk. It would be much cheaper and so much easier to have 1 type of milk in the fridge. I plan to try it after her pediactric appointment in a couple weeks.

Last week I ran across some coupons for a few of Lorelai’s gluten-free regulars. Today I was super excited to find her favorite cookies on sale. Combined with a coupon, they were almost like buying regular cookies! I’ve discovered that my favorite grocery store carries a large variety of gluten free products. It’s helping me balance the new, costly diet with my frugal (read:cheap) ways. These last couple months of buying specialty food for the baby is the first time in 10 years I have paid full price for groceries.

Today I also made her first dentist appointment. She’s younger than he normally sees, but with the chance of celiac disease still out there I’m not taking chances. The disease causes defects with tooth enamel, and our pediatric dentist agreed an early start with her dental care was warranted.

In 2 days, we spend the morning with a pediatric allergy and immunology specialist. We’re looking at a long day of skin testing, and some more blood draws. I’m hoping we’ll find the rest of the normal people food that’s poisoning our daughter. My mother calls me a neurotic hypochondriac, but she’s getting better on an elimination diet so it’s clearly working. So far we know wheat and dairy with almost certainty and suspect corn, chicken, beef, and strawberries.

It will be such a relief to have it over and know for sure what she can and can’t eat. Then we can put together a balanced diet (hopefully—protein is appearing to be a problem with high allergens like eggs and peanuts our only alternatives). We’ll finally be able to make she gets the nutrition she needs.

Today was Lorelai’s 3rd full gluten free day. It came with improved health, more energy, and excellent news from her doctor. Her lab results came back today and doc reports she is not celiac. Because she has shown improvements on gluten free, we—which includes her doctor—are keeping her gluten free for at least the next couple months.

At her 1-year checkup, she’ll be weighed, measured, poked and prodded. He’ll then refer her to an allergist who will poke and prod some more to determine what [other] foods cause allergy symptoms. For now we’re thinking dairy and wheat, but it could boil down to something more specific or completely different under further testing.

I’m happy that it is not the lifelong disease that is celiac, but I don’t like not knowing what is causing her problems. It’s become obvious over the last few days that going gluten free is beneficial to her, so I suppose it doesn’t really matter what the official cause is. At least now there is still the slightest chance that whatever it is could be something she’ll outgrow.

Today was Lorelai’s second day on her new gluten free diet. I don’t know if it is my wishful thinking or discernible results, but I actually think I’m seeing improvement.

Her naps were much less erratic today than they ever have been. Normally, she takes 3-4 naps of around 1-1.5 hour each. Today she took 2 good naps, totaling about 3.5 hours. Plus, hubby reports that she wasn’t overly tired at bedtime, though she did go right to sleep.

Her diapers have never been a real issue, which is why the celiac disease discussion was set aside at first. However, it has always been incredibly obvious when she was filling a diaper. That crap takes a lot of work! Today, she was dirty twice and we didn’t even notice until she suddenly smelled bad.

The last notable change could be an utter coincidence. Her development is not too off, but she is on the tail end of most milestones. However, there is no way to tell when she would have pulled to standing on her own anyway, though there is the chance that she was able to stand in her crib today because she has more energy than usual.

Still no word on her labs, but I’m encouraged by the progress we’re alredy seeing.

In our infinite patience, we have decided to exclude gluten from Lorelai’s diet even before the the test results are back. In all my panic-driven research, I have realized she has numerous symptoms of celiac disease, though the only common symptom is her weight problem. I also discovered that breastfed babies present with atypical symptoms because the antibodies in mama’s milk protect the infant from serious gastrointestinal infections.

Whether she is diagnosed as celiac or not, it seems a gluten free diet may relieve some, if not all, of her symptoms. Non-celiac gluten allergies and sensitivities present with many of the same problems. Our thinking is that a gluten free diet won’t hurt, but there are many indications that it might help. We plan to keep her gluten free until her 1-year checkup even if the test is negative. We can track her progress and weight over the next 3 months to determine if a gluten free lifestyle would be beneficial.

I made my first visit to Wild Oats Marketplace this afternoon to pick up some cereal and finger foods to replace the potentially-poisonous Cheerios and Gerber Puffs. I was rather pleased with both the selection and the prevalence of gluten-free shelf tags. It made the entire foray into organic shopping quite easy. I also wandered the aisles to see what else was available in case the gluten-free, dairy-free diet becomes long term.

Did you know she can still eat pizza? I can’t imagine that soy-cheese, rice-crust pizza would actually taste that good, but to a child who has never known the difference I suppose pizza is pizza. She seemed to like the organic Teddy Puffs I found for her, which taste remarkably like Cheerios even though they are made from rice and corn instead. I also purchased Gorilla Munch cereal and (gluten-free) arrowroot cookies, a staple among older babies and toddlers.

I’m keeping my fingers crossed for a phone call tomorrow. Even though I have a plan and am feeling a bit more empowered by newfound knowledge of the disease, I will be on pins and needles until I know for sure.

For some reason I can’t seem to put into words the most difficult things in my life. Others share their struggles so eloquently, but I tend ignore my greatest challenges here.

For the last 5 months we have been dealing with the dreaded “failure to thrive” notation at Lorelai’s checkups. She dropped weight percentiles at her 4 month checkup, but no one was overly concerned because sometimes a baby’s weight will dip now and then. At her 6 month checkup, it dipped yet again. We then began monthly weight checks. At 8 months she moved up to the 10th percentile and it looked like things were moving along.

Between 8 and 9 months, she lost 2 ounces. That may not sound like much to you and me, but to an infant who is supposed to gain 8-12 ounces per month, that’s a lot of weight loss. So two weeks ago I took my littlest baby girl to the hospital and allowed them to do this:

2006-08-002

The results of her CBC and MP came back normal so doc wanted to play the wait and see game. Because I’m not interested in “wait and see” where my children’s health is concerned (but mostly because I’m incredibly impatient), I made an appointment to discuss the issue and also told them about some rash problems she has had. She broke out in hives after eating an orange (though it was juicy and could have been a skin sensitivity issue due to the mess on her face) and after her sisters ate strawberries.

We went back to the hospital this afternoon so they could take more blood and run a series of tests to detect celiac disease. If that is positive, we get the joy of a consultation with a GI and a lifelong adherence to a gluten-free diet. If it is negative, we move on to a consultation with an allergist and the infamous prick tests to determine what is causing all the allergy symptoms.

Most signs do, indeed, point to celiac disease though the symptoms are fairly generic and could fall into many other categories. I’m keeping my fingers crossed it is something else. While I think I could handle quite easily a few specific allergies, celiac disease is a whole different ball game. CD is not an allergy—it is an autoimmune disease triggered by gluten. And while the disease can be onset at any age, it is not something she’ll outgrow.

I’ve been keeping my fingers crossed that her lactose intolerance was an infant thing that she’d outgrow quickly. If we get the CD diagnosis, it’s likely that the lactose intolerance will stick too as they sometimes go hand in hand. We’re talking a lifelong gluten-free, dairy-free diet.

We should have the CD results within a week, hopefully by Monday. I’m a natural worrier though, so it should be a fun several days.

4:00am: Summoned by vomitting Stacia
4:15am: Gag while attempting to cleanup said vomit
4:20am: Decide cleanup can wait until morning
4:21am: Settle sick kid onto my floor
5:15am: Stacia pukes again
5:20am: Settle sick kid onto floor once again
7:15am: Early morning wakeup call by baby
7:20am: Baby back to sleep. God bless her favorite lullaby CD.
7:25am: Attempt to go back to sleep
8:15am: Brenia awake for the day
8:20am: Convince her to play quietly in her room
8:21am: Briefly wonder at her aquiescence; call school to inform them of sick kid’s absence
8:25am: Attempt to go back to sleep
8:45am: Awake to Stacia vomitting
9:00am: Breakfast for non-sick kids
9:15am: Launder puked-on bedding/clothes that shouldn’t have been on the floor
9:25am: Throw away puked-on toys that shouldn’t have been on the floor
9:30am: Spray carpet cleaner on the floor
9:35am: Call pediatrician for medical instructions
10:15am: Hubby awake—also sick—announces intention to take a bath in hopes of relieving what ails him
10:45am: Walk in on hubby taking a shower
11:15am: Notice a familiar dripping sound
11:16am: Mad-dash around the dining room to save all pictures from massive water damage coming through the ceiling
11:20am: Frantic phone calls to plumber, water restoration, and insurance company
12:00pm: Plumber arrives
12:30pm: Lunch for non-sick kiddos
1:00pm: After cutting giant hole in dining room ceiling to access pipes, plumber determines there is no leak
1:15pm: Plumber finds several cracks in bathtub
1:30pm: Hubby pissed that the one time he takes a bath it leaks, while my nightly bubble baths do nothing
1:45pm: Pay said plumber; show Chem-Dry into the wet area
2:00pm: Wonder how an $84 plumbing diagnostic fee became $127 when he didn’t actually fix anything
2:45pm: naptime for all kids
3:15pm: Instructions from Chem-Dry for 3-5 days of industrial fans and dehumidifer—again
3:30pm: Collapse onto couch for much-needed nap
3:32pm: Snack for baby
4:00pm: Nap for baby
4:15pm: Collapse onto bed for much-needed nap
4:20pm: Console non-sleeping baby
4:25pm: Collapse onto bed for much-needed nap
4:30pm: Console non-sleeping baby
4:35pm: Collapse onto bed for much-needed nap
5:00pm: Awakened by sickling to turn on the downstairs television
5:05pm: Find hubby asleep on the couch right next to the remote for said television
5:10pm: Retrieve fussy baby; Realize “lunch” consisted solely of milk
5:11pm: Feed baby
5:20pm: Start dinner
5:50pm: Realize starting dinner meant deciding what to fix while juggling baby on hip; attempt to put fussy baby down so I can actually cook something
6:00pm: Peel potatoes since for mashing as it’s about the only thing the sicklings will eat
6:15pm: Marvel at the disaster that is my house
6:45pm: Give up on any sense of routine and put baby to bed early
6:50pm: Wish I could end the day and go to bed early myself