Tuesday, March 24, 2009

Falling apart at the seams

I'm not sure what to write about, to be honest. Life has been a bit overwhelming lately, mostly because I'm just. so. tired. I'll try to hit the highlights - or low-lights, as they may be.

-My dad's cancers - he met with the docs, and he is scheduled to have the kidney tumor removed on May 8. They are hoping that will completely take care of the kidney cancer, as any further treatment would be difficult in light of his Crohn's disease. Once he is healed from that surgery, they will remove his prostate because of the prostate cancer. According to my sister, the docs sounded very hopeful that the surgeries will provide complete remission.

-I went to the doctor a couple weeks ago regarding this unbelievable fatigue I've been having. It's NOT "you have 3 kids, 2 of which are 15 month old twins" fatigue. And thankfully, my new doc did NOT try to tell me it was - she took me seriously and ran lots of tests. Within 24 hours, she had diagnosed me with Hashimoto's Disease, which is an auto-immune disease resulting in hypothyroidism. So now I'm on thyroid medicine and will have my blood rechecked in 2 months. Additionally, she did another, ahem, less pleasant test, which was positive for blood, and I now have to have a colonoscopy. Good times ahead.

-On the 17th, we celebrated Anthony's 4th birthday! I cannot believe my baby is 4 years old already! Darrell took the day off work, and we spent it at Disneyland. It was more crowded than we'd hoped, being a weekday - due to spring break - but we still had fun. Pics will come, I promise.

-Mackenzie saw a geneticist last week, as a follow-up from last year. Due to her still having some hypertonia (she's too stiff) and gross motor delays, they went ahead and tested her for Charcot-Marie-Tooth disease. That's the hereditary neuromuscular disease that I have, and each child has a 50% chance of inheriting. Test results could take a month or more to come back.

-The pediatrician has referred Mackenzie to see a neurologist, as well, for the same reasons.

-Makayla has continued to have what appear to be allergic reactions - eczema on her cheeks, diaper rash, diahhrea, spitting up - to some foods other than milk. In addition, her nose will. not. stop. running. ever. The pediatrician is sending her back to the allergist - YAY!! And NOT to the same allergist who previously told me to "stop reading so much." Ahem.

-Darrell left this morning and is headed to Sacramento later today, not to return until Thursday night. He found out yesterday. I found out last night. Not really the kind of surprises I like so much.

-I do get to look forward to our church's women's retreat, coming up the first weekend in April - I'll be gone for a whole weekend! No children for an entire - or close to - 48 hours!! Just me and my friends...and my pump, of course, since I'm still breastfeeding...

Here's to hoping my new medicine kicks in fast, so that I have the energy to blog, and craft, and blog about my crafting, and take my kids out of the house more, and cook dinner again, and clean my house, and craft, and blog, and did I mention crafting?

Thursday, March 12, 2009

911, what's your emergency?

I got to hear those words yesterday, for the first time in relation to one of my kiddos. And even though I didn't really feel like I needed to be calling 911, and even though all three kiddos were running around playing just fine, my hands and my voice were still trembling as I told the dispatcher that one of my 14-month-olds was having breathing difficulties.

Anthony, of course, thought it was all very exciting as he could hear the fire engine's sirens coming from a distance, knowing it was OUR house they were coming to. He was a bit perplexed, though, when he heard me hang up from talking with the advice nurse, and I said I was going to call 911 - he said, "But 911 is for an emergency, do we have an emergency?" Smart boy.

Makayla's been sick for....well, like, forever...or at least since November! Months, for sure. She'll start to get over a cold and before it's ever gone, she's got another one. At any rate, a week ago Monday, she had become increasingly sick, with a high fever that just wouldn't come down, even with tylenol and motrin, and she was wheezing. Darrell took her to urgent care, and she was diagnosed with bronchiolitis and an ear infection. They put her on antibiotics and albuterol breathing treatments. She had gotten better, other than her runny nose (which never seems to go away), and I hadn't had to give her a breathing treatment in several days.

Then yesterday afternoon, she just wasn't acting like herself. She refused to nap, even though she was tired and kept saying, "Night night!", which in Makayla-speak means, "Put me to bed!" After a couple hours of trying to get her nap, I let her get up, and she was just irritable and fussy. Around 5:00, she spit up, which she normally only does if she's eaten/drank milk, and I know for sure she hadn't yesterday. Immediately after that, I noticed that her breathing sounded funny - not really wheezing, but a raspy, awful sound every time she inhaled...stridor. She looked fine, but she sounded awful.

I gave her a breathing treatment, which didn't help at all. While I was sitting there debating what to do, my friend who's a nurse called, and she could hear it over the phone, and said maybe she'd swallowed something that was in her airway. A short time later, it started getting louder, so I called the nurse-advice line at Kaiser. Note - at no point did she ever appear to be in distress. Through all of this, she was talking, playing, running around, acting completely fine. She wasn't having retractions or anything...she did spit up a few more times, and she sounded bad, but she otherwise acted fine. Anyway, the nurse at Kaiser asked me a couple dozen questions, listened to her breathing over the phone a few times, and told me to hang up and call 911 because she was having labored breathing.

Seriously?? I debated. What was I going to do with my other 2 kids? Did she REALLY need paramedics?? Couldn't I just drive her to Urgent Care myself? On the other hand - what if I started driving her, and she got worse in the car on the freeway, and then we're stuck on the side of the road waiting for paramedics? So I called my friend Allison, who lives nearby, and asked how quickly she could get here, and then I called 911.

I do think the firefighters kind of looked at me like I had 3 heads when they walked in and saw Makayla walking around acting perfectly fine and I told them SHE was the one I called about. Of course, by this time, she was starting to sound a little better, and she clearly was NOT in respiratory distress - which is what I told the nurse on the phone. The firefighter listened to her breathing with his stethoscope and said her lungs did have a lot of junk in them, but her oxygen saturation was 100%, and he made it abundantly clear that he did not feel she needed to go to the hospital and certainly didn't need to be transported by ambulance.

Allison and her husband stayed with Anthony and Mackenzie while I took Makayla to Urgent Care. After sitting there for 3 hours waiting, she sounded MUCH better. The doctor agrees it was stridor, and could still hear some stuff going on, but didn't feel she needed any further treatment. He thinks she may have aspirated (choked on/breathed in) some spit up, causing the stridor. All of her spitting up and coughing probably took care of it, which is why she started sounding better on her own. He did say we need to keep an eye out for fever or any other signs of pneumonia, which is a risk from aspiration. He also thinks she has some ongoing reflux that may need to be looked at and treated (she was previously on reflux meds, but has been off them since she was 9 months old).

She did fine during the night, and other than her normal runny nose, seems to be fine today. Let's home this was a one-time occurrence and we have no repeat performances!! And a BIG thanks again to Allison and Bryan for coming to the rescue!! They even beat the fire engine getting here!

Sunday, March 01, 2009

Allergy woes

I think I mentioned in my 12-month appointment update post that I had asked the doctor to test Makayla for a milk allergy, which the doctor reluctantly did. (Why I have to keep convincing these doctors that I, their mother, DO, in fact, KNOW my children, is beyond my understanding.) The doctor was far more surprised than I was when she called to report that the results came back showing that Makayla is, in fact, allergic to milk. While she's not currently anaphylactic to milk, this type of allergy does have the potential to turn into anaphylaxis, with no warning, so the doctor did prescribe an Epi-Pen, after I asked for it - again, WHY did I have to ask for it?!

The thing is, even though I really did figure she was allergic to milk - it was hard to ignore the bleeding diaper rash after eating yogurt and cheese, the bright red eczema on her face after eating dairy, the red ring around her little bottom, the constant reflux acting up anytime she ate dairy - I hadn't really spent much time thinking about what a positive test would mean for us. It's one thing to say, okay, so she can't have milk, yogurt, cheese. Those are pretty easy to cut out, and cow's milk is easily replaced with rice milk (or soy milk, if you so choose; i chose rice milk for a myriad of reasons). I had even briefly acknowledged, somewhere in my mind, that this would mean I would need to start reading labels on foods, to check for milk. Two things I didn't really spend any time thinking about? Eating out. And breastfeeding.

I'll talk about the breastfeeding first, because it impacts eating out too. Makayla is still nursing, wholeheartedly, and actually probably still gets the majority of her calories from breastmilk rather than from solid food. She is not ready to wean, nor am I ready for her to do so. The doctor said, yes, I need to cut all milk out of my diet too, if I plan to continue to breastfeed. So now I can't have milk, yogurt, cheese, ice cream, coffee creamer, frozen waffles, or a slew of other things that made up my diet as of 3 weeks ago. I miss cheese. Chicken enchiladas without the cheese? Not the same. Soy sour cream? Not the same.

My first obstacle - finding an acceptable coffee situation for the mornings!! I'm used to using half-n-half, flavored creamer, or the Tassimo cappucino discs for my coffee. All of those are now off limits. "Non-dairy" creamers? Yeah, they're not ACTUALLY non-dairy...they're just lactose free, but they still have sodium caseinate in them, which is from milk, and therefore they are off limits. Soy milk - hate it. Rice milk? Too thin, and by the time I get enough in my coffee to make it light enough, all I taste is rice and no coffee. After a week and a half of trial and error, I finally settled on almond milk mixed with espresso. It's not ideal, but it will do for now.

So not only do I have to read labels on everything - and I DO mean everything - for Makayla, but also for myself. This past week, we had dinner at a friend's house. She was making taco meat with taco seasoning. I asked her to check the ingredients for milk, and she was incredulous to find that sure enough, there was milk in the seasoning. Milk is hiding in everything - bread, onion rings, seasoning, soup, cookies...it's crazy. There's also the issue of cross-contamination - when a product doesn't actually have milk in it, but it is made on equipment that is also used to make milk products, or is made in a facility that makes milk products. So far, I am ignoring cross-contamination warnings. Until and unless we see a reaction from a cross-con issue, I'm not taking it that far.

And then, there's eating out. Grabbing a bite to eat on the go has taken on a whole new challenge, because now I can't just stop anywhere and order whatever sounds good. I need to go online first and check their ingredients lists to see what on the menu is safe for me to order...and if I don't, I'm taking a chance on getting a 16-year old who doesn't know and doesn't care at the drive-thru when I ask, "Does your bun have milk in it?"

This week, when we were out shopping, Anthony wanted a little personal pan pizza from the food counter at Target, so I got it for him to eat in the car. He doesn't eat the crusts, and Makayla was starved. We got home, and what I SHOULD have done is run upstairs to get online and check Pizza Hut's website to see if there's milk in their pizza dough. What I did instead was give Makayla the crust and ate some myself, figuring, "The cheese is off...what are the chances there's actually milk in the dough?" After she ate, I put her down for a nap. When she woke from her nap, she nursed, and then promptly threw up...pizza dough. I checked their website, and sure enough, there's milk in their pizza dough. That night she was up half the night with bad reflux. Way to go, mom.

It also creates challenges with regards to being around other kids...heck, even around her own siblings. Anthony has actually been great about making sure to leave his milk sippy cups either on the kitchen table or in the refrigerator, and he understands that milk will make Makayla sick. He also understands that she can't have cheese, yogurt, or other foods with milk in them. But Mackenzie's formula is dairy, and I have to make sure to not leave her bottles down where Makayla will reach them. And playdates - ack! They're suddenly a scary phenomenon, with little kids and babies walking around with bottles of milk-formula and sippies filled with milk. Makayla is QUITE the bottle/sippy thief, too, and will pick up whatever she finds and drink it. The same day of the pizza dough incident, we were at a playdate, and Makayla got hold of a bottle with milk-formula in it and put it in her mouth. I don't know if/how much she drank...but she got a double-whammy that day.

Another part of the fun is we now get to keep a food journal for her - and for me, since I'm nursing. Everything she and I eat and drink gets recorded - FUN!!

I do suspect that she had a reaction last week to eggs. I gave the girls some egg salad one day, and I'm pretty sure that's the first time Makayla's had eggs directly. The next morning, the bright red eczema was on her cheeks again, and I know she didn't have any dairy the previous day. She's going to need to be tested for eggs.

On a positive note, I have discovered two delicious things that I may not have ever disovered if I didn't have to go dairy-free! One is the new Berry Chai Tea Infusion at Starbucks. I've tried it both iced and hot, and I think I prefer it iced. It tastes sweet and juicy and spicy and the flavors are so intense. I told my friend it tastes like "Christmas in a cup." The other is Ciao Bella Blackberry Cabernet Sorbetto - YUM!!! Wow! The first bite grabbed me - it is SO intense and full of flavor...I highly recommend it!

There are many kids who have MANY more allergies than just milk, and I know that this is NOT the end of the world. It will take time to adjust and settle into our new way of doing things, and it will take time for my taste buds to adjust to different foods. But I also just wanted to vent a little and keep you all updated on what's going on in our little part of the world.


Related Posts Plugin for WordPress, Blogger...