Friday, May 31, 2013

Weekly Menu

I get asked a lot to post about things that we eat.  Now that we are just avoiding Rapunzel's known allergens, and not eating gluten free or dairy free, I feel like our menu isn't much different from anyone else's.  But I figure the blog's been slow lately, so I'll maybe post once every week or two with a run-down of what we're eating that week.

For the past few months, I've been doing my grocery shopping on Wednesday nights after church.  Eric takes the kids home from church and I get to go to the grocery store(s) by myself!  It makes it a late night, but it's so much easier to do a big shopping trip (which sometimes includes more than one store) without the kids tagging along.  So our weekly menu runs from Thursday-Wednesday.

And yes, I menu plan every week.  When I don't, I end up standing in the kitchen starting blankly into the pantry, and we end up eating cereal that night.  We pretty much always eat out on Sundays after church (and pack a lunch for Rapunzel), but rarely eat out during the week.  There are times however, when we'll order a pizza, I'll get Eric to pick up something on his way home, or we'll grab some Chick-Fil-A on the way to church in the evening.  So when those times happen, I'll usually just bump the missed meal to the next week.

I plan out lunches for the kids, but I usually eat leftovers or a salad or some other quick meal.  Sometimes I'll eat the same thing as them for lunch.  Eric takes leftovers, makes a sandwich, or eats out for lunch.  I only plan for the "main dish" for the kids lunch though and I buy a variety of fruits/veggies each week to go with them.  Some things I buy are apples, bananas, grapes, pears, pineapple, watermelon, papaya, mango, kiwi, strawberries, blueberries, raspberries, carrots, celery, cucumbers, cherry tomatoes, broccoli, cauliflower...  I'll also throw in some chips, crackers, pretzels, or other snacky type foods.

Here is our menu for this week:

lunch - turkey sandwiches
dinner - potato soup, breadsticks
lunch - egg salad sandwiches
dinner - tomato basil pasta, french bread
lunch - pizza
dinner - corned beef hash, fried eggs
lunch - BBQ at Eric's work Family Day
dinner - cereal/sandwich/starve
lunch - breakfast burritos
dinner -  chicken pot pie
lunch - grilled cheese, tomato soup
dinner - Taco Soup
lunch - Sunbutter Jelly Sandwich
dinner - chicken spaghetti, green beans

Wednesday, May 29, 2013

Bathtime Reading

Rapunzel likes me to read to her when she is soaking in the bath.  She soaks at least twice a day, every day.  I love our reading time together.  It's a great chance for me to spend one-on-one with her and reading keeps her still and content while she's soaking.  I started out reading some classics that I'd normally choose for read-alouds.  But Rapunzel wasn't really getting into them.  She wanted FUN books for our bath reading time.  She's really into the Rainbow Magic Fairy books.  So I read her one or two of those.  But they were such fluff books that they made me want to gouge my eyes out!  So we went to the bookstore to try and find a happy medium.  And we found it.

Rapunzel picked out The Wide-Awake Princess by E.D. Baker.  She picked it because it was about a princess and the picture on the cover looked like the character Rapunzel.  I glanced through it, and went ahead and bought it.  We were both so pleased with this book.  It appealed to her because it referenced a lot of different fairy tales and stories that she's familiar with, but still had it's own storyline.  The characters were interesting and really held her attention.  It also helped that I used fun voices when I read it.  It appealed to me because while it was definitely a fun book, it was not just fluff.  It was very well written and used a great vocabulary that I loved for Rapunzel.

We quickly ordered the sequel, Unlocking the Spell.  We loved it as well.  We are currently waiting on a box set of another series by the same author, that is backordered on amazon.  While I still prefer to read classics during our family read-aloud time (we are currently reading Bridge to Terabithia, slighly edited as I read), I want to keep our bathtime reading a little lighter, so these books are perfect!  It looks like there are still other books by this author that we will check out soon!

Thursday, May 23, 2013

More on The BIG Appointment

Like I said, I was so anxious to blog about our appointment yesterday, that I left out a lot of info.  I still feel a little overwhelmed with all the information we got yesterday, but in a good way.

I first, want to thank a friend of mine, who works as a child life specialist at Texas Children's.  She was not on the schedule for yesterday, but made sure to send one of her colleagues over to check on Rapunzel.  Child life specialists work with the kids to help reduce their anxiety and help them cope with anything in the appointment that might be scary or overwhelming for them.  We met with a wonderful specialist, but Rapunzel was doing SO well, that she didn't even need to stay!  I couldn't believe it!  I just knew that Rapunzel's anxiety would be high and that we'd need all the help we can get, but she just keeps on surprising me!  The specialist assured us that she'd be around and if we felt like we needed her to come back, to just let one of the staff now, and she'd be over.  We never needed to call her back, but it's so great to know that they're there if you need them!

When we were talking about epi-pens, we realized that Rapunzel is right on the borderline of needing to move up from the epi-pen Jr. to the regular epi-pen.  So because we were getting a new prescription (to have both on hand for her), we had to go through the epi-pen training again, which was fine.  Someone brought in a little video for us to watch and a couple of the trainer epi-pens.  She asked Rapunzel if she'd ever played with one before and Rapunzel got a horrified look on her face and said NO!  Then she tossed it to her and Rapunzel about jumped off the table to get away from it.  She didn't realize it was just the trainer and not a real epi-pen and I've emphasized to them many times that we don't play with the epi-pens! LOL  I guess that sunk in, which is good, but it was hilarious to watch her reaction to that!

So, some of the things we talked about with the dr. yesterday were, Rapunzel's allergy testing results.  We went over her positive tests and also anything else we had eliminated and things we were suspicious of.  We explained that she's tested positive for corn, soy, peanuts, peas, and oranges, and that we also avoid all tree nuts because of her sister's allergy.  We told her about our separate gluten and dairy elimination diets, and how we didn't notice any improvement in her skin from their removal.  And we told her that we were slightly suspicious of shellfish because of a possible small skin reaction she may have had after eating shrimp (we aren't sure if it was the shrimp, or just a typical flare).  So she ordered specific IgE levels for corn, soy, peanuts, tree nuts, pea, orange, fish, and shellfish.  This will let us know better if she is truly allergic to any of these things, and we may perhaps be able to add some of it back into her diet.  She also ordered a total IgE to compare to the two previous labs she's had done.  Normal IgE is typically under 600.  In February her IgE was 3200.  A month later in March, it was 8200.  She wants to see if that was a flare, or if it is steadily increasing.  That will help her to narrow down some options.

Some other things we talked about were genetic mutations.  There is a filaggrin gene that she wants to look at.  And we also mentioned to her my MTHFR disorder, which can sometimes cause skin issues, we've read.  So she will be testing her for those things, and several other genes that she was not too specific about at the appt.  We will be doing that at our next appt. though because we couldn't do too much at once, since everything requires a certain amount of blood sample.

She also told us that she had a few ideas of things that we might can look into depending on some of these results.  Again, she wasn't too specific yet, but said there were things that only their office does, which made me even more confident in our decision to get our appt. there.

I told her that I appreciated her looking into all these other avenues.  We weren't satisfied with just simply treating the eczema.  We may never know what's causing it, but I won't be satisfied until every stone is turned and we've exhausted looking into anything that may be causing it.  If there is anyway that we control the source, then I want to do it.  Anything to help the quality of life of our sweet girl!

Wednesday, May 22, 2013

The BIG Appointment

I am so anxious to blog about this that I'm attempting to do it from my phone on our drive home!

Everyone tried to hide from the camera, except Aurora, who stuck her finger up her nose!

We got up early this morning and started our trek to Houston. We dropped Belle, Hercules, and Aurora off with family and then headed downtown to Texas Children's. The whole hospital is a pretty cool looking place. It's filled with all sorts of funny animal statues and decorations. Rapunzel thought it was so fun!

They got us back pretty quickly. When they tried to get Rapunzels vitals, she freaked. I gave her a Calm Drop and we made it through that. Then they moved us to an exam room. 

Rapunzel kept making this face when she caught us trying to take her picture. 

A few minutes later the resident dr. came in and asked us a ton of questions. Rapunzel really warmed up to her and for the rest of the appt. she acted like an old pro. She was easy going and let nothing bother her!  I was so incredibly proud of her!!

The resident left and talked with the Dr.  Then they both came in and talked with us. She let us tell her all of our concerns and our goals. I told her that basically, my goal was to figure out what was causing the eczema. Because we seem to have a pretty good handle on treating it, but its still bad. I used the analogy of a sick tree that I've heard before. Yes, we need to treat the branches, but you won't get anywhere unless you also treat the root. So I feel like we're doing ok treating the branches but I want to treat the root.

Proof that stress is a big trigger for her!  Look at this reaction on her neck just since arriving at the dr. appt.

She agreed 100% and we discussed many possible things that it could be (including allergies, but also other things that other drs have never addressed). 

We talked thoroughly about her known allergies, suspected triggers, and some genetic things. To be honest, we talked about so many things that my head is still reeling. It was wonderful. 

See... that face!

We spoke to a dietician to be sure that Rapunzel's dietary needs are being met with her strict avoidance diet. We were pleasantly surprised that she seems to be getting what she needs from her food and supplements. 

The dr finally ordered a lab panel of a few specific IgEs along with a few other things she wants to rule out. That was a lot of vials of blood!  There are still several things she wants to check based on these results, so we will go back in July to see what path we will pursue next. 

Even during the labs, Rapunzel did great!  She never cried, whined, or complained!  I almost cried because I was so incredibly proud of her. 

She applauded our diligence with Rapunzel's skin care regimen and our persistence in pursuing an answer. I get that a lot, but honestly, we do what we do to help our daughter. Any parent would do the same!

So, while we didn't walk away with answers today (not that I was expecting to either), I am confident that we are on the right path to finding them. 

I was overall highly impressed with the drs at this appt. It is totally worth the drive and I am so excited to have them on this journey with us!

Monday, May 20, 2013

Stuff Eczema Moms Say

Stop scratching!

Is there an ingredient list I can look at?

What color bandages do you want tonight?

You didn't sleep well last night, did you?

Stop scratching!

Time to order 6 more tubs of Vaniply Ointment!

I wonder if our HSA will cover coconut milk?

Put your socks back on!

Stop scratching!

Ok, I'll leave your hands unwrapped for breakfast, but then they're getting covered!

Honey, can you pick up more bleach, wrap, and cotton bed sheets on your way home?

Time to refill the Mupirocen again!

Stop scratching!

But I just trimmed your fingernails 2 days ago!

Is that 100% cotton?

Our dream vacation destination?  The Dead Sea.

Stop scratching!

I know I said you always have to wear socks, but I didn't mean in the pool.

Yes, it's time for new pajamas again.

She is to eat ONLY the food I packed in her bag.

Stop scratching!

Yes, it's sunbutter and jelly AGAIN.

What do you know about coal tar?

Time to add a third tub soak today.

Stop scratching!

It's cool outside, but the pollen count is too high - must play inside.

The pollen count is low, but it's scorching outside - must play inside.

We'll get some Chick-Fil-A on the way home from the allergist office.

Stop scratching!

Honey, did you remember to the pack the bedsheets in the suitcase?

Here's your gummy vitamin, probiotic, omega-3's, and magnesium.

Do you know how to use an epi-pen?

Stop scratching!

Saturday, May 18, 2013

Please Pass the Salt

We've been doing dead sea salt soaks for Rapunzel for several weeks now (months even?).  I can't remember when we started, but we've been adding 1c. of dead sea salt (from the actual Dead Sea in Israel) to her bath each night.  We read that the minerals found in the dead sea salt can help eczema patients by reducing the amount of water loss in the skin.  People with eczema have a skin barrier issue, which keeps their skin from retaining needed moisture, and also allowing in allergens and irritants.  I suppose I could say we've noticed an improvement.  She still flares, but we're able to better control it.  Is it from the dead sea salt soaks?  Who knows.  But we're going to continue them.

And after reading this article from the Chicago Integrative Eczema Center, I'm adding phototherapy to our list of things to ask the dr. about.

Friday, May 17, 2013

Half done with Swimming Lessons

Well, the kids have completed half of their swimming lessons and they've all improved.  Belle can swim on her own a bit now.  Hercules and Aurora both love "swimming" with their instructors help.  And Rapunzel.  Oh my Rapunzel.  I'm so proud of her.  She went from barely even putting her feet in the water on the first day, to doing everything her teacher asks now.  She LOVES going to swimming lessons.  She is confident when she's on her tummy in the water, and the teacher helps her with kicking, breathing, and strokes.  She gets a little apprehensive when she's on her back and they're working on floating.  But she's hanging in there and doing great!

I have to share something that another parent said to me about Rapunzel during a lesson.  Her son is in the same group as Rapunzel, and we were watching all the kids take turns floating on their backs (like Rapunzel is doing in the picture above).  Of course most of the kids relax and are trying to learn to float.  Rapunzel has a bit more apprehension about being on her back in the water, and was tensing up and making a grimace.  The (well-meaning I'm sure) mom made a "eek" face and said to me, "I'm sorry, but I'm a teacher, and all I can think about is what a hard time her teacher must have dealing with her during the STAR test."  I informed her that I actually homeschool her, to which she replied, "Oh, well good thing, because she wouldn't handle real school well at all."

Ok, two things here.  1)  Homeschool is real school. and 2)What on earth???  Why would anyone EVER think that is an ok thing to say to another parent?  Now, I know Rapunzel can have some pretty severe anxiety.  And my husband and I have both said that we don't know how she'd handle being in public (or private) school because of it.  But seriously?  I would NEVER say anything like that to another parent.  And I am just glad that Rapunzel was not within earshot to hear that.

I am so so so proud of my girl.  She overcomes fears and obstacles every day.

Tuesday, May 14, 2013

Words from Chicago Integrative Eczema Center

I just wanted to share this FB status update from the Chicago Integrative Eczema Center.  Rapunzel clearly falls into the "wet eczema" category.  Just looking at her IgE levels, which were over 8000 the last time she was checked, she is clearly hyper-allergic, and reading this just makes me that much more anxious to see the Immunologist.  Just one more week.

Status Update
By Chicago Integrative Eczema Center
I'm thinking about what a "cure" for eczema might look like, and I'm stuck. I want to believe it can and will happen, but I can't even think about what shape it would be. Would it be a cream? A pill? Gene therapy?

How would you use it? Just once and voilĂ , you're cured!? Or just for a few weeks and then you can stop? I just don't know.

Part of the problem is this idea that there is not just one "eczema". We're looking at several diseases here, at least. The more patients I see with eczema, the more I realize that one size does *not* fit all. In my mind, there are at least two basic types of eczema, something that Chinese medicine has recognized long ago: wet and dry. The truth is that these are not mutually exclusive, and I have seen patients change from one from to the other, so again, this is complex and I'm going to simplify it a bit here.

My sense is that the dry eczema (with very dry, sensitive skin) tends to be more of a primary skin barrier issue, like the filaggrin gene mutation. These folks tend to do well with lots of good moisturization, and seem to be more of the "intrinsic" type of eczema, meaning they have less allergies in general. I feel like I can get most of these folks under great control with little or no steroid use and keep them clear fairly easily.

The wet type of eczema tends to be more red, blotchy, almost hive-like, very widespread, and it gets oozy or "wet" very easily. These folks certainly have secondary skin barrier breakdown, but I feel that moisturizing only goes so far. They tend to get super allergic to many things, and tend to have off-the-charts allergies. These are hard. Steroids--and lots of them--seem to be the only thing that can calm them down at times, and these are the ones that seem to get steroid-dependent on me, making it a constant battle. For them, I think that the immune system is the primary issue and a cure for them would have to focus on rebalancing the immune system.

There are other types of eczema too, but these two showcase why I am so skeptical when folks say that they can "cure" or even treat eczema with one approach. That, to me, is the power of the integrative eczema center: we're trying to integrate approaches from within Western medicine and outside of it to get folks better.

Sunday, May 12, 2013

Wedding Weekend

Eric's sister got married this weekend, so we made a quick trip to Houston for the festivities.  It doesn't matter if we'll be gone for 1 night or 100, I have to fill the van with all our needed meds, creams, ointments, and such.  I almost didn't even pack the nebulizer this trip, because no one has needed it in weeks.  Turns out, it was a good thing I did.

Side note -  We stopped Rapunzel's dairy-free diet a few days short of 2 months, because we hadn't noticed any difference, and I knew it would make traveling this weekend easier if she could have dairy.  She still loves her chocolate coconut milk in the mornings, so she'll continue to drink that.  And she still likes the vanilla oat milk for cereal, so she'll continue to use that as well.  But I'll go back to using regular milk when cooking, and using butter and cheese.

We left San Antonio around 10:30am Friday morning.  We made our obligatory stop at Buc-ee's, where the kids got to enjoy Dippin' Dots!  There are a few flavors that Rapunzel can have, and they all thoroughly enjoyed it.

We made it to Houston and stopped at Chick-Fil-A for a late lunch.  The kids got to run off some energy in the play area.  Then it was time to check into our hotel.  I don't know what it is about kids and hotels, but they sure think it's so cool.  Of course, they were convinced we'd stayed in this hotel before (we hadn't) because it looked the same as the last one we stayed in.  I tried to explain to them that most hotels look the same.

We took our time getting everyone dressed and ready for the wedding that evening.

 I didn't get a picture of Aurora, but you can be assured she looked adorable as well!

The wedding itself was gorgeous.  My sister-in-law looked beautiful.  It was great seeing everyone and visiting.  I am so so happy for them!!!

(This is the bride and groom with all of the bride's siblings.  It's hard for me to believe how grown up everyone is now.  When Eric and I got married, almost 12 years ago, they were all just kids!)

By the time we left the wedding and got back to the hotel, it was late and the kids were so tired.  I got Rapunzel into the bath while Eric got the rest of the kids into bed.  Her poor skin looked wretched after our long day, and she was more itchy than usual.  So I creamed her up good and covered and wrapped her.  She was coughing a lot and starting to wheeze, so I ended up giving her a breathing treatment before she went to sleep.  Good thing we brought the nebulizer after all!  We brought our own sheets and blankets to put on the bed for her, and got her all tucked in.  But she was still up most of the night, scratching and coughing.

Saturday morning everyone woke up and Eric took Belle, Hercules, and Aurora downstairs to get some complimentary breakfast.  I had packed a special breakfast for Rapunzel of cinnamon rolls, blueberry muffins, and chocolate coconut milk.  She was so excited and loved it.  Belle brought me back a plate of food that she picked out especially for me, along with a cup of coffee.  Love that girl!

After Rapunzel ate, I got her back into the bath and her skin was looking a little better.  Her arms were still pretty bad, so we had to wrap those up.  After everyone got dressed, we packed up and checked out of the hotel.  Then we picked up some Rapunzel-safe pizza and headed to my mother-in-law's for lunch.  Some of Eric's siblings and their families came over too, so we got to visit some more.  I miss not living close enough to get to see everyone all the time, but I enjoy spending time with them when I get to!

Aurora especially had fun with her cousins.  She cracks me up because she'll go from saying "My cousin hit me, she's so mean to me," to "I love my cousin, she's so nice to me," in about 2 minutes.  True family right there!

We spent a few hours there and then we met up with my grandparents at the Kemah Boardwalk.  They took Hercules on the train, while I took the big girls on a couple of rides.  Aurora was asleep on Daddy's shoulder for awhile.  Then we walked the boarwalk and the kids got to feed the fish (and the crazy seagulls).  They wanted to take their pics by this shark, and Rapunzel told me she was going to pick his nose.

And she totally did. Ha!

When we left there, we met up with my mom too at Tookie's for some burgers.  I brought our own bread and had them use it to make a grilled cheese for Rapunzel.  She was so excited to eat a grilled cheese again!  The kids had fun hanging out with their grandparents.

Eric wanted my mom and I to take a picture together because we were looking especially alike that day!

After dinner we headed home.  It was about 11:00 when we got there, and Rapunzel hadn't slept at all on the way home.  So I let her skip her bath and just put some cream on her and wrapped her up.  I was hoping I wouldn't regret this, but knew she needed to get into bed and get some sleep.  She hadn't felt good most of the way home, so I also decided that I would stay home from church with her this morning, so that she could sleep in and rest.  She ended up sleeping until 11am!  And her skin was not any worse off, so I think I made the right decision last night.

Aurora also ended up staying home with me because she was coughing pretty bad and having trouble breathing this morning.  So she got a breathing treatment and spent the morning laying around watching tv, getting some rest.

It was a long and busy weekend, but we had such a good time visiting with our families that we don't get to see often enough.  Now we had a recoop day of rest, and tomorrow will be spent cleaning the house, catching up on laundry, and doing school work.  Back to life as usual!

Tuesday, May 7, 2013

Swim Lessons

None of my kids know how to swim.  I don't take them to the pool much because they can't swim and it makes me nervous.  I'm sure they'd be better swimmers if we went to the pool more.  See the vicious cycle?

Well now that Aurora is 3 and potty-trained and she can attend a real swim lesson (as opposed to the mommy-and-me type lessons), I decided it was time to find lessons for all the kids.

I was elated when I found lessons at the YMCA where all 4 kids could have a lesson at the exact same time.  Super score!! (See how excited I am... I'm saying things like Super Score).

Hercules and Aurora are in the "preschool" class.  They were the cutest things sitting there in the edge of the pool together.  They are so sweet to each other right now.  They are always encouraging each other and cheering each other on!

Aurora was probably the youngest one in the class, and she was eager to do everything her teacher asked her to do during her assessment.  Hercules was a little more timid, but still did everything they asked him to do.

Belle and Rapunzel are in the "youth" class.  Belle is easily the oldest in there.  I guess most 9 year olds know how to swim, ha!  She didn't care though.  She was so excited to take lessons.  And she did great.  She did everything they asked her to do.

Here she is on the kick board during her assessment.

Rapunzel on the other hand... she had a really hard time.  She was scared that the water would make her skin hurt.  It took her about half the class to even put her feet in the water.  And she never got any further than that.

Here is her super patient teacher, trying to get her into the water.

She was so excited about the lessons up until they started.  And even after we got home, she was saying how she couldn't wait until the next lesson because she was going to "put more of her body into the water next time."  I am so proud of her for even staying with her class and putting her feet in the water.  That was a huge accomplishment for her today.  She didn't come running to me, and she didn't curl up in the fetal position (not the entire time at least).

As soon as the lessons were over, I had her rinse off and I applied moisturizer to her skin before we ever left the pool area.  Hopefully she will warm up to the lessons before they're over.  I just really want her to gain some confidence in the water so that I'll feel more comfortable taking all the kids to the pool or beach this summer.

Monday, May 6, 2013

Ho Hum

It's been pretty quiet around here lately.  Nothing really new to report.  Rapunzel has been seeing her allergist regularly, and we're still awaiting our appointment with the Immunologist at Texas Children's in a couple weeks.  She's still having flares regularly, but we're able to keep them better under control now.  So she's still flaring, but it's not getting to the point of infection, so that's a good thing.

She's been dairy-free for 6 weeks and we've not really seen any improvement in her skin from it.  Well give it another couple weeks.

I think the biggest things that have helped her skin recently are: adding the humidifier to her room, being super-vigilant about twice daily soaks and moisturizing, upping the bleach baths to three times a week, keeping her hands wrapped at night (so that she can't scratch), and adding in the magnesium supplement which has been helping her sleep better.

So we'll keep doing what we're doing.  We have a long list of questions for the Immunologist.  Hopefully we can get some of them answered and see if there's anything more we can do for our girl.

 Being silly before bath (and yes I know I need to clean my mirror)

If you'd like to help support Rapunzel, we'd love if you'd order a t-shirt!  We're selling them to raise money for the National Eczema Association's Itching For a Cure Eczema Walk.  Just use this link to sign-up for the sizes you'd like and you can pay me directly (I will be placing a big order for all the t-shirts after May 18) through PayPal.  Email me at for more info!

Thursday, May 2, 2013

Covert Corn strikes again

I was making Sweet n Sour Chicken for dinner tonight (which ended in an oil temp fail which we won't talk about), and it called for Rice Vinegar.  Now, I don't cook with that much (I honestly can't remember the last time I did), but I do have it in my pantry.

And luckily before I added it to my sauce, I checked the label (as I so often do), and lo and behold...

I guess I'm naive, but I guess that's why I always check the labels.  So I just substituted apple cider vinegar instead.  The sauce tasted fine with that change.  The chicken on the other hand.... oh yeah, we're not going to talk about that.