So... What's Worked?

I thought I'd give an update on the things that we think have helped Rapunzel's eczema get better.  We've tried so many things over the last year +, so it's hard to know for sure what has helped and what hasn't.  But here are the things that we're pretty confident about.

Daily Soaks & Moisturizing
When Rapunzel wakes up every morning, she moisturizes her skin before getting dressed.  Every night, she either soaks in the bath, or takes a shower.  Then she moisturizes her skin immediately after.

When her skin was still really bad, she was using Vaniply Ointment.  Now that it's healed and healthy, she is using Vanicream.  The Vaniply Ointment is greasy and messy, but it's all she could use for a long time because anything else burned her skin.  As soon as we were able to switch to Vanicream, we did.  It's still thick and great at moisturizing, but not as greasy and doesn't ruin her clothes and sheets!

Bleach Bath 3 Times a Week
Rapunzel soaks in a bleach bath (1/2 c. of bleach in a tub full of warm water) every Monday, Wednesday, and Friday night.  This has helped tremendously in keeping staph infections at bay.

Cotton Clothing
We still avoid polyester at all costs, and try to stick to cotton for all of her clothing.  It's been a little bit of challenge to find certain articles in cotton (coats, gymnastics leotard, etc.), but it's doable and we feel like it's made a big difference.

Immunotherapy
It has been almost a full year since Rapunzel started her Immunotherapy (allergy shots).  I do believe that they have finally helped.  They told us it would take 6 mos to a year to see improvement.  The first 6 mos, she was worse than she'd ever been.  But now, I feel like they have truly helped.  However, I still don't know if I would advocate their use in helping with eczema, considering how bad it got before it got better.  I feel like if we'd had the information we have now about how to properly care for her skin consistently, we may have been able to avoid those really bad months.  But, maybe not.  Who knows.

Other things we've tried that didn't necessarily help with eczema but did help with other things:

Magnesium
We started giving Rapunzel a Magnesium supplement to help her sleep at night, thus to help her scratch less.  This has helped her tremendously.  Even now, she's not nearly as itchy as she had been, she still takes this every night to help her sleep.  And bonus, it has also helped with some GI issues she'd been having.

Removing Foods
Even though her eczema didn't clear up as a result of removing foods from her diet, her overall health and general well-being has greatly increased because of it.  We are still on the journey to find out what she's truly allergic to, and what she is just sensitive to.  But eliminating all of those foods (corn, soy, nuts, pea, orange) from her diet has definitely made a noticeable positive impact on her life.

But I have to say that the biggest thing that I believe has helped Rapunzel is PRAYER.  We've prayed for our girl diligently, and we have been blessed with many friends and family that have prayed for her.  We believe that our Heavenly Father is the Great Physician and that He is the One behind her healing!

"O Lord my God, I cried to You for help, and You have healed me."  Psalm 30:2

Eczema Awareness Month

October is Eczema Awareness Month. Rapunzel took part in this short video by the National Eczema Association to help spread awareness about eczema. Take a look!

http://youtu.be/ZmuXYM6iPIM

Mom to Mom

The other day I was sitting around with a group of ladies and one of them started talking about her son, who is suffering from severe eczema.  Of course my ears perked up.  I started a sentence with, "Have you..." and in the second I paused, she answered, "Yes."  Oh, how I know that feeling.  When everyone around you is offering their advice and what helped their child, or their friend's child, or some random thing they read online that one time.  All well-meaing, all just trying to show support and care.  But, yeah, we've tried it all.  I wasn't even going to ask, "Have you tried.. (fill in the blank)."  I actually wanted to know if she'd been able to pin-point his triggers.  And as I remembered answering myself at one point, "It's everything" was her answer.

I will not ever call myself an eczema expert.  Eczema is a tricky little disease that presents itself differently in everyone.  So I know that what helped Rapunzel, may not help another child.  And I know how completely overwhelming any information can be when you're in the thick of the journey.  But I also know how badly I want to help them in any way that I can.

So, I told her I wouldn't offer up any advice, because I know she's tried everything.  But that I've been there.  I'm still there.  Just because Rapunzel's eczema is clear for the moment, all it can take is a small backslide and we could be right back in the middle of it again.  And that if she had any questions or just needed someone to talk to, I'm here.  She's doing an amazing job!

About So Much More Than Gymnastics

We spent all of last year trying to figure out Rapunzel's eczema and how to get it and keep it under control.  I feel like since summer, we've finally gotten a handle on it.  We've figured out several of her triggers, implemented and sustained a helpful skincare regimen, and now her skin is clear and she's feeling good almost all the time!  It's been a long road, and I know we'll still have set backs, but I'm so glad that we've finally gotten to where we are.

One of the things we did last year in an attempt to help her skin, was to limit her extra curriculars.  Because her skin was so bad, there were many days when she had to stay covered, and even wrapped in bandages.  Being outside longer than a few minutes caused her to become itchy.  So there wasn't much as far as sports that she could take part in.  She couldn't even attend Belle's soccer games, so Eric and I had to take turns keeping her home, or finding a friend to watch her during games.

I was so pleased to see how much her skin healed over the summer, and how other than a few small flares, it's stayed healthy as we're coming up on fall.  So around the time we started school this year, we let her choose a sport/activity.  We did specify that it needed to be something indoors, as she gets overheated easily, and it stays hot here into November.  She chose gymnastics.

She had her first class competition today and I wasn't sure how she'd do.  She's only been in the class for a few weeks, and she still deals with a little bit of anxiety (although that has gotten SO MUCH BETTER since her skin has cleared up).  But, the girl did awesome.  There were only a few who earned a 1st place ribbon in all 4 events, and she was one of them.  She totally rocked it!

I was in tears as she stood on the podium and accepted her medal and ribbons.  I just think back to this time last year.  I was in tears as I watched her skin weep and bleed.  I was in tears as she was scared to even take a bath because the water burned her skin.  I was in tears as I applied medicine and bandages to her raw wounds.  I was in tears to the doctors, as I begged and pleaded with them to figure out why it was so bad.  I spent much of this past year in tears.  Wanting to help her but not knowing how.  And now, after pouring our hearts and souls into this journey, I'm in tears over how far she's come.  How far we've all come.

Real Food

When I started removing known allergens from Rapunzel's diet, and therefore from my menu plans, I started just looking for anything that fit the bill. Even if it wasn't the healthiest, as long as it didn't contain her allergens. A lot of changes were healthier. No corn syrup meant somewhat healthier alternatives. But now that we've been avoiding corn (and the others) for over a year, I've begun to realize that I can still do better. So, I've been incorporating more real food meals. I'm not a 100% stickler, but its a change in the right direction. So, with that, I thought I'd share our menu plan for this week:

Breakfast:

I still let the kids pick what they want for breakfast from our usual suspects:

Plain yogurt w/ a splash of vanilla and pure maple syrup, sometimes with granola on top

Plain oatmeal with maple syrup

Whole wheat toast with natural jelly or butter

Whole foods cereals

bagels with cream cheese

Lunch:

I don't usually eat the same things as the kids anymore. I will usually eat leftovers from dinner, or make a salad of some sort, sometimes a sandwich on whole wheat bread. You can see more of what I eat by following me on instagram @amberloveseric

But for the kids -

Egg salad, triscuits, cheese stick, raspberries, pineapple, cucumbers

Waffle/cream cheese sandwich, ants on a log, pear

Sliced apple and sunbutter sandwich, hummus and pita chips, carrots

Hummus, cheese, cucumber pita pocket, applesauce, grape tomatoes

Raspberry whole wheat muffins, smoothie pop, plain popcorn (popped sorghum for Rapunzel)

Dinner:

Teriyaki pork tenderloin, sesame noodles, green beans

Taco soup, salad

Stuffed peppers (stuffed with beef, quinoa, beans, veggies)

chicken pesto pasta, black bean soup

Sweet n sour chicken, brown rice, broccoli

Those menus don't really look all that different from past menus. The difference is the ingredients I use.  Real ingredients. Real food.  

Immunologist Appt #3

We made a day trip to Houston yesterday for another appointment with Rapunzel's immunologist at Texas Children's. We left at 7am and got to the hospital at 11:30. Just enough time to scarf down some lunch and make our 12:00 appt.

I knew there would be a lot of waiting, so we came prepared with some schoolwork.  Love her "I don't want you to take my picture" face. 

The doctor came in and let us know that we'd first be doing a scratch test with extracts and actual foods for: corn, peas, and oranges.  

They brought in someone from Child Life to help her during the test. She did great!

This is after only a couple of minutes.  I didn't get another picture afterward because she was getting uncomfortable, so I got up to hold her hand. 

After the test was over, the doctor returned to go over the results.  They did scratches for pea extract, fresh pea, orange extract, fresh orange, corn extract, fresh corn, and boiled corn.

To Erica's chagrin, she is still allergic to peas. Big time. In the doctor's words, "quite possibly anaphylactic to them.". Both the extract and the fresh pea scratches swelled up substantially. Got it.  No peas. She didn't need to tell me twice!

Orange was inconclusive. The extract reaction was just ever so slightly positive, but the fresh orange was negative. She said if we wanted to attempt a food challenge on our own at home, she would be ok with that. We're thinking about it, but still avoiding orange for now. 

Corn was baffling. Of the 3 scratches for corn, one reaction was very large, one was borderline (but still positive) and one was negative.  Not enough evidence to rule out the corn allergy. And because there was a positive, we couldn't attempt the food challenge today. So, next time we come in, we'll be focusing on this.  We'll do another scratch test for corn - this time with corn on the cob and corn syrup. And possibly the food challenge. 

I was very confused about her testing positive on the skin tests, yet her blood tests coming back mostly normal. The doctor explained that we can't rely on one test over the other. Instead, we use all the results to paint a bigger picture of her allergies.  She also explained that just because her numbers do not indicate a possible anaphylactic response, does not mean that it's not a true allergy. Rapunzel has not experienced an anaphylactic reaction before, but her extensive stomach aches and general unwell feeling after ingesting an allergen are still definitely signs of an allergy, and are even sometimes referred to as slow anaphylaxis. 

I will admit that I became a little lax about what Rapunzel ate when we ate out this summer after her last appt, but my eyes have been reopened and I will continue to be diligent about what she eats!

How we do Homeschool 101

School is in session!  We decided to start on the actual start date of our local school district again this year.  I let each of the kids pick out a "first day of school" outfit for the occasion.

I am really excited about this school year for several reasons.  We have some new curriculum that I'm really looking forward to.  ALL of my kids will be "doing school" this year (preschool-5th grade).  I've updated our schoolroom some and think it will help our school day flow better.  I've come up with a basic schedule for our days that I hope will help us to stay focused (at least most days).

Here is our schoolroom.

On the left are the girls desks with a couple 10-drawer storage units between them (will be adding one more in the gap). The center one is filled with preschool activities and the other two are for the girls' work. In their desks they each have a pencil pouch with basic supplies, a notebook, and bible.

On the right is my desk where I check work. The table in the center of the room is where we do work together or where the girls can spread out if they want/need more room than their desk.

This is the other side of the school room. We have a big sectional couch, which is where we do some group activities and reading. The train table that is beside the ottoman isn't supposed to be there. It's waiting to get hauled upstairs. 

This is the bookshelf that is on the right in the picture above. It houses all of our curriculum for this year. The stack of bins/books on the left is waiting to be moved as well (it's old curriculum). 

The cabinet of the bookshelf holds extra supplies (there will be more added soon as I clean out our old closet, and it will hopefully become more organized). 

Here is our curriculum.

Belle - 5th grade
English - Rod & Staff 5th grade

Spelling - Rod & Staff 5th grade

Reading - Rod & Staff 5th grade

Handwriting - Handwriting Without Tears - Can Do Print and Can Do Cursive

Math - Saxon 5/4

Rapunzel - 2nd grade
English - First Language Lessons - Level 2
Writing - Writing With Ease - Level 2

Phonics - Explode the Code - 5-6

Handwriting - Handwriting Without Tears - Printing Power and Cursive Handwriting

Math - LIFEPAC grade 2

Belle & Rapunzel (and sometimes Hercules and Aurora)
My Father's World - Exploring Countries and Cultures, which includes history/geography, science, bible, music, and art.

Hercules - Pre-K and Aurora - Preschool
Rod & Staff - Preschool Activity Workbooks

Letter of the Week - Confessions of a Homeschooler
and other preschool activities, including games, manipulatives, workbooks, dvds, and iPad apps

Belle is also enjoying these Millers book during her free reading time. 

The kids should be awake, dressed, beds made, room picked up and downstairs by 8:00am on school days. That means I can sleep until 7:30 and still have time for a quick shower and quiet time before we start our day. The little kids are almost always up by 7:30, so that's not really a problem. If they happen to sleep in, I'll probably let them. The older girls are not consistent as to their wake time. So they are setting an alarm (they share a room) for 7:30 to give themselves plenty of time to get everything done and be downstairs by 8:00. 

Here is our schedule.  I even created an "adjusted schedule" for days when we're out of the house in the mornings for various things (MOPS, dr. appts, playdates, etc.), because in the past, those days ended up being wash days because I just didn't know where to pick up in "just" the afternoon.  Now, no excuses! 

More curious about any part of our homeschool?  Leave a comment and I'll be compiling a Homeschool FAQ.