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:
Thursday
lunch - turkey sandwiches
dinner - potato soup, breadsticks
Friday
lunch - egg salad sandwiches
dinner - tomato basil pasta, french bread
Saturday
lunch - pizza
dinner - corned beef hash, fried eggs
Sunday
lunch - BBQ at Eric's work Family Day
dinner - cereal/sandwich/starve
Monday
lunch - breakfast burritos
dinner - chicken pot pie
Tuesday
lunch - grilled cheese, tomato soup
dinner - Taco Soup
Wednesday
lunch - Sunbutter Jelly Sandwich
dinner - chicken spaghetti, green beans
Friday, May 31, 2013
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!
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!
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
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!
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.
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.
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.
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