Today all the daycare teachers couldn't believe how much better C's skin looked. One of the teachers even said that she wants to get the new lotion that C is using! It was a remarkably normal and productive day - I got lots of work done in the morning, didn't google anything about eczema all day, and Paul and I had a nice lunch date at our favorite Mexican neighborhood diner.
I'm just hoping her body will continue to respond well to the new treatment - trying not to count my chickens before they're hatched. Continuing to feel so grateful that today my baby girl is happy, active, silly and just being herself. Taking each day as it comes.
Tuesday, March 31, 2015
Monday, March 30, 2015
Day 35: Cesar Chavez Day
Today daycare was closed because of Cesar Chavez Day. If we did not live in LA, I would have never known it was Cesar Chavez Day. Although I have to say, I did not notice anything different about today - did not hear about any parades and we still got mail. So I have to admit, I kinda rolled my eyes that daycare made it an official holiday, but our hard-working staff deserve the day off and I really enjoyed being home with the girls and taking the day off from work.
Well, here was our day in photos. We started our morning by the girls sleeping in(!) until about 7:40am, which was a world-record of some sort. I don't know what the occassion was; I guess they knew it was Cesar Chavez Day also. Plus they were tuckered out from our trip to OC yesterday for a birthday party and lots of festivities. So we had a nice slow morning with some TV time, and then headed out around 10am.
We went to our neighborhood indoor playground called The Awesome Playground, which I love because it is just one big room with toys and I can sit and look at stuff on my phone while they play amongst themselves. It's all baby safe and is usually not very crowded. They have dress-up costumes there, which C was into today. Also, check out how beautifully pale C was today! I cannot believe how quickly her eczema is clearing up. She was playing so happily today that I now realize how accustomed I've become to her discomfort. When normal play is an unusual thing, I guess you know you've been through something tough with your kid.
Overall, it was a lovely day. They are playing so well together lately, and are quite the pair in all the funny ways that they interact. C constantly copies E, but E tries to copy C too because she knows that C is copying her. It's a precious relationship that makes me feel so glad about having them close together, despite the fact that I really remember nothing from that sleep-deprived first year.
Well, here was our day in photos. We started our morning by the girls sleeping in(!) until about 7:40am, which was a world-record of some sort. I don't know what the occassion was; I guess they knew it was Cesar Chavez Day also. Plus they were tuckered out from our trip to OC yesterday for a birthday party and lots of festivities. So we had a nice slow morning with some TV time, and then headed out around 10am.
We went to our neighborhood indoor playground called The Awesome Playground, which I love because it is just one big room with toys and I can sit and look at stuff on my phone while they play amongst themselves. It's all baby safe and is usually not very crowded. They have dress-up costumes there, which C was into today. Also, check out how beautifully pale C was today! I cannot believe how quickly her eczema is clearing up. She was playing so happily today that I now realize how accustomed I've become to her discomfort. When normal play is an unusual thing, I guess you know you've been through something tough with your kid.
Costume change time.
The table service at this joint is amazing.
This car is not going fast enough!
During naptime, E (with her extremely sharp eyes) spotted a box in my closet that had her flower girl dress for Uncle Danny and Auntie Kristen's wedding. I got it on a pre-Easter sale that Macy's was having, though the wedding is not until October! To clear up her confusion, I had to explain several times that being a flower girl does NOT mean you dress up as a flower.
Some afternoon playtime in my studio.
They love sitting together in this chair.
Again, C showing off her unusually non-blotchy skin.
After dinner, ending the day with some home made popsicles.
Sunday, March 29, 2015
Day 34: Swept Away
C continues to improve. She was in a fantastic mood today, and there were very few moments that she was scratching her usual places and saying, "Owie." Her skin seems like it's healing before my eyes. A few days ago, it had the texture of what I imagine elephant skin feels like - rough and sort of wrinkly. Today, by the time I got her out of the bath and applied the new Shikai Borage Therapy lotion on her, I felt less and less of that rough, wrinkly texture. There was barely any red on her back and torso. I am really amazed. This girl is healing.
I can't explain how much joy I feel just seeing her do her thing. Running around the house with her hands spread behind her back shouting, "Airplane! Airplane!" or playing dress-up with her sister. I haven't seen her this happy for what feels like a long time. And though she still has her tough moments because she is just a toddler, there's a lightness and a sweetness in her demeanor that makes me feel like she knows that she's getting better. I think she also senses the attention I've been putting on her lately, as she has been more clingy to me the past few days, which is a first. She's been insisting that I take her out of the car, that I hold her more than Paul, that I put her to bed. Meanwhile, E has adjusted by insisting on Daddy more often than she usually does, which is also a first - she has always been more attached to me. It's sort of a refreshing change for all of us.
Tonight, when I put C to bed, I sang her "Sanctuary" and she just kind of collapsed onto my chest. Then she suddenly looked up at me. We just stared at each other for a long time, and she smiled and put her forehead on my mouth for me to kiss it. I just melted into a million pieces with affection for my curly-haired little girl, wanting her sweet spirit to burst free into this world and shower it with as much goodness as she's put into my life.
I think I've started to lose myself a little bit in this whole eczema ordeal. In case you can't tell, it's really consumed me lately and I am sure you're tired of hearing about it. I hope I can distance myself from it a little bit this week if C continues to heal up. It's all I want to talk about with anyone, mostly because I feel that there is some kind of injustice for all the kids out there who suffer from eczema and just get prescribed steroid creams. Sometimes I get swept up into causes where I feel there's some kind of ignorance or oppression represented. I feel for every kid out there who has been stuck in this endless cycle of scratching. Our allergist told us about a baby that came to him from Japan. His mother had dressed him in a onesie and safety-pinned the arms of the onesie to his side so he couldn't move his arms to scratch himself. Once they unpinned his arms, he began scratching and would not stop, so much that by the time the appointment was over, he was bleeding all over his body. The itch was too unbearable. I feel so sad for all the kids with severe eczema out there. I hope they find the right healing and treatment too. In the meantime, I will try not to get too carried away in all this. I am just so grateful that God is meeting me in this 40-day journey, that he is showing me His strength and answering so graciously.
I can't explain how much joy I feel just seeing her do her thing. Running around the house with her hands spread behind her back shouting, "Airplane! Airplane!" or playing dress-up with her sister. I haven't seen her this happy for what feels like a long time. And though she still has her tough moments because she is just a toddler, there's a lightness and a sweetness in her demeanor that makes me feel like she knows that she's getting better. I think she also senses the attention I've been putting on her lately, as she has been more clingy to me the past few days, which is a first. She's been insisting that I take her out of the car, that I hold her more than Paul, that I put her to bed. Meanwhile, E has adjusted by insisting on Daddy more often than she usually does, which is also a first - she has always been more attached to me. It's sort of a refreshing change for all of us.
Tonight, when I put C to bed, I sang her "Sanctuary" and she just kind of collapsed onto my chest. Then she suddenly looked up at me. We just stared at each other for a long time, and she smiled and put her forehead on my mouth for me to kiss it. I just melted into a million pieces with affection for my curly-haired little girl, wanting her sweet spirit to burst free into this world and shower it with as much goodness as she's put into my life.
I think I've started to lose myself a little bit in this whole eczema ordeal. In case you can't tell, it's really consumed me lately and I am sure you're tired of hearing about it. I hope I can distance myself from it a little bit this week if C continues to heal up. It's all I want to talk about with anyone, mostly because I feel that there is some kind of injustice for all the kids out there who suffer from eczema and just get prescribed steroid creams. Sometimes I get swept up into causes where I feel there's some kind of ignorance or oppression represented. I feel for every kid out there who has been stuck in this endless cycle of scratching. Our allergist told us about a baby that came to him from Japan. His mother had dressed him in a onesie and safety-pinned the arms of the onesie to his side so he couldn't move his arms to scratch himself. Once they unpinned his arms, he began scratching and would not stop, so much that by the time the appointment was over, he was bleeding all over his body. The itch was too unbearable. I feel so sad for all the kids with severe eczema out there. I hope they find the right healing and treatment too. In the meantime, I will try not to get too carried away in all this. I am just so grateful that God is meeting me in this 40-day journey, that he is showing me His strength and answering so graciously.
Saturday, March 28, 2015
Day 33: Perfect Saturday
Otherwise, we had a great day just being at home, doing some grocery shopping, and having lunch out, and watching a few episodes of our new favorite show on Amazon Prime - Tumble Leaf, a really beautifully done show about two foxes that is supposed to look like stop motion (but I'm sure it's CG). And there are no annoying jingles.
First day on the new allergist's regiment was quite successful. We gave her antihistamines in the morning, and I swear - her back literally changed color in a matter of hours. It was red and bumpy yesterday, and when she woke up this morning there was blood all over the crib sheet from her cheeks being so dry that they bled while she was sleeping. She must have been scratching too. After the antihistamines, the redness continued to diminish and by noon her color was paler and there were just small scabs left on her cheeks. She is still dry, but the redness seems to be going down tremendously. Take a look at these two before and after photos (which were never meant to be before and after photos, so sorry about the terrible photography, but that's all I got):
Here we are yesterday after her doctor's appointment. We stopped at a Korean restaurant on the way home for some naeng myun - if you can look beyond the cup she's holding, you'll see how red and blotchy her face is. Her wrists and hands are scabbed and raw:
And here are C and Paul at lunch today at Pitfire Pizza. She was not in a great mood mostly because she was tired, but her face is a different color:
We still have a ways to go, but if we are seeing positive changes on just the first day of treatment, then I am hopeful.
I thought about Naaman a lot today. It must feel so good to be healed. Help is coming, baby girl.
Friday, March 27, 2015
Day 32: Answers
Last night before bedtime, E and I were reading the story of Naaman (2 Kings 5) in her kid's Bible. Naaman, or as E calls him, "the guy with the owies," had leprosy. He was a valiant soldier, but he had leprosy. First he was sent to the king of Israel to be healed, but he King tore his robes and didn't know what to do. Elisha the prophet offered to help, and had Naaman bathe in the river. He told Naaman to wash himself seven times in the Jordan River, and that Naaman's flesh would be restored. Naaman first refused, but when he actually did what Elisha said, he was healed.
This made Naaman want to turn everything over to the God of Israel and declare Him as the only God.
In reading this story, I couldn't help but draw a parallel to poor C. Yesterday her arms were so raw and dry that they were bleeding. She kept scratching and was just miserably uncomfortable. It was just breaking my heart. And then at bedtime, E and I read this story and I felt like this guy with the owies was a lot like my little girl seeking an answer for healing in her own skin. She doesn't have leprosy, but at times it almost feels that helpless. Seeing the eczema just move around her body, her skin attacking itself, her little face red and blotchy, has made us seek answers in many different places. I learn from Naaman that the answer isn't always easy or what you would expect. God provides healing when the time is right, and when He alone will receive the glory.
Today was our appointment with the allergist at Cedars-Sinai. He was kind and compassionate, listening to our journey with eczema and understood our issues with steroid creams. He seemed to go for a more holistic approach, not just analyzing the skin, but trying to understand what from within her little body, has been causing the eczema. Her constant runny nose really is an allergic reaction, but apparently her nose is wide enough to prevent her nasal passages from being stuffy! Thank you Sheu nose!
A skin prick test further confirmed that C is EXTREMELY allergic to dogs, and mildy allergic to cats and eggs. We didn't do peanuts since we already knew that one for sure, but she was negative for other common things like dairy and dust mites. The previous test did not bring up the egg and cat allergies, but I guess they were not as strong. We came away with an arsenal of new information and a daily regiment which includes (let's see if I can even remember this correctly):
-two antihistamines, including Singulair and Zyrtec, to be taken daily
-borage oil supplement
-Elidel for extreme eczema areas (non-steroid cream)
-probiotic supplements
-antibiotic ointment for any broken areas of the skin
-three suggestions for new emmollients - Albalene, Shikai Lotion, and Babytime Soothing Cream (I thought I'd tried every cream on the market, but never these three - the latter two are extremely well-reviewed on Amazon with testimonies of effectiveness on eczema)
We are advised to stay away from dogs and cats, and cut out anything egg and peanut from her diet. I think we've been doing those things already, but I didn't know she had an egg or cat allergy. Funny thing is that she doesn't even like eggs or peanut butter, which are the exact two things that my picky E will always eat. But the last allergist's test was a blood test, which didn't seem to be as accurate as the skin prick test.
Now I feel confident that we really know the triggers. She also seems to be allergic to her car seat lately, so I don't know what is going on with that, but I guess she just generally has a lot of sensitivities.
Lesson learned - it is always helpful to get a second opinion. I guess in a way, even Naaman did this. Praying that we'll receive healing just as he did, and that God alone receives the glory.
This made Naaman want to turn everything over to the God of Israel and declare Him as the only God.
In reading this story, I couldn't help but draw a parallel to poor C. Yesterday her arms were so raw and dry that they were bleeding. She kept scratching and was just miserably uncomfortable. It was just breaking my heart. And then at bedtime, E and I read this story and I felt like this guy with the owies was a lot like my little girl seeking an answer for healing in her own skin. She doesn't have leprosy, but at times it almost feels that helpless. Seeing the eczema just move around her body, her skin attacking itself, her little face red and blotchy, has made us seek answers in many different places. I learn from Naaman that the answer isn't always easy or what you would expect. God provides healing when the time is right, and when He alone will receive the glory.
Today was our appointment with the allergist at Cedars-Sinai. He was kind and compassionate, listening to our journey with eczema and understood our issues with steroid creams. He seemed to go for a more holistic approach, not just analyzing the skin, but trying to understand what from within her little body, has been causing the eczema. Her constant runny nose really is an allergic reaction, but apparently her nose is wide enough to prevent her nasal passages from being stuffy! Thank you Sheu nose!
A skin prick test further confirmed that C is EXTREMELY allergic to dogs, and mildy allergic to cats and eggs. We didn't do peanuts since we already knew that one for sure, but she was negative for other common things like dairy and dust mites. The previous test did not bring up the egg and cat allergies, but I guess they were not as strong. We came away with an arsenal of new information and a daily regiment which includes (let's see if I can even remember this correctly):
-two antihistamines, including Singulair and Zyrtec, to be taken daily
-borage oil supplement
-Elidel for extreme eczema areas (non-steroid cream)
-probiotic supplements
-antibiotic ointment for any broken areas of the skin
-three suggestions for new emmollients - Albalene, Shikai Lotion, and Babytime Soothing Cream (I thought I'd tried every cream on the market, but never these three - the latter two are extremely well-reviewed on Amazon with testimonies of effectiveness on eczema)
We are advised to stay away from dogs and cats, and cut out anything egg and peanut from her diet. I think we've been doing those things already, but I didn't know she had an egg or cat allergy. Funny thing is that she doesn't even like eggs or peanut butter, which are the exact two things that my picky E will always eat. But the last allergist's test was a blood test, which didn't seem to be as accurate as the skin prick test.
Now I feel confident that we really know the triggers. She also seems to be allergic to her car seat lately, so I don't know what is going on with that, but I guess she just generally has a lot of sensitivities.
Lesson learned - it is always helpful to get a second opinion. I guess in a way, even Naaman did this. Praying that we'll receive healing just as he did, and that God alone receives the glory.
Thursday, March 26, 2015
Day 31: Sanctuary
There's a song that I sing to the girls before bedtime. I'm not sure why I sing this song, but I've just always really liked it's simplicity.
Sanctuary
Lord, prepare me
To be a sanctuary
Pure and holy
Tried and true
With thanksgiving
I'll be a living
Sanctuary for you
I'd like this to be my mantra in life, and I guess I would love it if my girls followed in that pursuit. To live life as a place where God can be alive and active, that was not always clean, but through much refinement, is now a haven for the Lord to dwell in.
Sanctuary
Lord, prepare me
To be a sanctuary
Pure and holy
Tried and true
With thanksgiving
I'll be a living
Sanctuary for you
I'd like this to be my mantra in life, and I guess I would love it if my girls followed in that pursuit. To live life as a place where God can be alive and active, that was not always clean, but through much refinement, is now a haven for the Lord to dwell in.
Wednesday, March 25, 2015
Day 30: Well-Oiled Machine
Today I picked C up from daycare to find her standing on the play structure in the yard, looking triumphant. Her hair had been pulled into two neat pigtails, with three elastics on each side that made it kind of elaborate. The teachers do hair so much better than I ever could! But once she saw me, she melted into a little pile of mush, wanting to be picked up the whole time, not wanting to not be touching my body for a split second. She was also incredibly hungry it seemed, and when she's hungry, she's like me. She gets PISSED!
Before I left for work, I'd made some salmon and rice to be topped with nori, and for some reason, sprinkling the nori onto her bowl made her a little crazy. This happens whenever we put cheese on her pasta too, or oatmeal in her bath like I said the other day. Pretty soon rice was all over the floor and me, she was arching her back and throwing a hissy fit and insisted on eating yogurt and cereal.
My girls have a funny dynamic. Lately, when one is being bad, the other tries to be really, really good. So the whole time C was having this little dinner episode, E decided to eat all her dinner quietly and then read her Frozen book by herself. As I did C's bath tonight, I heard her belting out "Let It Go" at the top of her lungs. I chuckled to myself. Then, as I read a few books to C before bed, E went into her room by herself and started reading the Bible quietly while sitting in her bed. (Ok, she can't read yet, but she looks at the pictures and mumbles words she thinks go with the story.) She stayed there for at least 10 minutes. It was pretty amazing.
Paul is in SF tonight for a business trip, and bedtime can be super tricky by oneself, but I think we are both used to it now both having to travel for work occasionally. In fact, this week was some pretty slick tag-teaming. I did bedtime on Monday when he went to a networking event; he did bedtime yesterday when I stayed late at work to do a makeup lesson; I'm doing it tonight and tomorrow, and he'll do it Friday when I work late. We call ourselves a well-oiled machine.
Eczema update: I applied apple cider vinegar and Vaniply on her back and torso in the morning, and today C's back and torso were way less red. So was her face. But her arms were in terrible shape, so dry that they were almost bleeding and peeling. She'd been wearing a t-shirt which means she was inevitably scratching. I guess I have to keep her in long pants and longs sleeves all the time, but it was nearly 90 degrees today! My heart sank when I saw the condition of her arms. Well luckily, last week I went on Amazon looking for some kind of baby gloves to keep her from scratching her hands and wrists at night. If the idea with wet wrap therapy is to seal in moisture, which means applying emollients right after bathing and then covering baby in her sleeper right away, I realize that the only part of her that is uncovered is her hands and face, which have both been pretty bad lately. She always rolls her sleeves up to scratch them at night. Her legs have mostly been good with this treatment. Tummy and back are another issue, but I still think those are related to steroid withdrawl since they look a little different than the rest of her eczema, and those are not typical eczema places.
Lo and behold, I found this and it showed up yesterday:
Before I left for work, I'd made some salmon and rice to be topped with nori, and for some reason, sprinkling the nori onto her bowl made her a little crazy. This happens whenever we put cheese on her pasta too, or oatmeal in her bath like I said the other day. Pretty soon rice was all over the floor and me, she was arching her back and throwing a hissy fit and insisted on eating yogurt and cereal.
My girls have a funny dynamic. Lately, when one is being bad, the other tries to be really, really good. So the whole time C was having this little dinner episode, E decided to eat all her dinner quietly and then read her Frozen book by herself. As I did C's bath tonight, I heard her belting out "Let It Go" at the top of her lungs. I chuckled to myself. Then, as I read a few books to C before bed, E went into her room by herself and started reading the Bible quietly while sitting in her bed. (Ok, she can't read yet, but she looks at the pictures and mumbles words she thinks go with the story.) She stayed there for at least 10 minutes. It was pretty amazing.
Paul is in SF tonight for a business trip, and bedtime can be super tricky by oneself, but I think we are both used to it now both having to travel for work occasionally. In fact, this week was some pretty slick tag-teaming. I did bedtime on Monday when he went to a networking event; he did bedtime yesterday when I stayed late at work to do a makeup lesson; I'm doing it tonight and tomorrow, and he'll do it Friday when I work late. We call ourselves a well-oiled machine.
Eczema update: I applied apple cider vinegar and Vaniply on her back and torso in the morning, and today C's back and torso were way less red. So was her face. But her arms were in terrible shape, so dry that they were almost bleeding and peeling. She'd been wearing a t-shirt which means she was inevitably scratching. I guess I have to keep her in long pants and longs sleeves all the time, but it was nearly 90 degrees today! My heart sank when I saw the condition of her arms. Well luckily, last week I went on Amazon looking for some kind of baby gloves to keep her from scratching her hands and wrists at night. If the idea with wet wrap therapy is to seal in moisture, which means applying emollients right after bathing and then covering baby in her sleeper right away, I realize that the only part of her that is uncovered is her hands and face, which have both been pretty bad lately. She always rolls her sleeves up to scratch them at night. Her legs have mostly been good with this treatment. Tummy and back are another issue, but I still think those are related to steroid withdrawl since they look a little different than the rest of her eczema, and those are not typical eczema places.
Lo and behold, I found this and it showed up yesterday:
Sorry, the resolution is terrible on this tiny jpeg. But basically it's like a little baby bolero jacket with silk sleeves that are sewn together that you can put under or over pajamas. Who would've thought? Amazon has absolutely everything. Hoping it's a better $20 than the two types of coconut oil, jojoba oil, oatmeal bath, and every freaking eczema cream on the market that I've bought!
I had ice cream and wine to close out the day. The two are not good together unfortunately. So I dumped the rest of the wine down the drain. It was kind of an old bottle anyway. The ice cream was fantastic, however - TJ's Cookie Butter Ice Cream. I think I deserve it (well, both really) for single-mommying today and tomorrow. Oh yes, and I even managed to play the guitar for about 45 minutes when a student cancelled. High five me.
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