Micah's face has been super weepy the past 5 days and I think we've discovered the culprit...brown rice. 5-6 days ago I switched from making his rice milk with all white rice to half white half brown (hoping to add more protein and nutrition). Yesterday at noon I finished making a batch of white rice milk and started him back on all white. His face is SO much better today; all dried up, no more weeping.

He plays a bit but still isn't feeling super. Still very clingy and grumpy. Not interested this past week in spoon feeding.

By the way, Micah has been on magnesium for almost a week and it works beautifully to keep his bowels moving. The past 4 days he has had 3 BM/day...ncie and soft. None today yet.

Day 8

Not keeping up on posts.

Today was a day I wanted to give up about a dozen times. Then I think, "How silly...I can't give up...who else is going to do this job?" And obviously nobody except me. Micah's first nap longer than 10 minutes was at 3 PM in my arms. Which means my house is a mess and not much was accomplished.

I have been so tired that even walking up the stirs is exhausting. Every day I tell Sage that I don't have much patience...it's fair warning in case she feels the urge to be naughty.

When Shane walks through the door everything seems better. I hand Micah to him and go put Sage to bed...very relaxing after caring for Micah all day. Then some nights (like tonight) I escape for a little while. Tonight I ran away to the grocery store and library. I came home to find Shane folding a mountain of clothes, dishes all washed. I am a lucky girl.

Sage was an absolute doll today. Playing with him, feeding him pears, holding his arms down for about 10 minutes while I lotioned him up, changed his clothes, pinned his socks to his onesie. Wow! You can tell how much they love each other. Micah is always happy to see her and she lights up around him and billows and coos to him.

Micah had a thickshake today...pears blended with rice milk. It was a hit. even bigger hit were slushy, frozen pears...loved them.

No poos today. 1 yesterday, 2 day before.

1.5 days without Neocate (hypoallaergenic formula).
4 days without honey in rice milk.
2 days without maple syrup in rice milk.

Jane (our eczema mentor in Australia) tells me that her daughter had a terrible reaction when they changed her diet...it got worse before it got better. That certainly seems to be the case right now. Last 3 days have been SO itchy and his skin looks terrible.

Tomorrow I will find multivitamin to put in rice milk.

Day 5

Had Vitamin D and inc sulfate in bottle today.

2 poops...no change there...not too smelly or weird looking just the norm.

Today was Day 2 of pears. He seemed to enjoy them more. I gave them 3x today...last 2x mixed with rice milk. I think he'll get the hang of eating from a spoon soon enough. Right now a lot of it ends up on his chin.

BTW, 2 large ripe pears made about 10 cubes of pear puree...not very much!

Still super itchy today. Jane (a wonderful Australian mama who is helping us SO much) confirmed my suspicion that it might be the honey I out in the first batch of rice milk. So today I tossed that batch of rice milk and made a new one using maple syrup.

Decided to use the cardiospermum (natural steroid) cream 3x/day just to see what happens.

Day 3

Supplements: zinc (10 mg) given in bottle/forgot vitamin D (shoot!)

Drank 41 oz. today, 14 of those were rice milk and the rest Neocate

2 poops today (slightly lighter color).

Very itchy yesterday and today. But on our walk to and from park today I didn't have to strap him in...hooray!

He awoke all bloodied during his nap this AM b/c he got out of swaddle and scratched like crazy. So I pulled my dad's bed out from the basement. Poor kid looks like he's being tortured when he's all strapped in that bed. His arms and legs are spread eagle (held in place by zipties) but it keeps him from scratching and since he can't scratch he stays calmer. And cooler too since he isn't being swaddled.

Tomorrow we introduce pears.

Day 2 of New Plan

Rice milk went over well yesterday. I decided to up his rice milk to 2 oz per bottle. So that makes each bottle 7 oz. Neocate and 2 oz. of rice milk. Tomorrow I will increase again. I can't wait to have him completely off of that garbage-y formula.

He hadn't pooped since yesterday early morning so this morning I gave him a glycerine suppository and about 1/2 hour later he had a great big poo.

I gave Micah his zinc sulfate in his bottle today...much easier that way especially considering the way he clamps his mouth shut and refuses any and all supplements (learned that trick at the hospital)...we have to pry his jaws open these days.

Also had Vitamin D.

Not the greatest sleep last night; he was hot and itchy. I was exhausted and Shane very nicely took him from midnight until 4. He slept in my arms a bit this morning and again this afternoon....we'll take it any way we can get it.

I've got Micah's pears ripening on the counter. Sage and I will prepare them tomorrow so we'll be all ready for Thursday...can't wait to try!

So Micah looks like he** but at least he's gaining weight. His skin is weepy and oozing all over...yucky and it looks so painful. This kid is a trooper.

• 17.2 lbs this morning
• pooping 2x/day
• Pretty happy during day. Play longer stretches without itching. He is getting stronger and sitting up better. Still gets off balance when reaching for toys.
  

I read somewhere that because cortisol levels are higher at night, itching increases then...seems to be true!!! Tonight we will turn on the AC just to try and keep him comfortable at night.

Last night was long. He was up at midnight and off and on until 5:30 AM when I handed him off to Shane who took him on a 2 hour walk around town (their morning routine).

I prepared bottles last night and he has 1.5 TBS of homemade rice milk/bottle....that makes almost 4 oz. of rice milk he'll be getting today.

Homemade rice milk was a cinch to make. Teh most time consuming part is straining it.

Here's the recipe I used:

Home Made Rice Milk

Yields approx. 96 oz.

Ingredients

• 8 c. water
• 1 c. brown rice
  
• 2 Tbsp. honey
• 2 Tbsp. safflower (or sunflower) oil
• 1 tsp. vanilla extract
• 1/2 tsp. salt
• more water to thin; approx. 5-8 c.

Instructions

1. Fill a large pot with 8 c. water, cover and bring to a boil over high heat. (You may add the salt to bring to a boil faster, but I once read that is damaging to your pots, so I choose not to.)
2. Add rice, honey, safflower oil, vanilla extract and salt to boiling water. Reduce heat to low and cover. Simmer for three hours. It will look kind of like rice soup after three hours.
   
   
3. You will blend your rice mixture 2 parts to 1 part water. My blender has measurement marks on the front, so I do 2 c. of rice mixture and 1 c. of water at a time. If you are blending straight off the stove, add cold water to cool off the mixture and not blow the top of your blender off with the pressure from the steam.
4. After blending, strain twice through cheesecloth to catch any rice pulp left behind. I blend for about 2 minutes each batch, so I don’t get a ton of rice pulp left over. I place the cheesecloth in a strainer over a pitcher and pour from the blender into that. The second photo shows my rice milk consistency once it’s been strained twice.
   
   
5. Store in an airtight container in the refrigerator.

New Plan

Well time to try new things since hypoallergenic formula has taken Micah's skin back to where it was before We think most likely a corn allergy since the formula is loaded with corn syrup-yech!

Plan for the week:

Monday- Add 1.5 TBS rice milk to formula
Tuesday-Add 2.5 TBS rice milk to formula
Wed-if no reaction to rice milk begin 1/4 scoop probiotics
Thurs-introduce pears (cooked, mashed and mixed with rice milk)
Fri-pears
Sat-pears
Sun-pears

Life Goes On

So here we are back to where we started from. Micah's skin looks terrible, only his back remains clear. He is very very itchy and uncomfortable and waking almost every hour at night. Very depressing and I cried today for the first time in a couple weeks. The sister missionaries rang the doorbell for a discussion practice with us. But I was upstairs with a squirmy, greasy (I was lotioning him up) and crying Micah and crying myself so I didn't answer the door. I feel so bad.

We've been designing our own formula and one of the carbohydrate sources we planend to use was banana. So two ngiths ago we tried the skin senitivity test: we put a small piece of banana on his skin and covered it with a bandaid. in the morning we checked the skin under the banana, no rash so we had the green light to try banana. Yesterday morningI blended up banana with his days supply of formula. Not only did he not like it (no surprise) but he had 1 explosive poopy with strange looking curds in it and a nasty smell. Then later in the day he had watery diarrhea. Guess that's the end of banana for a while.

I am exhausted. Yesterday was one of those days when literally walking up the stairs winds me and at some points in the day I think to myself, "I cannot do this for one more moment." But of course I can so I do.

Today I ordered ingredients for his formula: probiotics, free amino acids, blue green algae and nucleotide complex as well as zinc.