What's Happening: Micah Edition

When Micah first got sick, in January 2010, he would scratch constantly during naps and at night, resulting in lots of blood and a sad, sad boy.  My ever-resourceful dad and brother created a special bed for him.  He slept in that little bed for 20 months, his hands tied down with zip ties.

Micah has been doing so well (minimal scratching and sleeping well) we let him go zip tie free over the TG break. He didn't know what to do with himself at first.  Many nights we would peek in and see him lying flat on his back with his arms semi-spread eagle---his old sleeping arrangement.  After a few weeks he settled in to sleeping on his tummy, curled up with his loveys.

And at long last Mr. Micah sleeps through the night... most nights.

Santa brought Micah some wheels...a Strider.  He's not sure about it yet.

Sage shared her chocolate reindeer with him on Christmas morning.  Chocolate is a no-no food but anything goes on Christmas, right?.  Micah was thrilled to say the least.  "I really, really like it."

First time sledding.  He has a love-hate relationship with the hill...mostly hate.

First snowman. "I want to svoove it down." (translation: I want to smooth it down)

He loves "Russel Sprouts" as he calls them. Micah's never met a vegetable, or any food for that matter, that he doesn't like.

He loved lentil soup but the lentil soup didn't love him as evidenced by the puffy, red lips.  Poor kiddo.

First official haircut.  Ashleigh comes to our house for cuts...woot woot!

 Micah always sleeps with "Dressy Bessy" and "Mr. Monkey."  Dressy Bessy was Sage's; she's a special doll that helps you learn to button, tie and zip.  For some reason Micah decided he loves her. 

Micah loves to get bundled up and go outside to play.  And then within 5 minutes he's ready to come back inside.

















                                                                                         

He loves "geen svoovies" (green smoothies)

Sweet Boy

I kind of think Micah is just the cutest boy around, second only to Shane.  He has this darling, robotic, deliberate way of speaking.  He also loves big words and uses them often. 

On Sunday as I was nursing Haven he shared this heaven sent message,

I fugot to tell you Mommy, Heavenwee Faver wuvs you.

In the morning when we open his shade and we tell him that the sun is shining he'll respond with:

Dat means da sun is awake!


Showing us his paper bag puppet made in Nursery:

I actually goo-ed it on myself (goo-ed=glued)

When I tell him daddy's coming home soon:


Ip Ip ooray...yipeee! (said in a high pitched girlie voice)


He loves to give us pats on the backs or little back rubs when we hold him.  He'll follow the pat/rub by saying, "She likes dat."  And sometimes when I'm really lucky he'll caress my face (SO cute!) and follow it with, "Mommy likes dat."

Guess who decided to show up?

This morning. Love that goofy grin.

Mr. Micah.  At church. All three hours.  First time in a year and a half.

I've been praying and hoping for this for a long time.  And I was dancing on the inside all day today.

Opening Micah's closet and seeing his little button down shirts hanging there, bought with a hopeful heart but never worn, was always a painful reminder of how far he had to go to leading a normal life.  Today, at long last, we got to put him in one of those cute little button downs; it made my heart just about burst with happiness.

Shane and I decided that since Micah is looking and feeling so good and napping so consistently that we should give the church thing a whirl.  In the past year and a half we've only attended as a family once.  We have been swapping Sundays staying home with Micah since he first got sick.

I stayed with Micah during the first hour of Nursery.  Shane was planning to stay the whole second hour but Micah was doing so well he decided to leave and it went off without a hitch.

I haven't seen Micah with kiddos his age so I really enjoyed my time in Nursery with him.  As I watched him play and occasionally interact with the other Nursery-ites (or should I say Bedlam-ites?  Name that Conference talk!) it confirmed once again that this kiddo is easy going and good-natured.

Micah was so worn out after his big day he didn't even make it through the 3-minute drive home.  Here he is snoozing away:

P.S. So I guess the question is: why is Micah better?  Well he's been doing something called Bodytalk.  I don't really understand it and it's kind of out there.  But guess what?  I don't care one bit as long as it works. Shane thinks this stuff is so out there that we now have a "don't ask, don't tell" policy.  He doesn't ask what happens at our appointments and I don't tell.  But that's what I love about Shane...he may not agree with or understand the whole Bodytalk business but he's willing to try it out.  At this point we'd probably drink yak pee if someone told us that it would get Micah better. 


P.P.S.  Isn't that tie darling?  My lovely friend Em made it.

the kindness of a stranger

The card.

Micah and I limped our way through last night.

At 4:30 he wouldn't go back down (not uncommon) so I handed him over to Shane, told him that I don't think I can do this anymore, had a good cry and went back to bed. Later in the morning I woke and saw how itchy Micah was, how bad his skin looked, how much there was to do and I had another cry. I silently prayed for help all morning. A friend in the ward took Sage and Micah and I braved the grocery store. When I say brave I mean braved. On days when my emotions are at the surface I have to steel myself a bit for the stares and questions. And I have to steel myself for a wriggly, itchy Micah who will need to to be held while we shop, not so easy these days with a big belly and minimal energy.

When we got to the checkout a lovely lady ahead of us said hello and looked at Micah with such love it was unnerving. I wondered, Do I know her? Does she have a child with eczema? She started to speak to me and I started to cry. I tried to keep my sobs in check while I listened to her lovely kind words.

She handed me her card, hugged me, told me she loved me and left. More tears but this time happy tears. I like to think Heavenly Father sent this stranger to let me know that He loves me and knows what I am feeling.

The questions in my mind are still the same: "How can we get Micah better?" and "How will we manage him and a newborn?" but at least I know I'll make it through this day on the kindness of a stranger.

Mango Paci

We just discovered how much Micah likes dried mangoes. He pops one in and sucks it until dissolves or he leaves a slippery pile of mango goo for mama to discover.

P.S. Micah's skin looks pretty good here because we found a cream that helped a lot. BUT after a week it stopped helping...{sigh}.

Boo man.

From the back he looks perfect...we love that little towhead of his.

We really like Micah around here. He makes us laugh and sometimes cry (darn eczema). Maybe it's all those tears that have made the good times with him that much sweeter.

He's made lots of progress lately (insert sigh of relief). He's been crawling for the past 2 months, he just learned how to climb stairs, will walk with us holding one hand (maybe walking in a few weeks?), and gained some weight. He loves to take laps around the coffee table...about a dozen each time, as fast as his stumpy legs will carry him. All this movement has made for a happier boy. I think being mobile distracts him from feeling miserable. He also enjoys the park and the swing and slide at long last.

Newest signs: hat (patting head), fish (swimming hand in front), pacifier (sucking noises), change diaper (pat hip), yucky (wiggle hands under chin), cracker (drop RT elbow into left palm), book (clap hands together), frog (sticking tongue out), daddy (hard to explain), sleep (put hand on side of head)

New words: "zhooz" (shoes), "ah da" (all done), "ka" (car), "kaka" (cracker), "sss-nah" (snow), "kee" (key) and "nah" (no) is another favorite.


Showing off

At last.

Micah is signing. We knew how darling it is to see a baby communicate this way since Sage was a big signer but it's even more thrilling to see Micah catch on...every milestone is long in coming with him and we've eagerly anticipated this day.

He signs: milk, more, apple, dog, light and up. We're working on other signs like: change diaper, daddy, mommy and lots more.

P.S. Micah doesn't really drink milk...we just call it that. It's millet, pears, salmon and ground beef blended with water and herbs and supplements. Bottle feeding is just the easiest way to get lots of calories in him.

Micah talks.

At least he did this morning. And Shane is my witness. Thank heaven he was there or he would never have believed me.

We were saying our goodbyes to Shane as he headed off to work and Micah joined right in,

"Buh-bye Dada."

Melted our hearts.

Thrilling

Wearing Sissy's (Sage) shades

Every milestone that Micah reaches is so so exciting for us. When he first got eczema it was as though someone hit "Pause" and he's been stuck at 6 months old ever since-- in weight, size and progress. But here and there he starts doing something new and it gives us a reason to cheer.

2 weeks ago: began signing "up"

1 week ago: began holding bottle all by himself

Today: waved "bye-bye" to Shane. I got a bit teary eyed, it was just so sweet! These days whenever anyone mentions Shane, Micah perks right up and starts saying "dada." He love love loves Shane and always wants to be in his arms.

Update: Today (9-2) Micah clapped for the first time. Hope he keeps up the good work.

One

Our baby boy is one. All day I sang him every birthday song I know, "You've Had a Birthday" "Happy Happy Birthday" and "This Month is Such a Special One." He love love loved it....everytime I sang he smiled and giggled.

We celebrated with a slice of pear (one of the few foods he can eat) topped with two candles (Sage's idea---one to grow on).

Just in time for his birthday his first top tooth broke through. A few days later the second one came along. That makes four teeth total.

Shane and I tried for almost 3 years to get pregnant with Micah. When at long last I found out Micah was on his way you can imagine our joy. Then at his birth more joy. And Micah continues to bring us joy inspite of the challenges of eczema.

What a first year it's been for this kiddo. We think he is a brave, patient, darling boy and we think we'll keep him...eczema and all.

P.S. My sister Kassie was here on Micah's b-day and she took photos on her camera, put them on her laptop and then it crashed. Not sure if we'll ever see those again.

Everything's Gonna Be Alright

Playing. We treasure these happy moments as they don't come around every day.

Around 5 AM each morning I rouse Shane and he and Boo (that's Micah to you) leave on a walk (or run depending on how tired Shane is). A long walk. 2-3 hours long. Meanwhile Sage and I sleep.

Shane takes the night shift most every Friday and Saturday. It's exhausting. Micah wakes 6-8 times every night and some nights he can't be consoled and that means holding and walking for long periods of time. Just yesterday morning Shane woke me around 5 AM, handed Micah to me and off we went on a walk of our own.

Nothing like some good hills to remind me that I haven't done any exercising in 6+ months (save weekend hikes). It's sad to admit this but exercise is dead last on my list of priorities these days...sleep takes the cake. Any moment I can sleep I will.

Boo and I walked through the historic district and I admired all the gorgeous Victorians and tree lined streets. Some day we'd love to live there.

The walk was lovely but around 7th and Spruce Micah decided it was time to start scratching and there was no stopping him. The only thing to do when the scratch fest begins is pick him up and pin his arms to his side. So there I was holding a wiggling, fussy baby and pushing the B.O.B. on top of that. I sighed a few times to myself and wished for the day when Micah is healthy and happy and I won't have to lug him home 20 blocks.

We walked and walked through the early morning stillness and as we approached home I heard music blasting from a little cottage. It was Alicia Keys singing her heart out: "Everything's gonna be alright."

A tiny smile tugged at the corner of my lips as I remembered that some day Micah will be all right.

"Some blessings come soon, some come late, and some don’t come until heaven; but for those who embrace the gospel of Jesus Christ, they come."
-Jeffrey R. Holland

P.S. Micah is getting better slowly. We've had lots of missteps and tried everything under the sun. Finally our dear friends Bryan and Paige referred us to their friend, Jane, in Australia who has been through the same eczema hades. She is sharing with us what worked for her children and we are seeing results at long last. We hope and pray every day that maybe, just maybe, he'll be better in time for his first birthday in a month. We'll keep our fingers crossed.

We got the bill from Children's Hospital yesterday.

The grand total?

$62,295.26

Advice From a Cleaning Lady

Room 834


We could also call this post Back From the Dead (I'm only half joking). I'll get to the cleaning lady later.

We just returned home from the hospital yesterday. Micah spent 10 days there.

Two Tuesdays ago he had had watery diarrhea and vomiting for 2 days. He was doing so badly, he'd lost so much weight and was so miserable and his skin so awful that we decided to take him to the emergency room here in Boulder.

The ER doc said, "No biggie" and sent us on to our GP who said, "I have no idea what to do for him," and sent us on to another doc who said, "I can't help but try this doc." Finally we ended up on the phone with a pediatrician. The ped said, "Let's see him in the morning," and I said "I don't think we should wait." Happily, the pediatrician agreed that I should go with my gut and take him ASAP. We would have taken him no matter what the ped said but it's nice to have a little affirmation.

Around 7:45 PM that night Shane and I were in the ER of Denver Children's Hospital. After almost 5 hours of waiting and talking intermittently with a doc and starting a glucose IV, Micah was admitted. He and I spent the wee hours of the morning talking to the docs on the 8th floor and then finally around sunrise fell asleep.

Each day was filled with doctor's visits, blood tests, IV's and nurses checking vitals (blood pressure, temp, pulse). Micah even had a small surgery. Because he was so dehydrated they couldn't keep an IV in so they put him under anesthesia and inserted a catheter, that ran from his arm to his heart. The PIC line (catheter) was a huge blessing because it allowed them to easily draw blood (twice a day) and give him IV fluids and supplements (like albumin). He also had an NG tube (feeding tube) for 5 days. ANother huge blessing that allowed him to be fed and given supplements easily.

In a nutshell here is what went wrong: Micah is extremely allergic to milk which we suspected since his eczema began soon after we started supplementing with formula. When kids are so allergic their colons get irritated (acute colitis) and stop absorbing protein. Lack of protein was the cause of Micah's weight loss, his extreme lethargy and irritability. His electrolyte levels were all low (scary because that can quickly cause problems) as well his zinc levels and Vitamin D. Bad news all around there.

We spent 10 days in the hospital getting his electrolytes back to normal. He stopped the donor milk (and my milk) he was drinking and started on a hypoallergenic formula; doing that allowed his skin to heal quite a bit. He looks so much better but there's still a ways to go. I don't particularly like the formula (causes lots of problems: constipation, diaper rash, a new rash on top of eczema) but it's helping him until we can switch him onto solids. He gained two pounds while we were there and returned to the happy, sweet Micah we haven't seen in a very long time.

The weeks leading up to his admission were pure agony. I cried every day, many times a day. I prayed constantly for wisdom to know how to help him. I was awful and mean and on edge (just ask Sage and Shane). But as soon as we stepped into the hospital the tears stopped and I felt a calm and peace that I haven't felt in many months.

This was a very hard time but as always there were glorious moments.

• Holding Micah in my arms and watching the sun spread across the sky early one morning.
  

• Watching him improve before my eyes and start playing and laughing again. It is pure joy hearing him giggle and chatter.
  

• Realizing amidst all the sadness of a Children's Hospital that eczema really isn't so bad. There are so many other parents and children who suffer through far more terrible things. I met a mom whose 20-month-old son is on his third round of chemo. Another dad has an 18-month-old who has had a 6 month stay due to heart problems. And there were many others.

One night one of the staff housekeeping came to empty our trash. She asked a few questions about Micah's condition, admonished me to pray and shared some wisdom:

"Prayer and medicine work together."

Truer words were never spoken.

Overheard

Sage to friends at park:

"My baby brother has eczema. That means he's really sad and my parents are really tired."

Yep...that about sums it up.


P.S. Micah wears satin gloves on his hands and legs that way he can't do as much damage when he scratches

Lessons

Micah has eczema.

It began 6 weeks ago. A full blown red, itchy rash covering his body from head to toe. His face is usually weepy, sometimes bloody. There is nothing that stops your heart quite like finding your baby surrounded by blood soaked sheets.

He sleeps fitfully all night and only for an hour or two at a time. He prefers the comfort of our arms to his bed. He does nap for short stretches during the day.

There are nights when I am so tired walking the floor with Micah that I'm ready to fall asleep on my feet. Those nights I wake Shane and have him take over. Many mornings I wonder if I've run a marathon in my sleep because my body is so very sore. Is it the walking or holding for hours on end?

There have been visits to various doctors. We have a drawer full of lotions and potions that don't work. Nothing has seemed to help....yet.

These past weeks many emotions have been swirling around inside...frustration, disappointment, embarrassment, anger, sadness, confusion. Some days I want to run away. I've cried a river of tears, petitioned heaven constantly and...I've grown.

I was asked to give a talk this past Sunday. Choose your own topic, the Bishopric member said. So I chose what's on my mind...trials. I've read my talk often since then to remind myself of what I know to be true.

Sometimes I've felt guilty for my feelings. How can I be frustrated by what is happening to my baby? At least I have a baby, at least he's not dying, at least I know that this is temporary.

In the grand scheme of my life this trial is very small. That's what logic tells me but still that doesn't lessen how difficult it feels at times. I often think of what Victor Frankl wrote in Man's Search For Meaning:

"...a man's suffering is similar to the behavior of gas. If a certain quantity of gas is pumped into an empty chamber, it will fill the chamber completely and evenly, no matter how big the chamber. Thus suffering completely fills the human soul and conscious mind, no matter whether the suffering is great or little. Therefore the 'size' of human suffering is absolutely relative."

But there are always blessings...always.

1. As Robert Frost said, "The best way out is always through." Shane and I have to go through this. It will make us stronger, more empathetic, more patient....we will be better because of it.

2. Shane gave Micah a blessing and told him that eczema is a blessing to our family because we get the chance to see his true character...patient and sweet. Micah is still as happy as can be during the day despite his lack of sleep and his discomfort.

3. I love our little man more now than I did when he was perfectly healthy.

4. I've gained a new appreciation for Shane. I take weekday nights and he takes weekends so I can rest. He always manages to be kind and cheerful at 5:30 each morning when I wake him up to take over so I can lay down and rest for a couple of hours.

5. I can see many tender mercies in our life. Like one day Sage and I needed to make Valentine's for her class at school. Micah chose that afternoon to nap for 3 hours...first time ever. As we finished the last Valentine we heard our little man crying...perfect timing.

5. I appreciate the Savior more. "The Son of Man hath descended below all things. Art thou greater than he?" How comforting it is to know that He has already felt what I am feeling. When no one else understands He does.

A friend once told me that when hard times come remember what the scriptures say, "And it came to pass." Nothing ever comes to stay. This will pass and someday we will look back and maybe even smile when we think about this time in our lives.

It's official.

This kiddo rolls.

P.S. He has absurdly large ears and I love 'em.

Golden Slumbers

When Sage was born my sister-in-laws made me promise that I would sleep train her. I read half a dozen book on the subject and at 11 weeks we went to work. It was easy and we were happy.

Sage

Night 1: cried 30 minutes
Night 2: cried 40 minutes
Night 3: cried 30 minutes
Night 4: slept 12 hours straight (plus 2-2 hour naps during the day)

For some strange reason when it comes to Micah I have no will power and I waited 17 (long) weeks to sleep train him. We finally took the plunge last week.

Micah

Night 1: cried 2.5 hours (plus 2 night wakings with lots more crying)
Night 2: cried 3 hours (plus 1 night waking)
Night 3: cried 1 hour
Night 4: Some crying

Yikes! I'm not sure if he's just more persistent than Sage or if he can cry longer because he's older.

It was painful to hear him cry so much but the payoff is huge: a happier baby and two rested parents.

Best Buns in Town

Yum.

Count Your Blessings

I was all ready for my 3-day doula training this weekend.

Diapers and wipes. Check.

Lunch, dinner and snacks. Check.

Directions. Check.

Micah. Check.

Ready to go.

The class is in LA at a doula's home. Google Maps says that in traffic it will take 2 hours. I decide to leave super early to avoid the traffic and I arrive an hour and a half early. Micah and I kick around. He eats, I change a diaper, we go for a walk. As the time approaches 9 AM I knock on the door, no answer. Call on the phone, no answer. Knock on neighbors doors. "Do you know the lady next door?" "No" (welcome to Southern California folks). Finally I find a neighbor who tells me that the teacher is out of town until the 1st.

Right date. uhhhhh....no.

I was so mad that I drove so far, wasted so much time and energy. Driving down the road fuming and frustrated, a few mad tears in my eyes, I saw a billboard for a local news station, a great big anchor face staring out at me.

The name of the anchor? Micah.

Suddenly the angry cloud lifted and I remembered my Micah. I glanced over my shoulder at him sleeping peacefully in the back seat and my heart welled up with love. I remembered how much I have to be grateful for. I spent the long car ride home counting my blessings and arrived home with a smile on my face.

The Many Faces of Micah

Worried

Curious

Sleepy

Delighted