Our Journey

Happy Sad

2012-02-13T16:00:00.000-06:00

"Aren't you coming, Becky?"

"Oh, no, I can't. I'd have Emma with me."

"Well, that's okay, we just can't have her on the bus for insurance reasons, but you could follow us."

"No, I don't want Emma to be a distraction."

"Oh, she'd be fine"

yes. but she'd be a distraction.

Charlie's preschool class had a field trip this morning to a nursing home. They sang songs about God's love and handed out Valentines that they had made. The permission slip that came home specifically said that all parents were welcome to come along but not siblings. I knew ahead of time that Charlie would be one of the few children without a parent along to see his program.

Emma is doing great with transitioning back from J to G feedings, so she can take short breaks from her tube now, but I still can't leave her for more than an hour at a time. I'm sure, if I had asked, Charlie's teachers would have encouraged me to bring her so that I could come to the program, but I'd have had to feed her while at the nursing home ... and, for a generation that comes from a time when Emma would not have survived, that would have been a distraction.

I had prepared Charlie ahead of time. He understands completely. (and honestly isn't really bothered by it because if I'm not there for a field trip like this it means one of his favorite teachers gets to be his one-on-one buddy for the bus ride and the walk into the center) He didn't even seem to notice that, out of 25 kids in his class, he was one of only 3 or 4 that didn't have a parent along with them.

I cried

It wasn't even that Emma and I didn't have other plans. We had a lovely morning with some other moms and kids during our church's open gym time.

But I cried all the way there.

I just get sad sometimes. And that's okay. The Lord is close to the broken-hearted (Psalm 34:18).

But I'm just so thankful that Charlie doesn't get resentful of his sister. It just amazes me that God had such a wonderful plan for who he chose to be Emma's big brother

And that makes me happy.

Up to

2012-02-10T14:43:00.001-06:00

Life is slowly returning to normal. I called all of Emma's "ologists" this afternoon to schedule next appointments because just about everyone's schedule was off after this last month. That means, I think, that I might finally be able to exhale soon ... so what have we been up to lately?

Spelling (cuz my friends who go to school at home do it!)

Being as goofy as possible

Making puppies (and messes) from our new Play-doh kit

writing valentines ... 'I love you mom a lot' ... get it? uh-lot? makes perfect phonetic sense to me!

calculating how much water to add to a 250 ml can of formula to get a 75% solution

and NOT sleeping

Honestly, I dare you to put your toddler down for a nap taped to a tube that causes a fun beeping noise if you twist it just the right way!

Cuz Mommy comes running if I make that beeping happen. Plus, as soon as I fall asleep, someone's going to come in here and try to take my temperature again, right? I mean, that's what I've been waking up for at 4 am all week!

But as for the 75% solution ... yesterday she did great with the new feeding schedule "practice run" with a watered-down food bag. Today she's getting the full concentration and doing well so far.

Now if she would only SLEEP

But all in all, things are going pretty well.

Emma update

2012-02-08T14:17:00.001-06:00

She's doing really really well :)

I went to conferences this morning at Emma's school. This was the first time Emma or I had been to the building in several weeks, and Emma clapped when we pulled into the parking lot.

Her teachers were very happy to see her and hear updates about the last couple of weeks. They all commented that she looked better than she'd looked in a long time, aside from the fact she'd obviously lost some weight. Our goal is for her to return to school next Tuesday.

In order to reach that goal, however, she needs to be on a feeding schedule that allows for some feeding breaks during the day. Yesterday, we got permission from her surgeon to start feeding her 2 small meals into her tummy (G instead of J) during the day, provided her system gets some rest before and after ... so we're trying to work out a schedule that will allow her to return to some of her normal activities but still get enough calories in.

I feel like I'm back in Jr High math class ... if a train leaves Denver at 10 am traveling 45 miles per hour ...

Anyway, she seems to be tolerating the new schedule so far. Most of the time she's still on a continuous J feed, but she tolerated a little over an ounce this morning into her tummy, which we'll take as a small victory! If she's a good girl for the rest of the day, we MIGHT even let her go to the nursery with her friends tonight at church!!

I've been telling people that I'm one good night's sleep away from just fine, but I think the exhaustion is really starting to settle in. Remarkably, though, grumpy-ness is not (yet?). I'm more ... still deflating maybe? We got copies of all the physician's reports from the hospital yesterday so I actually read the surgeon's report about the procedure. After the initial incision, it took him an hour of working through adhesions and scar tissue before he could even find the old Nissen spot. An hour! That sort of hit me. Not in a sad way, but just more like I gave myself permission to realize that we have all been through a lot

My Scripture passage for this week is Psalm 86 (I'm sort of using it to keep the grumps at bay)

Teach me your way, O Lord

and I will walk in your truth.

Give me an undivided heart,

that I may fear your name.

I will praise you, O Lord my God,

with all my heart.

I will glorify your name forever,

FOR GREAT IS YOUR LOVE TOWARD ME.

Thank you so much for your prayers!

Love

2012-02-05T14:42:00.001-06:00

I missed you, big brother

I {heart} Scripture

2012-02-03T15:05:00.001-06:00

... or, giving the Holy Spirit more to work with

I've had some moments lately. Real crossroads moments.

No one else knew these moments were happening, because they happened in the middle of the night. I was attempting to sleep on the parent's ~~couch~~ bed next to Emma's hospital crib and I was met with a choice.

These were the moments: Do I despair or not? Do I worry or not? Do I trust God's faithfulness right now, in this moment, with this beeping alarm and these nurses and this problem?

I think it's safe to say that most people (moms, particularly?) have a pre-recorded voice in their head that plays out worry, doubt and fear really well. The slippery slope down the "What-If Trail" goes to some very dark places at 3 o'clock in the morning, especially in a hospital room.

So I wanted to share something that's helped me in the last couple of weeks. I've been challenging myself to memorize large passages of Scripture. Not like I did in middle school with the 3x5 cards and the "How Many Verses Can You Recite" sticker sheet, but big chunks of the Bible. The passage I chose the week before Emma's surgery was Psalm 77. I worked on a couple of verses at a time, every night, until I could say the whole passage.

Now, this sounds so dry and lifeless, even as a write this, but I want to share with you a couple of ways this moved in my heart:

First, you cannot memorize a large passage of Scripture that you don't understand. You have to wrestle with why the words go in that order and why the author said that twice and why that thought comes after the thought before it. For example, in Psalm 77 v 12:

I will meditate on all your works and consider all your mighty deeds

Why does he mention both the works and the deeds? Aren't they the same thing? Well, for me, what helped me get this verse into my head was the idea that the works of God's hands are the mountains and sunset and human circulatory system, whereas the mighty deeds are the things he does with what he has made, like parting the Red Sea. I don't know if that is a "correct" interpretation of that verse, but pondering those two words, 'works' and 'deeds', and coming to a conclusion about what they are saying to me ... it really helped with learning the passage.

Second, the mental exercise of memorizing a large chunk of the Bible gets that passage into your heart in a way nothing else ever has before. I feel more 'ownership' of a passage if I've worked like this with it, wrestled with it, learned it in and out like a stage-actor learns his lines. And then, it works it's way into my heart.

What is playing on the CD player in your head? Is it the mean words someone said to you long ago (or perhaps the mean words you said to them)? Is it a self-righteous list of reasons you are better than someone else? (I'm so guilty of that!) Is it the "what ifs"? Is it worry?

When I was lying next to Emma in the hospital and she was having a rough night, I was able to re-assign my mental soundtrack from "what if she doesn't get better?" to

Your ways, O God, are holy

(but wait! this sucks! she's not tolerating this, what if ...)
nope. sorry, self, you don't get to go there tonight

Your ways, O God, are holy. What god is so great as our God? You are the God who performs miracles; you display your power among the peoples.

I've never been able to stop the 3 AM worry-fest like that before. Having to work to recall the Psalm pushed out the fear and worry. It gave the Holy Spirit something to work with in one of those moments where I could NOT have formulated a prayer on my own with my own words. I owned these words, though. They had made it into my mind and heart and were there when I needed them. They helped remind me in communion with my God that He has a bigger plan and that worry was not going to help anyone.

God relates to His children in many ways. One way He talks to us is through Scripture. I just wanted to share with you a way He's been relating to me lately. I hope you're encouraged?

Have a great day!

Wait ... what?

2012-02-02T14:40:00.000-06:00

Just so we're all on the same page - I have no idea what happened. I don't know how she got sick. I don't know what we did that made it better. I don't know how to prevent it from happening again.

But she's home.

One pound lighter ... but feeling fine

You know what I love the most about my daughter? She still loves me.

She looks like a freakin heroin addict right now with all the needle pokes up and down her arms and legs. I helped hold her down for each and every one of those pokes. But she still loves me.

When Josh came to the hospital yesterday and sat with her while I packed up our stuff, she enjoyed sitting playing peek-a-boo with him. But when I was done packing and sat down next to him, she looked at me, gave me a big smile, and excitedly waved her arms for me to pick her up. Do you not remember the last 3 days, baby girl? Why on earth would you want to be held by me?

Someone says something insensitive to me and I stew about it. I hold her down to the bed while medical professionals torture her and she loves me anyway.

I'm pretty sure that, in the forgiveness department, she's not the one with the disability

So confusing!

2012-02-01T12:58:00.001-06:00

I'm sensing that this might be a two post day ...

So Emma had a rough night. It may be because a less-than-compassionate nurse's aide came in at 4 am to do vitals and it was that dangerous hour where Emma had had JUST enough sleep to think she could be up for the day ... or that she pooped twice ... or she may be feeling better enough to notice that she's in the hospital and not be sleeping well here ... but it was a bit of a rough night.

Today, she's acting much much happier ... except she doesn't seem to want to lie down for a nap.

Her surgeon is still concerned about her pancreas, but her GI doc thinks it's ok. We did another blood test and her enzyme levels are even higher than before (high = bad), but I think they are debating right now whether or not they are high enough to worry about. I think we may do an ultrasound this afternoon to settle the argument. I'm not sure.

I'm at the point where I want the issue settled (of course), but seeing her disposition today, I would trust them if they said we can check out of this fancy hotel :)

Come on, doc, look at this face! Does she look sick to you? :)

Praying

2012-01-31T21:17:00.000-06:00

Emma had a much happier evening after her nap.

I got some good smiles and play time before putting her down. I'm taking it as a good sign that she currently does not seem to want to go to sleep and is playing with her leg-cuff in hopes of finding that IV to pull on ...

But I digress

The nurse just came in with a can of full-strength formula. Emma is now being fed her full concentration at her goal rate.

This is where things went poorly last time.

I don't mean to be negative! I'm very hopeful that she will do great tonight and we will get to go ... you know ... that Plan That Must Not Be Named Lest We Jinx It ... tomorrow afternoon if she tolerates this through the day tomorrow.

However, the test for c diff just came back negative. That's great news, don't get me wrong, but it means that we seem to have an increased probability of not knowing what caused the badness. We have given her no medicine. Nothing has changed in her care since we brought her in, other than giving her 24 hours of GI rest. If her surgeon is right and her pancreas was just angry, then that's exactly what she needed and all will be well ... but I have to admit I'm still a little nervous.

So, Prayer Warriors!

We are praying that Emma tolerates this regimen of feeding and is well and healthy and healed. We are also, praying, however, that if Emma is not going to tolerate this, that she demonstrates it loud and clear in the next 12 hours so we can be in the right place to help her and not back to blurry-eyed-middle-of-the-night decision making about whether or not something's really wrong.

We serve an awesome God who tells us to come to him with our specific prayers. We are blessed.

Still don't

2012-01-31T13:37:00.002-06:00

We have a surgeon who is sure he knows what's wrong and a GI doc who's sure it's something else.

:)

The surgeon looked at Emma's blood work and saw an enzyme elevated that indicated an inflammation of her pancreas. He thinks that the pancreas is just angry about being messed with during surgery. If that is the case, and the pancreas is inflamed, it would put pressure on the stomach, causing the retching and general unhappiness. Retching leads to less food, less food leads to dehydration, etc.

The GI doc saw Emma's blood work and told the surgeon that the enzyme was only SLIGHTLY elevated and a tummy bug is more likely. With Emma having been on antibiotics after surgery, she thinks Emma is back to having our old friend c. diff, which would explain retching and diarrhea as well. Emma finally provided a stool sample for the nurses this morning, so cultures are being run to test for that. But those tests won't be back for a few days.

Meanwhile ...

If it was her pancreas, the treatment would be gut rest. She had gut rest yesterday with the IV, so the pancreas should have settled down, in which case she'll tolerate food beautifully tonight and we'll go home tomorrow afternoon.

If it was c diff, the treatment would be medication. The GI doc has started Emma on a probiotic that is sometimes used to treat c diff, but will be good for Emma's tummy even if she doesn't have c diff. If this treatment works, she should start tolerating food soon, in which case we can maybe go home tomorrow afternoon.

Either that, or we don't know what's going on

Emma is not a happy Bear today. We got a few smiles this morning, but she's also been pretty cranky, wanting lots of snuggles this afternoon. I love the snuggles, but it makes me nervous that she's more cranky as we're starting to feed her ... or maybe she's feeling better enough to be pissed that she's back in the hospital! Let's hope for that, huh?

So that's what I know

Or don't know, as the case may be :)

Back in

2012-01-30T20:24:00.000-06:00

I'm not really sure what to say. For the past couple of days, Emma has been doing more and more retching. And, like the lobster in the pot, I think we didn't really notice how bad it was getting over the weekend. It was worst at night and night emotions and night decisions are never trust-worthy.

So when we called our primary pediatrician for an appointment this morning because we had been up with the Bear retching for most of the night, we were surprised when she told us to go to the ER.

I'm not sure if it's a bug or the pain medicine or what, but she's not tolerating food in either the G or the J. She's not showing any other signs of illness, but retching on a brand-new Nissen is not okay.

So after many horrible, awful attempts, we finally have another IV in her leg. I think the strategy for at least the next 12 hours is to let her gut rest. We're waiting to see if she produces a stool sample that they can test for the usual suspects, also, but I really have no idea what's going on.

God does

But I don't

So we're back in the hospital again.

The Shouldn't Haftas

2012-01-28T21:04:00.000-06:00

I had a bad case of the Shouldn't Haftas this morning.

I shouldn't hafta do this.
I shouldn't hafta wake up early and assemble tubes and syringes and feeding bags.
I shouldn't hafta hook my daughter up to a tube all day.
I shouldn't hafta say 'no' to Charlie when he asks me to build Legoes with him.
I shouldn't hafta ...

Shouldn't Hafta-itis is bad.
It's bad for a marriage. (common side effects are the 'I-do-more-than-you-do-flu')
It's bad for relationships. (symptoms include a rash of 'my-life-is-way-harder-than-yours')
It's bad for your waistline (chocolate may temporarily relieve symptoms but not cure the cause)

The only antidote for me seems to be remembering that this is what love is.

And for me, I remember that Love did a lot of things for me that He should not have had to do.

And I bet He didn't think ...

I shouldn't have to be born in a manger
I shouldn't have to get my feet this dirty
I shouldn't have to tolerate friends who will betray
I shouldn't have to carry this cross
I shouldn't have to die

That's how much He loves us.

So I humbly ask for forgiveness. I need to trust the God who set me on this path. Complaining like the Isrealites in the dessert is a sinful lack of faith in the God who has demonstrated great faithfulness unto me.

His love is the cure for the Shouldn't Haftas

Flower Girl

2012-01-26T20:42:00.000-06:00

Exhale and Expand

2012-01-26T14:54:00.001-06:00

You know that day after a stressful and/or busy period of time when everything is finally starting to settle and everyone finally relaxes into sleep enough that the whole house actually seems to exhale? That day when the kids sleep in so late that you know that there will be laundry to be done because the little bladders can't handle this but you don't even care because they've been through so much that you know they finally feel secure and calm enough to really sleep so you let them?

I love that day.

Today was that day.

Sort of :)

The kids slept in, so this morning was good, but I'm still feeling strained.

I think what I'm feeling is that old familiar adjustment period. That balloon labeled "Normal" is expanding again to include something new. This time New Normal needs to make room for two tubes on the Bear and continuous feeds and pain management meds ... plus "Mom, can you come help me find this gray hinge-y Lego piece?" from the Master Builder downstairs. He's very very good at hearing that I can't do that right now, but I really really hate saying it.

Life will settle in again, I'm sure if it ... but it hasn't yet.

But He gives strength to the weary and increases the power of the weak

So I'll be okay.

HOME!

2012-01-25T16:56:00.001-06:00

There is no place like it

I don't have any cute pictures of us all here because, well, it's a little busy around here. With J feedings and a healing GI system, we're supposed to be feeding her 24 hours a day.

We're just trying to figure out what that looks like with an active and tiny 3 year old! :)

But we'll get it. We're so happy she's home

Don't jinx it

2012-01-24T13:12:00.000-06:00

There's a word that starts with an 'H' and rhymes with Gnome that someone around here heard a rumor about happening today, but Emma has to be a good girl for the rest of the day before that rumor is official, so I'm not going to jinx it by saying that word out loud for the next 5 hours ...

So in the meantime :)

She's had a really really great morning!

We had an absolutely awful night last night, but her surgeon is convinced that it's just muscle cramps from her gut waking back up. Emma produced other 'evidence' that supported that theory this morning as well, so I'm really hoping for a good nap this afternoon.

Her IV finally failed today, but she's been on J-tube feedings for 24 hours now, so they are sure she won't need an IV anymore anyway. We just have to make sure she tolerates everything (including pain medicines that have been going through the IV) through the tube for a bit before ... You Know What :)

And in preparation for the Plan Which Shall Not Be Named, we got a bunch of literature and information about her procedure and I thought I'd share this picture from it. This is the simplest explanation I've seen of the Nissen wrap. The only difference is, you'll note that for Emma the word "laparoscopic" is crossed out! The surgeon reiterated today how much scar tissue there was to deal with once he was in there, but he's very pleased with how well it went.

But I can already tell that she's on the road to feeling better than she's felt in a long time. She had a really content playtime with me this morning, smiling with me and even giggling a bit.

Charlie was able to come and visit his sister last night and drew her a picture on her white board. He told me that this is a picture of him and his "Suppy Puppy" playing with Emma and her new "Doggy Friend" at home. Eventually the picture grew to include a fort they would build in the living room also, but you get the idea :)

So I have high hopes for the day! Hopefully the next time I write to you it will be from ... well, you know :)

So much better

2012-01-23T14:55:00.001-06:00

I just spoke with the surgical resident. She approved an increase in Emma's tube feeds, which means Emma gets a break from the IV tube!!! YAY!

Now, I say "gets a break" because the IV is still in, it's just not being used at the moment. We did need it for morphine a little bit ago (the other stuff alone wasn't cutting it).

And this increase from the J tube is only if she tolerates it. If her gut isn't ready, she'll "dump," and we're back to the IV.

But she had a brief period this morning where the only cord or tube that was attached to her was the feeding! We actually got down on the floor and played!!

I've even gotten a couple smiles, and the old "Mama" sign!!

But then she needed some morphine, so we're back on a pulse ox, but at least she's resting comfortably.

Thank you so much for all the prayers and meals and visits and everything! The Body of Christ is absolutely an amazing blessing, thank you thank you thank you.

His faithfulness is Great.

She POOPED!!!

2012-01-23T11:03:00.000-06:00

Praise God, she pooped!!!

I've never been more excited about poop in my whole life. :)

She's starting to wake up, so I'll make this short. We are starting the slow process of feeding her through her J-tube. Her nurtrients are still coming from the IV, so we are feeding very slowly through the J just to see if she's ready to tolerate food. Then we will start the slow process of decreasing the IV and increasing the J feedings.

Our prayers for the day are the she'll tolerate the food and that her pain will be managed. The docs want her off the morphine and the IV Ibuprofen is bad for the kidneys, so they are trying something new. I have to admit, I'm a little nervous about it because it must be given through her stomach to work properly, so I'm praying that her little tummy is ready for that!

Thanks so much for your prayers!

Still here

2012-01-21T18:37:00.002-06:00

Last night was very rough for the girl. The morphine doses were not keeping up with her pain, a problem which was compounded by the Diva's lack of understanding about why all the wires are attached to her. She has quite a few accessories, and she doesn't approve of any of them.

Today seems to be a bit better, though. They've added another pain medicine that seems to be keeping up better than morphine alone.

She's sleeping more today.

And, on the home front, Charlie had a wonderful birthday party today. Lots of wonderful family and friends showed up to help and celebrate our boy. We love you all! Thank you.

Thank you so much for all your prayers. We've specifically requested prayers of protection for her IV site, because if her IV site fails, sticking her again just seems cruel. She already looks like a pin cushion between the 3 sites that didn't work while trying to place this one in the OR (thankfully she was already under for those) and the 3 sticks that didn't work for a failed blood draw this morning. This IV is her only source of nutrients, fluids, and medicine right now.

They were hoping to try feeding her through her J-tube today, but (quote) "she needs to start tooting first"! Apparently everything hasn't quite woken up yet. Not being able to start that today probably means that coming home has been pushed back a day, but that's okay. If she needs more time, we'll give her more time.

So the IV is very important right now, as is rest and recovery. We are thankful that our nurse today seems very compassionate regarding our little sensory princess, so she's gotten a bit more rest and relief from the pain today.

This is a rough road, but we are so thankful for all the wonderful people God surrounds us with who walk so lovingly with us.

Surgery is done

2012-01-20T17:16:00.000-06:00

That was a very long day.

The princess did very well with surgery. Mommy did not, but Emma did great. The surgeon said that there was a lot of scar tissue to work through, but that once he was in it went well.

He re-did her Nissen, but did not do the secondary pyloroplasty procedure. As a compromise, the surgeon placed a temporary G-J tube. Now she has a button with 2 ports, one going to her stomach and one connecting to a tube that goes into her intestines. They want to let her stomach rest for a few weeks while her Nissen heals, so we'll be feeding her directly into her intestines.

He was also able to use the original incision, so while this was a large opening, she will not have a new scar.

The interesting twist is that he was able to look around her G-tube site and saw that it was pushing up against her rib cage. He said that there is a bundle of nerves running along the bottom of the rib cage that, if the tube is rubbing against, could be causing significant discomfort. So he moved her G-tube site to lower on her tummy. So there are two scars on her tummy to heal, but hopefully we've removed more than one possible sources of pain for the Bear.

We're here in the hospital for a few more days. She's on several methods of pain management, so they are monitoring her very closely.

We are so so thankful for all the prayers!

I've been meditating on Psalm 77 - "When I was in distress, I sought the Lord ...I will meditate on all your works and consider all you mighty deeds. Your ways, O God are holy. What god is so great as our God? You are the God who performs miracles."

Thank you, Jesus, for bringing Emma safely through surgery

Soap

2012-01-19T08:50:00.000-06:00

We've never had to buy this stuff before.

It's the special soap to wash her skin before surgery.

It's kind of throwing me for a loop.

Tomorrow morning, we are going to wake her up early to wash her skin with this special soap. It's to prep her abdomen for an incision.

They are going to open her up.

I can't do this. I've prayed for God to take it away.

But I think I'm getting the same response Paul got.

"My grace is sufficient for you. My power is made perfect through your weakness."

Okay, then, God. I'm trusting ... I'm casting my cares and knowing that you will sustain me.

Please pray for our little girl?
Thanks :)

This should really burn more calories

2012-01-17T22:00:00.000-06:00

We had a DAY today.

(She even looks cute in hospital clothes, doesn't she?)

Yesterday, Emma had her pre-op appointment for her big surgery coming up. She did great for the physical. She's kind of decided that our Pediatrician Who We Love is maybe a nice enough lady that she can examine her without screaming.

Not screaming is good ... but it allowed our doctor to get a really good listen to Emma's heart.

(don't worry, this turns out ok)

Some of you may remember that Emma had multiple heart defects in utero, all of which resolved at birth ... well, she still has a heart murmur. Until now, her specialists have said that the cause of the murmur is nothing we need to worry about, but our pediatrician said that she heard it more distinctly than ever yesterday and wanted Emma to have an echocardiogram before surgery. Emma also needed an endoscopy before surgery, so we got both procedures done today.

(and, just for fun, we asked if her ENT was around and if he wanted to join the party. Seriously. We weren't planning on it, we honestly just popped into the OR and asked if Dr L was around and if he wanted to peek in Emma's ears while she was under. He did. They look great. YAY!! I am thanking God tonight for his hand in the details of today. We weren't planning on being at downtown location of our Children's Hospital, but the suburban location wouldn't put Emma under because of her airway. Since we spontaneously had to switch to the downtown location, we were able to get all 3 procedures to fall into place with only one sedation. I'm so glad it worked out ... because how often does that happen?)

So Emma went under general anesthesia today and her docs took a look around.

Her heart is ok. Not the same as yours and mine, but ok for now :) Approved for surgery.

Her tummy looks ok, too. Esophagus looks red and irritated, but that's why we're doing the surgery, right? The GI doc doing the scope also confirmed that he didn't have to push through a Nissen wrap at all when going through her stomach opening. Her original Nissen seems to be completely open, leaving her esophagus wide open for reflux.

We also got the results of her gastric emptying study from last week. She's emptying her stomach just fine, so I think our decision is made about the pyloroplasty. We will just do the Nissen and not the secondary procedure. She doesn't need any help getting her food to go "south" quicker, we just need to keep it from also going "north."

So I think we've got all our ducks in a row.

Honestly, we had a really really long day (and wake-up from anesthesia was really rough), but I saw the Lord's hand all over the way the day came together. It's reminding me of His presence and giving me peace.

Thank you all for your prayers!

Do not

2012-01-16T16:30:00.000-06:00

Do not be anxious

Do not fear

Do not worry

Do not be dismayed

Do not be afraid

Do you struggle to get "traction" with these verses? Do you have seasons in your life when they seem like cliche platitudes?

I do

I'm leaning

I'm falling hard into them right now

I'm trying to rest in God's hand, but sometimes it feels more like being pushed

it's an act of will sometimes

and sometimes

Like they are the net when I'm in free fall

And I have to stop

Because that's the only option

I have to listen

What is He saying?

Do not fear for I am with you.

God

is with

me

We cry "Abba, Father."

Daddy

not a spirit of fear but of sonship

I am his daughter

and so is Emma

So do not fear for I am with you. Do not be dismayed for I am your God.

I (He ... the One who flung the planets into orbit and made her heart beat)

I will strengthen you and help you, I will uphold you with my righteous right hand.

and the peace of God

transcends all understanding

will ...

Just keep swimming ...

2012-01-11T15:00:00.000-06:00

One foot in front of the other.

Lots to report, but first ...

Charlie turned 5!

I love this boy so much, and I can't believe how big he's getting. I'm proud of who he is and how much he's learning. His sweet, tender, generous, kind, sensitive, loving heart makes me melt. He's ALL boy these days, running and building and joking and joyful. Mommy and Daddy love you to the moon and back, Charles Monster!

And in other news ...

Emma's EEG results came back (I was super annoying and called and convinced them to ask the neurologist on-call to read the data ... sometimes you've gotta be the pushy Mama-Bear to get the information you need...). We are glad to report that there was no seizure activity during this test. Given that they tried all the lights and everything to try to induce a seizure, Josh and I are satisfied enough to interpret this to mean that her behavior is pain-related, not seizure-related. The results were still marked as "abnormal," so I'm sure we'll have to discuss that at her neurology appointment in February, but for the time being, we're comfortable putting this issue on the back burner.

The next two weeks are going to be consumed with learning as much as we can about Emma's GI system. We met with her GI doc to discuss her reflux issues, and she agreed that it was time to go ahead with the Nissen re-do surgery. The surgery is scheduled to be in about 2 weeks. In between now and then, we need to gather as much data as we can to decide about a possible secondary procedure called a pyloroplasty that they may do along with the Nissen re-do. Her GI doc doesn't think she needs it, her surgeon does.

Emma and I spent the morning in radiology at Children's doing a gastric emptying study. Basically, her breakfast was "spiked" with some radioactive stuff that they watched go through her system. She did really well. It was scheduled to be a 2 hour study, with the tech taking images every 10 minutes to watch the stomach empty. After an hour's worth of images he told me that there was nothing left in the stomach, so we could be done. Emma hated the imagining part (screaming, pooping, gagging, retching, choking), but the pictures were quick and between them we just sort of hung out. That part was nice.

So we wait for the official results from that study, but I'm preliminarily optimistic that these results may mean that we can avoid the second procedure! We'll see ...

Next week, we have Emma's pre-op appointment (please pray Emma doesn't get sick between now and then?!?!?!) and then an endoscopy under general anesthesia. This is to determine if there's anything else in there that is either contributing to the pain or needs to be addressed before surgery (like an ulcer or infection). Assuming all is well, opening up her abdomen comes next ...

Thank you so much for your prayers. We've actually got a pretty fun weekend planned before the real craziness hits, but we'll keep you posted on how everything progresses.

God bless!

The Princess was Displeased

2012-01-05T22:02:00.000-06:00

We had a 4-hour EEG this morning with the Emma Bear. It was pretty awful

After keeping her up late and waking her up early, we brought her in to have 20 electrodes attached to her head.

Now I know that the idea of "sensory issues" is not something you would understand unless you have a child in your life who has them, so let me break it down for you. For whatever reason, she is very defensive of her hands, feet, and head. Trimming toenails results in blood-curdling screams. Brushing her hair has just started to get a little better, but putting any sort of clips or pigtails in her hair is ... well, we call it a rodeo :) For whatever reason, she acts as if she interprets it as pain when someone has to mess with her head. Luckily, however, she's pretty forgiving when it's over, so you just have to bite the bullet and do whatever you need to do.

Daddy got the super-fun job of giving her the Bear-hug today while I tried to distract her and the tech placed the sticky stuff.

She was so angry she pooped. She screamed so much it caused an awful retching fit that caused her to stop breathing for a bit while she worked on swallowing and clearing her airway.

It breaks my heart that she doesn't understand. There's no explaining it to her. She can't be "negotiated" with. She can't voice her concerns and wouldn't understand the reasoning behind what we're doing anyway. Not that we don't try, but it's still gut-wrenching to watch her panic.

But just like with pig-tails, once the electrodes were placed and secured, she sort of seemed to forget about them.

The tech said we needed to record 20 minutes of quiet awake time, and then a cycle of various stages of sleep. Emma cooperated beautifully with that, pouting in Daddy's lap for awhile and then falling asleep on Mommy's shoulder. The tech was even able to attempt to induce seizure activity with some rapidly-blinking lights. After the terrible prep, Emma was actually a perfect patient! We were out of there in under 3 hours!

Unfortunately, I don't have any results to share. We didn't see any of the behaviors that made us question seizure activity, which I suppose is kind of frustrating that we didn't "catch" it. The tech said that a doc needs to interpret the data and that we would be hearing from him. My understanding is that the plan is for him to call if he sees something. If she didn't have any seizures during the test, then we discuss next steps at our appointment in Feb.

So for the time being, no news will be good news.

I guess :) I think, if we didn't catch anything weird on this test and we are still concerned, we could move on to a 24 hour EEG.

But we walked out of that appointment saying "Never Again!"

One step at a time. We'll see what comes of the data we have.

Thanks so much for the love and prayers!

Prayer Request - test tomorrow

2012-01-04T23:40:00.000-06:00

Happy new year :)

So I haven't blogged about our latest "wrinkle" in Emma-stuff because I haven't really thought it through until tonight.

When you describe some things you've seen to the pediatrician and she refers you to neurology and they schedule a test to check for seizures and that test gets scheduled within a week ... you don't really stop to take a breath ... mostly because then you'll feel overwhelmed ... sort of like how cartoon characters can run across the top of the water as long as they just keep running and don't stop or look down.

Tonight I'm up late because Emma needs to be sleep-deprived for the test tomorrow, so I've finally gotten a chance to think about what exactly my prayer is for this situation.

We have, for quite some time, noticed that Emma does some weird things. Sometimes her eyes roll back. Sometimes she laughs hysterically for no good reason. Sometimes she'll stop playing suddenly and sit for a minute and then just lie down.

The laughter is usually associated with being tired.

The other stuff, since it has increased lately (especially the randomly lying on the ground moaning), we've just assumed is pain-related.

I could also be seizure-related, too.

And if we're deciding to do surgery based on the assumption she's in pain, we need to know for sure that what we're interpreting as pain is NOT a seizure.

So tomorrow she's going in for a 4-hour EEG, where they stick things to her head and watch her brain activity for seizures. She'll love it. Especially since she's only allowed to sleep for 5 hours tonight. (apparently you're more likely to have a seizure if you're tired ... who knew?)

My prayer is this: PLEASE let her show these behaviors tomorrow during the test. Whether they are seizures or not, please please let us "catch" them so we can see what her brain is doing when she does those things. Please let us have peace that the test is accurate so that we will have clarity moving forward with the reflux surgery decision.

I'm so blessed by the knowledge that I know I have friends who will be joining me in this prayer

How's it goin?

2011-12-20T16:00:00.000-06:00

Just an Emma update ...

Emma is definitely still suffering from reflux, but the past 2 days have been MUCH better.

She has been on an antacid for years, which helps the acidity of her stomach, but this current issue is more about mechanics than chemistry. Her Nissen (wrap at the top of her stomach that should stop stomach contents from going "up") has been called "incompetent," and things are going "north" when they should be going "south."

She is now also on a med that should help things move south more quickly so they don't have a chance to go north, but too much of that med results in more stinky laundry than I'm comfortable with.

So we've been messing with the dosage of that medicine a bit, because the past couple of weeks were AWFUL for our girl.

But on Sunday we started a new bottle of Prevacid (same med she's been on for years, just a fresh bottle) and it seems to be making a difference. She is clearly still refluxing, it just seems to be causing her a little less distress.

So maybe the old bottle had gone bad somehow? Maybe the increased pain was from reflux that was too acidic and now she's still refluxing but it's less acidic so it hurts less?

(or maybe it's the prayer card we filled out for her on Sunday? :))

Either way, life is better today than it was a week ago, and that's good

Our plan is to let ourselves have Christmas and then let Charlie have his 5th birthday before we do anything. We have some decision-making appointments in early January, but until then, I'm going to be thankful for the happy-er Bear :)

Hark!

2011-12-19T15:50:00.003-06:00

Oh. My. Goodness.

What is it about December? Every emotion just seems magnified during this time of year, doesn't it?

Here's what's been going on around here:

Emma's reflux has been causing her pain lately. It's been several weeks of rough days with her pain episodes. (with, I'm sure, a few tantrums thrown in there for good measure, but sometimes it's hard to tell)

If you've seen us lately, you may not have witnessed any of these episodes, because she can be distracted from focusing on the reflux. However, having to CONSTANTLY entertain the three-year-old is exhausting ... and having to choose between carrying her around and listening to her cry is wearing on me.

Last night, though, she actually had a pretty good night. She got down and played with some new toys, giggled with Daddy, read some books with me ... Josh and I looked at each other and realized how long it's been since we've seen our old, happy Bear. We realized that we had gotten used to a very fussy girl. It was a wonderful night, but it highlighted for me what we've "adjusted to" around here.

This morning, she woke up pretty grumpy again, but actually did pretty well at Big Brother's preschool Christmas program. It's very up and down.

And I don't think I'm the only one who feels strained to find a moment in the busy-ness of December to really "soak in" the joy and message of the season. It feels juxtaposed to me this year. The midnight clear and little town and angel choir and good news and great joy feel like they are in a different world somehow.

Occasionally, though, Christmas breaks through. Mostly it comes through a quiet and unassuming song or tiny moment with the lights on the tree and a hug from my son.

But let this serve as a public announcement:

I may burst into tears (happy or sad) at any moment during this Christmas time. Should this occur in your presence, a hug is all that is required :)

That's what ...

2011-12-13T09:23:00.000-06:00

Christmas is all about, Charlie Brown :)

I was a lot smarter before I had kids

2011-12-07T15:49:00.001-06:00

Charlie: "Mom, why are the flags flying lower today?"

Me: "People fly flags at half mast to remember or honor someone or something that has happened."

C: "What are they remembering today?"

Me: "It's Pearl Harbor rememberance day today. On this day 70 years ago there was a big attack on America at Pearl Harbor."

C: "What happened?"

I told him as much as I knew about planes coming from Japan and dropping bombs on American battleships in the Pacific Ocean.

He paused for a little bit and then asked

"Why?"

Deck the Halls

2011-12-06T20:45:00.001-06:00

We've carefully chosen a "toy for someone who doesn't have as much as we do"

And piled Mommy's ENTIRE side of the family into Uncle Mark's truck to cut down our trees together.

The kids have helped Daddy make sure the tree is straight and centered.

"Helped" ... right ...

Emma was particularly helpful with the lights

We've wondered ...

and investigated.

Daddy's job is to put the star on top.

We've hung our very special ornaments.

"The angels are near the bottom because they are like the angels who came DOWN from heaven to tell the shepherds about Baby Jesus." Seriously, where does he come up with this stuff?

We've told Emma all about her "Baby's first Christmas" ornament and how glad we were to have her home!

And we've set out Mommy's manger scene.

We've inspected our handywork. many. many. times.

And now we're all exhausted! :)

Merry Christmastime!

Charlie flashback

2011-12-05T14:36:00.001-06:00

Just for fun :)

My little boy was asking me about songs he liked to sing when we was little, so I pulled up some old Charlie posts. This one is him singing Our God is an Awesome God and one of his very first Bible verses ("I not be afraid for God is miss me")
And this one is Charlie's version of Mighty to Save.

Both are from NICU days. I have no idea how either of my kids have gotten to be so big! Last I checked, I had a toddler and a baby ... and I'm pretty sure I'm not a day older than 26 ... right?

Oh, well. :)

I just had to share ... these are, in my opinion, pretty stinkin cute :)

This child ...

2011-12-02T14:25:00.001-06:00

cracks me up!

She spends a lot of time just being goofy, which I love.

And she's back into a phase where I can plop her down with toys and she'll play independently for quite some time.

People have asked how she's doing. I honestly don't know the answer to that question. She had an illness and needed antibiotics, which always throws her GI for a loop, but that's finished now and we're sort of back to "baseline."

But I'm really sure what that is. There are days when I think that maybe the Plan B medicine is actually working well enough that we could maybe avoid surgery for awhile, but then I find her lying on the floor moaning. She's doing great ... until she's just not.

And she's 3 ... so yesterday she had SEVERAL screaming episodes that could have been pain ... or they could have been "I'm three and you're not getting me what I want and I'm mad even though you have no idea what it is I want"

sigh

So we're plugging along. We've got an appointment next week to discuss what surgery would look like.

I really really really hate this decision. I don't say "It's not fair" very often, but IT'S NOT FAIR that my (medically complex) little girl can't talk and tell me what's troubling her ... and so therefore we have to decide whether to take her to the OR to open up her abdomen based on ... her sleeping patterns? Her behavior? (Did I mention she's three?)

But we just had a delightful playdate and she's happily ~~napping~~ working her way down for an afternoon nap. So today is good.

And I guess what more do any of us ever have, right?

I am Emma, queen of all!

Either way, I know we will be ok. God is God and I am not and that is good. Right? :)

Thank you for ...

2011-11-22T20:17:00.001-06:00

I have lots of vivid memories from my 5th grade Sunday School class.

Two men teamed up to teach the class, and had for years. They were very very good Sunday School teachers.

The only negative memory I have of that class was the prayer time at the end of every lesson.

I think our teachers wanted us to start getting comfortable with praying out loud as a group, so at the end of every lesson, we stood and went around the class and everyone had to say something.

I'm sure it was a good idea on paper, but what it turned into was a bunch of very timid middle-schoolers NOT wanting to stand out in any way ...

So we all said the same thing:

"Dear God, thank you for my family and friends."

Around the circle the chant went, deadpan and robotic, all of us fearful of possibly putting ourselves out there in any sort of vulnerable way, so all of us saying,

"Dear God, thank you for my family and friends."

Week after week, that's what we prayed. I'm not really sure how it got started, but it was the rut we fell into.

So now, when I think about thankfulness, that sentiment sounds cheap to me. Like it's cheating. Like I should be WAY more profound than thanking God for the family and friends I am surrounded by.

But

God has given me some AMAZING friends. They support me so wonderfully and challenge me to be a better wife and mother. I am so blessed by my friends.

And I have an INCREDIBLE family. My husband and children love me so much more than I deserve, and our extended families also support and love us so generously. I could not ask for better in-laws, better siblings, better grandparents for my kids, or a better father to my babies.

So my overwhelmingly heartfelt prayer this Thanksgiving is

Dear God, THANK YOU for my family and friends.

I never met him

2011-11-19T13:49:00.001-06:00

We are so blessed in this day and age to have the ability to connect with people all over the world through these strange little boxes.

When we first got Emma's diagnosis of CdLS, it was terrifying to know that no one would know what we were talking about when we said those letters. When we first brought her home with a tube sticking out of her, it was isolating to know that no one we knew would be able to give us the comforting advice of someone who's "been there." I'll never forget the panic I felt the first time I saw the bright red in that tube that told me that her stomach was bleeding. I felt like I was the only parent alive who had ever seen such a thing. It was awful.

But then I discovered this group of very unlikely friends. Through this blog and then later through other sites, I "met" some amazing people. We are mothers, fathers, gay, straight, liberal, conservative, single, married, engaged, divorced, Christian or not. And we are FAMILY ... even though, in some cases, we've never met.

We all love someone with CdLS.

And through this strange, miraculous technology (for which I am VERY thankful!) we can be in touch at all hours to ask questions like, "How do you stop inquisitive little hands from feeding the bed?" ... and we know that we'll find someone on the other end of the "wire" who KNOWS what we are talking about.

We've been there.

We rejoice like no other because we KNOW what it's like to wait a long time for those milestones.

We bear with one another and hold each other's burdens, because we know the PAIN of ... well, all of what makes this unique road hard.

And we laugh and are comforted because our child is not the only child who will, for example, only walk holding your hand ... we sigh because a push toy won't do and we smile because we remind one another of what a blessing it is to get to walk with them for awhile longer than most.

It's amazing how much these kiddos have in common!

And I know that it's weird to think about being close friends with someone you've never hugged. And I know that being emotionally invested in these relationships is confusing. I wouldn't have understood it a few years ago.

But I'm mourning the death of a child I've never met today.

And I know that's weird

And I know it's confusing.

But one of our little CdLS boys passed away this week, and we all mourn together.

And yes, we probably internalize it a bit, also, knowing that we have no guarantees. It's a complex set of emotions, to not want to "borrow" someone else's pain, but to feel it in a way that hits closer to home because ... well, when I saw a picture of his smile, it looked so much like Emma's smile ... and when I heard a video of his laugh, it sounded so much like Emma's laugh. And when ... well, you get the idea.

We're reminded that, not to sound too cliche', but every day really is a gift from God.

Dear Jesus, please surround this little boy's family with peace and love today. We rest in the knowledge that he is with you in paradise, but we know he will be missed.

"I wish Emma didn't have CdLS"

2011-11-14T07:45:00.001-06:00

Charlie has two little ones in his life who are around 10 months old. One is his cousin Sophie and the other is the son of a friend of ours who I'll call "L". :) The thing that's super fun about this age is that they think Charlie is HILARIOUS! It's the age where all he needs to do is touch his forehead to theirs and say "Ahhhh-boo!" and they'll laugh.

The hard thing about that age, though, is that they are just about the same 'size' as his sister.

If you were to ask me about my 3-year-old's skills, I would tell you that she's probably developmentally about 12 months old. She says, "mama" but not much else and she can walk but it's still faster to crawl. She wears 18-mo clothing just like his cousin, and she's just as needy.

So when we were sitting at lunch the other day, I could have read his mind, watching him watch his sister. He walked over to her and put his forehead to hers and said "Ahhhh-boo!"

She didn't laugh.

He used to be able to make her laugh ... but these pictures are from Dec 2009

I'm not sure if it's because she's too old for that or if she's just not cognitively or socially typical or if the novelty of her brother has kind of worn off by now, but it clearly affected him that she didn't laugh. He didn't get upset, but I saw him sit back down, very deep in thought.

"Mommy? I wish Emma didn't have CdLS."

"Yeah ... Why do you wish that, buddy?"

"So that she could talk to me and I could talk to her"

"I wish that, too, Charlie."

I thought for a long time about the right thing to say next. (SERIOUSLY, WHERE IS MY PARENTING MANUAL???) I was proud of him that he was able to give voice to what he was feeling. I was conflicted about what he said, though.

"But, think about it, dude. If she didn't have CdLS, she wouldn't be the same little sweetie worm."

"Would her name still be Emma?"

"Well, yes, I suppose, but we love her just the way she is, right?"

"YES!"

"Then, well ... I guess we can wish she would talk and wish she didn't have so many appointments and sicknesses, but ..." I didn't know how to finish that sentence.

"Yeah, I don't like appointments, mom."

"I don't either."

I thought again for awhile

"You know, Charlie, we don't know that she'll never talk. We just have to be patient sometimes with some things."

"That's hard."

"Yeah, but that's where God helps us. Remember your fruits of the spirit song? He gives us patience."

(he breaks into song) "Cuz the fruits are love joy peace patience kindness goodness faithfulness gentleness and self-control."

and then the moment was over, lost in the silliness of the song.

Charlie sat and hummed and ate his lunch and I want credit for the fact that I did NOT cry.

I do NOT have this all figured out!

I wouldn't trade Emma for the world

Without CdLS, Emma wouldn't be my Emma

I sometimes hate CdLS

I love Emma

(and, parenthetically, there's this whole theological side of things that i don't really have figured out either. someday i'll write my "did God give emma cdls?" post, but today is not that day. i guess i'd refer to Psalm 139 and Ex 4:11, but i'm still sure i'd get it wrong. either way, i have a strong sense that God doesn't make mistakes. in fact, i would find it offensive if someone were to say something to me about "the child she would have been" had this terrible thing not happened to her. but i can think of instances in the Bible where God clearly allows suffering ... and there is certainly suffering on this road ... so while emma is clearly a blessing and cdls is all tangled up in that blessing, i'm not sure whether i could ever separate cdls from emma when i thank God for her ... so am i allowed to wish she didn't have it? i'm not sure ... but God can handle that :))

Sometimes I think that, when we are both grown-ups, Charlie will have this figured out WAY more than I will. He gets the benefit of being a child at the beginning and not having the burden of worrying about saying the right thing. I'm all grown-up and afraid I'll offend someone if I admit to not liking CdLS, but he doesn't have that burdening his process. He just gets to love his sister. And as he grows, his love for her will certainly get more complicated, but it will grow, too. I'm really really proud that he is mature enough in his love for her to admit that sometimes this stinks but that he loves her anyway.

He still thinks she's his silly little sweetie worm :)

(this picture was taken after that conversation ... he still likes her :) and she likes him, too)

I am so blessed to be their Mommy.

Happy Birthday to Emma

2011-11-12T17:00:00.001-06:00

It's hard to believe she's three!

I love her so much, I can't picture life without her, and I'm really really proud of her.

But I have to say, today is a little depressing.

Yes, there are the expected emotions of the word THREE ... now having to tell people that my THREE-year-old doesn't talk yet and that kind of thing. In many ways, she does seem three to me (can we say DIVA?), but in so many ways, I agree with the strangers who say, "wow, she doesn't seem three!" ... not that it doesn't still sting a little to see their surprise.

But actually, that's not most of why today is depressing. Today is depressing because, for the second year in a row, we've had to cancel our family celebration of her birthday because she's too sick. Last year, she was in the ER on her birthday, so I suppose conjunctivitis and a sinus infection (in addition to continuing unresolved reflux issues) is an improvement, but it doesn't feel much better.

On the plus side, though, I can talk again! My throat is still pretty sore and it hurts to eat and all that ... so really what this comes down to is that I've discovered the best weight-loss plan EVER ... or not. :) But I think by Monday I will be very ready to join the land of the living!

So happy birthday, Emma! Your family and friends love you immensely, even though we have to hold you down and put drops in your eyes.

Checking in

2011-11-11T09:02:00.002-06:00

Emma is sick and my recovery isn't going as quickly as I would have hoped.

For those who don't know, I've been MIA lately because I had my tonsils out. Yes, I know, I'm a little old for that :)

It's something I've needed to get done for awhile now and when we scheduled the surgery, it seemed like we'd arrived in some calm waters in our crazy life.

But the surgery was a week ago and I'm still unable to talk. I'm weaning myself from the narcotics today because it's time for Josh to go back to work and me to be able to drive. Children's Advil tastes really yucky, btw ... but I can't exactly swallow pills yet.

And on top of everything else, Emma seems to have developed a cold. Poor baby!!!! :(

And, one more time, cue the Mommy Guilt!

I have to say, though, I could not be more thankful! I am SO thankful for our family! The grandmothers have been SO wonderful helping us this past week!!!! And Josh has done a really great job of ... you know ... doing what I do :)

Thank you, Jesus, for my family. I don't know what I'd do without them!

Not Okay

2011-10-29T15:57:00.003-05:00

Emma is not okay.

Her pain from her reflux seems to have gotten worse, and sleep around here is a pretty rare commodity.

Up until this latest issue, we would have usually fed Emma about 40% of her daily calories overnight through her tube while she slept. And when this issue first started, we were feeding her even more overnight because she was retching and gagging so much during the day it was was hard to get enough in during daytime meals.

Then we started Plan A, which was a small amount of a medicine 4 times a day that was supposed to 'speed up' her digestion. The hope was that her food would get sent 'south' out of her tummy before it could travel 'north' in reflux. Plan A worked in that she started retching less, but ... well, not to be gross, but the plan of getting stuff to go 'south' quicker started working a little too well.

Next up was Plan B, which is an even smaller amount of the medicine 4 times a day. The big 'D' seems to have gone away for the most part; her diapers are back to normal (I know you REALLY wanted to know this ...). But now Emma's retching is slowly starting to come back. And this time, what's really making life miserable is that her nighttime reflux seems to be really really bad.

She wakes up at night moaning and retching and gagging and coughing. If we go to her, she just arches her back and reaches back for her crib; she clearly just wants to sleep. Then she does that 'breath-holding-breathing' that sounds like she's in pain for awhile, and finally she does fall back asleep for a couple hours until she's up again and we do it all again.

When I spoke to her pediatrician last week, she said that Plan C is surgery to redo her Nissen. This is a much more major surgery than just getting her ear tubes replaced, and I really don't want to put her through it. Her doctors (primary and GI) feel that we need to make sure we give Plan B a fair chance to work before we move on to surgery, so the plan was to call them during the second week of November. Drugs need time to really fully take effect, especially when we're talking about tummy drugs ... I know that ... but we want Emma all better NOW!

I don't think Emma's going to get all better now ... or tomorrow ... or the day after that. I think if the drugs are going to work it's going to take time. And even if we do move to Plan C, surgery like that doesn't usually get scheduled over night.

So we're plugging along. We're starting to feed her less than we have been, which is an awful feeling, but if putting food in her tummy while she sleeps causes pain, then we'll put less food in her tummy while she sleeps in an effort to cause less pain. We've been so good about keeping her calories up to where they are supposed to be, it feels irresponsible to feed her less than that, especially since her appetite has nothing to do with what goes in. I hate the thought that she might be hungry, but we can actually get her play with us happily when she's not in distress because her tummy is trying to empty in the right direction. And ... cue the Mommy-guilt.

God is good, all the time. We appreciate prayers. Emma will eventually be ok, just not right now.

This sucks.

Smiling Pumpkin

2011-10-27T15:27:00.003-05:00

As much as I wish Emma didn't have to go to school in the afternoons, I do love me some time with my boy.

Happy Fall!

You don't know

2011-10-25T21:13:00.004-05:00

We were sitting along a window ledge at the Children's Museum eating lunch. She was sitting alone a few feet down, obviously waiting to meet someone.

She was old enough to be my mother, but was wearing more jewelry and had a much bigger purse than my mom does :)

As Charlie took his first bite of his PB&J, she struck up a conversation with him about how cute his shoes were. I sighed, because I had been hoping I'd be able to get away with feeding my daughter without a stranger commenting on it.

No such luck.

This lady was more bold than most, she opened with

"How long does she have to eat like that? When are you going to be able to start feeding her normally?"

Usually that question is about 5 sentences into the conversation, but I guess we were just diving right in that day.

I told her that Emma has been tube-fed since birth and that it was a matter of getting her muscles strong enough. I stopped there because it was already feeling like there were going to be more questions than answers in this conversation.

The woman told me that she had a friend with a grandson who was tube-fed.

She rolled her eyes toward me and said,

"Except he's almost THREE! Can you believe they're still feeding him that way when he's almost THREE years old?!"

As if it were a choice. She nodded at me as if she had just told me the juiciest gossip about the worst parenting decision she'd ever heard.

I asked why he had gotten the tube. She rolled her eyes and told me she wasn't sure, but it happened in NICU "because you know how those DOCTORS are!"

"and now they've all just gotten so used to the silly thing; it's made him LAZY!"

I opted out of telling her Emma's age and just smiled politely.

Then Emma pulled one of her hearing aides out. I told her, "No, no, Emma. We need to keep those in your ears!" And put them back in.

I was about to engage Charlie in conversation, but the aforementioned woman interrupted as Emma pulled the other aid out.

"Oh, come on, Mom! She doesn't want to wear them! It's too loud in here for her, let her keep them out!"

I didn't respond at that point. I put the aid back in and distracted Emma with a song and she kept them in for awhile.

"Does she talk?" was up next.

I just politely smiled and said that she will someday but that she's got a lot going on. Mercifully, Charlie asked me to open his applesauce for him at this point so I had an excuse to attend to my son.

And I'm not kidding when I tell you that this way this woman exited this conversation was to point to another stranger and say, "Oh my gawd, I NEED to ask her where she got that sweater!"

I didn't blog about this encounter when it happened because a) I had a WAY more important adorable video of Emma to post from that day instead and b) I didn't want to just whine. And actually, to be honest, she didn't hurt my feelings as much as she left me feeling angry and self-righteous. How dare she give me advice, right?

And then I read this post this week about assuming the best in others (on a different topic, but still applicable) and it got me thinking about that encounter.

See, when I left the Children's Museum that day, my inner monologue was going something like this:
You have NO idea what you are talking about! DON'T tell me you know best about how to feed my child! And DON'T pretend to understand how important it is that Emma learn to wear her hearing aids in a noisy place! I'm guessing you have NO CLUE what it's like to raise a child who you know might NOT TALK!

etc etc

It reminds me of a conversation I had one time with a friend of mine. She was going through a Master's program to become a Speech and Language Pathologist when I was pregnant with Emma. She told me that an important part of an introductory class she took was a concept of "Unconditional Positive Regard."

Unconditional Positive Regard is the idea that you, as the therapist, must assume the best of the families you work with. They may be totally disheveled and late and have forgotten a crucial piece of equipment, but the professor emphasized that the therapists must unconditionally hold the family in high esteem.

Haven't I heard that somewhere else before?

Like, from a source that should, perhaps, hold even more authority in my life than a professor I've never met?

4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres.

(I Corinthians 13)

'Love one another'

But wait .... does that apply to ME, also? :) Like, I need to hold HER in positive regard as a fellow child of God?

Oh

hmmmm

The moral of the story?

I have NO IDEA where that woman was coming from, either. I have no clue what brought her to that conversation that day.

And, for that matter, I have NO CLUE what is going on in the lives of most people I see in public on a day-to-day basis. When I silently judge the stranger in Target whose three-year-old with a pacifier in his mouth stomps his foot and screams for candy because he knows that she'll give it to him if he yells loud enough, I NEED to remember that I have NO IDEA what her life looks like. Is her husband in Afghanistan? Second child in NICU? I don't know. And even if I did, I don't remember God putting me in a position to judge that person anyway. My assumptions are probably wrong, and judgement is not my job

Christ calls me to have a different attitude than what I had toward that woman when I left the Children's Museum.

I forgive her

Christ forgives me :)

My consolation prize

2011-10-23T15:30:00.002-05:00

I've been thinking a lot lately about prayer.

Actually, I've been thinking a lot lately about having the courage to pray a really big, specific prayer, knowing that the answer might be 'no.'

We learn from a young age not to ask for a pony or a motorcycle for our birthday because of how much it stinks to be disappointed when all you got was that lousy sweater.

"Gee, Dad, thanks ..."

I've been clinging lately to a passage in 2 Corinthians 12 about Paul's thorn in his flesh. We don't know what exactly Paul's struggle was, but Paul says that he pleaded with God three times to have the struggle taken away.

But he said to me, "My grace is sufficient for you, for my power is made perfect in your weakness." (v 9)

Paul prayed a faith-filled prayer, PLEADING with God that his thorn be removed. And God said 'NO.'

And what Paul got instead was grace, strength, and God's power at work within him.

But am I the only one who has a little voice in the depth of my heart tempting me to say "Uh, gee, God, thanks ..." when I pray a big prayer and I get those things instead?

I mean, Paul heard all the stories of the people Jesus healed! The blind could see, the lame could walk, a dead girl was brought back to life!

All he's asking for is one less thorn!

[And all I'm asking for is a little less GI reflux in my girl!]

But his faith-filled response is "When I am weak, then I am strong."

So I'm challenged. I'm challenged to once again approach the throne of grace with confidence and present my requests to my heavenly Father. The One who flung the planets into orbit and hung all the stars in the sky bids me come and ask.

And if His answer is 'no' to my request, then I know that what I will get instead is His peace, grace, and strength.

And if I remember that God is good, all the time, and that He loves me and that HE LOVES EMMA more than I can imagine ...

then I can accept that those things are a pretty sweet consolation prize.

Good Times

2011-10-19T15:31:00.004-05:00

The kids and I went to the Children's Museum this morning and had a really great time!

Emma really got into playing at the water tables. I kind of almost cried, it was so normal :) She stood there playing just like all the other kids her ... umm ... height. And I was so enthralled by her exploration that I'd like to take this opportunity to publicly apologize for being "that mom" who completely ignores her oldest child while he shares nicely at the water boat station while trying to video her youngest child doing clearly amazing things.

I'm sure the novelty of this will wear off very soon, but I'm so excited! After 3 years, I am FINALLY the mother of two young children who are walking in opposite directions in public!!

I'm so proud!!!!!!!!!!!!!!!

And lastly, a riddle: What do good Daddy's do when they have to work late in October in Minnesota but their son still wants to play football in the backyard?

Drag out an extension cord and as many trouble lights as they can find and play in the dark! Pretty sweet, huh?

Letting out some of the crazy

2011-10-16T21:44:00.002-05:00

Life has been a bit crazy around here lately. We've discovered that Emma has some un-resolved reflux issues and we're starting to walk down the road of "Plan A, Plan B, Plan C, and then major surgery" ... it's stressful, and I don't really want to go into all the medical details right now because I'm not sure I understand all the possibilities myself.

But the bottom line right now is that we've been suspecting for awhile that Emma has some "discomfort" that isn't being addressed, and last week we took a trip to radiology that confirmed it.

So ... if you are a parent, you probably remember (or possibly you've blocked out the memories!) those early days when you brought your first child home. Those first few weeks certainly bring moments of joy, but do you remember the terror? The panic? The sleep deprivation that led to insane, illogical worry? I'm quite certain I am not the only new mom who ran, panicked, down to my son's room to see if he was still breathing the first time he slept for more than a 5 hour stretch! And I'll never forget the first time he got a good enough 'bonk' that he did that cry-and-then-run-out-of-air-and-not-inhale-for-long-enough-to-go-pale-and-mommy-panics-until-you-scream-again cry. (Please tell me you know what I'm talking about because that took a long time to type :))

But when you bring home a 'typical' newborn, eventually you realize that everything will probably be okay. You start to understand that a mild fever probably just means he's teething and even if he pukes his guts out, you will probably not even need to call a doctor. For a 'typical' child, you start to understand the power of a Mommy Snuggle and you soon get your sea legs about what does and does not constitute an emergency.

Well, I think for a lot of us parents who have kids with complex medical stuff going on, that initial period of mental instability never really leaves. There are seasons when I feel like Emma's health can turn on a dime ... and I don't mean that she might get the sniffles. So that 'season' of knowing that a full night's sleep is not guaranteed? I'm going on Year 3.

So I'm going to share a glimpse of the piping hot bowl of crazy bubbling just below the surface. It's okay, you can laugh. Letting some of the crazy out makes me feel better ... like a pressure release valve or something.

Emma is showing us in several ways that something is bothering her at night. And now that I know that her reflux is not as addressed as we thought it was, every move she makes at night reminds me that she may or may not be in pain.

So a couple of nights ago, I was having trouble quieting my mind before bed. So I had a beer (gasp!). That combined with the chili I had for lunch led to some indigestion. Nothing major, I wasn't sick, I just woke up at about 2 AM needing a Tums.

So I went into the bathroom to find some antacid and I started to cry.

I couldn't bring myself to take the Tums

Emma couldn't just take a Tums.

So why should I get to just take a Tums and go back to bed while my daughter suffers?

Instead, I felt the correct thing to do was to sit up in bed and literally feel Emma's pain.

Logical, I know.

And then, ladies, remember what happens the day after you've been up Mommy-worrying for no reason? If you're anything like me, you not only didn't get a good night's sleep, you are enraged that your husband had the audacity to sleep through what was clearly a crisis that needed attending to (like running to a child's room to check if he's still breathing when he's obviously fine).

So, while I was toughing it out without a Tums in solidarity for my sleeping Bear, my husband was snoring. Jerk.

I was the epitome of a loving and respectful wife the next day.

And I was a pillar of emotional stability the following day (which, by the way, was my grandmother's funeral ... my poor husband didn't stand a chance).

My husband is a very wise man.

And therefore, yesterday, he enforced a strict nap-time policy. For me. I slept for 5 hours.

I'm feeling much better now and ready to face whatever the week may bring on all fronts.

But if you feel so led, please pray for Emma's health? I was reminded this morning by a very wise pastor that my God is way bigger than my storm, but I'm sure 2 AM will bring all sorts of new SUPER LOGICAL reasons why worrying is CLEARLY the best thing for me to do.

So maybe some prayers for me, too? :)

Peace. Be Still.

Take a Tums and go back to sleep.

A day in the life of the Bear

2011-10-06T15:40:00.004-05:00

My mommy and daddy had to wake me up really early this morning for a swallow study downtown. My mommy told me that she knew I wouldn't like it but that I had to do some eating for some people to take some pictures.

I was mostly good. I knew I had to open my mouth for food for Mommy, but I didn't like the white stuff they put it in, so I had to spit it all back out. The mean therapist even put a syringe in my mouth to get food back far enough so I'd swallow, but I showed them! My tongue is a lot stronger these days (I've been working hard!) and I was able to even get that food out to spit it out.

The therapist said if I was strong enough to do that, I was strong enough to keep myself safe while I ate. I passed!

My teachers at school were so proud of me! They said I get to eat there now, too!

I had a very busy day at school. I have jobs to do. First we sit in a circle and take turns standing up from our chairs and putting our pictures up on the school chart. I picked out my picture from the board with everyone's picture on it all by myself today and moved it to the chart. I didn't need any help at all!

Then I had to make sure the tractor worked. It has a button that I push that says "GO!" when I want it to go. I drove that for awhile.

Then I had a picture to paint. I stood by myself (with my hand supporting me) at an easel and painted with red paint for about 10 minutes. I needed to change clothes after that. I also needed to wash my hands so I held my hands very nicely under the water for my teacher to help me wash them. This is one of those things that my teacher knows how to do but my mommy doesn't. So I wash my hands while I'm at school, Mommy had to wipe them off with wipes at home. Maybe someday Mommy will learn how to do it right!

After that, Ms C the audiologist needed me to play a hearing game with her. I looked in the direction of the toy that made the noise. My teacher told my mommy that I did a really great job finding the right toy. I've gotten so big.

Then we went back to the room for snack time and my speech teacher got to work on feeding with me and then before I knew it, it was time to go home! I didn't really want to leave, I was having such a great time, so even though they kept trying to get me to walk toward the door, I had to keep walking backwards to stay in the room. My PT told my mommy that this was something called a "Developmental Milestone" ... I'm not sure what that means, I just wanted to stay and play!

I walked out to the car with my teacher holding on to the pretty bracelet they give me to hold while I'm at school. I wanted to show my mommy the bracelet, so I walked without anyone holding on to it for 5 or 6 steps before I realized my mistake! See, Mommy can't know I can walk without help. I like holding her hand, so I'm doing my best to never walk while she's around so she'll keep helping me when I'm at home. It's my little secret, so hopefully I didn't blow my cover today by the car. My mommy talked to my teacher for awhile, so I took a couple more steps on the sidewalk with my PT while Mommy wasn't looking. I'll make sure to not do any walking at home tonight and I'm sure Mommy will forget about my mistake. And even if she wants me to walk without her, I can just look at her sweetly and say, "MAMAMAMA" and she'll give in.

She loves me that way.

And she says I'm lucky I'm cute.

But mostly she just loves me :)

The letter C

2011-10-03T14:10:00.003-05:00

Charlie's preschool has a "letter bucket." Each week there is a letter of the week and one child is selected each week to bring the bucket home and fill it with things that start with that letter.

This week, the letter is C and Charlie got to bring the bucket home over the weekend to fill with things that start with C.

We filled it with a Car (a toy Corvette, to be specific), a Can, pictures of Cousins, and his Cat in the Hat book.

Then, this morning, he said to me, "Mom, Emma has CdLS! Can I bring her in?"

Um, wow. Okay, buddy!

We asked his teachers, whose eyes filled with tears, if Charlie could tell his friends about Emma's CdLS during his letter bucket presentation. They said yes. Emma was pretty sure she was queen of the world that she got to be in Charlie's class today.

I had asked him on the drive to preschool what he was going to tell his friends about CdLS. He said that it means that she "eats with a tube and had an owie on her tummy when she was born and uses sign language instead of talking and is very little and my cute little sweetie worm."

Okay, then.

So I brought Emma for his presentation. She pretty much giggled the whole time.

So here's how it went:

"This is my car and this is a can and this is my cousin Sophie and this is my cousin Ruby and this is Emma, she has CdLS, and that means she eats with a tube and had an owie on her tummy when she was born and uses sign language instead of talking and is very little and my cute little sweetie worm and this is my Cat in the Hat book."

No big deal, Mom!

After letter time, several of the kids wanted to play with Emma. One little girl asked about her button, so Charlie pulled up Emma's shirt and showed it to her and explained how it worked and then Emma chased another little girl around who had flashing lights in her shoes and everyone laughed. And then they went and did an art project. Whatever. Totally normal, everyday occurrence, right?

I love how normal this all is to him! These children seriously melt my heart everyday and I am so blessed that God picked me to be their Mommy.

Knowing ahead of time

2011-10-02T21:08:00.004-05:00

Around this time of year, I start to get a wide range of emotions about Emma's birthday. Today I was thinking a lot about the second half of my pregnancy with Emma.

We were lucky. We knew ahead of time that we were not going to be traveling a typical road with this baby. I'm not going to say we were "prepared," because NOTHING could have prepared us for the incredible journey we've been on for the past three years. But I'm really glad to be able to say that we knew SOMETHING was going to be different.

I have several friends right now who are pregnant with not-their-first child and several people have commented to me that they've noticed a change in standard prenatal care between this pregnancy and their others. I've been told that recently most insurance companies and therefore most OB practices have started including more genetic testing in their standard of care. Apparently, pregnant women now have the ability to have a much earlier ultrasound and meet with a genetic counselor early in their pregnancy to discuss that panic-inducing term ... risk.

Now, let me be very clear about this: If the Lord chooses to bless us with a third child, you better believe I'm going to jump at the chance to see that little baby in an ultrasound earlier than at 20 weeks! And, knowing that our minds are already made up and that there would be no "decision to be made" if tests did reveal something abnormal, I think it's great that we have the opportunity to know ahead of time if there are preparations to be made beyond just painting the baby's room.

But something about this trend in prenatal care makes me sad.

In 2008, a study was released from Denmark about the impact of a national pre-natal screening strategy for Down's Syndrome. Further studies have also been released, and what they've found is that after offering screening for Down's Syndrome to every pregnant woman in Denmark, the number of babies born with this syndrome has been cut in half every year. One article predicted that soon very few babies will be born with Down's Syndrome in Denmark.

Pause for a moment. If, in 2008, the number of babies born with Down's Syndrome decreased by 50%, what happened to the other 50%?

They weren't born.

(Don't panic. I don't write political blog posts, remember? Just my perspective and my emotions from my journey)

Now, I get it. Emma, from an insurance company's prespective, is expensive. Her life is, and will continue to be, WAY more expensive than covering pre-natal screening for genetic differences.

And the fact is that insurance companies can be quite certain that the more they can help parents know ahead of time (and early enough to "do something about it") that something is different with their child, the fewer "expensive children" will be born.

And that just makes me very very sad.

Humilty and alone-ness

2011-09-28T13:58:00.005-05:00

I got caught lying today.

It was 10:15 this morning and Emma and I and some other customers were standing outside a store that should have opened at 10:00. An employee without a key was there making some phone calls and we had hope the store would be opening soon, so we stood around waiting for a bit.

Emma was holding my hand and walking around and making friends, as she tends to do.

A man in his 50s and a woman in her 70s were (separately) doing what I call "the question dance"

"Oh, she's so cute!" (subtext: declaring one's own kind intentions)

"How old is she?"

"Oh, she's a peanut! When did she start walking?"

"Does she talk?"

Given the situation, I was feeling just fine about answering questions, particularly since we weren't going anywhere anytime soon, so I decided to end the awkward "circling around the issue" by just coming out and saying that Emma has Cornelia de Lange Syndrome.

The older woman had been asking more questions than the man, so when she asked, "What's that?" I decided to go with my shortest and most easily accessible answer:

"Oh, it's just like Down Syndrome."

She, like many women her demographic, responded with a not-unkind tsk and sigh and told me that Emma was adorable.

Now, for some reason when I find myself at this point of this all-too-familiar conversation, I find myself needing to ... I don't know ... comfort people. Like, I need to make sure to end the conversation on a happy note or something to make them feel better about the encounter so that I will be a good ambassador to the special needs community ... or something.

So I told her about how Emma really is doing great, much better than the doctors predicted, and about how we weren't sure she'd even survive and, well, now look at her! I usually say something about how she's my "little miracle" or "gift from God" ... you know, some attempt to let them know that it really is OKAY.

The gentleman had been quiet for a bit, and then asked me how her communication skills are. I answered, and then he confessed to having a higher level degree in child development and working for many years with kiddos with autism and autistic tendencies. So he knew what Cornelia de Lange Syndrome is.

I said with a smile, "Oh, so you see the fallacy in my description."

He smiled. Aside from the fact that both are congenital syndromes with developmental delays associated with them, CdLS is not "just like Down Syndrome." That's an over-simplification I use when I don't think the person I'm talking to is going to be able to relate if I go into any more detail than that.

The woman asked what I meant and I told her that CdLS is hard to sum up in one sentence.

I chatted with the man a bit about Emma's specific skills and he agreed that she was doing very well, and Emma ended up playing with the woman's jewelry a bit so all was well there, but I left feeling like I had been guilty of something.

I think I feel like maybe I'm guilty of a weird form of arrogance.

I could just say that I'm used to assuming no one knows what CdLS is because there are medical professionals that I have to explain it to, for crying out loud. And that could kind of get me off the hook for the possibly disrespectful over-simplification I used.

But I kind of feel like I'm supposed to ponder something deeper than that. I think I need to remember that there's a danger to getting used to being the only person in the room with certain, specialized information.

Yes, I have a hard-earned PhD in "Emma-ology." I (and my husband) know more about that child than anyone in really simultaneously empowering and isolating way.

It's empowering to know more than the nurses in the ER and to be able to explain medical information to them.

But it's lonely to not really be able to sum up the answer to the question "How are you?" to a socially-appropriate length sometimes. It feels isolating to know that sometimes well-meaning people just will NOT understand without a lengthy explanation and sometimes a lengthy explanation is not what they want and sometimes it's not what I want to give.

But that doesn't mean that I'm allowed to have "I know more than you know" type of PRIDE.

It doesn't mean that I'm allowed to talk to people as if my certain, unique, specialized struggle is somehow above their ability to relate to.

God has been convicting me lately about the rare form of pride that comes with struggles and I was reminded about it again this morning.

I imagine that it's like a person who's spouse is dying of cancer having trouble being sympathetic with me if I complain if Charlie has strep throat

Or a person who's house was robbed and has lost everything having trouble being patient with me if I'm pulling my hair out because I've lost my car keys.

We all have struggles.

We all have knowledge that others don't have.

We all have a path that God has given us to walk, and He has given us each a story to tell for His glory.

Do you know what I mean? Do you get so caught up in your own story that you forget to listen to others?

Or are you a better listener than I am but therefore you forget to tell your own story?

Here's what I'm praying today: I'm praying that even while I feel called to tell the story God has given me, I'm praying that He will not only give me the right words to say, but also the right ears to hear other stories.

Because He's WAY too big for just one person's story.

SPLASH!

2011-09-22T16:19:00.003-05:00

I was being a good mom and took my kids to the zoo this morning.

We almost had the place to ourselves, so Charlie was running around Discovery Bay and Emma and I were walking at an Emma-pace behind him.

Charlie leaned over in the shallow anenome-petting pool and wanted to show me a star fish.

He fell in. Like, totally soaked from head to toe.

A compassionate zoo volunteer got him a towel (which they had on-hand, so I'm assuming he is not the first child to do this). She helped get his sweatshirt to a place where they could dry it and I got Charlie to a place where he could wash his hands.

She looked at me after a bit and said, "You must have a couple of older kids, too, in school now or something?"

"No. Why?" I asked.

"Well, because by now most moms are freaking out a bit more ..."

I just smiled and thanked her, not really sure how to tell her that once you've seen your baby's MicKey button on the floor, a plunge in a zoo exhibit is nothin' :)

That question wasn't covered in the Mommy handbook

2011-09-21T15:38:00.004-05:00

Emma has "discovered" her feeding-tube button.

You know how most kids "discover" their toes? She will occasionally stop what she's doing, lift up her shirt to make sure it's still there, and then smooth her shirt back down ... so no one can steal it, maybe? I'm not sure.

It's pretty cute.

She's also quite concerned at the rest of her families' LACK of a button. She will come up to us and lift up our shirts, looking for our feeding tubes.

Charlie finds this particularly hilarious and actually kind of encourages Emma to look for his button. He finds that this is most easy to do when he's wearing a bright-colored shirt, like his Transformers shirt.

So yesterday, they were playing in the living room and I hear him laugh because she's searching for his button.

"Ha ha! Emma, I don't have a button, YOU have a button! I don't have CdLS! YOU have CdLS, you silly girl!"

(now, I know that may sound weird, but please keep in mind that he doesn't understand that CdLS might not be an enviable condition. He has brown eyes, she has green eyes. He eats, she has a tube. This is not something that he holds over her. He doesn't understand that some in the world are going to someday assign more value to him as a human being than her simply because he can do things she can't. Please see this through a child's eye. He doesn't see something to be pitied or fixed or explained away. This is his sister's condition, and it's something that not only makes her different from him, it makes her special. Not "special," but said in a happy voice special. To him, this is as innocently funny as a little boy looking for a little girl's ... um ... well, you get the idea ...)

And then he said to me, "Mom, I think she looks for my button more when I'm wearing my Transformers shirt because maybe she thinks the TRANSFORMERS have CdLS!"

I'm fairly certain that laughter was really my only option at that point, right? :)

Oh, the conversations you never thought you'd have ...

An interview worth watching

2011-09-16T22:13:00.002-05:00

It's okay with me if you want to disagree with this pastor on some issues :)

But I'm sharing this link hoping that the truths spoken in this discussion will bless someone

http://www.desiringgod.org/resource-library/interviews/john-piper-interviews-john-knight-part-1

Have a wonderful weekend!

Charlie's turn

2011-09-12T21:28:00.003-05:00

This boy. He is so sweet. And we had a pretty good summer
Feeding his little cousin

Building forts in the living room

Building creations

Writing in the sand

And today, he went back to school.

He was so cute, he was actually a little nervous, but tried his best not to admit it.

We really love the preschool where he goes. He learns so much and has such a great time with his friends

And this afternoon, he was beat :)

First day

2011-09-08T14:41:00.003-05:00

Yesterday was Emma's first day of school for the year. We really love her preschool program - she did so well with it last year.

At first she wasn't sure she wanted to stay and play. She's thinking she'll just hang with "Mama" in this picture (which is what she's signing)

But then she remembered that she'd done this last year and that this really is a good place to be.

Checkin out the "school bus"

(check out my super-fashionable boot! hopefully when i go in next week the doc will tell me that things are starting to look better...)

Emma eventually got to walking around like she owned the place, like the amazing little diva she is :)

She's off! She's ready! She's going to take the world by storm :)

not funny

2011-08-26T14:21:00.002-05:00

We have a large, heavy wooden desk upstairs where our computer and "important papers" are stored (or piled, whichever).

Today I was shuffling through this well-organized pile of papers and something important fell behind the desk, towards the wall.

I reached my hand back there, barely able to wedge my oh-so-slender arm between the desk and the wall. I could almost reach the paper. I leaned. I stretched. I pushed with my feet.

I moved the desk one crucial centimeter closer to the wall.

For a good solid 3 minutes, which is a long time when contemplating who you are going to have to call and explain this to, I was pinned to the wall.

Yes, I got out. No, it wasn't pretty. Yes, I got the paper, but I think I left some skin behind on the back side of the desk.

But it was most certainly NOT funny

WHINE!

2011-08-23T21:08:00.002-05:00

no spiritual or emotional depth here, just WHINES!! I'm just venting, we really are just fine around here ... or at least we've survived worse :)

Emma is sick again. She was up all night last night either retching or, um, creating laundry for us to do.

And I'm under-the-weather as well, but I thought mine was just a cough ... until Emma's doc suggested I check to see if I have a fever.

Turns out there's this lovely strain of adenovirus going around where you get sort of a cold and flu two-for-one deal! Adults start with a cough and sore throat and then kids suddenly start in with the exploding diapers followed by about a week of cold symptoms. So Emma and I are sick.

Charlie seems to be doing ok, but he's a little DONE with appointments.

I was done with appointments today, too, though.

My foot has been hurting for awhile (I know, really really dumb problem to have) and I've been ignoring it for awhile. But I couldn't ignore it any more so I went in today. The doc poked my foot and I howled in pain ... Charlie thought I was being silly and laughed ... doc ordered an X-ray ... X-ray tech was totally NOT compassionate in telling me that the kids couldn't go in the X-ray room with me and she "didn't exactly have a babysitter around here for them" so I left them right outside the door with another patient who had kind eyes and told me she, too, was a mom.

Long story short, I've earned myself a very fashionable BOOT to wear on my foot for awhile. I have NO idea how I would have gotten a stress fracture, but I'm guessing the cause is less than 4 feet tall.

And if I never hear the words "stool sample" again, it'll be too soon.

So how are you?

Love these kids

2011-08-19T14:58:00.001-05:00

bad theology

2011-08-16T15:21:00.006-05:00

Life is full of mountains and valleys. And right now, things are going well, so I feel as though I'm on the top of a mountain.

But I find that, while I'm in a valley, there's no time to reflect. I'm certain that there's something to be learned from times of darkness or sadness or stress, but I often find that those are the exact times when my heart isn't absorbent enough to take the lesson in.

So I'm sitting down today to reflect on something that happened a few weeks ago.

Emma had been bloody-diaper-sick but was finally deemed well enough to have ear surgery, my extended family was all working very hard to move my grandmother into assisted living, and the skylights in our bedroom had leaked so our bedroom needed to be completely empty to "re-popcorn" the ceiling and therefore Josh and I were sleeping on our futon.

I had just dropped Charlie off at Nana's for the day and was driving up to Children's for Emma's ear surgery.

I listened to a Christian radio station on the way and one of those i-know-this-world-is-hard-but-just-hang-on-Jesus-is-coming-back-soon-to-take-you-away-from-this-awful-place-songs came on. I don't like those songs. I don't like the implication that nothing here matters and we're just here for a sadistic sorting experiment to see which souls are worthy to go to heaven, where the real party is. I don't like the escapism it encourages. I don't like the image it paints of Christians that we are so heavenly minded that we are of no earthly good.

I think we are here for so much more. If my theology is going to be reflected in music, it's much closer to a CD I often listen to on which Track 6 is called "Where are You now?" and Track 7 is "The prayer of St Francis". Track 6 has lyrics about children in poverty and people suffering in injustice and the chorus reflects the Psalms as it cries "where are you now? where have you gone? come quickly, it's been too long." And then Track 7 replies "Lord, make ME an instrument of your peace. Where there is hatred, let ME sow love ..." Implying that WE, dependent on the Spirit of God at work within us, are to be used to answer those prayers of despair.

However, on that day, I was not focused on theology.

I was tired. I was sad. I was going to lay my daughter down on yet another cold metal table and hold her until she fell asleep and then walk out of the room. I have done it so many times, but many of you know that it doesn't get any easier, regardless of how minor the procedure is.

So when the singer on the radio belted out lyrics about leaving the weight of the world behind us, I burst into tears. Sobbing as I drove up the highway, I started screaming at God "Come now! Please! I'm done! I can't do it anymore, please just come now!"

God can handle my bad theology.

And more than that, He can calm my spirit.

So now that I'm out of the valley, I'm back to hearing the hallelujah-I'm-getting-out-of-here-soon-songs and wondering what their place is. I read Scripture and find Isa 58:6 where God tells us:

Is not this the kind of fasting I have chosen:
to loose the chains of injustice
and untie the cords of the yoke,
to set the oppressed free
and break every yoke? Is it not to share your food with the hungry
...and to provide the poor wanderer with shelter—
when you see the naked, to clothe them,
and not to turn away from your own flesh and blood?

and I think about the beautiful picture that this paints of our God who calls us not to empty rituals but to serve Him by actually being a part of His redemptive work HERE. I love the image of us, the Church, as the Body of Christ, each doing our own part with our own gifts to help mend God's broken world. The plea of "Where are You?" should be answered with one look at the church, the city on a hill, and the light that is within each of us.

So is it wrong to ache for more than this world and this life?

In the last two verses of the Bible, Christ says, "Yes, I am coming soon," to which John replies, "Amen. Come quickly, Lord Jesus." Paul says it other places, too: "Come, oh Lord!" So I'm certain that it's not sinful.

But where is the balance between work to be done here and ache for the final Work to be done where Christ will at last put all right?

I have been pondering this question this week, and I think the thread that ties the two together is HOPE.

I have hope that He can do immeasurably more than we ask or imagine with His power at work within us, but I also have hope for a new heaven and a new earth and a world without end.

I have hope that this world can be better than it is through the work of the Spirit through His people, but I also need not worry that we aren't going to do a good enough job, (because let's face it, we're not) because I have hope that He will be returning to complete what He started.

So it's not wrong for me to cry out and look forward to that glorious day.

But that cry should not be without hope, and it should not be a cry of one abandoned.

Which gets me back to that day on the highway.

I realized something after Emma's surgery was over. I realized that, for lots of silly reasons (mostly prideful ones), we hadn't told a lot of people that she was even having surgery. Usually there are blog posts and Facebook statuses and prayer requests, and during past procedures the Body of Christ (both in our church and in our family) has come around us and lifted us up and supported us. This time, we told a few people who offered meals and prayers, but we didn't tap into the support we have like we have in the past. I don't really want to go into how that happened or why, but I'm realizing it was wrong.

Because if I'm feeling like I want to cry "Where are you now? Where have you gone? Come quickly, it's been too long" then maybe I need to remember to allow His Spirit-filled church an opportunity to be an Instrument of Peace for me. God has blessed us so much by surrounding us with an amazing cloud of witnesses who are REALLY good at loving us and supporting us and helping us when we need it ... if I can swallow my pride enough to admit when I need it

Wanna see something?

2011-08-15T21:48:00.002-05:00

Guess what she's doing?!?!?!?!?!?!

Ok, now you want to see a video, don't you? :)

Ok, you can see it, but first you need to promise something:

1) You won't judge me ... what on earth am I wearing?!

2) You won't judge the cameraman - he's four and very proud of his sister

3) You won't judge our driveway - see the aforementioned disclaimer regarding our cameraman

Everyone promise?

Alright, then.

Check out our BIG girl!!!

All joking aside, I'm so proud of her! We went on vacation last week and she sort of decided that walking was truly the best way to get around!

Now, she's not brave enough to do it by herself yet, but all she needs from me is one finger. And I say she needs that from me because she's so enamored by this new method of transportation that she's very whiny unless she's being walked. And no, a push-toy will not suffice. I think she likes seeing wide-open spaces in front of her and therefore refuses to even grab on to anything that would help her keep her balance. My lower back is killing me. :)

That's ok, though. I'm super proud of my baby girl!!

Unplugging to recharge

2011-08-03T13:41:00.003-05:00

I'm taking an "e-break" :)

I'll be back posting again in a couple of weeks - see you then!

Both she and I

2011-07-25T15:53:00.003-05:00

are very lucky to have him.

"Mechanic work" needed to be done on his bicycle. And she wanted to help.

She pointed to the wheel and he said, "Wheel, Emma! It turns and makes the bike go!"

She pointed to the pedal and he said, "Pedal, Emma! You put your feet on it and make the wheels turn."

"Someday you'll ride a bike like this, too, Emma!"

She moved the pedal and it moved the chain. She grabbed the chain and her hand got dirty. She held up her hand and he wiped it off for her.

And when she was interested in his face, he even showed her his tongue.

Are these moments common between brothers and sisters? Or are they miraculous? Or both?

We're still here

2011-07-15T14:24:00.003-05:00

What a month!

Just as we were finally feeling like our little girl was back to her happy, healthy self, an ear surgery that was scheduled weeks ago kind of snuck up on us. She did great with the procedure on Wednesday; her ENT said that this was the easiest time he had ever had working with her ears. Recovery has been a little bumpy, though. Her gut isn't bouncing back as quickly as we'd like, but I suppose with all she's been through, that's to be expected.

But between Emma's health and some construction work that is being done on our bedroom ... resulting in us crashing on our own futon for the week and sharing a bathroom with our kids ... and helping with moving my grandmother into assisted living ... we're a little stretched past our limit around here.

And I really hate everything that comes with that. What I hate most is that we probably get very emotionally near-sighted. Stress does that to all of us, I think. I think it's very easy to not see opportunities to "act justly, love mercy, and walk humbly" when life gets overwhelming.

But at the same time, I do think that maybe God ... I don't know .. factors that in? I don't think that any of our stresses take God by surprise, and so if I need to take a minute ... or a day ... or a week ... to just bury my head in the sand and focus only on the "kingdom work" that God has for me within my own four walls ... maybe that's a season that He has planned? And maybe I need to be ok with that?

I'm not good at being carried. You know the old "Footprints" poem, where God says that he would never forsake us during our trials ... "It was then that I carried you." Pride makes that uncomfortable. So does the lie that we can handle this life on our own.

So I'm in a season right now ... it's hard, but God provides just the right amount of peace and light and love for the step we're on. Josh and I have always joked that we take turns falling apart in times like this and that God put us together for a reason because we never lose it at the same time. I fell apart on Wednesday, Josh fell apart yesterday, and once we get the pieces back together ... well, we'll be back

But right now, we're just here ... doing our best ... and trying our hardest to allow ourselves to be carried by Him.

Charlie's bedtime prayer

2011-06-28T21:36:00.003-05:00

Dear Jesus,

Thank you that I got two Daddy days in a row! Thank you for Mommy reading a book with me. And thank you for Emma, my sweetie-worm.

Jesus, please help Emma's tummy feel better. Help the germs in her tummy just be all gone right away at the tippy-top of the morning tomorrow morning so we can have a happy Emma Bear again tomorrow.

Good night, Jesus!
Amen

And suddenly I remember once again that I am BLESSED

Emma is still not recovering well. She's probably no longer infected with the icky bug she had last week, but her GI is very much still not back to normal and she's just so weak and tired and snuggly all the time. I mean, as usual, I'll take the snuggles, but I really hate that she's not feeling well.

She did manage to give me a Bear smile this evening, though ...

I am so thankful that I get to be Charlie's and Emma's mom

Sick Bear

2011-06-23T13:17:00.003-05:00

Emma has that horrible stomach bug again.

Do you ever feel like you're working really really hard just to tread water?

She's been doing really well lately, so I guess we're due :)

But if you could pray for quick recovery for the Bear, we'd really appreciate it!

Warning: Proud and Bragging Parent Alert!

2011-06-13T21:23:00.004-05:00

Emma can get up on couches by herself now ... yikes!

What I'm really excited about, though, is that she can also get OFF of the couch by herself :)

Love that girl!

And this boy ... I tell ya ... my son just blows me away!

This morning, Charlie announced, "Mommy, I think that maybe I'm old enough now to have the training wheels off my bike."

Apparently he knew what he was talking about. We took him to a nearby park where some un-used ice hockey rinks seemed like the perfect place to teach him to ride a bike. We figured it would be a pain-staking process. At least, I remember yelling "don't let go!" a lot when I was the child on the bike.

But we walked the bike up to the ice rink, Charlie got on, and Daddy said, "Are you ready?" Charlie said he was, so Daddy gave him a push. He was off.

"I'm proud of myself!" :)

Go, Charlie, go!

Letting your heart walk around outside of your body

2011-06-10T15:35:00.002-05:00

Our street is one of those wonderful streets where kids are always playing. When you turn around the bend, you often hear a boy yell, "Car!" and see kids scurry to move hockey goals or home plate out of the way.

Charlie hasn't been old enough to join in until this year. Well, really until yesterday :)

He's been staring longingly out the window ever since the snow melted. I haven't ever told him he CAN'T go play, but he's never asked. Yesterday I could literally see his little boy heart working up the courage ...

I asked him if he wanted to go play with them and he thought for a long time and said yes. So we walked out and I approached the two boys who I knew to be older brothers of boys approximately Charlie's age. We asked if Charlie could play and they said yes.

See ya, Mom!!

Mom ... I'm not 'Mommy' anymore ... I'm Mom ...

The sport of the day was baseball, but with a tennis racket and a tennis ball. Charlie patiently waited his turn. I watched through the window from inside like a good Mom. He walked confidently up to home plate and the boy pitching walked compassionately closer to him. He hit the ball!!!

As he ran to first base with all his might, I may or may not have jumped up and down in the living room. Josh may or may not have had to chide me "Do NOT let the bigger boys see you doing that!"

He world is getting bigger and bigger. I'm having to hold on more and more loosely. He's doing more things without me.

It's the way it's supposed to be. I'm proud of him

But it hurts

Emma is doing great, too. She's taking more and more bites. She's happy. She'll walk someday. She loves me very much and she loves being with me.

I get longer with her. I won't lie, it's kind of nice.

But I'm allowed to say that that hurts, too.

I love my kids and I'm so proud of who they are. I guess I just never realized how gut-wrenchingly painful it is to be a mom.

Urgency

2011-05-25T22:40:00.005-05:00

Some friends of ours at church have family connections to Joplin, Missouri where there has recently been devastating damage from tornadoes.

These friends took up a collection this week of basic supplies to bring down to help those affected. You know, bottled water, clothing, diapers, that kind of thing.

I showed Charlie some of the 'before and after' pictures that were posted from the damage and told him that we were going to go to the store to buy some water to send down there.

"Why?"

I did my best to explain what a tornado was and the scope of the damage. I think the concept that finally landed was that "the grocery stores got broken" and people can't get food and water by just driving to the store and they need help.

He instantly ran to the car.

When we got to the store, he grabbed my hand and said we had to run into the store

"Quick! Before they get thirsty!"

My To-Do list

2011-05-23T13:42:00.002-05:00

I'm having one of those days where my "To Do" list looks like this:

Order Emma's monthly tubes supplies before noon when shipping orders go out

Drive to the Parks and Rec office to sign Charlie up for T-ball

Call and reschedule about 5 Emma appointments because the T-ball session I had planned to sign Charlie up for was full

Pack lunch for Charlie to eat at the table with Emma during her lunch-time feeding therapy

Call and bug surgery coordinator about Emma's upcoming ear surgery which still isn't scheduled

Communicate with the Darling Husband about whether or not we're having dinner together and, if so, get something in the crock pot

Find a minute to get down to the laundry room to move Emma's disgusting "exploded diaper" laundry from "soaking" status to actually, you know, clean it

And, sometime in between the drive-thru for a Diet Coke and being impatient with Charlie because my bladder was dangerously close to full capacity while walking into Emma's feeding appointment, I realized that I needed to add one more thing to the list, to be prioritized even above my own lunch:

Build a fort with my son in the living room

Check and check :)

Common little everyday miracles

2011-05-17T15:45:00.004-05:00

Emma played in a ball pit today at preschool and didn't cry about it

As a matter of fact, today was Emma's first day back at preschool and her teacher said she didn't cry at all!

Emma ate carrots today at feeding therapy and didn't even need a change of clothes when she was done!

Charlie got to feed Emma at therapy today. They both did GREAT!

Emma went for a lot of the morning without a drool bib. I really see her improving in a lot of areas with this therapy that she's doing.

And ... drumroll please ....

Emma played at a park today!

I remember being at a park once with Charlie when he was really too little for it. I helped him sort of walk around in the mulch, but he couldn't climb or slide without my help yet. I felt envious of the mothers sitting on the bench at the edge of the playground whose kids were old enough to just run and play together without supervision. For Emma, this phase of not being able to play at a playground has been very extended. It's been starting to sink in more lately that two and half years is a long time to have your "baby" on your hip while all the other kids play.

But today we went to a park for a picnic lunch and playdate in between preschool and feeding therapy. While we ate sitting down on the grass, I put Emma down to see what she would think of sitting on grass. Last summer it was too much of a sensory experience and she cried. But this summer she sat and smiled and played with grass!

Once we were done eating, the big kids went to play on the playground. I expected Emma would want to sit on my lap playing with a leaf while I chatted with the other mom.

But Emma sort of started to "butt scoot" her way toward the playground! So I pointed this out to Charlie. I said, "Now, buddy, if you want to just go play, you can, but Emma looks like she wants to play with you, so would you like to carry her over to the mulch?"

He said yes and picked her up and brought her over to where they were playing.

(as a side note, yes, i let charlie carry his sister if i'm right there watching. yes, he's only 4. but she is as strong as any 2-year-old i know and she's only 17 pounds, so they are quite a team. she hangs on and gets this little content smile. it's a good thing ... don't judge me:))

She LOVED it! She cruised around the play structure and sat and examined some mulch and scooted around and got DIRTY! :) It was wonderful!

And as you can see, she actually ventured pretty far away from Mommy.

I almost cried :)

CdLS Awareness Day

2011-05-14T14:54:00.003-05:00

The hair, the eyebrows, the sweet little face and tiny hands and feet ...

I have a beautiful daughter.

But to a trained eye, some of the things that I think make her beautiful also tell a tale.

Those traits told her doctor that she has CdLS.

I struggled for awhile, learning to love Emma's beautiful hair even though it meant that she would be different. But now I understand a different kind of love.

One of my CdLS Facebook friends said something really profound today; she said that having a special child without a diagnosis is like having a special gift that you just can't open.

I can't imagine the frustration of not knowing.

And that's part of what CdLS Awareness day is about. One publication I saw estimated that there about about 20,000 children in the US with Cornelia de Lange Syndrome but that many have not been diagnosed because of how rare this condition is. I can't tell you how many of Emma's specialists I educate because they have never heard of it!

So if you know a family searching for answers with a child who looks like Emma, maybe have them check out www.cdlsusa.org? We are so blessed by all the support we have found there!

(Picture copyrighted - Tamara Fladung Photography)

Reality check :)

2011-05-11T14:31:00.000-05:00

Emma is seriously being such a ROCK STAR in feeding therapy right now!

But to be fair to HER, I need to make sure I temper my expectations.

Okay, so think about how hard a baby has to work to either nurse or drink from a bottle. Think of all the muscles that are involved with getting nutrients that way. They have to know not to breathe when they have milk in their mouth; they have to coordinate all the sucking and swallowing and breathing LONG before they can even think about it. It comes naturally.

To most babies

Emma's feeding journey is a little different from many CdLS kids with feeding difficulties in that she was not allowed to even try to eat for the first several weeks of life. She had had major surgery on her stomach and a hole in the roof of her mouth.

And then fast-forward to last May when she had facial paralysis on her right side ... two months ago, her ENT speculated that the right side of her face might still be "tingly," feeling like your leg feels when the circulation is starting to come back after it has fallen asleep for awhile.

So her mouth and swallow muscles are woefully under-used. And yes, of course there is a behavioral and cognitive piece to her feeding difficulties, but even if we resolved those tomorrow, she still is nowhere near ready to use those muscles to take in all her nutrients.

She had a great feeding session today, eating like a rock star for about 30 minutes. She ate about half a jar of baby food ... you know, minus whatever ended up on her bib and chin and elbows :)

But that exhausts her. She will sleep very well this afternoon. :)

And half a jar of squash doesn't have enough calories to drop her tube feed by even half an ounce.

So while this is super exciting (for both me and Charlie, who got to feed his sister during therapy today and they both did great!), like I said, we still have a LONG way to go!

But she's cute, Charlie's sweet, and God's good, so I can be patient :)

Eating like a big girl!

2011-05-06T13:53:00.002-05:00

Emma has been tube-fed since birth. She was born with her stomach behind her left lung and with a cleft palate, so the deck has been stacked against her eating since day 1.

We've had seasons of good eating and seasons of TOTAL oral aversion, but right now we're in a really good place!

She just completed the first two very intense weeks of a protocol called Vital Stim. They use electricity on her neck to stimulate her swallow muscles. For Emma, this therapy has worked like magic! I really think the help with her swallows is "cue-ing" her to eat and helping her feel more safe to actually move the food to the back of her mouth and swallow.

So if I've ignored you lately, this is why :) Emma has had at least one appointment a day with this. Toward the end of last week, Charlie started to show signs of missing Mommy, but nothing a little TLC couldn't cure. (Remember this is the boy with the emotional maturity to just say, "Mommy, I miss you" before the wheels totally fall off the wagon? Man, I love that kid!)

I took this video last week, but I didn't want to post it for fear that this was just a 'honeymoon' in her therapy. Now, yesterday and today she was lunging for the spoon in between every bite, taking big mouthfuls of food at a time. It's been so great.

I'm so proud of my baby girl! We've got a long way to go on this one, still, but she's worked so hard and made such great progress, I am one happy mama!!

Happy Wednesday

2011-05-04T15:31:00.003-05:00

These shoes are made for walkin'! :)

Emma recently got some new foot and ankle supports. Some of you who see us often are thinking, "New? I didn't realize she had old ankle braces. I never saw her wear them!"

Well, yeah, you're right. She didn't wear her big old AFOs because she pretty much screamed any time they were on.

And I think the problem was that they restrained her ankle movement so much that she couldn't crawl or pull to stand or anything. I don't blame her for hating something that stops her from moving around!

So her new PT at school suggested something smaller that will give her support but still allow her foot to move the way it needs to for crawling and stuff. Emma LOVES them!

She seems much steadier on her feet when they are on, which is helping her be much more confident moving around. She still always has her hands on something for support, but she seems much stronger, cruising all over the place. I've caught her standing by herself for a split second at a time, too ... SO NOT READY for this little girl to walk!! :) AND I can't wait, all at the same time :)

And Charlie is just too silly not to share. I love these kids.

God bless you on this beautiful sun-shiny day! :)

So, how did it go?

2011-04-28T13:22:00.002-05:00

Emma had a procedure yesterday at Children's. It was a really horrible, awful day.

But I'll skip to the end and say that the urology tests that they were doing showed that nothing scary is going on, so that's good. It's one of those times where it's good news to know that they found nothing, but bad news because there is no reason for her symptoms ... but I'll take the good news :)

We got to children's knowing that there were several tests that her urologist had ordered and that she needed to be fasting because they were going to give her some happy-place-gas for one of them so they could place a catheter. We weren't really sure what all this would entail, but I'm REALLY glad we had the foresight to have both parents present.

The plan was that we were going to restrain Emma lying down on her back while they placed a catheter and also a suppository sensor to monitor bladder pressures and abdominal pressures. Then they'd fill her up and watch how she responds.

We told them up front that Emma would NOT like this plan. Even if the only thing we were going to do was hold her down on her back, she would scream ... but they said she had to be awake so that we could see how her bladder responds during waking times, because that's when we're seeing the symptoms.

So I held Emma's arms and Josh held her legs and the nurse anesthetist held the gas mask over her and the urology nurse began the procedure. Emma was loopy, but still moaning and whimpering and just very unhappy.

After awhile, Emma's sounds started to sound like she was gargling thick liquid. I calmly turned to the nurse and said, "I'm concerned about those sounds. Emma failed a swallow study not too long ago and I'm afraid she won't protect her airway, particularly if she's drugged and unhappy."

Not two seconds later, Emma started to sputter and gag and drop her O2 sats. I told them she needed to be up or on her tummy. The nurse switched the mask to O2, sat her up, called another nurse in to suction Emma's airways, and we got her calmed down.

But of course through all that, Emma managed to push both the catheter and the other sensor out ... and the other sensor came out with bloody poop from all the trauma down there ... so things were going well ...

We got things cleaned up and tried again, this time with Emma's head elevated. After both ... things ... were placed ... down there (YUK!!!!! I seriously just feel violated on her behalf!!!!!!) ... Emma actually started to get a little giggly and make some happy eye contact with me while I sang to her.

But then she sort of lolled her head to the side. At first I thought she had fallen asleep, and maybe she had, but then she started retching. Her whole abdomen just kept heaving and heaving over and over again, quicker than I have ever seen before.

Now, they had told us that nausea was a side-effect of this happy gas, so we had her decompression tube open through the whole thing, but when she started retching like this, I said, again, very calmly, "Ok, those are retches. Her tube is open, but her Nissen is a little on the loose side so it's possible she could bring up something from her stomach and have airway issues again."

Again, no sooner had I finished that explanation than Emma stopped breathing, her O2 sats went down, and this time her heart rate went WAY down! We stopped the gas, roller her over, got her on some O2 and rubbed her back until she figured it out.

Josh and I held it together. The catheter stayed in. The nurse said she'd really like to get the bladder totally full, so we kept going with the test for a couple more minutes. Then the nurse said that she had finished with the first trial and would like to go through it one more time to get two sets of data.

Josh said, "We're done."

I was SO glad he was there

The other two tests were equally as enjoyable for Emma but not nearly as eventful, thank God. And we absolutely felt the power of prayer buoying our spirits, because that was really really hard to watch.

Wordless Wednesday - girl time!

2011-04-13T14:41:00.002-05:00

Baseball widow

2011-04-09T19:54:00.005-05:00

Josh and Charlie love going to baseball games together. It's their thing. And Emma and I are VERY ok with letting that be THEIR thing! I mean, Emma has her hat and everything, so she represents her team ...

But I think this picture should be captioned, "Please mom, don't make me go!"

So Daddy and Charlie leave us to have a girls' night.

I'm always very silly about this and say something stupid before they leave like, "Seriously? You're going to make ME empty the dishwasher while YOU and Charlie look at baseball stats?? I'M going to be home all night while YOU get to go have fun!"

And then, once they leave, I realize exactly how ridiculous that was ... on so many levels.

(Note the public apology)

Emma and I always have a great time! One thing I LOVE about nights when it's just me and Emma: The following is a perfectly complete and acceptable dinner ...

Emma agreed.

Peanut butter for finger painting, apples for licking, crackers for crumbling ... this totally counts as following through with feeding therapy, right? :)

And then, after some play time, Emma lets me know in her own special way that it's bedtime. Does anyone else's child's bedtime "meltdown" look like this?

Seriously. When she's tired, she lets me know by collapsing into fits of hysterical laughter.

And once she's in bed, I have sole custody of the remote control.

Ahhhhh, the good life :)

Beautiful pictures of beautiful kids

2011-04-05T15:46:00.006-05:00

I've said it before and I'll say it again! I am SO blessed to have a dear friend who is gifted at photography and great with my Emma. It's not until you are in the middle of the special needs journey that you realize that, for some folks, taking your child to a department store for professional pictures is just NOT an option.

So even though she didn't ask me to, I'm gonna do another shameless plug - check her out here at Tamara Fladung Photography - I'd love the photography even if I didn't already love the beautiful woman behind the camera! :)

Socks

2011-03-31T14:23:00.004-05:00

Matthew 7:7-11 Which of you, if his son asks for bread, will give him a stone? If you know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him.

A very wise friend of mine said something yesterday that I was so encouraged by I just had to share ... I hope she doesn't mind :)

You know how, when we've gotten a really great gift for a child, WE can't wait for them to open it?

We just know they are going to LOVE it and we can't wait to see them play with it.

Sometimes I think God is like that.

He gives us all sorts of gifts in our lives.

And sometimes, even though we are thinking, "Umm, gee God, thanks for the socks..."

He's sitting up there thinking, "I just can't wait for them to get it!"

He can't wait for us to get far enough down the line to see the amazing gift He gave us in the form of

a rough spot in a marriage

a difficult battle in illness

a loss

a child with special needs

Because the good gifts of peace and blessing and love and comfort and wisdom and compassion and even joy that come with those gifts

Those come from above (James 1:17)

Faithfulness

2011-03-28T13:39:00.004-05:00

Life is pretty good around our house right now.

Emma has started tolerating her hearing aids a lot more, and she's also figured out that she gets a lot of attention from me when she says, "MAMAMAMAMAMA" ... although I'm still sure she has no idea what it means :)

Charlie is at a very fun age and we love him to peices.

Josh and I are enjoying good health and loving good family time.

But it's when life is good that I'm struck by the unfairness that there are those around me in pain, whether because of a sick child or a sick parent or whatever other vast relational pain we can cause one another in this broken world.

Just as one small example in my little corner of the world - I posted a video of Emma's new "talking" on Facebook the other day (yes yes, I'll post it, gimme a minute:)), and then I scrolled down to see what her other friends were up to and many of them were posting updates on extended hospital stays. Not that our little community doesn't love each other in good times and bad times, but it just seemed wrong to be on top of the roller coaster when I know someone else is at the bottom.

We sang Great is Thy Faithfulness at church last week and my eyes closed and my spirit just soared in praise of my awesome God who provides so many blessings ... but I opened my eyes and looked around at the people with struggles that I know of even in my little church family and remember how hard it is to sing that song sometimes when you are in the valleys ... I remember singing it when Emma was in NICU.

So I want to share a video with you. This is Selah's version of Great is Thy Faithfulness. Todd Smith is the lead singer, and his wife Angie has a blog I read called Bring the Rain. She started blogging a couple of years ago when she was pregnant and learned that the baby she was carrying would not survive after birth. She carried the child to term and they got to spend a few precious hours with her before she passed. This man knows Gods faithfulness ... he knows what it means to say that God is good ALL THE TIME.

I just feel like I want to encourage ... if life is good, then praise Him with the words Great is Thy Faithfulness ... but in whatever circumstance ... GREAT is His Faithfulness

Those things we do

2011-03-23T14:13:00.006-05:00

In between therapies and tears and stresses and worries, we really do have a very wonderful life!

The evidence follows:

We do art projects

We play the piano

(even if we have to stretch on our tip-toes to reach the keys)

We are super-heroes

(and for those familiar with the concept, yes, that is his "fuzzy corner" peaking up through the top of Daddy's head-lamp/action-hero-cape-holder)

We draw pictures of Daddy snuggling Emma

And Charlie holding a flower

We try to do our part to Feed Starving Children ...

And wear super-fashionable hairnets while doing so ...

(Feed My Starving Children is a charity we volunteer with that sends packaged dry meals to the world's hungriest of hungry kids. Each meal costs only 24 cents and the vast majority of their operation is volunteer-based. About once a month, we don our hairnets and package bags of "Chicken, Veggie, Soy, and Rice!" A couple of weeks ago, a larger church in the area hosted a "mobile pack," which meant that the whole operation was out of their church's gym. It also meant the age restriction for packing was a little looser :) Isn't Charlie's new cousin Sophie ADORABLE?!?!!?)

We take our responsibilities very seriously

We build "creations"

We visit the Children's Museum to build even bigger "creations"

We high-five dragons

And we just generally love each other a lot.

Sorry for the photo-dump, but this very snowy day seemed to be a great time to share with you some of the more "normal" things we do! :)

(Oh, and incidentally, we also make computer mistakes ... if you read this blog through Google Reader, you saw that I accidentally posted something a few days ago about lies I struggle with believing ... it was mostly about believing that I am in control when I'm really not ... but anyway, if you saw that post and wondered why it's not here, I just couldn't make it sound "undepressing" enough to be accurate, so I went to "Save as Draft" but clicked "Publish Post" instead. Sorry. I don't regret the post, just couldn't make it sound the way I wanted it to, so I attempted to ditch it ... and failed ... :) Just in case you were wondering ... and I'm sure you weren't ... but in case you were ...)

God bless!

Preschool

2011-03-15T14:38:00.002-05:00

About a week ago I went to observe the program that Emma will be going to for her preschool years. I was super-nervous about her going to a class designated for "Severely Multiply Impaired." I was afraid that when I went to observe I would be confronted with deep denial in myself about Emma's level of disability.

I anticipated my thought process would look something like this:
Emma doesn't belong here! These kids can't even crawl or communicate! MY Emma is more advanced than this!

(yes ... that's a confession ... I know those are not great thoughts, but it was the gut reaction I was afraid I was going to have when faced with those who have been designated Emma's "peers.")

But after observing the class, it was much worse than I had feared.

Kids were walking.

Kids were talking (one word at a time ...).

Kids sang along with the Slippery Fish song (poorly, but they were at least trying!).

Kids pressed buttons on communication devices to ask for "My turn" or even ... get this .. "bathroom!"

Kids went and sat in chairs when told to.

Emma doesn't belong here! She can't do these things!! So what you're telling me is that MY EMMA isn't even advanced enough for the SEVERELY multiply impaired kids?!?!?!?!

So I cried. A lot.

I called the teacher that afternoon to confess that I obviously have misled them about Emma's abilities and apologize for wasting their time (ok, not really, but that's what I felt like). Her teacher was super compassionate and reassured me that these kids couldn't do these things when they first got there, either.

The program focuses on communication and motor skills, all built around repeated routines that help kids be able to anticipate what to do next and build repeated success.

Emma's goals include being able to follow directions and being able to communicate wants/needs in a way that even a stranger can understand. They use picture communication and GoTalk devices and do a lot of "My turn" type asking.

So today was Emma's first day.

I'm not gonna say it went great by any stretch. Emma didn't really want to stay, but she didn't cry. After I left and dropped off Charlie, I did cry a little, but only because I realized that I hadn't even taken a first day of school picture!

When I got back to the center, I had an appointment with the nurse to teach her how to put a MicKey button back in if it comes out and then when I got back from there Emma was in the gym, which was totally overwhelming to her, and then I had to teach the nurse how to feed Emma for snack time, and then it was story time.

I ducked into the observation room for story time. Emma enjoys sitting and reading books, but on her terms, so I knew that this would be a good indication of how they would deal with my little diva.

I feel good about the tough love they showed her. She wanted to be done, but they insisted that she stay in her chair. She cried, but they held her hand and helped her pet the dog on the page of her book. They snuggled her when it was done and she forgave them.

I really do feel like this is going to be a good place for Emma, with high expectations and achievable goals, lots of care, lots of experience, and lots of hands to help her.

After that it was time to go, so while the other kids went with their paras to the buses, the PT for the class came and wanted to talk to me about Emma's AFO's, so I was still in "taking care of business" mode when I went to get Charlie from preschool.

I'm not sure it's all really sunken in yet ... I think tonight I'm going to have a glass of wine, a long bubble bath and a good cry.

Maybe on Thursday I'll be in a good place to take some SECOND day of school pictures :)

Short updates

2011-03-14T13:59:00.002-05:00

Emma had a rough night last night, but she's fine today. We are going into the doctor later, but if I had to guess, I would say that maybe she's allergic to sweet potatoes. REALLY??? Sweet potatoes??? We'll see

On a happy note, our friend N is home! Her family SO appreciates your prayers, recovery will be long, but it's going well.

And stay tuned to hear more about Emma's first day of preschool tomorrow!

I (heart) her

2011-03-09T15:09:00.002-06:00

Oh, the stories I could tell you about this young lady!

I could tell you about how much she loves Emma, that she walks up and signs "I love you" to her when we see them at church because she understands that Emma doesn't talk yet in a way that other kids can't relate to.

I could tell you about how she woke up from another surgery a few months ago singing the same Phil 4:6-7 song that she sang over the phone with her friends 2 weeks ago.

I could tell you about how nervous she's been for this heart surgery, but that she's been clinging to Is 26:3, reading it out loud to anyone who will listen ... You will keep in perfect peace ... those who trust in You ...

How she told her mom as they were anticipating this surgery that she wishes Jesus were still around today physically "because if He were then I could just touch his cloak and my heart would be healed."

How she wore a shirt that says "My heart belongs to Jesus" to her pre-op appointment at the heart clinic and their nurse winked at her and said, "My heart belongs to Jesus, too!"

But here's the burden ...

THESE STORIES AREN'T FOR FREE

You can't hear the heartwarming sound of a child praying for peace about an upcoming surgery without her parents paying for it with many sleepless nights, wondering if the reason she asked yesterday what Heaven is like is because ...

You don't get to see the blessing of a church rallying to pray for a child's surgery and the beauty of the Body of Christ supporting them without the child actually having to have her chest opened.

You don't get to hear about her faith unless her reason for clinging to verses about peace is the fact that she knows that she's going to be hooked up to a lot of machines today and the tape is going to pull at her skin and hair.

You don't get to have the tears brought to your eyes as you praise God for her younger brother and sister as THEY pray with THEIR friends without the burden of knowing that they are having to worry beyond their tender years as well.

You don't get the blessing of the silver linings without the storm clouds

And last night, for this family, the skies were pretty cloudy.

Please pray? Our little friend N is pretty darn uncomfortable right now. She's recovering as well as can be expected, surgery went off without a hitch, but she's in a lot of pain. Please pray the doctors can manage her pain so she and her parents can get some sleep? Please pray for strength and peace for the whole family?

Dear Jesus ...

Some very special people

2011-03-05T19:54:00.004-06:00

No, not Emma and her friends.

When we had our first appointment with Emma's Genetics doctor, I had both kids with me and the doctor, reading my worries, said that Charlie will be awesome BECAUSE of Emma.

I'm so proud of the fact that this is true.

Charlie has been putting his own laundry away for over a year now. He vacuums the kitchen, put his own cream cheese on his bagel, slices his own banana bread, clears his own dishes, he dusts, and more ... I'm not sure that sort of independence would have been my first choice, but I'm proud of it now!

Charlie knows how to pray. And not just, "now I lay me down to sleep, let us thank him for our food" pray. He knows how to PRAY. He prays for surgeries and appointments and days when Mommy is sad. When it's been part of his childhood to hear that "Mommy's job right now is to figure out where this blood is coming from and your job right now is to pray for Emma" ... let's just say HE'S the one who reminds ME to pray for his friends when he knows they are having their tonsils out.

Charlie has NEVER said, "It's not fair."

He knows that I'm very proud of him when he reads the word "shark" and I'm very proud of Emma when she signs "more." Someday, I'll be very proud of him when he gets an A on his calculus test and I'll be very proud of her when she uses a fork and that disparity won't be a problem for him.

He makes quick and easy friends with the boy in the wheelchair in the waiting room at Emma's appointments.

He mentioned to me today that he likes Emma's pigtails. He said, "People always come up and say that she's so cute and they like her pigtails. I like my sister ... " No jealousy that she gets all the attention, no bitterness that she takes Mommy away from him sometimes. Just love.

And I think that all special kids have this impact on EVERYONE around them. A girl with Down Syndrome who we love at our church had heart surgery today. The family has been stuck at home for a few weeks now, trying not to allow any germs anywhere near their sweet girl. Our kids at church have been memorizing Scripture songs and two Wednesdays ago, during Wednesday night programming, the kids and our children's pastor made an impromptu phone call to the stuck-at-home family. Over a cell phone's speaker, the kids all worshipped together, singing Philippians 4:6-7

Do not be anxious about anything but in everything with prayer and petition with thanksgiving present your requests to God and the peace of God that transcends all understanding with guard your hearts and your minds in Christ Jesus.

Do you find that one of the amazing powers folks with special needs have is that they provide an amazing opportunity for those around them to be shaped into something better than they would be otherwise?

Charlie is only 4. I can't wait to watch and see what Emma is going to help him discover as he grows into the man God has made him to be.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
PS - we are LOVING this group! It's called Seeds family worship and they publish Bible verse memorization songs that you might actually WANT to listen to :) Here's the Philippians verse. Enjoy!

Wordless Wed ... oh, wait! It's FRIDAY???? :)

2011-03-04T14:23:00.002-06:00

Time seems to be flying by at an alarming rate around here.

So here's what we've been up to lately.

Emma got a haircut :)

Charlie's in swimming lessons. He loves it!

And here are the pictures from the Marshmallow Incident recorded last week ... or was it two weeks ago? What day is it? What month is it? How old am I? :)

Have a wonderful, blessed weekend!

2 Things that make me laugh

2011-02-23T13:46:00.002-06:00

"Charlie, I understand that you are just quoting Goliath from your Bible, but telling your friend that you are going to chop his head off and have him on toast is not polite dinner table conversation. Now hand me the knife."

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Charlie and I were having hot chocolate after playing in the snow. We sat Emma with us and gave her some marshmallows to play with. She's .... ummm ... conducting an advanced study of gravity lately (read: throwing), so all those little marshmallows ended up on the floor. So I fished a sticky marshmallow out of my hot chocolate and gave it to her. Watching her try to throw it was HILARIOUS!

Then I cheered when she put it in her mouth. Charlie said, "Daddy! She ate her first marshmallow! Mommy, is it gone? Did she actually eat it?"

"Um, let's see. No, buddy, it's back here in her hair."

"Daddy! Emma put her first marshmallow in her hair!"

Apparently we celebrate accomplishments fairly liberally around here :)

Hope you are having a wonderful day

Tough to swallow

2011-02-20T15:43:00.003-06:00

One of the most frustrating questions I have people ask me is, "When are you allowed to start feeding her?"

As if it's really that easy ... just sit her in a high chair and feed her!

I get why people ask; when we first brought her home, people knew about her major tummy surgery and her cleft palate, so they assumed that she had a tube because of that ... and for awhile, I was ok with that assumption. I even kind of embraced it because we didn't KNOW that she couldn't eat, we just knew that she sort of had the deck stacked against her due to her physical issues and she had sort of lost all those instincts to eat when she was hungry because she had been tube fed since the beginning.

And she's had seasons of "good" eating - taking bites, doing some swallowing - but it seems like there's always some illness or .. you know, random facial paralysis ... that stands in the way of her progress.

So I wasn't terribly worried about her swallow study last week. Her feeding therapists just wanted to see what she was and was not doing so that we can proceed with a new kind of swallow therapy in the coming months.

I wasn't prepared to hear about her aspirating.

But she did. She let food straight down that windpipe, never even coughed. She did swallow during the study, twice. But she also let some liquid just sit towards the back of her tongue and didn't clear it up or down, sent some food up her nose, and let some slide down into her lungs.

Yuck.

So she is now not allowed to try liquids. She has an "uncoordinated and inconsistent swallow."

I asked if this is something she may grow out of, or if her therapy could help her move past this. I hate the way therapists say, "Well, she could, but, you know, with her diagnosis ..."

So starting around April we're going to do a therapy called VitalStim, which means they will place electrodes on Emma's swallow muscles in her neck and give her some food and then stimulate those muscles to help her learn to use them to swallow. It sounds much more barbaric than it really is, I promise.

But for the first time I'm realizing that maybe this tube is a permanent thing.

On one level, I am proud of her. She's not just being stubborn about not eating, she's protecting her airway because she knows she's not safe. And I'm SO glad we already have the tube and we don't have to make that incredibly hard decision. She's getting nutrients, she's growing and developing, and if she never eats, she can still live a happy, healthy life.

We'll of course give her every opportunity, but I do have to admit that this was not fun news to receive.

Our prayers were answered

2011-02-15T21:04:00.004-06:00

The answer was no.

This post has been brewing in my brain for awhile, and now that our pastor has been doing a series on prayer, it's come together in a way that has made me realize that maybe there's something I need to share.

I've been thinking a lot about prayer - especially prayers that are answered, "No."

Now to Him who is able to do immeasurably more than we can ask or even imagine, according to his power that is at work within us, to Him be the glory ... (Eph 3:20)

When we were pregnant with Emma, we prayed. A lot

Dear Lord, you are able to heal Emma. Please put her stomach back where it's supposed to be. Please heal the hole in her heart and make her aorta pump the way it should. Grow another artery in our umbilical cord. Grow her. Keep her safe. Please don't let her die.

Were those prayers too big? Far-reaching? Arrogant? Too bold? Unrealistic? Reckless, even?

Which of you fathers, if your son asks for a fish, will give him a snake instead? Or if he asks for an egg, will give him a scorpion? If you then, though you are a sinner, know how to give good gifts to your children, how much more will your Father in heaven give to those who ask? (Luke 11:11-13)

There were other prayers, too.

Dear Lord, the doctors say she might be different. Please don't let her be different. Please let her be my definition of smart and beautiful, able to do all the things I can do in the ways I can do.

When I was pregnant with Emma, I'd see mothers like me with children like Emma and I'd burst into tears.

Lord, I can't do that! Please don't give me that life!!

The answer to that prayer was no.

And there are many days that I'm not sure WHY our answer was no.

Since then, some answers have been yes, some answers have been no. We've had moments of pure miraculous joy as we've realized Emma has heard us for the first time or is communicating in ways we didn't think she could. But we've also watched her hospitalized and rushed her to the ER and held her during moments of unsolvable pain. We've been frustrated by her ears and feeding issues, and we've been blown away by milestones reached.

Job said, "these are things too wonderful for me to know."
The Lord gives and the Lord takes away, blessed be the name of the Lord.

I've spoken many times on this blog and in my life of the ways Emma's presence in my life has been an immeasurable blessing.

So I know that God is good.

in all things God works for the good of those who love him ... Romans 8:28

So I will continue to praise Him and continue to thank Him.

Just like Charlie doesn't trust me less or love me less if I say no to him when he asks for something that is not in his best interest, my trust and love for the Lord doesn't depend on his answers to my prayers

And I will continue to ask and pray and trust

The Bible tells us to be persistent in our prayers, to pray expecting an answer, to come into God's presence knowing that we have been lovingly INVITED to be there

Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need - Hebrews 4:16

I am certain that I am supposed to be bold, persistent, and faithful in my prayers

And lately, Emma's ... well ... two-year-old-ness is really starting to show, and we're experiencing some frustration around here on a couple of fronts

So I'm going to pray

Dear Lord, use Emma's life - her struggles, her smiles, her joy, her triumphs and her falls - use it all for Your glory. But, please, Father ... Daddy, could it please be in your plan that she be able to talk? Please could she be able to tell me in words if she's sad or afraid? Please, let her be able to say the words, "Mommy, I love you."

It's not about me
I love you
Amen

sometimes you just have to let little thoughts like these out ...

2011-02-03T15:29:00.004-06:00

... in no particular order with no particular agenda ...

My last haircut was 6 months ago. It cost $9.99 and Emma was sitting on my lap ... oh, well, don't have time for more than a ponytail anyway.

I just finished memorizing Paul's poem about Christ's humility in Philippians 2 ... memorizing Scripture is convicting stuff!

My husband left a lot of crumbs on the floor last night from his dinner ... which he ate alone with a sick Emma so that Charlie and I could go to church. Those crumbs were not hard for me to clean up. :)

I've lost 7 pounds ... I still think New Years Resolutions are silly

Been thinking a lot about prayer and what it's purpose is in my relationship to the Creator of the Universe. Why on earth would He want to hear from me? Wishing lessons like this and this could be learned without so much struggle.

I couldn't find a Valentines Day card that said what I wanted it to say. Why do they all have pictures of curling up on the couch and foot rubs and barefoot slow-dancing instead of "You are the most admirable, hardworking, amazing father and husband and MAN I could ever hope to be called to honor and respect for the rest of my life?" you know, maybe with a picture of a good ole DAD playing monster trucks with his son ...

just my two cents

Emma is feeling much better today. She is back to giggling at me when I stick my tongue out at her :)

Wordless Wednesday

2011-01-26T14:00:00.002-06:00

"Mommy, can we have a puzzle party before naptime?"

Yes, yes we can :)

Updates in pictures and movies

2011-01-20T14:47:00.004-06:00

HOW DID THAT HAPPEN?

somehow or another ...

amidst party hats and cake ...

My little dude turned 4!

(and just to clarify, HE insisted that there must be hats. Honestly. We were packing up to get ready to go and he asked if we remembered the hats .... oh, to be able to see what goes on in that little man's head ... :))

We had a fabulous party and he's very proud of himself, telling everyone that he is now FOUR.

I couldn't be more proud of my little man!

Meanwhile, I think Emma is teething. She goes through times of being an unhappy Bear, but Tylenol really seems to help and the doc says her ears are fine, so we're gonna go with the explanation that she's teething ...

But she seeks more sensory input than usual (banging her heels on the floor, stuff like that) when she's uncomfortable, and we've found that the best sensory experience that helps a Princess in distress is a BATH.

She has really started absolutely LOVING bath time. Isn't she cute, that little little girl in that big tub? :)

But most of the time, she's doing just fine

vocalizing more and more every day, letting us know how she feels about things :)

bouncing on her butt and waving her arms to ask to be picked up

crawling all over the place, particularly in the direction of Mommy and that fascinating camera

and generally just being a sweet girl ...

She TOTALLY knows something we don't know :)

I'll finish the mega pics post with 3 videos. The first is a giggle-fest with a ticklish Bear

And these next two videos showcase Emma's new skill. Now, I realize that seeing it two isolated times in two short videos isn't terribly exciting, but I swear to you, she really can do this!!

Yes, there are definitely times when she doesn't FEEL like doing it (can you say diva?)

But as long as we keep it novel, she'll play along until she finds something more interesting. She's done it a couple of times with cards from Charlie's Memory game, she'll do it with puzzles and she's done it for her Speech Pathologist a couple of times.

I'm pretty proud of both my kids!

Emotional Maturity

2011-01-13T20:55:00.002-06:00

Something's going on with Emma. The last two days, she has woken up from her naps screaming after only sleeping an hour. It may be teething ... I'm not sure.

But that's not what this post is about.

Emma and Charlie both take afternoon naps, but Charlie is usually up before Emma is and gets a little Mommy time. This has not been the case since Emma's most recent health drama, however, and I've been wondering if the little man's "love tank" was starting to run on empty.

Today when he woke up I was changing an Emma diaper. He came out from his nap carrying Blankey and Bear and asked for some snuggles.

He hasn't really asked for snuggles like that in a long time ... he IS four now, you know! :)

I knelt down and gave him a hug, which is all he really wants lately, but today he asked if we could go and snuggle on the couch.

He said, "Mommy, I just need some of your attention today."

Wow.

I decided not to make a big deal of it at the time, particularly since Emma was also needy and Josh was at a meeting tonight. So Charlie and Emma and I snuggled together and it was really nice.

Later, though, when I was tucking Charlie in, he absolutely blew me away with his emotional maturity.

He said, "Mommy, I had a good day with you. Can we talk about what we did today?"

We talked about all the things we had done. We had a lunch date with some friends and sang silly songs in the car and had pizza for dinner ...

Then he said, "Remember when I got up from my nap and said that I needed your attention?"

I said, "Yeah, buddy, tell me about that. Mommy is always here, why did you say you needed attention? I'm always here if you need something."

Pause. Then he said, "So ... tell me what the word 'attention' means."

Ouch

"Well, it means that we talk together and do things together and give hugs and help each other ..."

"But Mommy, you know how you've been saying that sometimes you need to focus on Emma ..."

Oh

"You're right, buddy, Emma needs more help than you do"

"Why, Mommy?"

I'm not sure if I did the right thing ... I said it was because she's little. I said it was because he's such a big boy who can do so many things and she's still little, and plus she has a lot of things that she needs a lot of help learning ... but I stopped short of the full answer ... did I do the right thing? WHERE IS MY PARENT INSTRUCTION MANUAL FOR THIS JOURNEY????

"But you know what, Charlie? I am SO proud of you that when you were feeling like you needed some Mommy time, you didn't cry, you didn't get upset, you just did a very grown up thing and used your words and told me that you needed me. Thank you"

I've said it before and I'll say it again: God absolutely knew what He was doing when he gave me Charlie.

Silver Linings ...

2011-01-09T21:08:00.003-06:00

or, Praying with the Expectation that God will MOVE.

I've been feeling a little awkward about the last two posts on my blog. You know, the ones that ask for prayer about a procedure and then the one that reports that the procedure didn't even happen? Yeah, those.

I've been feeling weird because I want to convey my emotions about our last week correctly, and sometimes that's hard in blog form.

So first, let me say that YES! We were very frustrated about Emma's ears last week. We cried. We asked questions. We still have many questions. We prayed a lot and asked others to pray a lot about care for Emma's ears in the coming months.

I called Emma's ENT's office, and a nurse was able to read and explain her doctor's OR report to me. Her left ear canal was essentially filled with inflammatory tissue. He did not replace the ear tube in that ear, and I think it might be that he wants to see if the problem is that her ears are attacking the tubes with this granulated tissue.

We have another ABR scheduled in two weeks and then we will meet with her doc again and see what he says about the report and care for Emma's ears going forward. We expect that the report that said that her hearing had gotten worse was actually correct because of the tissue building in her canal.

But I want you to understand something very important to me; God is moved by prayer. He may not move in the way that we think He will, but there is no curve ball that He is not anticipating.

So I wanted to make sure I share the ways that God moved as a result of prayers that you didn't even know to pray :)

1) I truly believe that Emma was headed for another bout of facial paralysis, this time on the opposite side, and I believe that this 'unexpected' surgery saved her from it. The tissue in her ears would have continued to build up, which is what caused the right side of her face to be paralyzed last May. God knew that, and he used this doctor's appointment to address the issue.

2) The fact that the day could not have gone smoother causes me to praise the God who holds all our days in His hand. Emma was already fasting in preparation for sedation with the hearing test, so she was prepared for surgery.

3) The doctor had an open schedule that afternoon, and then a meeting at 6, so he was at the hospital anyway and more than willing to take an impromptu trip to the OR.

4) Emma's doctor left for a medical missions trip this week, so if the situation had been left to build to it's inevitable ER-visit-inducing conclusion, he would not have been there and his partners (who round in the Children's Hospital ER that we would have taken her to) would have been very busy, so this timing was perfect.

5) The OR was able to get us in within the hour, even though ear tube replacement is probably not generally considered to be emergency surgery.

6) Charlie was already at my mothers, and Josh was able to come and be there.

7) Emma recovered from the surgery BEAUTIFULLY! We went to church that night!

So while these are not outrageous, spectacular miracles, I do see them as God's hand.

God is here.

His job is never to be our genie up in the sky, giving us what we want, but I would much rather worship a God who knows better than I do what's best for me. If He were small enough that I understood His plans for me, he wouldn't be as worthy as He is of all my worship and devotion.

I am His child.

And so is Emma.

So I'll thank Him for the way He answers our prayers and rest in His gentle care for us.

Because, as Charlie has been singing all week,

My God is so BIG
So strong and so mighty
There's nothing my God cannot do.
The mountains are His
The rivers are His
The stars are His handiwork, too.
My God is so big,
So strong and so mighty,
There's nothing my God cannot do.

Thank you, dear friends, for your prayers

Update

2011-01-05T21:49:00.002-06:00

Well, sort of an update ... I don't really understand ... again

sigh

Ok, well, as usual, we scheduled an appointment with Emma's ear doc (ENT) today before her hearing test to make sure her tubes were open and functioning and confirm that her ear infection had cleared up so that we would be confident in the results of her hearing test.

She did not have a hearing test today.

Instead, we went to the OR.

Her ENT saw something strange in her left ear - so (miracle of miracles!) he was able to take some time in his afternoon schedule and was able to get a room in the OR to go in and see what was going on. Praise God for no waiting.

Emma's ear tube had, once again, been over-grown by granulation tissue. He was able to get the tube out, but he said that he didn't even bother replacing it because there is so much tissue even behind the ear drum.

I don't understand

It's the same thing as the facial paralysis explanation, I think, just in the OTHER ear.

So we're back to ear drops, but he called this a "long term problem"

I don't understand the problem, and I REALLY don't understand the possible solutions.

Mothers should NOT be expected to retain information given to them in a post-op setting. And my poor husband relies on MY recap of the conversation with the doctor ... but believe me, when the worst case scenario includes the word "deaf," I'm fairly certain I didn't hear any thing else in the conversation accurately.

I'm going to call his office tomorrow and ask for his written report summarizing his findings.

I'll update more when I understand more.

But for now, Emma is just fine, resting comfortably, not really understanding what all the fuss is about. She just got a good nap in this afternoon! :)

Hi

2011-01-04T14:04:00.002-06:00

Happy new year!

To be honest, I've never really bought in to the whole "fresh start" of a new year before. It seems silly on both sides of it; any given Monday could be a fresh start, why don't we make "new week's resolutions?" And on the flip side, I really am no different on 1/1 than I was on 12/31, so why do we believe that our resolutions will hold any weight this time around?

So call me a hypocrite when I say that I have a goal for myself for the next couple of months ... :)

I'm going to try to memorize the book of Philippians. I have always found that when I commit Scripture to memory that it takes root in my heart in a different way than if I just read everyday. God has gifted me with a mind for memorizing (ask me sometime and I can tell you what my dad's credit card number was in 1987 ... but don't ask me why I know it...). So I'm going to try to use it and see if HE uses my efforts for some good.

I've already been blessed by just learning the greeting section of the first chapter. Paul is telling the Philippians how he thanks God every time he thinks of them and how he prays that their love may grow in knowledge and depth of insight. It made me think about how we have to LEARN to love one another better and about how my simple, human EMOTIONS are not the same as learning to abound in Christ's love.

We can all get better at that old, simple, Christianity 101 rule, right?

Love one another.

So simple. So difficult.

I'm praying that my walk through the book of Philippians will give God places to shine His light into the little corner of the world that I happen to be in.

~~~~~~~~~~~~~~~~~~~~~~~~~~~

And, prayer warriors, I have a request:

Emma's ENT's prediction is coming true. "Plan on being frustrated by her ears for the next couple of years"

Emma has had a sinus infection and an ear infection for the past week or so. She's been on antibiotics, which are, of course, messing with her tummy.

But she has another sedated hearing test tomorrow.

So we went to the doctor this morning for her pre-op appointment and her ears are clear. Her tummy is not happy and she's still got a bit of a cold, but her EARS are fine.

That being the case, we're going ahead with the sedated procedure tomorrow.

Please pray that
1) There will be no complications with being sedated. Last time we put her under, her tummy bled, but that was general anesthesia whereas this is just sedation with chlorohydrate ... not that chlorohydrate sounds like a good plan for a tummy that's unhappy, but if we wait for that to resolve, the fear is that her ear tubes will clog up again before we get to the test.

2) The test results will be accurate. The medical community often views this hearing test as the gospel truth about what Emma can and cannot hear, but I know many parents who don't believe the results of an ABR for their kids, so please pray that we will feel peace that the results are in line with what we observe of her behavior at home.

3) Emma's hearing will not have gotten worse. I'm not sure what to predict on this one, her response to sounds is just so inconsistent ... but the reason we are re-doing the test we did in November is because that test showed her hearing had gotten MUCH worse. Please pray that those results were, indeed, wrong.

Thank you!
We are so blessed by your prayers!!!

You aren't going to believe me

2010-12-23T15:22:00.004-06:00

Josh doesn't believe me.

I'm not entirely sure that I believe me.

Emma's SLP (Speech and Language Pathologist) has been trying to get Emma to follow directions and identify objects. I've been ... supportive, but rolling my eyes at her in my mind.

The child does not walk or talk, she's NOT going to choose the right card when asked to identify the dog or the car on those pictures ...

right?

So today she put Emma in a chair with a tray and said, "Let's just try it."

The first two pictures were a car and a baby.

"Emma, which one is the car?"

Emma grabbed the card with the car on it.

Um, ok, sure, lucky guess. The car has more bright colors than the baby doll.

A train and a duck.

"Emma, where is the ducky?"

Right ... see, both times the correct card was on her left, so that MUST be what's going on, because MY child does NOT know how to do this! Believe me, I've tried!

Realistic pictures this time of toes and a hand.

"Emma, which picture is the toes? Grab the toes."

Well, ok, it was on her right this time ... ummm ....

We set aside the cards she grabbed for correctly and tried all sorts of combinations, switching the right and the left, asking for boring colors and not interesting pictures.

With over 80% accuracy (the SLP was counting because that's Emma's documented goal), Emma correctly reached for the card picturing a car, a train, toes, eyes, an ear (and for bonus points reached for her own ear also on this one!!!!), a duck, a baby, a hand, and a truck!

I cried.

The SLP was absolutely thrilled.

Now, I know that sometimes Emma's skills come and go. I know that she did it today but that she might not do it tomorrow.

But for today, it was a GREAT early Christmas present.

Charlie Christmas Carols

2010-12-14T14:48:00.003-06:00

Determination

2010-12-14T14:41:00.002-06:00

Treeing....

2010-12-12T15:26:00.027-06:00

It's a tradition I married into. "We go frolick and find a tree" I was told. Silly me! I thought we went to the nearest parking lot with trees and picked one........oh no! You must take a whole day to do what should take about 2 hours!

First, you must bundle!

And then you get in the car and unbundle because bundling makes you warm.....

And then, upon arriving at the tree farm (yes, farm, not parking lot....) you must rebundle and look cute!
And then we're off to find the "perfect" tree....or to be clear 4 perfect trees. Now that Becky and her 2 brothers have all have houses of their own, we need 4 trees.

Nana picks the first tree she sees, and the rest of us ignore her because we're just starting to look.

And then we go through and check each tree and come to an agreement on the perfect tree. This part is actually a lot of fun. It's a debate every year between tall/short, skinny/round, big/small needles, etc....

About 2 seconds or so into the process, Charlie is pooped! So much work to walk when you're all bundled and there's snow.......so there's Uncle Dave for that!

Maybe we need to go up there where all those cars are going!

So we all load into the truck, and it's off to......yet another part of the farm.

And after the quick nap on Uncle Dave, it's off to the frolicking once again!

And when we land on a tree, we ask some poor unsuspecting passer-by to take the family pic!

And again......

And again....poor unsuspecting passer-by

***Only Minnesotan's will understand, but yes, I have the lovely pink really warm hat. It's tradition! We usually use it to mark a "maybe" tree until we're decided. And yes, Uncle Dave is wearing an equally interesting, yet warm, hat. And yes, Uncle Mark (far left) is wearing hat, jacket, snow pants and.....shoes! uh huh....we're nothing if not fashionable!

And then comes the cutting! Charlie is VERY! helpful.

And Emma thinks we're HILARIOUS!!

Good work Daddy! Keep it up!

Are you done yet?

So, who's bright idea was it to ride in the back of the truck up to this area? Who thought riding back down with four trees in the back would be fun?

Uncle Dave and Charlie are under there somewhere....

I think.....

And Mommy and Daddy squished in the back.

Lucky for you I'm out of pictures and patience!

Next comes the shaking and bagging of the trees, the trip back to the city, and then four stops to get trees put up, and then decorating of the family tree at Nana's. It's a long, tiring, REALLY FUN day!

Friday night at a local dive

2010-12-11T13:10:00.004-06:00

Click the music video and listen while reading the post - it really lets you experience the atmosphere of our evening better, I promise.

Charlie wanted to try bowling, and there's this bowling alley (DIVE) 2 minutes from our house, so we thought we'd let him give it a shot.

We had a REALLY great time! Just the 4 of us.

Charlie and Josh bumper-bowled (Charlie ALMOST beat Josh because Josh couldn't find a ball that fit his fingers!)

Emma crawled around on the floor and laughed at me while I cheered for Charlie.

And then we had dinner at the bar. I ordered a tall tap beer and danced a giggling Emma on my lap to "Sweet Child o Mine" by Guns n Roses.

We had apps and fries and Charlie and Daddy watched football on the big screen TV while Emma charmed the waitress.

It was really great!

We are SO not barflies, but since most places in the Twin Cities don't let people smoke if there's food being served, it's not like it's physically unhealthy for the kids. The worst that could happen is Charlie could ask further follow-up questions about the song "She thinks my tractor's sexy" that was blaring from the juke box.

We laughed, we ate, Josh and I had a beer and the kids laughed at us singing along with bad '80s music. It was a REALLY good time :)

Feeding Therapy ...

2010-12-11T12:51:00.002-06:00

is going well :)

Charlie's sick :(

2010-12-08T13:09:00.001-06:00

C: "Mommy, you know what I really like to do when I'm sick?"

Me: "What, buddy?" (bracing myself for a request for another movie or possibly Wii)

C: "I like to snuggle."

LOVE that kid :)