Friday, June 29, 2012

Well, I'm waiting for her to poop so I can see what it smells like




So Emma's ears are giving us trouble.

She did a round of antibiotics and that didn't clear things up.

We then had a super-successful visit to the ENT, where he was able to use some Instruments of Torture to pull out more Gunk (medical term) from her ear than I would have thought possible.

She is acting like she feels better now, thank God!  However, she still needs to be on antibiotic ear drops.

Now, here's where I start sounding crazy.  Ready?

Everytime Emma has been on these drops, she has gotten that awful, painful, make-your-colon-bleed, GI bug called c diff. 

I know.  I know.

Ear drops make her tummy sick.  Yeah, right, crazy lady.

Seriously, no one believes me.  But I don't blame them.  It's very silly.  I don't believe me, either.

Such is the life of Emma's mom. 

So.  We are on day 2 of a 7-day course of ear drops.  She's acting fine.  Except for her diapers.  Oh, and she's not sleeping

It'll take a couple of days to see if we can fight this side-effect off with probiotics.  Or maybe I'm crazy and she'll be fine.

Either way, I have had this song from Scrubs going through my head for a few days now. 

Sing it with me!  Everything comes down to poo ...

Thursday, June 28, 2012

Hope

A few weeks ago, we attended a fundraising event for an organization that has been a huge blessing to us.
Learn more about HopeKids here.
Thank you for those of you who gave to this great organization.
Emma had a really great time at the walk :) A photographer got some really great pictures of her and ... well ... sorry about the random "photo dump," but ... seriously, she's just cute!

Wednesday, June 27, 2012

What did you do last week?

I met a woman who travelled from Kentucky to Chicago just to hug some kids with CdLS ... her little CdLS angel is in heaven now, and you could literally watch healing take place in those hugs.

I met a photographer who gave up shooting supermodels in Milan and Paris to take pictures of kids with rare genetic disorders because he is passionate about redefining the word 'beautiful.'

I watched Charlie walk up to a new friend and say, "My sister has CdLS just like your brother, wanna build a sandcastle?"  They didn't discuss CdLS at all after that.  It was wonderful.

I attended a banquet with over 100 other families just like mine.  At the dance after the banquet, I watched kids with CdLS and kids without CdLS dance the night away.

I held a baby with no hands.  She was beautiful.

I heard a boy talk about how his experience with kids at school bullying his sister prompted him to write a book.  Charlie heard that boy, too, and asked me why anyone would make fun of someone with CdLS. 

I told my son about that one time at Target.  He asked if I yelled, "Why are you making fun of my daughter?!"  I told him that sometimes kindness and love are a better response.  He agreed.

I saw a mom running panicked down the hallway because her son had pulled out his feeding tube.  I had a syringe and helped her put it back in.  It was my first time being the experienced one.

I sat crying with a group of women as we all took turns telling about "when we first found out."

I saw an older boy with CdLS play with Charlie in the hotel pool.  At the end of the weekend, he saw Charlie in the hallway and came over to say goodbye.  Charlie said, "I'll see you next year!"  Charlie didn't think of him as his new friend with CdLS, he thought of him as a new friend.

I met a GI doctor who specializes in kiddos with CdLS.  She told me I was doing it right.

I stayed up late with other parents like me, laughing until my side hurt about all the very silly mistakes we parents make when we are first learning how to tube-feed our children. 

I learned

I loved

I cried

I realized how much I had missed out on before my world was rocked by the letters CdLS.

Monday, June 18, 2012

True Story

Emma's ear is infected and stuff

(and by "and stuff" I mean we have another surgery scheduled ... )

She's on an antibiotic for it, which means in addition to night waking and pain that she can't express, we have had some fun diaper moments.

And Murphy's Law of Motherhood dictates that fun diaper moments MUST happen in the car, when it is raining, with both kids in tow, right at the BEGINNING of a busy morning of running errands and going to therapy. 

And I will admit that stress and sleep deprivation usually results in a cranky mommy ... which means Charlie gets, um, corrected more than usual.

So a few days ago, after a SUPER fun morning, we were driving home for lunch and I told Charlie why I was grumpy.  I told him Emma needed surgery again and she's not sleeping well and so I'm tired and stressed and it's making me grumpy and I'm sorry.

Charlie's response:  "I'll pray for you, Mom."

I love him :)

Thursday, June 14, 2012

Our little Cleaner

Emma has decided to start pitching in and helping with the chores around here ... sort of ...

The process starts with stealing the towel that hangs on the oven door and ... um ... wiping things off ... like the inside of her food cabinet
 "I just cleaned the inside of this cabinet door yesterday, how did it get so dirty again?"
 Then we clean the floor ... I have to admit, I prefer this routine with the towel over the plan she had last weekend which involved "cleaning" the living room carpet with a Kleenex ...



And then we move on to taking care of the clutter ...

We have a gate at the top of the stairs.  Apparently, that's where the clutter goes ... down the stairs.  You should see this child, she's on a mission!  Yesterday, all refrigerator magnets NEEDED to go down the stairs. 

This morning, her Bus toy NEEDED to go down the stairs ... the only problem is that the bus toy did not fit through the spaces in the gate ... this was a crisis

But she found me and signed "Help," so ... you know ... there's that ... :)

I love my child, and I love watching her work on her projects ...

I occasionally trip on the stairs ...

But at least she's cute!

Wednesday, June 13, 2012

Sunday, June 10, 2012

They








really love each other.



My Heavenly Father knew exactly what He was doing when he put these two together ... how I got so lucky, I'll never know

Wednesday, June 6, 2012

Best. Daddy. Ever

My husband came home from work tonight and said, "Charlie, I have something to teach you."

 As I type this, they are sitting at the kitchen table discussing the finer points of the differences between a "ball" and a "strike" and a "foul ball" and a "forced out" and a "pop fly"

Charlie is soaking it up like a sponge.

"Daddy, you're teaching me A LOT!"


The understanding Charlie is gaining this evening will come in very handy next time he is the pitcher for Daddy ... they are currently discussing the "Strike Zone" ...
 But then again, these two will swing at anything ... with their big blue bat ...


I don't mean to brag (except maybe a little), but my children might honestly have the best Daddy on earth.

And I kinda like him, too :)


Tuesday, June 5, 2012

Mom guilt

There this lie that I believed for awhile ... it goes like this:

If I am the perfect mom, I will have perfect kids. 

That's just not true

But I don't think I'm alone in believing that lie ... Mothers?  Yes?  Please tell me someone else out there bought into this at some time?

I thought so :)

The SNM (Special Needs Mommy) amendment to this lie is this:

If I am the perfect mom and take my child to enough appointments, I will have a perfect kid with special needs.

That's not true either!

Now, I agree with medical professionals when they say that Speech Therapy and OT and PT are really important for helping our special little ones reach their full potential.  Therefore, I understand why parents receiving a tough diagnosis get instantly referred to Early Intervention services so that they can start working with their child on what their child needs to work on.

However

I don't think I'm alone when I say that many SNMs get so caught up in the therapy appointments that they feel horribly, terribly, gut-wrenchingly guilty every moment NOT spent "working with" their child on some kind of therapy.

Emma is 3.  She doesn't talk yet.  If I had spent the last 3 years going to Speech Therapy with Emma 20 hours a week, would she be talking by now?

Probably not

But don't believe for a moment that the decision to NOT over-therapy my family (remember my other child?) ... please don't think for a moment that that decision was made without tears.  Please understand that, for families like mine, we have the option to have OT or Speech or Physical Therapy in addition to school every day if we want it. 

So I'm calling out the lie

Emma is happy.  She currently "performing at the level of her cognitive abilities"  ... which means that right now it's as good as it's gonna get :)  She's not frustrated.  We need to work on some things (eating), but I will NOT over-therapy my family. 

She has CdLS.  She has delays.  And even if I tried, I could not "therapy it out of her."


And if you are not lucky enough to be a part of the SNP club, I'd like you to understand that it is harder than you realize to let go of this illusion.  I know that it is possible that Emma will have frustration, behaviors, and struggles in the future.  I wish I could believe that if we go to enough therapy sessions now, we could avoid all that.  That's not true. 


So I will bravely draw a line in the sand.  I will say that Emma needs some help, and I will fight to get her that help.  But I will not feel guilty about days when we have no appointments.

Because on those days, we have much more important things to do:





Playing in the dirt at Charlie's baseball game with Daddy totally counts as a sensory experience, right? :)