Monday, November 29, 2010

Nothing

Nothing profound to say today.

I declared today a p-jammie day. We are having a VERY rare day of no appointments or playdates or anything, and since Charlie and I both have some sniffles, I decided not to seek out any company or run any errands and just declare it a do NOTHING day.

As sweet as it has been, it's reminded me that "normal" stay at home mom days with nothing to do have their own version of difficult. It took Charlie a little while to stop asking where we were going today.

But finally we hit our groove. He played legos. I folded laundry. Emma helped.

It's been a nice day so far.

I really just wanted to share a story and a video:

STORY:
Charlie loves Toy Story. Well, really, he only loves Toy Story 2 because it's the only one he's seen. Toy Story 1 has that creepy mean neighbor who scares me and Toy Story 3 has a bear and a clown that both scare me ... I'm a wimp. So Charlie loves Toy Story 2.

He loves that Buzz Lightyear goes to rescue his friend Woody. My boy is very tender-hearted, but also has a lion-hearted spirit. Remember when he was fighting bad guys to take them away from Emma? My mom had car trouble last weekend and called us and I told Josh that she needed to be picked up. My little boy lit up like a Christmas tree, on fire about the opportunity to go "rescue his Nana."

I really like him :)

But on the Toy Story theme, he cracked me up today.

He looked at me very seriously over lunch and said "Mommy? You know how in Toy Story 2 Buzz Lightyear says 'To infinity and beyond'? Well, does that mean that in Toy Story 3 he will say 'Three infinity and beyond'?"

Hee hee hee

~~~~~~~~~~~~~~~~~~~~~~~~~~~
And now for the Princess:

This video is nothing but a happy girl in her usual evening good mood sporting her new "I'm in feeding therapy now" haircut.

She's been feeling so much better!

It's so nice to have her back!

Saturday, November 27, 2010

Thankful

I was at a baby shower earlier today and someone asked me who was watching the kids.

It made me realize how spoiled I am. I TOTALLY take for granted that we are blessed enough that my husband has a job where he can be home on weekends and that I don't have to work.

Not only that, but I also take for granted that, while I'm gone, Josh is more than happy to spend time with the kids. He's not baby-sitting, he's being a daddy.

Even more, they didn't just hunker down in their PJ's and watch movies. Josh took the two kids to the zoo by himself.

And THEN, when he came home, he acknowledged that it's a heck of a lot of work to take little kids out when it's cold outside. In fact, he tells me regularly that he doesn't know how I do it, showing his appreciation that the job I have is not an easy one.

I'm sorry for the times I take him for granted.
I'm very very thankful for my husband.

Wednesday, November 24, 2010

My poor neglected blog

ah, well. life has been crazy busy.

Emma has been doing really great at feeding therapy. She had really developed an oral aversion after that facial paralysis in May, so we've been working on that. She now accepting a spoon with food on it with an open mouth and is pretty happy and excited about it! She's still not swallowing much, but this is a huge step and we're really proud of her.

She's also on the road to recovery regarding all her other GI stuff, and she's also finally well enough to wear her hearing aid again (the left one, anyway. She still screams about the right one)

Charlie's a rock star as always.

I really am incredibly grateful for my husband and my children. I am determined to have a joy-filled Thanksgiving, focusing on all the Lord has done for us this year.

God bless you this Thanksgiving!

Monday, November 15, 2010

Second post on purpose :)

I'm sick of being a downer. I'm sick of pity and I'm sick of stress. Not in an angry way - more in a 'Mary Tyler Moore throwing her hat in the air' or possibly a 'trading my sorrows' kind of way. I'm ready to choose some joy!

So while I wanted to give you an update on what's been going on, I didn't want my blog to be negative all day today (or tomorrow or whenever I get to it to post again)

So here's my other post today :)

I'm thinking about the Christmas story a lot right now ... mostly because I'm helping out with the children's musical again and so Charlie is singing a lot of "No fear, good news, great joy for all" lyrics around here lately :)

I'm amazed by Mary. An angel comes to her and says "Ok, so. You know YOUR plans? They are going out the window. You're going to get pregnant, even though you are not married, which may or may not ruin your life (you know, socially). Your son is going to be the Messiah."

(and by the way, He's going to be arrested, tried, and crucified before your very eyes. You are going to watch your firstborn son die a horrible death for all mankind.)

Her response?

"My soul glorifies the Lord and my spirit rejoices in God my Savior ... the Mighty One has done great things for me."

She gives birth in a STABLE and is visited by smelly shepherds.

She understands STRESS

My stress is nothing compared to hers, but I'm trying to learn from her response to stress.

She sees the blessing past the inconvenience

Raise your hand if you've been blessed by Emma.

:)

just kidding

But you know what I mean. My daughter is a blessing that I feel COMPELLED to share with the world. But part of the blessing is the stress. She's not going to be able to display triumph without struggle. There is no overcoming adversity without the adversity.

God reminded me of this on Sunday.

Our church supports a mission in the cities that is a residential drug and alcohol treatment program. It's not like a '28 days' type of thing - my understanding is that most folks are there for months and if they weren't there they'd be in prison. But it's a faith-based program with an over 75% success rate with their graduates.

Once a year our church has their choir come and lead us in worship. Men and women give testimony to what the Lord has saved them from.

They sang "Mighty to Save" - POWERFUL

So after the service I ran into a couple of women from the program outside the women's restroom and I had Emma on my hip. One of the women was wearing a pretty shawl, which Emma OF COURSE wanted a closer look at. As Emma leaned over, the woman asked me if she could hold her and when I said yes, her eyes filled with tears.

(if there's ever any social situation where you know you'd like to approach someone and talk to them but you're not sure how, leave it to my daughter to just stretch right over those walls with those tiny little arms)

She just stood there with tears in her eyes rubbing Emma's back while Emma played with her scarf. The woman started whispering over and over in Emma's ear

Jesus loves you. He loves you so much.

The other woman standing there and I swapped miracle stories and when Emma was ready to go, I think all three of us women had our hearts absolutely FULL.

I'm not sure the scenario would have had the same effect without a special Emma in the middle of it.

And you don't get a special Emma without all that comes with that.

So thank you for your prayers and support. God blessed my socks off this weekend.

Now go find YOUR blessing, too! :)

Emma update

For those of you who don't know, we've had a crazy couple of days.

Last Thursday, Emma had surgery to replace her ear tubes and have a sedated hearing test.

Her left ear was a bit of a challenge to get the old tube out and the new tube in.

Plus, the left ear showed WORSE hearing than 9 months ago. Neither the audiologist or I believe the results and she wants to re-do the test when the swelling has gone down.

And actually, I'm a little nervous. We've been thinking that she's acting like the right hearing aid is turned up too loud. The results of this test show that the right hearing aid is programmed correctly and the left aid is too quiet. If that's really true and we get the same results in a couple of weeks, then her theory is that Emma has a sensory input issue with sound. It's possible that she's tolerating the left hearing aid BECAUSE it's too quiet.

Ok, we'll cross that bridge when we come to it ...

But back to last week.

On Friday (Emma's second birthday), she woke up crying in the morning, which is strange for her. I went in to find little patches of blood all over her bed.

I picked her up and put her on the changing table to clean her up. While I do her diaper and stuff in the morning, I usually open up her Gtube also, just to let any overnight burps out. That morning, there was blood coming out of the tube.

There was also blood coming out of her ear and blood coming out of her mouth.

After trying prilosec and pedialyte to get the tummy bleeding to stop and drops to get the ear bleeding to stop, both unsuccessful, we went to the ER.

9 hours later, after seeing ENT and GI, it was decided that the ear bleeding is to be expected with the difficult tube placement. GI said that it was likely that she had some big retching coming out of anesthesia and it either cause some bruising or some tearing in her tummy. After 24 hours of pedialyte "gut rest," she was sent home.

She's not feeling super great, although now that we're getting those calories in, she's having bursts of Happy Emma again :) That makes me happy.

Thursday, November 11, 2010

Surgery's done

Well, the good news is that she now has new tubes in both ears. Those little ear canals are now big enough for "big girl" tubes, so hopefully we'll have fewer clogging issues.

The left ear tube had been grown over by some membrane of some sort, so that ear drum had to be messed with more than the other. The ENT said there was some fluid back there, so hopefully she's more comfortable now

But the surgery left us with a slightly inconclusive hearing test.

The bad news is that the right ear (which is the hearing aid we've suspected of being too loud) tested the same as before.

The left ear tested worse, but the audiologist felt that the way it tested worse was consistent with swelling from the surgery, so she wants to test again in 6 weeks.

yipee

But we're thankful that she made it through the whole thing safe and healthy and she's home and happy about it.

I'm exhausted. But we're doing ok :)

Wednesday, November 10, 2010

crazy week ... month ... year :)

Emma turns two this week!

We thought we'd celebrate by having surgery ... we're lots of fun like that.

This one isn't a big deal, just ear tubes cleaned and/or replaced, and then a sedated hearing test (ABR).

Our hope is that someday those little ears will get bigger and she'll outgrow her hearing loss. This is possible. It happens with CdLS kiddos all the time. I'm not sure if we are there yet or not with Emma, but it's nice to think that it's possible that we won't need those stinkin hearing aides anymore!!

So please, if you feel so led, pray for Emma's hearing?

Thanks :)

Oh, and while I'm posting ... yes, she got those ankle supports (AFO's). She hates them. She refuses to stand in them. So no, she's not walking in them yet. :)

We'll keep you posted as we get results from surgery!

Thursday, November 4, 2010

So now we have ...

"Why does her hair smell like BBQ sauce and pickle juice?"

And

"What are those things on her legs?"

To add to the usual

"Why does she drool so much?"
"What's the tube for?"
"She's HOW old?"

and

"Are those hearing aids?"

Oh, well

She'll show 'em once she's walking, talking, and eating, right? :)

I'll post pictures of Emma in her new AFO's and boots as soon as I can get her to stop crying about them. Actually, no, I'm lying, she did ok with them for about an hour tonight, but like anything, I'm sure it'll be awhile before Emma is back to "normal" with them on. Everything's an adjustment.

Other than that, we're fine. How are you?

:)

God bless

Monday, November 1, 2010

Fall

In between lots of medical stress and therapy appointments that seem to be increasing frequency at an alarming rate, we really have had a very nice autumn.

We found a cute little apple orchard this year with hay bales and a hedge maze and everything. Not too big or commercial, just a perfect place for a Charlie to play and an Emma to have a stroller nap :)














And we blinked and it was halloween!
Our church puts on a very fun Pumpkin Patch carnival every year and it was a blast, as usual. I LOVE my church family!!









Our Buzz Lightyear and our beautiful butterfly played and hopped and bounced and giggled until they could hardly hold their heads up. Today is a bit of a Halloween Hangover, but worth every minute of exhaustion!
Hope all of you stayed safe this halloween! We have a CRAZY week this week and by the time you hear from me again, Emma will have started feeding therapy and will also, hopefully, have some leg braces to help her learn to walk. LOTS of new and exciting stuff coming up ... I guess we'll sleep sometime in January :)