Tuesday, July 28, 2009

Ears, tractors, and sibling love

First an Emma update!

We had a visit to our friendly neighborhood audiologist today. She did a behavioral hearing test with Emma both with and without the BAHA (you know, the one where we sit in an eerily quiet room and she makes noise through speakers?).

With the BAHA, Emma responded to sounds all the way down to a pretty quiet decibel (I forget the number, but she was happy with it). Without her hearing aid, Emma responded to very little. Because this type of hearing aid is helping her so much, our aud. is pretty convinced that Emma's hearing loss is only conductive, which means that sound isn't getting into the ear but once it gets there the nerve and such are just fine. (if you know me in real life, I've probably accosted you with the suggestion that you try her hearing aid and you know what I mean:))

We took this as great news because, a) we actually got her to cooperate in a test in a way that gave us meaningful results, b) hearing more sounds everyday consistently is hopefully helping her development in this area and therefore her behavior was such that she could demonstrate that she was hearing by looking or quieting or whatever, and c) we still have hope that once Emma's ears are big enough we can get tubes in there and not deal with hearing aids after that!

Next I need to whine a minute about feeding. Her gums look awful and red and a little bloody from the two front teeth working their way through, so she is NOT a fan of me getting a spoon in her mouth right now. We were doing so well! I'm being persistent, trying at least 3 out of 4 meals every day, and actually she does really well if I give her a spoon with rice cereal on it and let her feed herself. It's messy, but food gets in! Wonder what OT will think of the plan?

Finally, her balance is getting so much better. She's still not sitting well enough that I could sit her on the floor and walk away, but she really enjoys practicing and she's getting close! And actually, she reached for Charlie's tractor today so I let her "stand" and explore that for awhile and I was able to let go of her for 10 seconds or so while she held on to the tractor and supported herself "standing"

Charlie seized his opportunity:

"Can she push me in the tractor?"

"Ummmm ... we can let her try, if you want"

But of course when she got tired of this standing practice, she just let go and did a ... ummm, "trust fall" with Mommy (luckily Daddy had the camera for this adventure)

What? Don't your children run around without shirts wearing helmets?
Actually, Charlie and Daddy bought the helmet in preparation for going biking on their camping trip this weekend. I'm excited for them!!
That clarifies why he had to wear it all day today, right?

Charlie has been asking for Emma to ride his tractor with him ever since she came home from NICU ... she loved it ... really ...

They still very much enjoy this game

And she's getting better at it

Charlie plays "toesies" with Emma. It's like he's trying to tickle her toes with his toes. Very cute. And helpful, I think, as Emma still hasn't really "discovered" those feet yet. But I don't know, with those short little arms, will she grab for them and stuff? She stares at them a lot, does that mean anything?

Charlie playing "Clap your toes, all you Emmas" There's a song ... clap your hands, all ye people! Shout unto God with a voice of triumph ... anyone? no? well, it sort of evolved ... yeah, I'm an at home mom, I have songs about "Cheese glorious cheese " (like from Oliver?) and Bathtime and ... anyway
Charlie isn't wearing pants

any questions?

we're potty training and he's decided he can just run to the bathroom and do it all himself: "I'll be right back, you stay here, Mommy"

No pants is really the best policy at the moment.


this is her "did you see that? Big Brother Charlie loves me" smile

"Mama, you ain't seen nothin yet!"

Thursday, July 23, 2009

Big day!

All of my family members are setting my world on fire today

hee hee

pardon me, i often laugh before i get to the punch line


Charlie (i know you all totally want to know this!) put poopers in the potty for the first time today!!! He was so proud! For awhile now, he's been in underware full-time and has never had an accident. But a couple times a day he would come to me and ask me for a diaper because he had to poop. He would hold it until the diaper was on, then run to his tractor (for reasons known only to him) and poop and run back and tell me he was ready for underware again. I would, every time, tell him that someday he would need to start putting poopers in the potty. His response was always, "Yes, someday when I get bigger I will put poopers on the potty."

Remember, however, that he also plans to "drive when he gets bigger."

hmmmmmm ... was really hoping the "gets bigger" timeline clarifies itself to the little dude soon ...

So today he told me he was going to go potty all by himself. He turned on the light by himself, got undressed by himself, climbed up by himself (remember?) and asked for some privacy. After awhile, I heard the tell-tale plop.

I ran in to congratulate him.

Looking into the potty, he announced with a big smile, "Mommy, I got BIGGER!"


With the encouragement of some CdLS friends (and not with the permission of her therapist ... so sue me), Emma sits in her Bumbo and eats rice cereal for every meal!! Our OT has been saying we could take things slowly (trying oral eating one meal a day), but I believe in consistency and because of scheduling issues, we can't see our OT for a couple of weeks, so I'm taking the bull by the horns and doing it! It's going really well. We're not anywhere near lowering her pumped volumes or anything, but she's really enjoying being involved in family meals.

And this morning, when I was doing some oral stim stuff, I put my finger along her gums and CHOMP, Emma has her first tooth!!!


Finally, those of you who we know on Facebook already know this, but we had some excitement here this evening.

Trying to light the outside grill for burgers wasn't working.

More matches weren't helping


The brand-new tank of propane shot up flames!

Charlie got to see his very first fire-truck close up.

Evidently when Someone doesn't tighten the tank to the grill tight enough, the gas pressure isn't enough to get the propane to the grill and the fire can make its way back down the hose and the tank can ignite. We are apparently quite lucky that the tank didn't explode.

Everything's fine, no one was hurt, the Eagan fire dept has a great response time.

Pizza for dinner!!!! :)

Tuesday, July 14, 2009

Monday, July 13, 2009

This one's for Hartley!

Once again, this "reading" from the boy is probably not all that interesting to anyone but grandparents, but that *was* the original purpose of this silly blog, after all!

And so, we bring you, the MUD book, by Mary Lyn Ray:

Saturday, July 11, 2009

Check this out!


I swear I was praying and just had this weird urge to listen to David Crowder so I typed it into youtube (because my CD's all the way downstairs and I'm lazy like that) and found this very awesome video.

May God's Holiness overwhelm you today!

Friday, July 10, 2009

one more thing

I hesitated putting this up on my blog, but it's good so I wanted to share it: This is a link to a post of Staci's over at Mi4Boys about a "Bill of Rights for Parents of Special Needs Kids."

Here's why I hesistated, and I know it sounds dumb; I don't really feel like I deserve this yet. I haven't had too many run-ins with rude people; we don't have 20 hours of therapy a week yet; Emma wasn't born with differences that bring on stupid questions from ignorant people; she's still young and little so it's not obvious if she's not doing something she's "supposed to" be doing. No other kids ask "what's wrong with her" at the playground ... I kind of feel like I haven't earned my Pinot Grigio yet :)

So please follow the link and read the article because it's good, but also do me a favor? If you've got 10 minutes, spend a little time getting to know one or more of Emma's little friends? They are awesome people.

Funny Friday

I think Charlie just instinctively knows when it's been awhile since I've blogged about him and turns up the cuteness factor a notch.

Last night after dinner, Charlie was on the floor playing with his cars, I was sitting next to him and Daddy and Emma were sitting on the couch. Josh noticed that Emma was making a funny face. I told him that she makes that face when she pees. He raised one eyebrow and asked me how on earth I knew that. I told him it was just one of those things Mommys learn about their little ones.

Josh shook his head and said, "That's disturbing on so many levels."

Charlie, who we sort of assumed wasn't listening, looked up at me with wide eyes, shook his head and said, "SO many levels."


Later I did some laundry. Charlie was looking for me, and Daddy was changing a diaper so told him to just go find me. Charlie took off around the house, singing in true Veggie Tales fashion,

"Oh where is my Mommy? Oh where is my Mommy? Oh where oh where oh where oh where oh where oh where oh where oh where oh WHERE ... is my Mommy?"


I am, for some reason, infuriatingly (that's TOTALLY a word ...) unable to embed a YouTube video in my blog. WHY????? But if you're not familiar with Veggie Tales follow the link

Anyway, the sun is shining, the birds are singing, the house is clean and my kids are cute. Life is good! Have a great weekend

Tuesday, July 7, 2009


As Charlie has begun chanting during meal times, "Go, Emma, go! Go, Emma, go!"

We had an appointment with our wonderful pediatrician this morning and Emma is gaining nicely. She had stalled for a couple of weeks, there, so I was a bit concerned, but now we're off and rolling again with a very nice weight gain up to 10 pounds!

Other than that, she's got a bit of a sinus infection (what? you're telling me rice cereal out her nose is a bad thing? huh.), so we're doing a round of antibiotics. Apart from that, she's doing great, though!

Now, you understand that I LOVE our pediatrician and would have asked her if she wanted to hang out sometime a long time ago if that weren't a little weird, but I just have to put something out there: why do people keep acting surprised and commenting about how "alert" Emma is? She's 7 months old! Is it because she's only 10 pounds so it surprises people to see her acting as social as an older baby would? I'm guessing that is the case and am therefore not offended, but I have to wonder in the back of my mind if professionals who have heard of/read about CdLS but never met a child before expects them to be, well, not as 'responsive' as Emma is? It makes me want to scream, "She's just a baby! Expect her to act like a 7 month old baby!"

But then I guess she's not "just" a baby. If she were just any ole baby, I wouldn't be nearly as excited as I was yesterday when she sat independently for about 30 seconds! We're WAY more blessed than "just a baby" :)

Wednesday, July 1, 2009

3 posts in 1 :)

Our Charles Monster hasn't been feeling well lately, so I've neglected the blog for awhile. What follows are all the posts I've written in my head between now and last week :)

Post #1: A sight most Mommies take for granted

She's eating! :)

"Gimme that, Mommy!" :)

You can't tell, but in this last picture, Charlie is asking Emma "Are you eating?" with signs. He's totally getting into the signing and talking to Emma with her hearing aid.
It's a little funny, actually; I can tell that I have been more chatty lately now that I know that Emma is hearing me and Charlie is TOTALLY picking up on that annoying Mommy narative voice that we all do ... reflected in your 2-year-old, it's a little odd. For example, he makes his voice go higher and asks me over breakfast "Mommy, are you eating a bagel?" with emphasis on the last word, just like you would with a baby. hmmmm...
Anyway, the eating is going great. She takes about a tablespoon of rice cereal or whatever during a sitting, which we do during a tube feeding so that regardless of how much she actually gets in she gets the sensation of being full after eating. I know, we have a long way to go, but her palate hasn't been repaired yet anyway, so I'm not terribly impatient, just loving that she's doing what she's doing. She is LOVING it so far. Big rice cereal-filled smiles.
Post #2: Oh, the people I've missed.
I'm so glad I went to yoga last night.
There was a woman next to me in my class with arm differences that reminded me a lot of some of Emma's CdLS friends. She quite obviously did NOT have Cornelia deLange (no cute button nose:)), but I couldn't help but notice how she moved and worked through her limitations. She had some yoga blocks and did the Downward Dog poses on her elbows and even got into some of the bound warrior positions (if you're not familiar with yoga, to put it simply, she was kicking my butt!).
So usually after class people make small talk with the person next to them. I'll be honest, a year ago I would have been too ... something ... to talk to this woman. I would have pitied her, shook my head, and walked away, maybe being just "noble" enough to say a prayer thanking Jesus for my 10 fingers and toes, but that's about it. (sorry) Last night I looked at her and told her she was awesome. She was about my mothers age, all 6 fingernails manicured and a wedding ring on the middle finger of her left hand. She blushed and thanked me, and I told her that I had a daughter with a syndrome that often results in limb differences and that it had inspired me to watch her kick my butt at yoga. She laughed and thanked me for saying that and then we walked out to the parking lot and talked about the class and the weather and nothing of consequence, and she asked me about Emma. I told her that I've come to realize that Emma will do things her own way. She told me about her dad advocating for her while she was in school.
Anyway, I once again felt blessed to be a special needs mom. I hope this post doesn't sound too much like bragging about how much I've grown or anything like that. I really honestly am grateful for the world that Emma has opened up to me. Remember this? It's such a journey and I know I still have a long way to go ... maybe it was awkward for me to talk to her like that, maybe not, but I was/am blessed.

Post #3: A Really Good Book
I don't have a lot of time to read so I don't have a lot of "book recommendations" posts, but if you get a chance, pick up Richard Stearn's book "A Hole in our Gospel." Rich Stearns was a CEO for a fine china company 10 years ago and now he is the president of World Vision. This is his story about his dramatic career shift and faith testimony as well as his reflections about the way the Church helps (or fails to help) the poor around the world. It's helping me think a lot about what walking with Jesus is really supposed to look like.
There! A 3 for 1 deal. :) God bless you, have a good night