Wednesday, December 26, 2012

Dual Diagnosis

A new diagnosis is hard, but that's what we've got for Lily: She has been diagnosed with autism, often called a "dual diagnosis" of autism and Down syndrome. For short: DS-ASD.

Autism often presents a bit differently in individuals with Down syndrome than in individuals without DS. Here are some things that we notice in Lily that indicate autism (note that one or some of these things don't necessarily indicate autism, it is the combination of all of them together):

~Sensory issues: Lily is a sensory-seeker. She doesn't respond appropriately to pain. If she falls and bangs her head, she often laughs. She loves tight hugs and being thrown around in the air. She is fearless, and that can be scary at times. She is still very oral and obsessively mouths objects all day long.

~She is picky about food textures. She doesn't like mushy food, such as oatmeal or ice cream. She needs to feel something in her mouth in order to try to swallow it.

~Self-stimulating behaviors ("stimming"): Lily has lots of stimming behaviors. Mouthing objects is a stim for her. She flaps her hands when she is excited, which is a classic autism behavior. She rocks when she is tired or upset and is trying to calm herself. She puts her head down on flat surfaces and rubs her hand on the surface to feel the vibrations. She will put her head down on the floor and bang a toy right next to it to feel the vibrations.

~She will stare at her hands (another classic autism behavior), as this picture illustrates:

~Lack of imitation skills: Lily has not learned to imitate. The ability to imitate is essential to learning.

~Lack of joint attention skills: This is the ability to follow another person as they point out and discuss an object of interest. Again, this skill is essential to learning.

~Apparent lack of receptive language: This just means that it does not appear that Lily understands most of what is said to her. After almost 18 months home, there should be no language barrier. She will occasionally respond to her name, but that is a relatively new skill and she does not do it consistently. I would say she almost never responds to it unless we are at home.

~Lack of expressive language: Although recently Lily has learned to sign 'more' to indicate when she wants something, overall she has very limited attempts at communication. Her language abilities are one of her weakest areas.

~Lily does not point to indicate when she wants something, nor can she follow a point from someone else.

~Zero imaginitive play. All of her play is sensory-seeking.

~Strange obsessions: For example, Lily is obsessed with turning over chairs and small tables. Once she gets something into her head, it is very difficult to redirect her or get her attention on something more appropriate.

~She all but completely ignores other children, except to try to hug them :)

Some things about Lily that are NOT generally associated with autism, and might be attributed to her Down syndrome:

~She is very snuggly and gives great hugs. She seeks out physical affection from adults, but is indiscriminate between us and strangers.

~She recently learned to enjoy peek-a-boo and that is now a sure way to get her to smile and giggle :)

~She does not have a problem with transitions. If another child takes away a toy she is playing with, she just moves on to the next one. She very rarely has meltdowns. In many ways she is very easy-going.

~While she does best with a routine, she is not thrown off by changes in routine.

So what now?? Well, Lily is already getting speech therapy, occupational therapy and physical therapy. We are now pursuing adding ABA (Applied Behavioral Analysis) therapy, which is the 'gold standard' therapy used for children with autism. It teaches imitation and joint attention skills, which are crucial for Lily to learn. Unfortunately it is often a fight to get insurance companies to pay for ABA therapy, so you could please pray for that to go smoothly.

In the meantime, we are just enjoying our sweet, giggly, cuddly wild-child... Lily Anna :)

Sunday, December 2, 2012

Monday, November 12, 2012

Time For An Update!

First things first....

It's A Girl!!!!

Lily is going to have a baby sister :)

The last few weeks Lily has had a communication explosion. She has mastered signing "more" (FINALLY!) and uses it for everything. She will come to me when she wants something and sign "more"...sometimes I have no idea what she wants!! But still, this is a HUGE breakthrough for her: she knows that if she wants something, she can come to me (or Rob) and tell us. 

Last weekend we went to visit the Suttles family. They adopted Alanna from the same orphanage just a few months before we adopted Lily! We joke that Lily and Lanna are former roommates :)  While we were visiting, Cara (Lanna's mom) got a few great pics of Lily:

Love these!

Lily giving Lanna a hug :)

We took Lily to her ENT doctor last week and she is scheduled to have a full sedation on Dec. 7 so they can clean out wax, drain fluid, possibly place tubes if the fluid is really thick, and do an ABR (auditory brainstem response) hearing test. Her behavior-based hearing test in September indicated some mild hearing loss (which we suspected), so we are hoping it's just fluid/wax. I'm also hoping that this will help her speech/language development when she can hear properly.

Wednesday, October 3, 2012

My Friends Are Adopting!

I'm so excited to share this with all you Lily-fans out there...another family from our church is adopting internationally!!! We were the first family from our church to do this, so we are excited to maybe have started a trend :)

Please check out their blog:  They are adopting a girl from Ethiopia and have a *lot* of funds to raise. If you can help them in any way, it would be SOOO appreciated.

Thursday, September 27, 2012


About a week ago, I got SUPER lucky enough to catch Lily playing peek-a-boo on video! This is also the first (and thus far, only) time she has smiled and laughed while playing peek-a-boo with the laundry basket. Playing peek-a-boo is a developmental achievement for Lily--we've been working on it with her ever since we got home 14 months ago!

Enjoy the video :)

Saturday, September 22, 2012

Lily Has A Big Announcement...

Yup, I am PREGNANT! Due March 7, 2013 :)

Baby StClair at 12 weeks:

Some people have asked me if Lily knows she is going to be a big sister., lol. She barely understands "No", she definitely has no clue about the baby. But she's very easy going, so we don't really anticipate any problems with jealousy, etc. The only problem I can foresee is if I'm holding the baby and she wants me to pick her up and I won't be able to. So I plan on using a baby carrier for new baby as much as I can, so that both hands are free for Lily :)

Monday, August 6, 2012


A few people have asked what our plans are for preschool for Lily. She will be starting in two weeks (I CAN'T WAIT!!!), and will be going Mon-Thurs mornings. She will have a para (one-on-one aide) and also get all her school-based therapies there (physical, occupational, and speech therapy). It's going to be great! I have been looking forward to it ALL summer.

I have felt like this summer was hard, not having any therapies or school environment. I really don't think it's best for Lily to go all summer with nothing. So, next summer will probably be different :). I don't know exactly what I'll be able to work out, since summer school has been completely cut from the budget, but there's got to be SOMETHING, maybe some camps?? We'll see. Right now I'm hoping and praying that she makes a lot of gains this school year.

Saturday, August 4, 2012

Still Here!

First of all, thank you for all your comments recently wondering if everything is ok with us and Lily. Everything is just fine :)  I've just been...out of blogging mode. I don't know why. But it was nice to keep getting comments and I feel I owe everyone at least a quick update.

Lily is doing great. She has been pretty healthy all summer, and has really taken off with walking. She prefers to walk over crawling now, and now that she has mastered standing up in the middle of the floor without holding onto anything, she walks whenever she wants to go somewhere. She still isn't great at standing, and her gait is pretty clumsy, but she's getting better. We've been hitting physical therapy really hard this summer, in hopes to get her walking really well before preschool starts.

The only problem we're having with walking is that, since she is still fascinated with textured surfaces, she often wants to plop down in the middle of the sidewalk or parking lot (or street--ack!) so she can touch it. Obviously that can be a safety issue, so we are exploring getting a handicap tag so that we can park closer to wherever we're going.

This summer we've also been working on teaching her to drink from a straw, and she's doing really well with that. No more sippy cups!

In June we took swim lessons and Lily loved them. She LOVES the water. We might take some lessons again in the fall, too.

I'll leave you with a recent picture--her hair is getting so long!

Friday, April 27, 2012

Well, That Was Fun.

Please note the heavy sarcasm in this post's title. The events I'm going to share with you were most certainly NOT fun.

Oh, where to begin...

Just a few days after my last post ("Lily Eats!"), Lily started acting sick. It was Good Friday, actually, she woke up and was cranky and rocking a lot, which she usually only does when she's tired. She also didn't have much for breakfast that morning, but sometimes that's just how she rolls. She had an eye appointment that morning so we had to get moving pretty quickly. She was more subdued than usual for the whole thing, and then fell asleep in the car afterwards (VERY unusual for her). At this point I wasn't too worried...

Then she slept until lunch. Then she slept through lunch without eating lunch. Then she slept all afternoon, all evening, and all night without eating anything since breakfast. I started to get worried about mid-afternoon. I decided to take her to the doctor the next morning.

So the next morning (Saturday) we got up...and she seemed a little better. She was more alert, ate a decent breakfast, and was playing a little bit. I decided to hold off on the doctor (a fact which I regret now!). She did ok until just after lunch, when she went down for a nap, and basically didn't wake up or eat for the rest of the day. She also had a cough and a low fever.

The next day was Easter, and I still didn't think she was ER-sick, so we went on with our plans but Lily slept the whole day and barely ate anything. Decided to see the doctor first thing Monday morning.

Monday, April 9, we saw the doctor in the morning. She listened to Lily's lungs and declared she had pneumonia without sending us to get an xray. Lily's O2 sats were low for her, never getting higher than 87% in the office, but the doctor wasn't sure that we were getting an accurate reading. She gave me the option of getting admitted to the hospital or coming back the next morning. After much consulting, we decided to come back that evening and in the meantime give Lily some nebulizer treatments at home.

That evening we went back, her cough was worse, her O2 sats were no better, and they decided to admit her. So Lily got her second ambulance ride. I must say that it was not nearly as cool as her first because we didn't get the cool pediatric transport unit, just a regular ol' ambulance :)

That was a looong night. After getting admitted, they couldn't get Lily's sats to stay above 90. Finally at 4am they transfered us to the PICU so that she could get more oxygen support. I think I got about one hour of sleep that night.

The next morning, Tuesday April 10, after a rough night
We learned on Tuesday that she did NOT, in fact, have pneumonia, as evidenced by a chest xray. She had bronchiolitis caused by a viral infection.
The morning of Wednesday, April 11
Except that on Wednesday, she developed a high fever and guess what? ALSO got pneumonia on TOP of the bronchiolitis. Sigh. They started her on antibiotics that day.

On Thursday morning, her sats were still not doing great, so they had to put her on a ventilator. She had to wear this bonnet to hold the mask tightly over her nose, and she was NOT a fan...
"I'm taking names..."
Poor little girl could NOT get comfortable with that mask on. She was so tired she would fall asleep sitting up (the only position she wanted to be in), and we put pillows around her to help prop her up:
"I'm tired and I know it..."
I think it was on Thursday that they also put an NG tube in to feed her because she wasn't eating much. And I don't think she was allowed to eat by mouth with the high amount of oxygen she was using.

Thursday night was the worst...she couldn't get comfortable. Finally around 3am I had the idea to strap her in a chair so she could sleep sitting up:
She had the Bipap mask on for two days. Finally on Saturday morning they took it off for a break, and that day she really turned a corner. She smiled and started playing for the first time in a week:
Saturday morning, April 14...playing!
The next few days were spent weaning her oxygen down enough to get out of the PICU. I think this picture was taken Sunday evening (all the days kind of blur together):
"Can I go home now?"
On Monday, April 16 we got to leave the PICU!!! Then we spent one more night on the regular floor before getting discharged on Tuesday, April 17.
"This new room is nice but I'm ready to be home..."
So that's what we've been up to. Lily is now officially diagnosed with Reactive Airway Disorder. She's using an inhaler twice per day now, and is back on Lasiks all to hopefully prevent this from EVER happening again.

Tuesday, April 3, 2012

Lily Eats!

Lily has had some break-throughs in eating lately. Over the weekend she ate about a quarter of an apple, pepperoni, ham and sausage pizza toppings. Tonight she ate hotdogs, mac & cheese, and raw broccoli for the first time. Here's a short video from her dinner tonight:

Lily has been home 9 months! I guess that's how long she needed to learn to eat solid foods :)

Wednesday, March 14, 2012

Party Pictures

Here are some pictures from Lily's birthday!
Her birthday outfit:
Birthday dinner at Olive Garden--She ate breadsticks for the first time!
Yummy cake:
Lily "blew" out her candle by putting her hand on the flame. No, I'm not kidding. Her hand is fine.
First taste of cake (please ignore my funny faces):
This is her typical reaction to new food:
She got excited when she saw the spoon with ice cream...
Little did she know how cold it would be...
All in all, it was a great birthday. Happy Birthday Lily, we love you!