Saturday, October 29, 2011

Down Syndrome Clinic

Yesterday we made the trek up to Charlottesville for Lily's appointment at the Down Syndrome clinic. We didn't really learn anything new, but it was good to talk to the developmental pediatrician there and have her observe Lily.

We did have a very interesting discovery during the visit. Lily was wearing her sleeves/mittens as usual, and at one point we took them off so the doctor could see what she could do with her hands. The first thing she did was scratch her ears (typical). But then she realized that it hurt, started wailing, and could not be consoled. It seemed like she really didn't understand what had happened! Her usual comforting behavior (batting her ears) had produced pain, and she was SO upset and confused. But it didn't seem like she realized that her hands had caused the pain. After a few minutes we put the sleeves back on and she calmed right down, because batting her ears with the mittens on didn't cause pain.

It seems like she has developed a kind of dependence on the mittens, and when she's not wearing them she gets more stressed and agitated. This helps explain why some of her therapy has been getting harder, because we take her mittens off during those times. We're not real sure where to go from here, but the doctor suggested we may need to try a teeny, tiny dose of anti-anxiety medication if she can't relax when her hands are uncovered. Please pray for us for wisdom on how to deal with this situation.

I will leave you with a few pictures...
Lily's glasses:
Lily wearing her glasses:
Lily passed out on Daddy today since she didn't take a nap...

Tuesday, October 25, 2011

Progress Report

Blogging once a week is enough for ya'll, right?? Just kidding, I am really going to try to get better at updating.

Here is what Lily has been up to these days:

  • Cruising! She can officially cruise along furniture, and even transfer from one piece of furniture to another.
  • Climbing the stairs: she can go all the way up, and quickly!
  • Climbing on top of every box she can get her hands on.
  • Taking food from a spoon instead of her Nuk brush. She swallows some of the time, and only some of the food. We're still working on getting her to move the food from the front of her mouth to the back.
  • Trying to drink from a straw. She doesn't know how to close her lips all the way around it yet, so she can't get much liquid and gets frustrated easily because she knows it's in there :)
  • Pushing a stool around in the kitchen-both on her knees and on her feet! This girl is gonna be walking soon.
  • Saying "Ba-ba" for "bottle".
  • Signing "eat" with help.
  • Taking her glasses off as soon as I put them on. This is the reason I don't have any pictures of her wearing them yet :)
Every day seems to go by slowly, but every week goes by quickly! I don't know how that happens. This Friday we are headed back up to Charlottesville for a Down Syndrome clinic. We're not staying overnight, just up and back for Lily's appointment. I am hoping to get her chromosomes karyotyped so we can learn what type of DS she has, and also an x-ray of her neck to make sure she doesn't have any issues with her spine there (this can occur in children with DS).

Tuesday, October 18, 2011

"Temper Tantrums" by Lily

Remember how I said Lily has been cranky lately? Here is what happens when she doesn't take her afternoon nap (which she hasn't done in several days):
video
I'm laughing in the video but it's really very frustrating because she will go on like this for HOURS. Today I decided I needed to find some humor in it, otherwise I'd go crazy...hence the video. Enjoy :)

Sunday, October 9, 2011

More Firsts And Lots Of Pictures

On Friday I took Lily to the pool for the first time. I didn't get any pictures because, well, I can't keep my camera dry and keep up with Lily at the same time :). She enjoyed it and we'll definitely be going back! One unexpected surprise was running into one of my former students there, who is working as a lifeguard. She's a sweet girl and it was really good to catch up with her.

On Saturday we took Lily to the pumpkin festival at Sinkland Farm and we had a great time!
Riding on Daddy's shoulders:
Petting a horse:
And a mule (or donkey, I don't remember):
Her first pony ride:
With Kerry on her first hayride:
Checkin out some pumpkins:
With Mommy on the hayride:
I got Lily some sneakers with good ankle support to help her with standing & walking. Children with low muscle tone often need that extra support. It took Rob & I about fifteen minutes to get them on her and she was screaming the whole time. She's probably never worn shoes like these ever before and she didn't know what to think. After they were on she was fine, however...
See, Lily, shoes aren't so bad...
And they can help you stand!
One prayer request: Lily was just plain crabby today and we can't figure out why. I feel like I need another weekend with Rob home but of course it's Sunday night and he goes back to work tomorrow. Please pray for extra helpings of patience for me as I'm home with her all week and less fussiness for Lily, and if there's something wrong then for us to figure out what it is. Thanks!

Wednesday, October 5, 2011

Lily Loves To Swing!

"Pssst, I want to tell you a secret..."
"Swinging is fun!"
"Really fun!"
Here is the best video I've got of her laughing:
video
And she started cruising on tall knees today:
video

Tuesday, October 4, 2011

Patching: No, Glasses: Yes

Lily had her eye appointment this afternoon and we got some good news and some less-good news. By the way, no one told me to expect this appointment to take two hours! Who knew it took so long (30+ minutes) for eyes to dilate (I really didn't, I've never had glasses)?! Thank goodness I brought an extra bottle for entertainment.

Anyway, first the good news: Lily has no signs of cataracts or blocked tear ducts. The doctor also didn't see her right eye turning inward and didn't see any signs of one eye being weaker than the other. In other words, we don't need to do any patching right now. Yippee!!!

The less-good news: Lily is near sighted and needs glasses. Apparently the lens of her eye is near sighted, but she has a stigmatism (shape of the eyeball) that is far sighted, so they sorta cancel each other out, but not really. Hence the glasses.

We ordered this style frame (Miraflex Baby One):
In this color:
I decided to go with pink so people will stop thinking she's a boy. That, and I had to make a decision so fast and wasn't prepared to do it today, that I just went with the obvious color.

I have some seriously mixed feelings about Lily wearing glasses. I've known that she would likely need them at some point, but I was REALLY hoping that it could wait until she started school. I guess I just feel overwhelmed with everything else we're trying to do (teach her to eat solid foods, teach her to walk, stop her ear-scratching, etc), adding "keeping her glasses on" to the list is not very appealing.

That, and I'll just be completely honest here...brace yourself...I'm not sure if I'll like how she looks in them. Will I think they are cute, or will she just look silly in them? I feel like I am going to miss her face somehow, because it will be hiding behind the glasses. I like her without glasses. There, I said it. Can anyone else relate??

But of course I want her to be able to see clearly. That is something that I have taken for granted all my life, having "perfect" vision.

Mixed feelings indeed...

Monday, October 3, 2011

Sunday, October 2, 2011

Week In Review

Wow, I've been a terrible blogger this week. I don't really know why, there has been plenty to talk about and I've had time (maybe not plenty of time, but time). I don't know what my excuse is! I do know that I tend to blog less when I feel more isolated, which of course doesn't help...you'd think it would be the other way around! Anyway, here I am :)

Today is Lily's Three-Month-Home-iversary! She's had a lot of firsts this past week: I took her to the playground for the first time and tried her out in the swing, and she loved it! She had her first two playdates with friends from church. She learned to climb the first two stairs. She had her first hearing test and she can hear normally!

We've also been working on eating solid foods. Every day I dip her Nuk brush in some Stage 1 baby food (today it was pears), then "dive" in and try to get some on the back of her tongue.

I do this two times and then we stop. She isn't crazy about it but we aren't having any tears, either. It's hard to tell if she swallows much of it, but the idea is to keep putting food in her mouth and she'll at least "accidentally" swallow it some of the time, and eventually figure out that it's good! She now tolerates me "tickling her teeth" with the Nuk brush, so long as there's no food on it. Occasionally she will put the brush end in her mouth intentionally and chew it a few times before returning to the plastic handle. Slow but steady progress!

She has finally started pulling to a stand again (since her heart surgery). Her favorite spot to do this is IN the bathtub. With water in it. Yup, REAL safe, lol! But hey, she is standing!

I think that sums up our week pretty well. This week Lily has her first vision test, and to be honest I am NOT looking forward to it. Please pray for good news (ideally: no glasses or patching, but it's likely she will need both). Thanks!