I know, I know. No posts in forever. "Where are the pictures from Lily's first Christmas?", "What's going on over there?" you say.
I'm getting there. The pictures will come, promise :)
Honestly, I have been trying to figure out why I'm not blogging as much. It puzzles me. But I think the reason that posts have become fewer and far-between is because Lily is getting bigger, stronger, more active, and more demanding of my attention. Especially the last one.
I do have a plan, have been working on it for a while, but it has yet to be implemented. I will explain all when it does get implemented, which should be SOON, and trust me I am ready for it to get started :)
PS-The only reason I managed to type this is because Lily has been occupied with a laundry basket for the last 15 minutes. A miracle.
This morning I took Lily for a follow-up visit with her cardiologist. We got some good news and some bad news.
First the good news: she can stop taking the Lasix! All four chambers of her heart are the correct size and shape. Her tricuspid valve no longer leaks. Her mitral valve still leaks, but that's not a big deal.
The bad news: since her tricuspid valve no longer leaks, they can't use the pressure of the leak to estimate the pressure in her pulmonary artery. This means that there's no way to know if her pulmonary hypertension is gone without....
Yup, this summer Lily will need to have another heart cath surgery to measure the pressure in her pulmonary artery. From what the doctor could see today, it *looks* like her PH is much better, maybe even gone. But there's no way to know for sure. So they are waiting until one year post-repair to do the heart cath to check. Until then she will stay on the Sildenafil (boo), but hopefully the heart cath will show no more PH and she can stop taking it by the end of the summer.
Today I experimented as much as Lily would let me, and this is what I got:
Unfortunately it only stayed in for about an hour. Still cute, though :).
This afternoon Lily didn't nap, and the weather was beautiful so I took her to the park and pushed her on the swing for a looooong time. At one point while swinging, completely unprompted, she CLAPPED her hands TWICE!! I almost fell over! Of course I couldn't get her to do it again, but still that is the FIRST time she has done that! Then when we got home from the park I gave her a bottle, and naturally she fell asleep. She even STAYED asleep, and this is how she ended up when I put her in her pack and play:
Completely folded in half like a taco! I have no idea if she is down for the night or just a few hours, but she is clearly SO exhausted that I think it's best to let her sleep.
Lily has been home four months today! Here is a short list of things she's learned to do since coming home:
Stand and cruise
Help put on her shoes and shirt
Say "Ma-ma" and mean me
Say "Ba-ba" and mean bottle
Shake her head "no" (but without the meaning behind it...yet)
Wave her hands
Occasionally tolerate getting her teeth brushed
Climb onto things, especially stairs and boxes
Shake toys to make noise
Bang toys on the table to make noise
Scribble with a marker (with some guiding)
Touch her lips to any food we offer her
Drink things that are cold
Occasionally swallow some solid baby food from a spoon
Smile and giggle
"Dance" by bending and straightening her knees repeatedly
Turn pages of a book
Sign "eat", usually with help
Touch everyone's nose
Fuss when things don't go her way :)
Today we went to a new playgroup and met several other moms & their kids. This is one of the few times that I've gone somewhere with Lily where the people I was with didn't know her story or anything about her. It was my first experience fielding a few hard questions. I know these moms didn't have any malice behind their questions, they are just uneducated. Here were their questions and my answers...I hope I did ok.
"Is your daughter mentally handicapped?"~~ My answer to this was just, "She has Down Syndrome".
"Her face looks funny" (from a 3-year-old)~~ In response I said, in a silly voice, "Well YOUR face looks funny!" and they all giggled. I'm pretty proud of how I handled that one :)
"Did she cost less to adopt because of her disability?"~~ I explained that *she* didn't "cost" anything, the money went to other expenses. I also explained how children with special needs are not usually adopted in their own country, so it is "easier" to adopt a special needs child (usually), especially if you want a young child.
This was more of a comment: "I saw a documentary on kids in orphanages in Romania and I thought, 'Wow, I could give love to a child like that', and here you are living it!" I didn't quite know how to respond to this, but as I thought about it later (and if we'd not been in a cramped living room full of loud adults & children) I was surprised by what I would have told her: I would say, "Adoption is a huge blessing and a challenge, but it's not for everyone. Before you commit to adopt, please do a lot of research and reading about what it's like to parent an internationally adopted child". So now I'm ready for next time :)
With our new discovery of Lily's anxiety regarding her sleeves, we did what any normal, research-oriented parents would do: we started experimenting.
Experiment #1: On Sunday evening we took her sleeves off completely for an hour, and she totally lost it. She could not calm down, would not stand or play, would not smile or laugh, etc. Periodically she would look at us with a panicked expression and bust out wailing. It was bath time and even THAT didn't calm her down. So after the bath we put her sleeves back on, and within ten minutes she was fine: standing, cruising, smiling & laughing.
Clearly cold-turkey is not the way to go.
Experiment #2: On Monday morning I un-mittened her right hand. I chose to do that hand because she scratches more with the left. She has had that hand free for almost 48 hours now, and has done just fine. She has been scratching at her ear a lot and it does have some cuts in it now, but she has been herself and not panicky. I filed her nails this evening to see if that will help minimize the damage to her ears.
Experiment #3: At dinner this evening, Rob un-mittened her left hand so that she had both hands free. For a minute or two she was ok, but then she got that look of panic again and started wailing. She didn't even scratch herself this time! So we re-mittened her hand and she calmed down after a few minutes.
It seems like her anxiety is tied to her left hand being free, not the right. Tomorrow I'm going to try having her right hand mittened and her left hand free, just to see what happens. My hypothesis is that she'll panic. I'll let you know how that turns out :)
The next thing we're going to try is to buy some thin gloves and put one on her left hand. Hopefully she will be ok with that, and then she will at least be able to move her fingers independently and work on her fine motor skills. If that goes well, then I think we'll start cutting off fingers (in the gloves) one at a time, until all her fingers are exposed. If THAT goes well then we can try taking the gloves off completely. I feel so much better having a plan.
However, we still have the issue of bloody ears. Please pray that God would somehow speak to her heart and help her find another way to comfort herself. I am becoming more and more convinced that only God can heal this need for comfort. There may even be some spiritual warfare going on over her.
She is doing better and better with her glasses! Today she wore them for almost an hour, and didn't try to take them off nearly as much. As a result, I was able to get some better pictures of her with them on! Enjoy :)
She's standing very tall now:
Daddy makes me giggle :)
She was totally posing for me here:
My favorite :)
(please excuse the snot, this wasn't exactly a planned photoshoot!)
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 wearing her glasses:
Lily passed out on Daddy today since she didn't take a nap...
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).
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):
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 :)
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!
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.
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!
I've decided it's time for an update to this post on how Lily and I are doing! We are doing great, actually. She definitely prefers me to anyone else, even Daddy! She gets really excited when I come home from being out. She crawls to me all the time and "asks" me to pick her up and hold her. She is a snuggle bug.
This past Thursday she demonstrated stranger anxiety for the first time when her speech therapist came to work with her! That made it harder to get work done, but actually it is a really positive thing.
Truthfully, I am glad that it took us a few months to get to this point. It means that this attachment is probably the real thing, and not just a "trauma bond". Seems like God does know what He is doing after all! I really need to be reminded of that sometimes.
In other updates, I am feeling better (thank you for praying!) but today Lily woke up with a snotty nose. She seems to be feeling ok, though, so if you could pray that it passes quickly...that would be great! Also, here's a picture I took of her scar so you can see how nicely it's healing:
Aside from the scar you would never really know that she had open heart surgery just one month ago. She is doing so well!