Today marks exactly eight months since we arrived home with Lily! She is doing really well. Since she is about to turn three (March 14!) she will be leaving Early Intervention and will start receiving services from our local school system. Because of this she got re-evaluated last week and I thought I'd post the results here to see how far she's come!
Self-Care: 12 months
Social-Adult Interaction: 8 months
Social-Peer Interaction: < 24 months
Social-Self-Concept and Social Role: 11 months
Receptive Communication: 5 months
Expressive Communication: 10 months
Gross Motor: 11 months
Fine Motor: 10 months
Cognitive-Attention and Memory: 11 months
Cognitive-Perception and Concepts: 13 months
The only one I'm not sure I agree with is the receptive communication. I was pleased to see that her fine motor skills have caught up to her gross motor, and all her social/communication skills are at least at the eight-month level, which is appropriate since she's been home eight months. Go Lily!
Friday, March 2, 2012
Tuesday, February 14, 2012
Sure Steppin'
Lily got her new SureSteps (orthotics) last week. They give her extra ankle support to help her with standing and walking. It took some searching and creativity to find non-lace shoes that she could wear with them (we like to avoid laces because Lily eats them...while she's wearing them...).
New Balance sells extra wide shoes, so we tried these:
Left foot with SureStep:
Right foot with SureStep:
Just 'cause I'm cute :)
Unfortunately the velcro straps weren't long enough, so we had to improvise a bit with strips of extra velcro (the black strips):
Lily doesn't mind wearing them and they do help!
I also got her a pair of Skidders shoes to go with her SureSteps, and they work too. I haven't had a chance to take pictures of those yet, but I will! They are really cute. A girl can never have too many pairs of shoes, right?? :)
Monday, January 30, 2012
Guarding Our Time
I have been thinking a lot recently about scheduling. Lily has four different therapy sessions every week, each of them an hour long: physical therapy (PT), occupational therapy (OT), speech/feeding therapy and developmental services. I have been trying to figure out if there is one or two we could cut out of our schedule, or perhaps change to every other week, but each one serves a unique purpose and is so helpful for Lily. The problem is, when you put them all together in one week and repeat that over and over, I think some of it starts to lose its usefulness.
Last week when we were in the hospital, I was almost elated to be able to cancel all our therapy sessions that were scheduled for the week. No, it was NOT fun being in the hospital, but there was still a kind of vacation-like feel to it because that was the ONLY thing we were doing. Yes, it was terribly boring and absolutely exhausting. But, in a very weird way, it was also refreshing to take a step back from our daily life and just focus on BEING. It made me realize that maybe we are DOING too much.
Because Lily is about to age out of Early Intervention, I don't see much point in trying to change anything there. But when she turns 3 and switches to the public school system, I see a chance to start over. To re-evaluate her therapies and what's important. And I've also come to realize that it's ok if I'm not at every single therapy session. If she needs to get some at daycare, that's ok. It's ok (and good) for her to go to daycare a few mornings per week.
This afternoon I canceled her physical therapy session that was scheduled for tomorrow. I'm just not ready (and I don't think she is, either) to jump back into our full schedule. So, we are going to ease back in as much as possible. And hopefully in the future we can cut back a bit so that we don't have to.
Last week when we were in the hospital, I was almost elated to be able to cancel all our therapy sessions that were scheduled for the week. No, it was NOT fun being in the hospital, but there was still a kind of vacation-like feel to it because that was the ONLY thing we were doing. Yes, it was terribly boring and absolutely exhausting. But, in a very weird way, it was also refreshing to take a step back from our daily life and just focus on BEING. It made me realize that maybe we are DOING too much.
Because Lily is about to age out of Early Intervention, I don't see much point in trying to change anything there. But when she turns 3 and switches to the public school system, I see a chance to start over. To re-evaluate her therapies and what's important. And I've also come to realize that it's ok if I'm not at every single therapy session. If she needs to get some at daycare, that's ok. It's ok (and good) for her to go to daycare a few mornings per week.
This afternoon I canceled her physical therapy session that was scheduled for tomorrow. I'm just not ready (and I don't think she is, either) to jump back into our full schedule. So, we are going to ease back in as much as possible. And hopefully in the future we can cut back a bit so that we don't have to.
Saturday, January 28, 2012
Check It Out!
Like the new look? I love it! It's still a bit of a work in progress. Thank you SO MUCH to Ashley for designing the header and signature for me :)
And here is a video of Lily signing "Mama" and "Daddy"! She is just starting to "get it"; hopefully we'll see her signing vocabulary explode in the next couple of months.
And here is a video of Lily signing "Mama" and "Daddy"! She is just starting to "get it"; hopefully we'll see her signing vocabulary explode in the next couple of months.
Friday, January 27, 2012
Pneumonia
We have had a rather "exciting" week. On Saturday, Lily had a fever and her nose & cough got suddenly worse. On Sunday she started wheezing, was sleeping more than normal and eating much less than usual. So on Monday morning I took her to the doctor.
We hoped we would only be there for one night, but it turned into three nights. By the third day Lily was doing well enough to go to the play area.
Finally on Thursday she was discharged. Here she is playing in the windowsill that morning before we left:
Now we're home and taking it easy. We have had lots of support from family and friends, which has been awesome.
 |
| Waiting in the doctor's office. Monday was a long day. First they were just going to send us home with a bunch of prescriptions, but then while in the doctor's office they couldn't get her O2 sats high enough to be comfortable with that. So they sent us out for chest x-rays and told us to come right back, which we did. Her O2 sats were still low and the x-rays showed double pneumonia, which just means pneumonia in both lungs. They decided to send us to Roanoke Children's hospital. Getting some oxygen while waiting in the ER:  At first they were going to let me drive her up there, and even go home first to grab a few things (like her Sildenafil), but when they called the hospital the pediatrician there was not comfortable with that...so...we got sent by ambulance. It was Lily's first ambulance ride: |
We hoped we would only be there for one night, but it turned into three nights. By the third day Lily was doing well enough to go to the play area.
Finally on Thursday she was discharged. Here she is playing in the windowsill that morning before we left:
Now we're home and taking it easy. We have had lots of support from family and friends, which has been awesome.
Thursday, January 19, 2012
Funny Photos
Here are a few quick pictures from the last few days:
Hangin' out with Daddy
Showin' some leg!
Guess who's learned to open the kitchen cabinets?
And extract all the contents?
"Oh yeah, that'd be me!"
I especially love this last picture of Lily. It's what those in the photography business might call an "environmental portrait". I love how Lily is framed inside the cabinet, but also the mess around her really shows off her personality right now: "I am into EVERYTHING!"
Friday, January 13, 2012
A Kairos Moment
If you don't know what that means, I think it's best explained on this blog. I'm not going to re-hash it here, I just want to share with you a Kairos moment I had a few days ago.
I was sitting on the couch and Lily wanted to climb up with me. Since she can't get onto the couch by herself yet, I pulled her up onto my lap. As usual, she flipped to her stomach and hung her head off the arm rest. She ended up positioned in such a way that my palm was pressed against her chest, right next to her heart.
I froze, because I could feel her heart pumping in my palm. I could almost hear it. And I paused to listen and feel because I know not to take that beautiful heart for granted. Lily had to fight so hard for that heart to work properly, and it just felt like God was right there reminding me again that it's a miracle she is here. It's a miracle she lived long enough for us to adopt her. It's a miracle she was able to have the repair surgery. It's a miracle that she did so well with that surgery.
She's a miracle.
I was sitting on the couch and Lily wanted to climb up with me. Since she can't get onto the couch by herself yet, I pulled her up onto my lap. As usual, she flipped to her stomach and hung her head off the arm rest. She ended up positioned in such a way that my palm was pressed against her chest, right next to her heart.
I froze, because I could feel her heart pumping in my palm. I could almost hear it. And I paused to listen and feel because I know not to take that beautiful heart for granted. Lily had to fight so hard for that heart to work properly, and it just felt like God was right there reminding me again that it's a miracle she is here. It's a miracle she lived long enough for us to adopt her. It's a miracle she was able to have the repair surgery. It's a miracle that she did so well with that surgery.
She's a miracle.
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