Monday, October 31, 2011

An Ugly Cold

Lily is getting over a pretty nasty cold that ended up giving her a spot of pneumonia.  This was the sickest I've ever seen her.  She was just so pitiful.  I took her to the doctor on Wednesday, but he sent me home without any medicine and said just keep an eye on her and come back if she gets a fever, her cough gets worse, or her vomiting gets worse.  The vomiting got worse, so I took her back on Friday.

On Friday, the doctor heard wheezing and recognized that her nose was so stopped up that it was possibly causing the vomiting, so he prescribed an antibiotic and a steroid.  He also was going to be on call at the pediatric emergency room on Saturday, so he suggested we take her back the next day and let him listen to her again.

Then it got crazy because Lily just couldn't keep much of her fluids in.  This was a problem because the medicine was to be taken with food.  And she was sleeping most of the time, so the breathing treatment wasn't working much because she wouldn't wake up and kept having apnea spells because she was sleeping.  My concern was if she's not getting the oxygen in, how is the medicine getting in?  Then she did this weird thing.  I was feeding her and she began to vomit, but some of the formula was coming back up into the syringe, so I decided to let it flow back into her stomach.  When that started going back in, it was as if a water hose was in her mouth and the formula was running (not projectile this time) out of her mouth and down her chin.  I've never seen that happen before, so it concerned me.

Dave took her to see the doctor on Saturday, and he decided to give her a shot of steroid and antibiotic.  They did an x-ray and found a spot of pneumonia, but they let her come home.  My concern was that she might have even been dehydrated, but she was producing wet diapers, so the doctor wasn't concerned with that.

And with all of this going on, I wasn't getting too much rest.  Friday night, she whined pretty much all night long and vomited three times.  Plus, Soleil woke up twice wanting to eat.  During the day, Lily was getting plenty of rest, but not me.

It wasn't until Sunday afternoon that she finally woke up and was her perky little self.  She's been that way ever since.  Still coughing a little, but no runny nose, no stuffy nose, and so far, no vomiting.  Last night I woke up at 2:30 with her and gave her a little more formula because we've been gradually upping her feeds not knowing whether her little stomach has shrunk or not.  Luckily, Soleil slept all night.

It's been an exhausting and frustrating couple of days and a little scary, too, but Lily's feeling a whole lot better, and it looks as if we've made it over another sick hurdle.  Lily stayed in for Halloween, but we dressed her up anyway.  Here are a few pictures from the evening.





Monday, October 17, 2011

Then and Now

I'm amazed with how far Lily has come!  She's now tolerating the oxygen, even though I still don't have the courage to tape it to her face, so it falls off in the middle of the night (don't worry, I wake up with Soleil still and put it back on her), but I think that it is giving her an extra kick.  And do I mean KICK!  Here are some new things Lily is doing:
  • Kicking a ball.  OK, it's not going very far, and she's not supporting herself to do it, but if I hold her up and pick her leg up at the crook, she moves her leg to kick the ball!
  • WANTING to stand!  Lily has always loved standing!  Today, I had her standing at the couch.  Then I made her sit down.  Immediately, she threw her head back and went stiff.  Nothing to worry about, I knew that she was just trying to make me let her stand up.  So, she stood some  more.
  • Speaking of standing. . .Lily is now standing at the couch, holding herself off of it.  She has a little trouble with balance, so I make sure my hands are ready to catch her if she falls, but I'm not holding her up!  Lily has SMO's that help tremendously with her balance!  Unfortunately, the first pair caused bruising on the bottom of her heel.  We're supposed to pick her new pair up on Wednesday.  I can't wait to see the difference in her ability to stand at the couch!
  • The little daredevil!  Today, while standing at the couch, she let go with one hand and tried to touch my face!  She kept her balance, but went straight back to the couch with her hand. 
  • If I sit on the floor and hold her under her arms, she leans into my hands, as if on crutches.  She lifts one foot off of the floor and pulls it back as if she's doing a ballet move.  Note:  this is different from when she takes steps.  When she takes steps, I'm LIFTING her a little so she doesn't have so much weight to bear.  When I'm sitting on the floor holding her under her arms, I am not lifting.  This is what Lily would do in the shallow water when we'd go to the waterpark during the summer, but she didn't have to worry about her weight much at all because of the water.  I can't wait to share this with her PT!!!
  • Last night, Lily pushed herself up to where she was almost sitting up!  Dave saw this and immediately got up to give her a little assistance.  I'm not sure exactly how he helped her completely up, but he said it was with minimal assistance.
  • A few nights ago, Lily was on the floor and a ball was nearby.  She reached out for the ball and was playing with it.  Reaching for toys while on the floor is pretty new to Lily.  This was the first time she reached out to play with a ball.
  • Lily likes to sit and "roll" that same ball to me.
  • She's trying so hard to get into a crawling position, but her arms don't have the strength she needs them to have.  Still, she's lifted herself--chest and belly--off the floor a few times this week using her forearms.
  • Lily is playing with toys!  Maybe it's more appropriate to say that she is attacking toys.  OK, so it's not the "normal" way children play, but it's definitely an improvement from what Lily was doing.
All of these are very recent--since we've moved--so needless to say, we've had a few very exciting months watching Lily develop.   

I'm including two videos.  The first was taken about a year ago of Lily playing with her Vtech Move and Crawl ball while in her stander.  In this video, she just seems so calm.  Really, I think she's trying to protect her face from this ball and wanting to put her mouth on it.  In the second video, which was just the other day, she seems more aware of the ball, spinning it and trying to keep it at arms reach.  By the way, she finally got mad at it and pushed it off of her stander.  :)










And she's not the chunky little baby she was a year ago.  Now she's a tall and skinny little girl, a little more than 31 inches tall.  She's destined to be taller than me!  (That's not saying much, though, at 5 feet even.)


If you'd like to see more videos of Lily--then and now, but mostly then--head over to YouTube.  You can search those videos by typing southerngirl72j in the search box.  Gosh, I just watched a few videos and. . .well, precious!  It's hard remembering Lily then; I'm so caught up in Lily now.  But no matter how much she's changed physically or developmentally, she's still the same sweet, pure little girl you just can't help but love. 




Wednesday, October 12, 2011

Playing with Sounds

Lily has recently begun playing with her sounds.  She does it especially in the morning and at night.  Never for the therapists, of course, so when she starts making her sounds, I get the camera out and begin recording. 

In this video, I was trying to get her to say "ma," just hoping. . .and hoping I could catch it. . .but she's never made that sound before.  Instead, she surprised me and sounded as if she was saying "Lily"!  Although you can't really see it in the video, her tongue was moving the way it should when making the "l" sound.  The video is about 3 1/2 minutes long, so if you don't want to watch the whole thing, fast forward to about the one minute mark.  Oh, and excuse the feeding tube.  I was feeding and recording at the same time.  Always the multi-tasker!