On the Boat

It was a beautiful day today. We decided to take advantage of the weather and take the boat out. It was the first time out for the season and Leila's first time out ever. She liked it, but we weren't surprised. She's a little daredevil anyway. She had a great time until she started getting tired and hungry. She actually fell asleep on the way back in. Just wait till we put her on the tube...

Another thing - my living room is now painted! I have put it off for years (and it has needed it badly). One reason is that I simply hate to paint. But the biggest reason, is that I just wasn't sure how to reach the part over the stairs. We replaced the banister this year. So I had paint all the molding and the new banister. I couldn't put off the walls any longer. It's all done now though! And I must say - it looks pretty good.

Normal

We went back to Columbus yesterday for a re-check. They said Leila's mouth looked good. She no longer has to wear her arm restraints. She can now eat whatever she wants again!!! She had her 1st piece of Easter candy when we got home.
And although she woke up a few times in the night, she hasn't actually gotten up the last couple of nights. Oh life is starting to get back to normal!

Easter 2009

Easter 2009

A New Bike

Austin's Truck

Well, things are getting a little better - not a lot, but a little.
The days are slowly, slowly improving, but not the nights. Leila has always been a great sleeper. She normally sleeps 10-12 hrs at night - and takes 1 or 2 naps during the day. Not since her surgery though. I have not had a full night sleep in over a week (which I could really use). She's also still taking pain medicine pretty much around the clock.
We thought she was clingy before, now she's REALLY clingy. That's a little hard to take after awhile too.
I alternate between thinking that surely it's been long enough and things should be better by now - and thinking that they did some pretty serious surgery there, gave her a new mouth, and that's going to take quite awhile to get over.

Easter was nice. It wasn't overly warm, but at least it was pretty out.
Since Leila is still on soft baby food, we all have to hide when we want to eat our Easter candy. That's not so fun.

She got a basket from the Easter bunny and one from her Mama and Papa. I put her candy up so it will be waiting on her when the doctor gives the okay.
Leila also got a pink and purple tricycle from her Aunt Juanita and Uncle Darres. She can't reach the pedals yet, but she's really enjoying being pushed around on it.

Austin LOVED Easter this year too. He got himself a truck. It's a little red 4x4 Toyota pickup. He's been working the last 2 summers and saving money. He paid part of it, and we paid part of it. It wasn't really an Easter present. We just happened to find it the week before Easter, so we went ahead and got it, but didn't tell him until Easter morning. It made it more fun that way.

Poor Darrell - he's the only one that didn't get any 'wheels'. Don't worry about him though - he found a Wii game in his basket, so he's just fine.

Surgery

Well, it's over and we're home now.
Surgery is not fun. In fact, the 1st 24 hours were horrible. They said the actual surgery went well. I was allowed to stay with her clear up until she went to sleep. I didn't expect that, but that was really good since she has major separation issues.

After the surgery, we knew there would be a lot of bloody drool, but it seemed like there was more than we expected. Then it started flowing from her nose. We asked if that much was normal. The nurse said - no, not really. They ended up calling the doctor to come back in. They syringed her mouth out, and decided it was okay.
They were also alternating between tylenol 3 w/ codiene and ibuprofine for pain. By Fri night, nothing was working - she was just crying. They called the dr back again and ended up giving her morphine. It worked, but sleep was very fitful, 15-30 minutes at a time.
She also cried if we even attempted to lay her down.
She had an IV in one foot and the pulse/O2 indicator on the other. The monitor would beep if her heartrate went over 200 - which it did when she cried. Needless to say, we beeped a lot.
She was so swollen from all the IV fluids too.
It made for a very long night.

She does have arm restraints on now. These are to keep her from bending her arms and putting anything in her mouth. She's supposed to wear them for 3 weeks. At this point, they don't seem to bother her. I'm surprised (and very, very grateful).
She's eating (stage 2 baby food), but still not drinking much.
You can definitely tell when the pain medicine wears off, but we're all doing better now.

April 2, 2009

Tomorrow's the big day. Leila has her surgery. Surgery is scheduled for 11:30. We have to be there at 9:30. That means leaving our house around 7 AM. She can't have anything to eat or drink after midnight tonight. She will NOT be happy tomorrow. She's used to eating breakfast first thing when she gets up.
Surgery should take until almost 2:00. And she's only supposed to be in the hospital for one night.

I decided today that I needed to take a picture of her mouth. There are people that do not even know exactly what a cleft palate is. (It's a hole in the roof of her mouth.) Most people have never seen a cleft palate. More importantly though - when she gets older, LEILA may want to see what her mouth looked like for 17 months. And after tomorrow, it won't look like that anymore.

I started out trying to do this by myself. Trying to hold her back, tickle her so she'd laugh, and take a picture all at the same time - isn't exceptionally easy. David finally came in, and I convinced him that this NEEDED to be done. He did agree to help, but he didn't have a lot of time to spend on this all important task. Next we tried holding a cheerio in front of her nose, so she'd open her mouth to snap the picture. (She probably felt like a dog with a biscuit balanced on his nose.) Biggest problem with that, is that my camera isn't instantaneous. There's a slight delay between pushing the button and it actually taking the picture. I got lots of pictures of her chin, her nose, her tongue, etc. Finally through the course of all this hoopla I got one that I considered passable. Maybe that's only because I know what I'm looking at though.