Jake Plays the Piano!

Here's my big guy reaching out to hit the piano keys while supporting himself with one arm. What a strong boy! In the last two weeks, we've noticed a huge improvement in Jake's cleft. The two sides of his lip are almost touching and his nostril is really taking shape. Tomorrow we go in to Dr. Yamashiro's to get the nose post added to Jake's NAM. Hopefully it won't bug him too much. He hardly even turns away when I have to put the rubber bands back on anymore. Well, depending on his mood! I can't remember if I mentioned it, but we've started using the sign language gesture for "all done" every time we finish doing his tapes. He will usually calm down a little bit, or stop crying altogether once he sees that. It's so helpful! Even if he's still mad, at least I know he understands that it's over.

Jake and Lily have started playing with each other now. They will look at each other and smile, try to grab each others' clothes or limbs! When they're apart, they will look for each other. Lily seems fascinated by Jake's NAM and tries to pull on it, so we have to watch her. But they both have also discovered the joy of playing with toes! We still swaddle them but as soon as they get unwrapped, up go the feet! It's awfully convenient having toys attached to the ends of your legs! This is such a fun time.

I want to get a professional portrait taken of Jake before his surgery (kiddie kandids is having wicked good specials right now!) But I don't want to have it taken with the tapes all over his face. If I take them off, it takes a good long while for his skin to heal and the red splotches to go away. We started using A+D ointment instead of Eucerine because it works a little bit better. (Doesn't smell better though!) Even so, it'd be at least a day until his skin was better. But I can't leave his NAM out that long because he doesn't eat well without it anymore. So I don't know. Maybe I'll just take a blotchy picture anyway. I just want a nice portrait of how he is right now.

Two more weeks

Well, the doctor was pleased with Jake's progress but won't put in the nasal post for another two weeks. Jake's nostril is really starting to have a shape and isn't just flat across anymore. The dr wants to see a little more slack in it though before adding the post. I was a little disappointed but there's no rushing these things I guess. Dr. Yamashiro did adjust Jake's NAM a little and it seems to fit a lot better. Here he is playing with Stinky, the rat (who is actually quite fluffy and adorable!)

Lip Taping

We just got back from visiting Dr. Yamashiro, Jake's orthodontic surgeon at Primary Children's. He was really pleased with Jake's progress! Today we learned how to tape Jake's lip to bring the two pieces closer together. Jake was not happy about it at first, but only fussed for a little while. I swaddled him after the Dr was done and held him until we got to the car. Then he fell right to sleep! He's such a good kid.

The lip tape actually helps the NAM stay in much better! The few times the rubber bands came off it stayed in place because there was actually lip in the way! For the first time, we can see sort of what he will look like when the surgery is done. It's actually really strange. I'm going to need a little while to get used to it. He's going to look like a typical little boy, but we're so used to him the way he is. I have to admit, I've got mixed feelings about it. Obviously, we want the repairs to be done. It will give him a healthier and happier life overall. But he's my little boy, and I love him just the way he is. It breaks my hear to think about what's in store for him in the next few months. But that's just between you and me. Eric and I believe very strongly that children look to you for what the appropriate reaction should be. When he gets little things like the lip taping done for the first time, we try to take it in stride. Aside from some Tylenol and a few extra cuddles we treat him and his sister like it's just another, normal day. Surgery will be a different case, but so far, his fairly relaxed attitude has mirrored our own. I suspect the whole experience will be more traumatic for me than for him. But either way, I'm not looking forward to it.

NAM!

Today Jake got his NAM (Nasoalveolar Molding) device. We just call it a retainer. That's basically what it is and 'retainer' is an easier concept for most people. (Family, friends, and even random people in stores want to know what it is, but don't need a 2 hour explanation with a big Latin name :) It's made of clear plastic so it's kind of hard to see. Since he doesn't have any teeth for it to clip onto, we have to put tape on each cheek that has a rubber band on the end. The rubber bands slip over the two 'fangs' on the front of the retainer to hold it in. That's Doug the dog blankie he's holding onto by the way. Doug and Jake are best buds.

Jake didn't mind when Dr Yamashiro put the tapes on but freaked out when the NAM was put in. He cried so loud we couldn't hear the doctor! We should have asked our questions first. I was so worried that Jake would just be screaming for the rest of the day. But 5 minutes later he decided it was fun to suck on and quieted down. He fussed on and off all the way home, but when it was naptime he went down with no problem. Now he's playing on the floor like usual.

Today was a lot easier than I expected. I mean, he's been a little fussier than usual, but he seems more annoyed than anything. I can handle annoyed. I was prepared for non-stop screaming. The laundry and dishes are done and I stockpiled a bunch of candy (chocolate does wonders for my nerves ;) in anticipation of a really rough time today. Of course, as I typed that last part he wigged out and wouldn't stop crying. But we went for a walk to get the mail and now everything's cool. :)