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.

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.

Swaddling Essentials!

So far, nothing has been more helpful than swaddles! Here he is sporting his tropical look in the first swaddle I made. Jake gets pretty worked up sometimes. Whether it's trying to change his tapes when he's not in the mood or feed him when his mouth is a little sore, Jake's a really strong kid and he flails and arches when he's mad. As a newborn, receiving blankets worked ok, but he could get out of them pretty early on. Then we got him a Swaddleme. These are awesome!!! Because of the velcro, he couldn't work out of it no matter how upset he got. Having his arms securely by his side really helped him calm down and relax.

Now that he's bigger (24") the Swaddleme is too small. There is no medium size, and the large is waaay to big still. So I used the pattern from the book "Simple Sewing for Baby." The pattern is really simple and easy to modify. I added 4" to the length because my little ones are long and skinny. The next time I make them, I'll add a little to the length and the width. I lined mine with knit. (money saving tip - look for knit sheet sets, usually on sale after kids go back to college. There are yards and yards of fabric there. Way cheaper than buying knit yardage at a fabric store.) Because the outside layer is regular cotton, it doesn't stretch the way the Swaddleme does. Every time I change Jake's tapes, brush his gums, and clean his NAM, I swaddle him. It keeps him calm, lets him know what's coming, and keeps his hands out of the way. Both Jake and Lily get swaddled for bed and they both get placed on their backs to sleep. Nice & safe!

PLEASE NOTE: Always follow your doctor's advice and the NICHD's guidelines for safe sleeping and SIDS prevention.