Riley's Story

Its been a rough few weeks for us. I think it was kind of a reality check for me. I have been on cloud nine with having a baby who was supposed to struggle when he arrived but did completely the opposite.  Surprisingly everything has just gone so much better then was expected, but getting this nam has sucked.   He's been seeing his Orthodontist ( Dr. Yamashiro)  at Primary Childrens every two weeks for the appliance.  The nam is designed to help shape his nose in prep for surgery as well as keep his tongue, and bottle from spreading the palate further apart.  The tape across his lips is actually stretching his skin. Our goal is to make it so when the tape is off and his skin is relaxed the lips are touching. It just means that there will be less pulling when they do the lip repair. Its amazing to see what its done in such a short period of time.   Riley will wear this until his lip and nose repair on February 5th, so he has a month more with it. After the first week with it he just screamed and cried. It was like I had a totally different baby.  He was so uncomfortable with it in. He pretty much had to re learn how to eat,  and really really struggled. It caused sores in his mouth from it rocking so much while he ate which I think was pretty painful. The doctor can adjust those spots when he see's him up at Primary's every two weeks. We change the bands, and take out the appliance to clean it twice a day which is very exhausting and emotionally draining for all of us, but in the long run its going to make the results of surgery the best they can be. He also just got his nose stints in which actually don't seem to bother him too much. The stint we also have to take out at clean everyday and put back in. The nose stint is to help reposition the cartlige which is going to make his nose job look better too. It also opens the air way in the nostril so he can breathe better as well.

Were working really hard on sleep training him but he just wants to be held so much I don't blame him. We keep adding things for him to deal with, he gets so frustrated and uncomfortable he doesn't want to be put down. But over all were doing ok. I really can't complain. He's getting so big,  eating great now and gaining weight like he should. He's healthy and is getting so strong! He's got eyes that kill and the most perfect smile. Were still noticing the little tender mercies throughout our days, and continue to be thankful for all that we have. Were crossing our fingers that things keep going our way.