Warning: Massive Photo Content

I've been getting requests to update so I thought I'd take a few minutes today while Jaela is sleeping to let everyone know how we're doing. Starting Friday and Saturday Jaela was throwing up pretty much every time we fed her. She had started to do really well eating by mouth, but now she's starting to go down hill. She'll only take a couple ml at a time (an ounce in 30 ml) and more often than not, throw it all back up. On Sunday we went through at least eight burp clothes and several outfits because she was throwing up so much. And I really mean throwing up, not just spitting up. It was full on heaving. We were very nervous and called our Elder's Quorum President who is a doctor to come look at her and we've had her to the pediatrician. They just suspect she has a cold and doesn't feel very good. We have to watch for aspiration which is inhaling the throw up. Her lungs have sounded good so far and we keep hoping she doesn't aspirate.

This picture shows perfectly her attitude about eating. You can see in her eyes that she's thinking "Save me Daddy! Mommy's trying to feed me"


We have our appointment for the OI clinic at Shriner's on April 13th. I'm excited to get some expert help and I'm excited to get things started. We have been getting some excellent help and advice through our pediatrician though. He has connected me with a woman in his office who is helping me traverse this new medical world I'm finding myself in. She had a son with special medical needs too and is there not to give medical advise, but help me navigate. She's referred me to a feeding specialist at USU to help me work with Jaela and is helping me create a special medical report that all doctors through IHC can see. It just has things on it like not to take her blood pressure and if her blood needs to be drawn to not put on a tourniquet. But I feel the most important thing for me right now is that she understands. She knows what I'm going through, and the challenges that are ahead of us. She has a different perspective than doctors and nurses and she is going to be one of my greatest resources.

I've joined an OI group for parents and I've read some sad stories about people just having to wait for their baby to die, but I've also read inspiring stories where these babies have cheated death and are thriving. I want Jaela to thrive. I'm going to be aggressive in getting her the help she needs. Part of OI is poor muscle tone so she's having a hard time controlling her head still. We're working with her every day to get stronger and I'm going to pursue physical therapists and occupational therapists that can help her as well. We've been told she won't be able to walk. While this may prove to be true, we are going to do everything we possibly can to give her opportunities to try. We aren't going to tell her she can't do things. We tell her every day how much we love her, how perfect she is, and that she can do anything she wants. But as hard as we try to be positive for her, I still struggle with why she has to this. I still cry for her and wish she didn't have this condition that wreaks such havoc on her body. I know Heavenly Father doesn't make mistakes and some day we'll understand perfectly why the three of us were asked to face this together, but for now faith will need to get us through.

Jaela does make us smile every day though. She's finding out that smiling is a fun thing to do because she gets such a good response back from us :)

She still loves to stick her tongue out and lick EVERYTHING!


And how can you not love her beautiful eyes!


Look at this fantastic hair-do


Jeremy was teasing her....again....


She was peaking out at me the other morning like "Mommy, are you going to get me out of here?"


Cute bracelet :)


And I don't really have anything to say about these except that they're cute. I wish we could take Jaela out and show her off to everybody, but until RSV season is completely over we have to keep her inside and isolated. By the way, insurance won't approve for her to get another RSV shot so she's not protected at all anymore so we've had to go into super lock down now.