Another day, another appointment!

So we had another appointment today attempting to figure out this whole stucky nose thing. We ventured out to the ENT. Her doctor has come to the conclusion that Miss Emmie needs surgery to remove her adenoids. Whoo-hoo right. Not so much. I know that a lot of CF kids go through surgeries frequently, however not Em. She has had 1 surgery to put tubes in her ears. I didn't do well that day either. I just have a hard time with it I guess. So on July 23rd we will trek off to the hospital to have this done whether Mom likes it or not.

On a positive note her ENT looked into MY nose today too. Maybe not all that plesant but I got an answer as to why my right side of my face has been hurting soooooo bad. Actually yesterday I almost broke down and just started crying it hurts so bad. At first I thought I had an abscess tooth so I went to the dentist, not the case, teeth are all fine. So even though I have been on antibiotics for a month I figured it was a sinus infection and continued with the antibiotics. Again, not the case. He said it is a sinus issue, it basically is a irritated nerve in my sinus caused from the likes of Bath and Body Works or Yankee Candle or clorox bleach or something of the like. All I can do is sinus rinses, and hot compresses on it with sudafed, and motrin until it goes away. After all this I start thinking an irritated nerve, well I am irritated but the nerves really shouldn't be so they need to stop irritating me. The pain is miserable. It almost feels as though my sinuses are pushing so hard on my teeth that they are all going to fall out. I literally can not put my teeth together to chew or it feels like my teeth are exploding into my eyes.

Ok enough complaining. More updates to come as they happen!

Love,
Melissa and Em

It's been a while!

Ok so here we go again, I think if I start from the beginning this may make more sense to both you as readers, and me as a writer. I had a pretty "normal" pregnancy with Miss Emmie. Only complication being gestational diabetes. So when I went to the OB for my last check up and he said I will meet you at the hospital in a few hours I was kind of in shock. So I did as asked and met him at the hospital and a few hours later we were blessed with a happy healthy 8lb 4oz baby girl that mom and dad could not agree on a name for. We were told that she was doing wonderful and went home a mere 36 hours after c-section delivery. About 2 weeks later we got a phone call from our new pediatrician telling us that Em did not pass the newborn screen test for Cystic Fibrosis. However, we were told not to worry, this test is only 10% accurate. We would now have to travel down to the U of M and have a sweat test done. So off we trek. We get the first test done all to find out that our little girl has come back as borderline. So as brand new parents we are scared. (Honestly I don't quite think scared cuts it) They told us to bring her back in another 2 weeks to repeat the sweat test and find out the results then. 2 agonizing weeks. I sit, I think, I wonder. What is going to happen. Is our little girl sick? Is she dying? What is this horrific thing being thrown at me just as I become a happy parent? We now go back to U of M to do the sweat test again. Our results again come back borderline. WTF? How can you possibly do this to me, to us? They then recommend that she has blood work done to confirm that my peanut has CF. It obviously came back as positive for DF508 and R117H. It could be worse though right? That is what I had to keep telling myself. So now we start with meds, and more meds, and even more meds. We get nebulizers delivered to our house. Not long after we get a vest delivered.

Now it kind of seems like a blur. Like I really don't remember anything different than life as it is today. But I am okay with that. I love our little princess (and she really is a princess) just ask her.

Currently we are having issues with sinuses. I am sick of them. Sinuses should come with a warning label especially in Michigan. With Em they decide to store mucus, thick sticky mucus at that. It then gets stuck. You know how most kids get runny, yucky noses? Not our Emmie. She gets stucky noses. Where it sounds like she is boiling thickened water in her nose. This has been an ongoing issue for us, and it is currently back. Bactrim take it away? I hope so and soon.

Our other current issue is that Em will not eat. She will eat pediasure with her bottle and that is it. I can get her to take small amounts of food however not enough to calorie count. I have come to the non-licensed nurse mom conclusion that it really does hurt her belly. She cramps. She gets gassy. It goes right through her. So who in their right mind would continually put themselves through the pain of eating solid food if it HURT to eat it? Something to talk about when we go back to clinic.

I think this is it for today (maybe this week) we will see.
Have fun reading,
Have fun!
Melissa and Em too!