Wednesday, November 30, 2011
Impatiently Waiting: Our lives from Kamryn's birth to her official diagnosis
We took Kamryn home on Sunday the 24th. We were the most proud parents alive. Will's mom and sister had cleaned our apartment spotless as a surprise... I was on top of the world. Things were great, other than the fact that we were sure Kamryn had colic. At Kamryn's 1 week visit, the doctor noticed that Kamryn had a large belly.. but, instead of checking for a problem, he told me that I was overfeeding her. Yes, that's right.. overfeeding her. I was puzzled. I tried to explain to him that she only ate 2 oz every 3-4 hours. He then proceeded to tell me that everytime a baby cries does not mean that you should stick a bottle in their mouths. Needless to say, I left that doctor's appointment very upset. It didn't take long before we were back at the doctor's office. Kamryn had a big problem with crying.. like I said, we thought she had colic. She cried nonstop. She would cry until she stopped breathing and her face was bright red. This scared us half to death. She also had a problem with her stools. She had diarrhea constantly, and I noticed that her fontanels were sunken in. I took her to the doctor to see if she was dehydrated. They quickly took a look at her and told me she was fine. Little did we know, the poor baby had MONO! If we had known that, we would have kept from swapping her formula a total of SIX times - that is including breast milk. You would think they would have known to look deeper into things. At Kam's 1 month visit, I asked the doctor about checking her belly, and he quickly looked at it and said it was fine. I'm telling you, it is crazy how a mother knows deep down. I remember telling my husband that something was wrong with her. I just knew it. During this next month, we really started noticing how large her belly was. We also noticed that her stools were sometimes a bright neon yellow. I was told that was stomach acid, but after researching through other family stories, I am beginning to think that could have been related to the NPC. We also noticed dark brown pee- something that another NPC child had a problem with. I took a brown pee diaper to our doctor, but he said it was normal. At Kam's 2 month doctor's visit, we saw another dr in the same office. She took a look at Kamryn's belly, looked at us, and told us that her liver and spleen were enlarged. She told us we would have to go to the ER at Children's hospital. I panicked! I had so many emotions going through my mind. I knew it. I knew something was wrong. That darned doctor should have known. I tried to tell him that I wasn't overfeeding her. Will's mom was with us, which was truly a blessing. I don't think Will or I were in the state to drive.
Kamryn was tested for just about everything you can possibly think of. Everything was coming back fine, except the mono. I started to justify it with that. Everything started to make a little more sense, and I just knew that it was only mono. Unfortunately, it wasn't just that. It's something much worse. After the last test result came back fine, the specialist decided we better do a few more tests.