Friday, August 20, 2010

The months following the birth of Brady.

This entry is taken from my journal, written August 4, 2006....

"It's been about a month since I wrote in here and Brady is doing great. He now weighs over 15 pounds and is over 25 inches long. He has been growing so fast. We eventually found out that he does have a right eye, but it's underdeveloped and he will not be able to see out of it. He goes to Strauss Prosthetics in Rochester for work-ups for a prosthetic (glass) eye. We have also been told that even though he has a couple of things wrong with his left eye, his vision should be okay.

Anyway, for his right eye, Michael Strauss put that whey call a conformer in there to help the socket form around the eye so that a prosthetic will fit properly when they make one for him, which should be when he's about a year old. Brady got his first conformer in April and a month later, he started pushing it out of his eye all the time. We went back to Strauss in June and Michael made another conformer that was more than double the size of the first one. In the beginning of July, Brady started turning the conformer the wrong way in his eye and made his eye really red and irritated. We were told to take the conformer out and leave it out until the new one could be properly fit.

He had an appointment on July 14 to go under anesthesia so that Michale could make a mold of his eye so they can properly fit a prosthetic. The whole procedure took about 15 minutes. Dr. Merriam was there to get a better look at Brady's left eye and he determined Brady's vision in that eye is fine for now. We have the Oneida County Early Intervention program working with Brady on his vision and also doing occupational therapy because he wouldn't open up his hands or reach for toys. Jamie is his OT and she is excellent with him. Brady's hands are opening more and more, he's learning to roll over, and he's "tracking" more things with his eye, especially toys with lights. He's so smart and his smile brightens my day. He's beginning to look more and more like his Daddy.

As for me, I feel like I have been on a roller coaster ride since I became pregnant with Brady. I cannot believe that it was one year ago that we found out that I was 9 weeks pregnant. Anyway, since he was born in January, I have had a lot going on. I started going back out to Cleveland for more tests in March. Those tests were for my lungs and I had to go back to Cleveland in April for more tests for my liver. I took copies from the PFT's in March and sent them directly to the disability office so they could see the current results of my lungs function. That must have helped, because I was approved for disability in the beginning of April.

While I was in Cleveland in April, not much happened. My Mom came out there with me that time. We were watching Deal or No Deal on TV and there was a girl named Ally on there who had just had a double lung transplant at the Cleveland Clinic in January. She, like me, also has Cystic Fibrosis. She looked really well for only having the transplant in January. I so want to feel like that again! Ally ended up winning $124,000!!

In June, Brady went to the genetic doctor and everything is fine genetically. They did chromosone testing and that came back normal. I joke with people saying that Brady is the first in the Prince family with papers stating that he is "normal." This is the appointment where it was determined that he could benefit from Vision and Occupational Therapy. I was also back out to Cleveland in the end of June with my Aunt Sally and my lung function was down from March, but I still wasn't placed on the list. They wanted me to come back out during the time that Brady was going to have his eye procedure, and there was no way I was doing that, so I cancelled those appointments and they were re-scheduled for August (this month).

Throughout the summer, Brady has continued to do well and is getting bigger. He has had a few more appointments with his pediatrician and eye doctor, and Jamie continues to work with him for occupational therapy. Sarah, my cousin, has been staying with us to help me around the house and with Brady. I'm getting too sick to do it all by myself during the day. She has been a great help so far.

In the end of July, I was admitted to my CF hospital in Syracuse for coughing up a lot of blood and running fevers. Dr. Sexton didn't feel comfortable doing the embolizations in Syracuse anymore since my lungs were getting worse, so I was flown, by medical flight, to Cleveland Clinic on August 2, 2006. My Aunt Sally had already headed out there and was there when I got there. She kicked butt and got the doctors moving on a lot of things. They had their huge meeting to talk about my case and they sent my case to the Ohio Board for approval to be listed for the transplants. The Interventional Radiology team in Cleveland did the embolization to stop bleeding in my lungs, and after a few days, the blood was gone again."

So, now you can see some of the stuff I started to go through as I was getting sicker. Taking care of Brady was not easy. I had too many infections, I was couging a lot, bringing up a lot of mucus, and overall not doing well. It was only to get worse from here.

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