Monday, May 24, 2010

9lbs 4oz

Thats the latest weight! The folks at the sixty five roses clinic are so impressed with his weight gain and that makes us so happy. I hope he continues down this path!

We met with the surgeon this morning and he is ready to schedule the surgery for the ostomy reversal. We should hear from his office by Wednesday to put a date on the calendar. We've heard that it takes a few weeks to "book an OR" so I guess we'll see. We're hoping for sooner rather than later so that we can just get this over with and move on with our summer, but I guess we'll just have to see.

I went to a CF Information Conference at Children's this weekend. I wasn't able to make it for the whole day, but I was there for a good part of it and was glad that I went. There were different speakers talking about things like new airway clearance techniques and different drugs and research in the pipeline. One of the best parts of the day was the panel discussion. There were 5 people who had CF (ages, 15, 17, 18, 24, and 40!) as well as two parents who had children with CF. Their illnesses were to varying degrees, as CF affects just about everyone differently. The people in attendance were just asking questions and there was an open discussion and it was good to hear what they had to say. It gives you hope, seeing some of these kids (and adults) looking and living healthy normal lives. Several people had been through a number of surgeries for different complications due to CF. All of the folks discussed the dedication that they had put into their CPT and medication regimes. The parents on the panel who had children with CF discussed some of the challenges that they faced as their kids dealt with having CF.

There was a young girl on the panel, I think 17 or 18 years old. She was about to graduate from high school, however was not going to be able to go onto college because she was waiting for a lung transplant. She called herself "one of the sick ones". It was sad and it was scary. Her brother also had CF, but she said he didn't really have it. He didn't need to religiously take his meds and do all of his treatments to stay healthy. He was relatively unaffected by the same disease that had her in the hospital about once a month for her whole life, and now she was waiting and hoping for new lungs so that she could continue her battle. She was emotional about it, as was the entire conference room of people.

The hardest part of this disease for me so far is fear of the unknown. I'm scared that he will be sick and in the hospital a lot. I'm scared that Lily and Ella will resent him or resent us for the care we will need to give him. I'm scared that people will be afraid of him because they don't know or understand the disease. I'm scared that people will pity him. I'm scared that they won't find a cure soon enough.

I (we) are trying to keep a positive attitude. All things considered, hes doing great right now and we just have to take it one day at a time. We're working on treating him just like we treat the other two, a normal kid who has CF. CF is not who he is, its just something he has. Hopefully we will continue to have to strength and support of our friends and family to fight this and give Drew the best care possible.

The 40yr old man on the panel was married with two children of his own. At the end of the conference he said that the best advice that he could give, both living with CF and now having children of his own (they don't have it), is to be their parent, not their doctor. Throughout their lives, this disease will have them seeing enough doctors. Although you have to help them with their care and their meds, be their parents and let the doctor be the doctor. So thats what we're going to do.

Here's hoping that this next surgery is quick and easy and we can just start living our new normal crazy lives with twins and a two year old!

1 comment:

  1. You are a very impressive mom! And should be really proud of the great job you and Martin are doing with your whole family! Fears are good to acknowledge and then they sometimes don't seem as threatening. And fortunately your girls have a good bit of Irish in the them to help them with the stuff. Glad the surgery is coming up soon!

    So is there any possible way Drew can be a Phillies fan and not a Yankees fan....Aunt Kate would be happy, me too.