The Letter M

I haven't been doing very good keeping up with my alphabet challenge, here goes:
The Letter M is for "Molly" and a little about her life ....
Molly is my youngest child, she was born in August 1996, my pregnancy was normal, delivery was normal she was just a perfect baby. There were no signs anything was wrong. For the first 3 yrs of her life we lived a normal life, then at the age of 3 things started changing. Molly had always been a chubby baby, all the sudden she stopped gaining weight and her bowl movements seemed pretty bad for a child. Then there were a few bouts of pneumonia, around the second one our family doctor asked if anyone in our family had Cystic Fibrosis. We said no ... we didn't know of anyone with it. That was all that was said at that time about it. Well, next visit to the family doctor she asked about maybe having Molly tested. She went through a list of symptoms and even though Molly had lots of them I think we were in denial ....then one weekend when my grandparents had came to visit, as they were leaving they both kissed Molly goodbye. My grandmother said "oh Molly your skin taste so salty". At that moment my heart sank and I knew it was time to call the doctor to schedule a sweat test for Molly. On Feb. 7, 2001 we went to Children's Hospital in Birmingham Alabama for the sweat test. After having the test we were to go to the pulmonologist office for the results, sitting in the little exam room it seemed the doctor would never come in. Finally he did though and the moment he looked at me and told me to have a seat I knew Molly had Cystic Fibrosis. I will never forget that feeling ... awful for your child to have something that you can't do anything about, nothing I could do could fix it or make it go away. Such a helpless feeling. I think the first few years after she was diagnosed were the hardest. Things can still get hard but I have learned you can't sit and mope, you can't just lay down and cry ... that isn't going to help anything. You just have to fight, you have to do everything possible to keep her as healthy as you can. I am one that NEVER lets her miss a breathing treatment or her meds. I have said from the beginning that I may not can cure her but I never want there to come a day where she's really sick and me have to say well maybe if I'd done her breathing treatments better she wouldn't be this sick. I know we are doing all we possibly can for her. I do feel bad that I don't do a better job in CF awareness or fundraisers for CF research. There are some mothers who do just great spreading the news and having fundraisers. I guess this blog is a small way I can spread some awareness.
I have so many people even to this day hear me talking about Molly and they'll ask, what's wrong. I will tell them about the CF and they'll say I had no idea, she looks normal. They say you would never know by looking at her she was sick. Well ... that may be so but believe me her life is nothing at all like a healthy child's. During school most children are still snug in their beds at 4:45 am , not Molly though. At that time she is getting out of bed, getting a drink to help clear her throat and putting on her vest to get her breathing treatment going. In the mornings we do Albuterol, Hypersal, Pulmozyme then either Tobi or Colistin (depending which month, she alternates between the two) during the time she's doing these nebs she does the vest for 30 minutes. After we finish this it's time for breakfast, in the mornings she takes 10 to 12 pills. Also, before she eats she has to take her creon 10 which helps her body digest her food, she takes 4 with meals and 2 to 3 with snacks, really depending on what kind of snack she has. At night she does a second breathing treatment, the albuterol, hypersal, and either Tobi or Colistin and 30 minutes of the vest again.
It is very normal for CF patients to develop diabetes, Molly has been borderline for the past couple of years so we have been trying to the best of our ability to limit her sugar intake. This is hard sometimes because she really needs alot of high protein high calorie foods and lots of fat....of course the sweets are full of calories and she needs that so she probably does get more sugar there than she really needs.
I wish these people who comment all the time about how great she looks and how healthy she looks could see all she has to go through in a day to maintain things. Even though we do everything we are supposed to there are still times she gets lung infections and has to go in the hospital for a round of IV antibiotics. We have done home iv's several times, its nice being able to do them at home sometimes but it really is hard on me, there is so much to do as far as the iv's go on top of the other everyday things we have to do. I always say I wish the CF clinic and docs were closer to home, just going in the hospital for a 10 to 14 day stay two hours away from home is so hard. You don't have visitors much because it is so far and you just feel lonely and homesick. We try to always take as much as possible for her stays, we take our own sheets, blankets, etc. I decorate the room cute for her ... that helps it feel a little more like home, but still, there's no place like home!