My Family

My Family
3 kids with CF

Thursday, October 21, 2010

No regrets, just love...

We have a nurse two days a week now and it has been wonderful. It is so nice to be able to just be mom and still have all their medical needs met. I have time to sit down and play chess with my daughter, do art projects with them and I get to go do things on my own. I have really needed this. Michael is on oxygen at night now. The doctor feels it will give his body a break from working so hard to breathe and burning calories. I am frustrated that we had to do that but he seems to have more energy during the day so I guess it's a good thing. I am also frustrated because we got his prognosis and then they sent us home. I feel like we should be doing something, doing anything to fight. I guess we are doing it little by little but the lack of results is driving me crazy. He gains, then loses, doesn't throw up and then does throw up. It's maddening. I hate feeling so helpless. On a positive note, Matthew and Abby are doing well. Matthew has never lost weight his whole life and Abby's cough went away and her pfts came back up after a round of Levaquin. Matthew got his vest and loves it which is such a relief. The vest is so tiny it would be cute if I didn't have to look at it as something he needs every day just to survive. Michael's prognosis and everything that has happened in the cf community lately has really taught me that there are no guarantees in life. I am working really hard to let my kids know that I love them. That being said, I will leave you with a quote from a Katy Perry song that really hit home with me and is how I am choosing to live my life..."No regrets, just love."

1 comment:

  1. I love the quote. I'm sorry for all that Michael (and you) are going through. I'm glad you will get to have a little more time to just be mom. What a blessing! I can't imagine having 3 sets of daily pills, nebs & PT to do...really I struggle with just one. You are an amazing mom.
    As for the trials facing our CF community, they have really hit home with me too - makes me scared to death to be honest. **one day at a time - we're all doing the best we can - and our kiddos know we love them and like you said "no regrets, just love" ... just keep, keeping <3