This is Tami (Izemmom) not logged in. Once again, I told myself I'd go to bed and not post tonight, but I just had to check this thread to see how things were going for you. A few things:
1. Julie brings upa good point about having older sibs help. Isabelle does like to do pt on Emily once in a while. She learned how to "Make two fingers" and tap her baby sister. No matter that she taps a toe or leg and not her chest. It's adorable and brings tears to my eyes every time. She also has a baby doll that goes pretty much every where with us that gets "applesauce and beads" and pt. She once got a "nezulizer" treatment, too! This was all spontaneous on her part, no prompting from us!
2. We do share your mutations. I don't know which is from me and which is from my husband, but the newborn screen did show those two. I'm not convinced that same mutations = same progression, maybe someone here knows more about that than I. I can tell you that Emily's nutrition has been excellent! She's gaining weight well. She was born with meconium illeus, but did not require surgery to resolve it. Lots and lots of "irrigations" and finally some suction, but no surgery, thank God. She cultured psuedomonas early on, so I'm not sure how much effect that has had on her lung disease, but it's currently classified as "mild." We've had some minor blockages (termed so by our pulmonologist) ard currently use albuterol, pulmozyme, TOBI, prevacid, prednisone (For 5 days right now to try to ease a nasty cough), we have had augmentin. And of course her enzyme and vitamin. Seems like I'm missing something. Anyway, the point is, its ALOT of meds. Feels like all we do is give her something in some form or another. I tell myself with every treatment "We're buying her more time."
3.As far as trying to plan the next year...oh, my. I don't want to sound negative. I completly understand the need to get a picture of what it will look like. If I had known beforehand that we would be affected by cf, I certainly would have done the same thing. You of course need to make some decisions about work, sitters, etc. But, please, please, please don't spend too much energy trying to develop the perfect or right plan. Our experience has been that not much has gone as we had planned. You won't really know anything until you get there. And, then, you'll make the best descision you can, and you'll move forward.
You need to know that our little Emily is just an amazing baby. She has a spirit and spunk that take my breath away and a smile that stops my heart. She is ten times more determined to get what she wants than here sister ever was. (And THAT makes me fear for the terrible twos!) She is beautiful, and, cf aside, she is PERFECT.
You also need to know that I have learned so much about myself over the past 6 months that I would not know with out cf. I am stonger than I knew. I am a great parent - so is my husband. I feel entitled to say these things, now, becasue I prove them daily. This diagnosis is not the end of the world that I though it was. And, believe me, I thought it was.
Please know that you are so far ahead of the game by being able to ask these questions. I was so shocked for the first few months that I couldn't form a complete sentence. Here you are planning to move ahead in a healthy way. WOW! You'll do fine.
Forgive my rambling. We had a particularly bad day today. I spent most of it feeling completly overwhelmed by cf. And angry at it. It feels really good to be able to sit here now and remember that this is just one bad day out of the 200 great ones we've had with Emily so far. I feel like I"ve climbed a mountain today. Hope you don't mind that I dragged you along!
