Detailed Clinic Update

So I wanted to give you more info. on how the last clinic appt. went. First it was a crazy day. We got to Portland early so we decided to park at the bottom of the Tram & ride up to the appt. instead of riding down & back up after the appt. But I parked in a timed spot & I was doubting my estimate if how much time I fed the meter for. Then in the office the kids were getting roudy cause we were all excited to go to the Zoo & see the new Dinosaure Exibit. So my mind was all worked up. Then he said he heard crackeling and everything went in slow motion. The meter didn't matter, I wasnt upset w/ the kids, it didn't even matter that I "started" & hadnt packed any supplys. All that was washed away.

Before he started "examining" her we started talking about what made me determine that there was a need for oral antibiotics,(cause I had called asking for them about 4 days b4 the appt./she was 2 day into them at the appt.). I explained how her cough sounds when it's getting worse and that even when she's not "sick" she still coughs a little. I told him that I'm becoming too used to the coughing...that its her new normal. Dr. Powers said that it shouldn't be her normal...it's not what we want. In a way I was glad too hear that because I was wondering if my expectations were too high...for there to be no cough between rounds of abtibiotics. Together we decided that when I feel she needs antibiotics that I should bring her up to be listened to. We keep regular check ups every 3 months but it makes me think that maybe she has had congestion (enough to hear crackeling) for a longer period of time cause every month she's on antibiotics (I'll post an antibiotic time line page). They do thier job, she sounds better (to me), and a few weeks later she needs more.Maybe because we are used to a little coughing, that by the time it seems bad to us, it is actually really bad & what she needs is stronger than oral antibiotics. That's just my theory..I havnt brought it up to the doc.s yet. In any case it really dosn't matter why.... Another point he brought up is that fall is coming , so getting her lungs in the best shape we can, now, is critical.

We havn't told her yet. We have a family event planned this week so we are putting off the hospital untill next week. Every one looks at me like I'm crazy when I tell them that..but the truth is CF is a progressive killer so a week isn't going to matter. Honestly it breaks my heart cause she seems fine. I wish they would just say she sounds better, so we don't need to do it. But I know that is not going to happen...and I'm thankfull that they arn't like that. They are very agressive...I am trying to be more agressive too...doing all the treatments we are suposed to be doing. 3 hospitalization in a row..every 6 months. And the look on his face...that was the worst! The doctors & Ben are wonderful & thier compassion is true....but to see it directed at our baby...she's so full of life...she's a fighter. I find comfort in knowing that we are not wasting time...we are contiously taking advantage of the oppertunitys to do things as a family.The challange is to take the oppertunity then live in the moment.