Long Lost Blogger

Well I haven't exactly been a very good blogger in the past months. We survived the last rounds of IVs in February and had a healthy and fun summer. Emily participated in a research study on hypertonic saline at the CF Center at UNC--it was a great opportunity to "give back", and we learned a lot in the process. Near the end of the study they did cultures and we discovered that the ugly pseudomonas had reared its ugly head once again! So, Emily started Tobi for the first time. Now, several weeks later, her cultures have come back clean! Yay! But, don't get too happy, too fast.....she had trouble hearing out of her right ear. Immediately we all thought it was from the antibiotics, but as things should turn out, thankfully, the reason was due to fluid....so today, Emily had a tube placed in her left ear. It was an easy task compared to some of the things she has endured, but so thankful we could restore her hearing. And now, we face winter --head on! Our goal, and our prayer is to stay healthy! No hospitals, no IVs! Let's see if we can do it!

Almost Three Years

Well, we were one month shy of being off of IV antibiotics for three whole years! Unfortunately, we went for a check up at Chapel Hill last Tuesday and found out by Friday that Emily had cultured pseudomonas. This was the first time she cultured this so it was a little overwhelming. Anyway, we came in and did a bronchoscopy yesterday and they put in a picc line. Emily has been the bravest girl ever, once again. When they changed the tape on her picc line today she didn't even cry--she said "that's the first time I didn't cry!" I was like "so true". Then she proceeded to tell me a memory she had from her first hospitalization when she was four--"mom, remember when the lady came in to change my tape and I locked myself in the bathroom." I had forgotten all about this, but it sure brought a good laugh for us this afternoon.
We hope to be home by Friday if all goes well. We will do IVs at home for three weeks. I will try to be a better blogger and update like I should--I totally missed some important milestones since my last post, like sending my oldest off to college. Will do a better update when things get settled.