Friday, November 5, 2010

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 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!

Friday, January 8, 2010

IVs Round Two

Well, we finished the IVs for the pseudomonas, only to find out that Emily cultured mycobacteria abscessus too! It took several weeks to get the susceptibility testing completed and so we have started IVs again for this one--we are doing amikacin, cefotoxin, and clarithromycin...this is a six week treatment...then our plan is no more IVs for a looonnnggg time. Emily was sick to her stomach the first day or two, but then things have settled down. We leave the hospital today! Yay!
We took the first picc out two days before Thanksgiving so Em could be a kid for a few weeks before we had to do this again. And so glad we did as we were able to go to Virginia for Christmas and there was two feet of snow to play in. She had a blast, as did her brothers and cousins! It was a wonderful Christmas to be with family and have a white Christmas (not something we get very often in NC). We also enjoyed having Donnie home from college for a few weeks...Emily misses him terribly! Well, that's all for now, will post some pics soon, need to download from the camera...I'm a little behind with this!