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!

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!

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.

Late Update on Great Strides

Well, I am a little late getting an update on the Great Strides walk in Monroe. This is the second year for this walk (they used to have it here about 10 years ago). We more than tripled our original goal of $9,000--I was amazed at what all of our teams accomplished. It was fun to have several new teams this year. Hope we grow again next year! The weather was perfect and everyone had a great time! I've included some pictures of the day!

Emily's Team 2009!

Emily and her second grade teacher, Ms. Marks,

and her first grade teacher, Mrs. Malley (with hubby)

Emily and "her sign"

Panthers Kickball Game--CFF Fundraiser Event

Douglas, Emily and I spent a hot afternoon at the Kick CF event in Charlotte (http://www.kickcf.com/). Several Carolina Panthers players have a kickball game with a local business. It is a fun time for all. They raised about $60,000 last year--not sure what the total was today, but I am sure it was substantial. Kudos to Panther Jordan Gross for starting this annual event last year (he has a niece with CF). I met a lady (wished I had gotten her name) who had made beaded bracelets for a CF fundraiser for her Great Strides team. She has two boys with CF--both have mic-key buttons. It was so hot they had their shirts off and Emily saw them and asked what they were. I have told her in the past that she might have to get one if she did not keep eating good. So, she asked lots of questions about feeding tubes (which I did not have a lot of answers to) and really paid close attention to the boys. I could tell she was deep in thought and I think it was yet another one of those learning moments she had about CF.....Here are a couple of pictures from the day!

Antibiotics, continued and Spring Break

Well, we finished three weeks of Bactrim--which did not seem to touch Emily's current congestion--so now we are in the middle of three weeks of Augmentin to see if that will do the trick. Hopefully! We go back for a clinic visit in two weeks so we hope for a good report and improvements by then.

For spring break we met my folks in Gulf Shores, Alabama. They had their camper at the state park and Douglas, Emily, and I stayed there with them. We really enjoyed the time with them in such a beautiful place. We went to Fort Morgan (biggest naval battle of Civil War), the beach, an amazing trail, Pensacola to see the Blue Angels. It was a busy time but so much fun. Donna and her family were there the week before so we overlapped our stays by a couple of days so "the cousins" did get to play together for a bit. Here are a couple pictures from the trip.

Time for Antibiotics and other info

Well, Emily has done so well for the last couple of months, but as fate would have it she has developed a cough and is starting a three week run on Bactrim. We are hoping this will do the trick as she is not sleeping well from coughing which is interfering with her day routine. Time will tell....

Big brother Donnie just got a job at the grocery story--this will be a great learning opportunity for him while also helping him put some money in his little nest egg for college in the fall.

I was playing around with pictures this weekend and reminiscing. I found some pics from when Emily was hospitalized for the first time. Here's one I especially liked with her all decked out in her Carolina outfit (GO 'HEELS). My how my baby has grown in four years--and my how much our lives have changed.....