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.....

Final Bronchoscopy Results and Great Strides Kick Off Meeting

Well, after allowing Emily's cultures to grow out from the bronchoscopy for several weeks I finally had confirmation that she grew no bacteria! This is amazing news, at least we know there is not a terrible bacteria that is responsible for her slight decline in lung function. So now when we go back to the dr. next month we will discuss what could be causing this . . . like I have said previously her current function is not bad, it is just not as high as we have had it in the past.
On Thursday we had our kick off meeting for team captains for our Great Strides walk on May 30th. There were several new faces/teams--Donnie's high school National Honor Society is going to have a team, there was a mom of a one year old who was just diagnosed, and a 19 year old girl with CF who is walking in Great Strides for the first time! It was an exciting meeting to know we are going to grow our walk this year-it is only the second year we will have it in Monroe, NC (Union County) and I am so excited about the prospects!

Still Waiting

As of Thursday, nothing has grown out on Emily's cultures. The nurse did say that it can take a couple more weeks for some organisms to grow out. I know this is so because last April Emily had an excellent report and then two weeks later they call back and tell me she has ORSA--it took nearly three weeks for it to show up. So, for now we wait and wonder. A part of me wishes she would culture something so we could treat it, especially since we are baffled by her decline in PFTs--at least if she cultured something there would be an explanation for this.
I have been sick most of the weekend--I get these stomach attacks that have all the symptoms of gall bladder disease--and it takes me a few days to get over it.
Douglas won another basketball game yesterday. He had eight points himself--I didn't get to see it, but I got a nice recap from the boys.
Well, need to go work on tax stuff, so have to go for now!

Some Good News

Well, Emily had her bronchoscopy yesterday. The doctor reported that her lungs actually looked really good--not as much secretions as they thought there would be. So, we did not do an admit and IVs at this time. We will wait for the culture from the bronchoscopy to find out what she may be growing down there and then make plans for our next steps from there. We went ahead and stayed the night up there with my folks (they already had a room booked)--that way we had some time to rest before we traveled back home. I got home today in time to see Douglas' basketball game. He had a great game with many assists and his team won 42 to 29--they lost to this team the last time they played in a double overtime so today's was an exciting game!
Will post again when we get results!
Have a wonderful rest of the weekend.

Emily Update

Well, I talked with Emily's doctor yesterday. Since she has been on oral antibiotics since early November, and she is still not "clear", and we have had a slow decline in PFTs and she has lost some weight . . . we are going to do a bronchoscopy. It has been two years since Emily has had one, so the doctor thinks this may help us find something we are missing. We may start IVs at that time as well, depending on what they find with the bronchoscopy. She will probably go in on this Friday, but we will finalize the plans on Monday. I have already talked with Emily about this as she likes to have a full grasp of things that are going to happen to her (after all, this is the girl who since the age of 4 has refused to look away when they draw blood). I am apprehensive as we have not had to go down this road in so long, but I try not to show it in front of her. It will be a long week back to school with all of this looming ahead, but I know in my heart that we need to do something to get her back to her baseline. I will follow up from there . . .in the meantime please pray.