Saturday, June 21, 2014

Return of the Blogging...

Well, it has been three years, almost to the day, that I last blogged!  Where did the time go? Writing is such a release for me, and it is something I truly miss. So, I shall give it a go, once again.  But this time, I will have a "partner in crime" with my writing.  Emily has expressed an interest in blogging, so we shall see if between the two of us we can keep this blog alive!
So, I guess we will spend some time doing some posts of our comings and goings of the last three years. Our biggest family news was Donnie's recent graduation from NC State with a degree in aerospace engineering---yes, we are beaming with pride about this!
On a professional standpoint, I changed schools to a high priority school--being a principal of such a school was a huge dream of mine.  However, the past couple of years Emily has struggled with her health due to the mycobacteria abscessus.  It got to the point where I had to do some real soul searching and make decisions that were best for me and my family.  As such I requested to change to an assistant principal position for a year or two so I can concentrate on Emily's needs a bit more.  It is still a lot of work, and a leadership role, but just a little less stress.  I have recently been reassigned to my new school and I am very much looking forward to my next journey in my career!  I will return to the principalship when the time is right!
During the past two years, Emily's lung function has plummeted to the mid 40s--her current level.  This has been a difficult journey with an intensive treatment plan that included surgery to have a port placed last May. She also had sinus surgery in March to help with her breathing and sinus issues. Now, if we can just get those lung function numbers up, up, up.
We do go to Chapel Hill on Tuesday for a check up and most likely a new treatment plan.  I will definitely keep you posted.

Wednesday, June 22, 2011

A Delayed Update

So May has come and gone and June is nearing its end as well and I have been a negligent blogger once again. To be quite honest, May and June are just two tough months in the world of education. 
So, we went to Chapel Hill on June 2....Emily's weight was back to 77 pounds and her lung function was at 97%...needless to say we were thrilled and so very thankful. Seems like we finally put a halt to the mycobacteria....hopefully it won't rear it's ugly head again for a long, long time.  I suspect by the end of the summer her lung function will be even higher after a summer of swimming and eating!
The kids ended the year on a great note.....Donnie had a great semester at NC State, Douglas finished eighth grade with two high school credits, and Emily (even with all the school she missed this year) was able to pull off some great scores on her EOGs (in NC education lingo that means "end of grade" standardized tests). 
A highlight since my last update was the Great Strides walk this year.  It was held on May 14th (my mom's birthday, which made the day even better). So many people were able to come out this year--a bunch of Emily's soccer family, some of her teachers, and many other friends.  Emily's Team ended up raising over $8,500--our highest total yet in six years!  I am so proud and appreciative of all our family and friends who participated through walking and donating.  I truly believe in my heart that our efforts will not go unheaded and our Emily will have a cure sooner, rather than later.  I've added some pics from the walk! Enjoy--and if you couldn't be with us this year, hope you can make it next year!

Wednesday, April 27, 2011

Continuing to Fight M.A.

So we are expected to get out of the hospital in the next day or two.  We are both ready to go home (haven't been there since Apr.7)--Emily misses Scooter terribly as well as her dad, brothers, and friends, of course.
We have started a six week course of treatment to fight the mycobacteria abscessus, again.  She cultured it at a 3+ level (on a scale of 1-4) so that is pretty significant and her doctor truly  believes it is what is causing the drop in lung function.  We are using amikacin, azithromycin and imimpenim this time--she has tolerated all three of them very well.  Did lung function testing on Monday and we are up to 89%--that is a great improvement from 74% in March, but only half way back to our baseline of 105%--in reality we may not get back to 105% but, I believe we can get close to that by the end of this treatment.
We are also treating the aspergillus that Emily has recently cultured.  We are using Voriconazole for it and hopefully it too will be gone! 
Amazingly, no other regular bacterias have shown up in her cultures which is a wonderful thing!
For so many years now, I have always felt we were able to keep all the complications of CF at bay, but in the past 6 months, I realize how quickly things can change when someone has CF.  I hate that this is going to be my Emily's life...constantly battling the next bacteria that comes her way....while she is definitely a fighter, it makes me sad that she will be fighting always.....well, until that cure is found. 
I am going to include some pictures from our hospital stay in this posting.  We do a lot of interesting things to stay busy! :)

Thursday, April 21, 2011

Hospital Stay #3 for 2011

Hopefully this is the last time the words "hospital stay" will be in the title of my postings.  After a few days in Va visiting with cousins and grandparents, we returned to UNC yesterday to do a pH probe for 24 hours to determine if Emily could be having silent aspirations which could be causing some lung function issues. 
After the team talked at length about Emily's cultures-she is still culturing the mycobacterium abscessus and aspergillus--it has been decided that we will treat the m.abscessus again because her right lobe is still filled with secretions and her PFTs remain in the 80s. One of the antibiotics will be changed this time, but it does mean another six weeks of IVs.  Needless to say Emily wasn't thrilled with this news, but hopefully this time will do the trick and we will get her lung function back to where it needs to be.  Emily continues to amaze me every day--she, and all those that deal with CF, have a strength in them that is beyond any strength the rest of us have or ever will have! 
On a happy note we had a great time in VA--picnic, miniature golf, and the roller skating fundraiser at Rollerworks (Hugo's to those of us who grew up in Fauquier County). This event was to raise money for our Great Strides Team for the walk in May.  It was a great night--enjoyed seeing a lot of old friends and family as well!

Monday, April 11, 2011

Hospital Stay #2 for 2011

So, we arrived at UNC Children's Hospital on Friday, April 8. Emily started her day with a bronchoscopy--since nothing had shown up on the cultures and it had been a couple of years since she had a bronchoscopy Dr. wanted to make sure we knew exactly what was going on. The bronch made for a long weekend of fever (and some nausea), but by Sunday evening she was feeling a lot better. The bronch revealed that her lower right lobe is filled with secretions and there seems to be a lot of infection which explains the drop in PFts to the 70s/80s (she is normally well over 100%). We have started on two IV antibiotics--tobramycin and timentin--two new ones we haven't used before. These may change depending on what the cultures reveal tomorrow from the bronchoscopy. We will be staying at least until Friday, maybe longer, depending on all the variables--lung function testing, culture results, etc. Dr. needs her here to do everything we can to get her numbers back to where they were. And we pray that we can make that happen. Emily is in good spirits--she always seems to crack a joke or give one of her infectious smiles...even when she is feeling bad--so many of the kids here seem to be that way.....guess we could all take some life lessons from them! :)

Wednesday, April 6, 2011

IVs Round 2

So, Emily finished her last IVs for the mycobacteria, only to go back to UNC to get her picc line out and discover that her PFTs were in the 70s (she has NEVER been this low). So, did cultures which didn't show anything and went back again to find we were still in the 70s. So, she started Pulmozyme for the first time.....returned to Chapel Hill yesterday and we are now up in the 80s, but her normal is over 100! Did a CT scan of her lungs too and sbo the doc wants to put her in the hospital to treat staph and pseudomonas. As you can imagine Emily is quite tired of all of this, but at the same time....we will NOT accept that this is a new normal for her. So we fight, and we fight hard. I think that is the hard thing about CF--you fight hard every day to stay healthy. It takes a resilience and determination beyond just about anything I've ever seen. And one of the hardest things in the midst of this fight is that people don't really "see" CF. So many times I've heard..."she looks good" or "she doesn't look sick"....for the most part, it's on the inside, so no, she won't look sick even when she might be.....and while that is a good makes it hard for people to realize how hard Emily fights every day. Ten medications each day, 4 to 6 pills each time she wants to eat and and 90 minutes of treatments a day is what it takes to keep her breathing and maintaining her health the way she needs to....she is a fighter and always will be....because we WILL beat CF! And as I end this post to my blog I realize this little excerpt leads right into Great Strides....won't you be a part of Emily's Team? Help her fight the fight of her life? Join our team and help us raise some funds or make a donation if you can't join us! Let's do it! Every penny counts! Click here for Emily's Team! The walk is May 14th!

Sunday, February 27, 2011

Guys and Dolls

So last night Emily was truly amazing! She spoke at the Guys and Dolls annual fundraiser for the Cystic Fibrosis Foundation-Charlotte Chapter. The event has some "guys" and "dolls" who create packages (mostly mini-vacation/long weekend type) to auction off! There was a silent auction as well. In the midst of the live auction they had Emily tell her story. And let's just say there were grown men shedding a few tears! She told her story with such poise and truthfulness that I don't think she even realizes what an impact she has on others when she does this--but she does it because she knows the money towards research is her future! Right after she spoke they did "Bid for a Cure" and raised $20,000 in about 10 minutes--all from the words Emily shared from her heart. My mom was able to attend with us this time which was wonderful to have her there to see first hand how inspirational Emily can be when it comes to telling her story.

Speaking of mom--she and dad have been staying with us through this round of IVs. It means so much to have them here with us when the IV schedule can be draining on all of us, Emily especially. Having Grandma and Papa around make these long days a little easier and happier for her. As I sit here this warm and sunny afternoon, updating my blog, our sweet Emily is sound asleep on the couch. These treatments sure take a lot out of her but no matter how bad she feels or how sick she gets with her stomach from the antibiotics....she has a strength that is beyond words!

I have included a few clips and pics from last night's event! Thanks to the girls in the Charlotte office for their work on this event and thanks to all of those who attended last night--you made a difference in the lives of others!