Monday.....

Seth went back to school today in hopes most everyone was feeling better. His sinus infection seems to be doing a little better, he hasn't needed anything to help him sleep through the night in several days now. Maybe his body is getting used to the change in weather. I found out today that a fellow Cfer here in town, Reilly, is in the hospital getting iv antibiotics for the first time and hopes to come home today or tomorrow. Please keep them in your prayers!

Hiding from the flu

Seth started coughing a bit last Tuesday and had a couple sleepless nights because of it so we decided to keep him out of school for extra treatments and some TLC. After it continued (and the diarhea started)on we though it best not to assume it was his sinuses and take him on to the doctor. Well the Doctor just agreed that he thought it was just a sinus infection and started us on two weeks worth of antibiotic. I had planned to go ahead and get his flu shot at this visit because I had been warned before not to get it too soon because the real flu season doesn't start until December or so, but because of this infection they didn't think it was safe to give him the shot. Feeling better I took him back to school the next day only to find out that 95 students had been out sick with the flu the day before, which is atleast 1/3 of the school. Having the flu going around like that is scarey enough but without the vaccination it was just more than I could take so we turned around and went back home. I feel like with all he goes through the flu is the last thing he needs (especially since we just got his BMI up to 54%, his record high) and if I could find someone to build a giant bubble to put him in I think I would do it. Anyway the plan as for now is to let him go back on Monday in hopes that most of the children will be feeling better. Meanwhile I'm getting lots of Seth and Mommy time ;)

PS Don't you hate when parents send their kids back to school when they are still sick!!! We'll never get rid of the flu that way!

Keeping Me Busy

I know you other parents with young CFers will know what I mean when I say there are some days when my baby is so happy and full of life and energy that you almost forget that they have lung disease. We woke up Saturday and he was ready to go fulll speed as soon as his little feet hit the floor! We went straight to get our pumpkin and brought it home to carve (which I'll admit Kevin may have enjoyed more then anyone!), ate a quick lunch then on to the Chowan County Fair! This child road rides that his daddy couldn't ride!!! He amazed me with his bravery and iron stomach. He road the mechanical bull and every ride he was tall enough to get on including the scrambler and the Battering Ram (I know I'm spelling that wrong). I enjoyed that fair more then I ever have in my life, watching his little face light up and putting his arms in the air like he was too cool to hang on! Of course the next day (and the one following if I'm being honest) my back feels like I spent the day in a Chinese tourture chamber instead of the fair ground. As soon as I figure out how to download these pictures off my phone I will post them, he was really too cute!

We made gread Strides Saturday!

I just wanted to thank all of our supporters for another successful year! As of Saturday we raised over $22,000!!! From what I understand we will also be taking donations through the end of October to add on to this number!! We had a large turn out and are proud to say that we had two new teams Team Madison who's daughter was recently diagnosed and a local church team. Also a big thanks you to MONTERO'S who is always so generous and provided lunch for everyone at a last minute request! As soon as I get the pictures I will post them. Also Kevin and I took the time to explain the walk a little more this year then we have in the past. (Last year I told him it was national Seth day!!!) He is now saying cystic fibrosis (or something fairly close) and knew that everyone was there to give money to his doctors to make his lungs better. I just can't explain how proud I am of him. And I will mention that he was very proud of himslef too- for finishing the walk first, even though his uncle Robbie carried him the whole time!!!

Home sweet Home!

So he made it home safe and sound with lots of great stories. Every sentence has started with "When I was in Disney World....". He has lost his second tooth while he as there, it fell right out on its own. He just suddenly realized it was gone and they went on a wide hunt to find it, turns out it landed in his nebulizer mask!!! While he ws happy to be ruinited with his parents he still really wants to "move" to his hotel room, but he says we can come too :=). Our next big event is our walk Saturday, everything seems to be coming together well and I'm really looking forward to coming together with our CF communitee and feeling the love and support from others who care and understand. Enjoy the pics!!!

Great Strides

We are preparing for our second annual Great Strides walk here in Elizabeth City and are looking for financial support from our followers. To donate to our worthy cause please go to www.cff.org and go to donate for team Seth's Angles. For every dollar donated $.90 goes directly to research in hopes of finding a cure and making CF stand for Cure Found!! If you would like to come out and be apart of the event the walk is September 26 sign in is at 9am and the walk starts at 10am, it will be held at Charles Creek Park. Thanks for your support and prayers!

Here I come MICKEY!!

So my baby is leaving tomorrow to visit with Mickey in Disney World for five whole days minus his mom and dad. Yaya and Papoo will have him so rotten by the time he comes back I'm not gonna know what to do with him. I asked him the other day what I was gonna do without my baby for so long and he said just look at me on your phone, I asked who am I gonna hug, he said just hug your phone. Good thing I have this phone to give me comfort LOL!!! He is so excited and is convinced that Mickey too is excited to see him. I'll upload some pics when he gets back! :=)

Tiger II Study

Well we were all on board to do the Tiger II study but now I think we might have to back out. Seth was set to go on the 22nd of Sept for his official evaluation and would start the meds a couple days after that, however he is going to have to go off the Hypertonic Saline tomorrow so that it will be all out of his system by the start of the new med. The problem that I'm having is that Seth has been fighting a cold or maybe even a sinus infection (which he always gets at the change of season). So I'm not only nervous about having him off something for two weeks until we get the new med I'm also nervous about him getting the placebo and going without a med of that type all together. And I know that if at anytime we think this isn't working out we can get out of the trial, I also know my sons immune system and once he is officially sick it is so hard to get him back to health again. Oral antibiotics just seem to do nothing for him, for example he was on two for over three weeks trying to get rid of his current congestion with no sign of them helping. Not to mention he is in his big boy school now (kindergarden at central) and he is around new people and new germs, plus the amount of school he will miss if he worsens because I made a bad decision. So if there are any nervous, over pretective moms out there with advise please SHARE!

getting ready for our trip to Disney World!! Seth is so excited, almost as much as we are =) we will have great pictures to upload as soon as we get back। Seth says he wants to ride everything this year, although I think he tried that last year!!