Cystic Fibrosis Foundation - Home

Cystic Fibrosis Foundation - Home

Cystic Fibrosis Foundation - Home

Cystic Fibrosis Foundation - Home

Golden Corral Fundraiser

Our Golden Corral Fundraiser is officailly underway. Here is a picture of Seth by the tree. I like for him to come and be apart of it so he can understand the hard work and importance of it. I also take the chance to talk to him about the fact that people give money to us so we can give it to the doctor to make his lungs better.

On another note Seth has been out of school since I got the phone call Tuesday afternoon that his head was hurting and he was laying it on the table not wanting to participate after P.E. I am hoping he will be able to go for atleast a little while tomorrow so he doesn't fall behind.

Tis the season

I took the boys to see Santa at wal-mart and then there he was again at the mall (how do explain that?)

Anyway Seth had an appointment with the ENT on Friday, the Dr was actually able to see puss up his nose from the infection. He also said something that I has not thought about before but probably should have, that the bacteria that grows in the mucus in his lungs is probably growing in the mucus in his sinus'. So we started an anitbiotic nasal wash and another antibiotic nasal spray along with a oral one that he is going  to call in for me today because he is not  getting any better. It is very fustrating as parents for Kevin and I to watch him suffer, working so hard to cough up mucus that just won't clear and especially at night when he is so tired he does these really weak coughs because he is just so worn out from doing it all day and all night. The other night he coughed so hard he gagged on the thick mucus and threw up twice. And the past week it has been so bad I'm having to give him night time meds just to get him to sleep, the down side to that is he is so sluggish in the morning and keeps laying his head on his desk at school. We leave for our ski trip in two weeks and I would really hate it if he was sick the whole time, plus I'm worried about the pressure from the elevation change.  Does anyone have any advise on how to treat a severe sinus infection??

A New and Easy Fundraiser

Our local Golden Corral is allowing us to put up a Christmas tree and sell CF ginger bread ornaments for donation. I hope to have the tree up by this weekend so please spread the word so we can start our 2010 fundraising a little early this year!
Also we are taking Seth in to see ENT on Friday afternoon to see if we can do anything more for this sinus infection. He's had it for about three months now and he is so tough he rarely complains about anything but has been saying recently that his head hurts and I'm positive it's from the sinus pressure. So keep yor fingers crossed that Dr. Han will have some magic up his sleeve!!

CVS/pharmacy and Warner Home Video team up to raise critical funds for cystic fibrosis

CVS/pharmacy and Warner Home Video team up to raise critical funds for cystic fibrosis
This is a great new fundraiser being done this year!! Please participate and spreed the word to others so they can too!!!!

Ready for the Holidays!!!

So far so good this season, other than some aggervating sinus infections Seth has been doing really well and is steady growing and learning. Having him in "big boy school" has just been blowing my mind. He is learning things so quickly, like counting backwards!! I can barely do that! He just impresses me more and more every day. And he is very ready for Christmas, everytime a commercial comes on he's yelling OOO I WANT THAT! He has quite a list, Santa will be very busy and very broke:-)

Another Sinus Infection

We went back to the doctor yesterday for a little check up and to get SHOTS!!!!! First things first his PFT's were 108% so we were doing our high numbers dance. But somebody tell me how him growing an inch and losing a pound takes his BMI from 54% to 32%??? He was coming in for a check up from his last two week antibiotic treatment for a sinus infection and it turns out he's gonna be on another antibiotic because we just can't seem to clear his little head up.
So here comes the shot, he knows it's coming because we've been talking about it all morning, and he's gotten to where he really hates shots and acts a complete fool to try an avoid it. So the nurse comes in and he lets his body go limp and starts sweating and crying immediately. He's waiving his hands and saying "wait wait can't we talk abou this". I try to comfort him and talk his down but he's being so rediculous that me mom and two nurses hold him down. He's setting on the edge of the bed with mom holding his legs I'm setting to one side of him holding his arm and keeping his head turned away from the needle and the nurses are on the other side holding his skinny little arm still (to be in the 32% BMI percentile he's REALLY strong). So we're telling him he's gonna get an ice cream and what will make this better, how can I make you happy and just as the nurse sticks the needle in he yells A TOY! We giggle and start putting on the band aides and all and he shrugs his shoulders and says, "that didn't even hurt". This child is just too much for me!

Happy Halloween!

We hope ya'll had a wonderful Halloween I know we did! Since we have such a large family and lots of little ones we thought we would try something new this year so I had Seth and Dylan help me decorate their dads trailer and we went hay ride style! We had such a blast and were able to hit up so many houses without the kids getting overly tired (last year dad and Kevin had to take turns carrying Seth cause he tired out so early!). We had 16 people total plus one very cute dog! And my baby gets so excited and wants to be the first of the kids to get to each door that on three different occassions he ate the dirt! Two ditches and one time I think his own foot!! However neither one phased him, he just jumped up and kept going! Gotta love little boys ;)

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!!

2009 Cystic Fibrosis Walk

The 2009 CF walk is coming up really soon, Sept। 26 at the Knobbs Creek Park starting at 9am। I have to really get serious about fund-raising। Hope everyone will come out and join us...it will be another great walk...I am sure of that!! You can sign up at www.cff.org click on the great strides walk....HOPE TO SEE YOU THERE!!!

The waiting game

The appointment with Dr. Han went as expected, anti-biotics and steroids for the next three weeks. The polyps in his nose have grown so large you can see them just by looking up there with a flash light. The steroids should help bring them down some and hopefully when that happens and the infection is gone we will get a new CT scan to see what's really going on. At that time we will know weather or not we have sinus surgery in our future. Seth, as always, is hanging tough and is back to school full time. And Thursday we leave to go skiing to West Virginia, it will be Seth's first time! The place we're going has a large indoor water park so he is so excited! He is really deserving of a great break, I'll let you know how things go!

Our roller coaster ride...

Just when we thought we had dodged a huge bullet by getting his lung to re-inflate we get a call that he has grown something new in his sputum. It's a bacteria we have all heard of and learned to be very scared of, the commom name is MRSA. From what I had heard from others and in the news about this bacteria this was going to really hurt Seth's lungs and speed up his disease. However after talking with the Dr. my fears have been slightly controlled by the fact that there is no reason to think at this point that the MRSA is actively doing any harm and since his PFT was at 107% they are not even going to treat it at this time. Also his sinusitous seems to be giving him trouble because he is coughing constantly waking up at night but his lungs sound clear, so we will see Friday what the ENT says. If he says it is not his sinuses we will look again at the possibility of treating to MRSA. Meanwhile we are doing the nasal cleansing. If you have never done this and are curious what it feels like stick your head in a swimming pool full of chlorine water and inhale through your nose. Seth wanted me to try it first and so I did, it's extremely close to torture. But I have to say it does work, I am squirting the water through one of his nostrils and the water with globs of green mucus is pouring out of the other nostril and his mouth.
The poor kid has not been healthy since the begining of November, it has been one thing after another. I am just praying for some helpful results on Friday, we really need something to bring up our morale. Please keep Seth in your prayers.

We Did It!

We went to the doctor on the 30th and Seth seemed to be doing better so we were optimistic about the results but still aware of the very real posibility that we may still need to be admitted and his lungs "scrapped". So he was first weighed and he had gained about three pounds so of course we were estatic, then he did his PFT's and came out with a record high of 110%. I didn't even know that was possible!!! He has never blown higher than the mid 80's, and considering his prior perminant damage I never even hoped for numbers that high! We then went and took the x-rays and they sent us home saying they'd call with the results. I heard back from them Monday 2nd and they said things looked much better that the lung had expanded back out substationally but there were some streaks left on the x-ray that we still need to work on clearing out through huffing.
I've just got to add that my little soldier has been so tough and understanding through all this I just can't get over how special he is, I just couldn't imagine going through all this without his beautiful spirit.

Collapsed lung

Seth has been sick with a cough and just lacking energy all during the Christmas holidays. The doctors simply put him on an oral antibiotic to see if that would help. On 1/3/2009 Seth told us that his chest hurt so of course we called and made an appointment for 1/5/2009. The doctor weighed him and found that Seth has lost about 2 1/2 lbs. now down to a little more than 37 lbs. and also took x-rays and found that Seth's right lower lung had collapsed. And of course we already knew that his left lung has permanent damage from where he was not diagnosised in time. Just when you think it can't get any scarier...it does. We were shocked that he was not admitted into the hospital but was given very intense treatment regiman for the next four weeks. He is taking four vest treatments a day and 8 treatments in his nebulizer. Combined it takes four hours a day and that is in addition to all of his oral medications. That may not sound so bad until you think that Seth is only 4 years old and typically has LOTS of energy. He is only awake about 10 hours a day and has to work in three meals, treatments and play time. His entire day is comsumed by his illness right now, not to mention what it does to his parents. We are so afraid of what may come next if this treatment doesn't work. Our next appointment is 1/30/2009, so please keep us in your prayers, and remember that we need to find a cure for this disease before it gets too late, so please give generously!!