CF "Cure Found"

Hello Sunshine!

2011-04-11T09:59:00.000-04:00

We had some great weather this weekend which always makes for great times!We saw the movie Hop (which Seth and I both loved equally) we cooked out, played ball in the yard, brought out the water guns, harassed the dogs with them, walked to the park, played with the neighbors, and even got spiderman ice cream from the ice cream truck! While grilling out Saturday Kevin and Seth played in the "man-cave" and practiced ball in the yard when they came in he said "dad, thanks for the best night of my life". Call me soft but I fought back tears! Thank God for great men and great weather, and of course ice cream trucks :-)

Boogies...Boogies...and more Boogies!!

2011-04-06T15:56:00.000-04:00

I am going to blame it on the weather for now since it has ranged form 50 to 79 and mostly over cast and rain the past several weeks. My poor buddy is congested, he has the dark circles under his eyes and post nasal drip at night, he was up from about 4:30 to say 6am then awoke again at 7:15 for school. I have him on every med I can think of, I went and got him a children's night time sleep aid so maybe we could get some much needed rest tonight. Tonight is supposed to be his first baseball practice and I really don't want to make him miss it but I also hate to make him any sicker by running around in the cool air (it's in the mid 60's and breezy today). Grrrrrrrr, somedays it's just really hard being a CF mom.

My brave boy

2011-04-02T20:57:00.000-04:00

I was so proud of my beautiful baby boy yesterday, he went was so nervous but refused to drop a tear during either of his blood drawings. His first pft was in the low 80's and they talked about putting in the hospital for IV antibiotics...so I asked them to do them again to be sure. He is still so young it's hard to know whats lung function and what's technic. When his numbers where still low nurse Karen came in to get Kevin and I...Seth said he needed cheer leaders. So we went in to cheer and made him laugh, he then turned to us and said "no, say Seth Seth your the best". So that's what we did and the results were............. 92% twice in a row! It just goes to show we all need someone behind us saying how great we are!!

By the time we made it home we had a message saying that his blood sugar levels were normal.

As much as I have come to HATE that word I was so grateful to hear it!

Dr appointment ;((

2011-03-29T13:19:00.000-04:00

We've got a Dr's appointment Friday to check Seth's blood sugar. Last time we went we had his annual blood draw and his sugar was extremely high, however I explained that he had a chocolate milk and double chocoate bar for breakfast, the Dr's still feel it's best to be sure. Turns out this test requires him to fast until the first blood draw then eat...wait two hours...then get his blood drawn again. Seth really HATES needles and is probably gonna fall apart at the idea of two sticks :(( I am not looking forward to Friday...

FUNdraising time!!

2011-03-22T09:54:00.000-04:00

So team "Seth's Angels" are all signed up for the 2011 fundraising year!! We have two big fundraisers coming up, one being the Belk's charity day, which is win win because you buy a ticket for $5 then when you go to belk's you present the ticket and get $5 off your purchase! Not to mention they have amazing sales that day!! Then we have the popcorn booth at the down town 4th of July festival. We did this last year and not only did we make a lot of money but we had a blast! If your in EC please come see us and support the cause!! You can also always donate online at cff.org. THANKS!

A day at the park is a day well spent!!

2011-03-19T16:42:00.002-04:00

HAPPY B-DAY!!

2011-02-08T12:12:00.000-05:00

Last week marked one year for Seth's "straw"! What started out being one of the most heart breaking and difficult times of our families life has now become quite the life saver! I truely believe having that extra nutrition has not only helped him grow (he is in the 80% for his height) but has helped him fight off little spats with the cold this winter. So to that I say "HAPPY BIRTHDAY STRAW!"
This also marks one whole year of good health and no stays in the hospital :))

:((

2011-02-01T09:44:00.000-05:00

Today is cold and foggy...aka miserable! My son is starting with the sniffles and headaches, sinus infection here we come! On the way to school he heard a commercial for under eye cream that would help with dark circles and he told me he wanted some. I said he didn't need it his eyes weren't so bad, he said that the dark circles made him look ugly and people kept asking him if he was tired. My heart broke a little...I know its something so minor but between this nasty weather lately and my baby starting to get sick and feeling self concious my mood has definently mirrored the weather...crappy:(

Seth's new hair cut...

2011-01-30T20:12:00.000-05:00

It broke my heart but here it is... Seth's new hair cut! Where as Seth loved his "surfer hair" he hated that people kept calling him a girl! He looks so grown...I can't wait for it to grow back!

OKAY SANTA WE'RE READY!!

2010-12-21T09:49:00.000-05:00

Seth should have won most animated at his school's Christmas play..

we worked soooo hard on out home-made ginger bread house...

we introduced Shady to the Christmas tree...

we made a mini me snow man ;))...

and our stockings were on the antlers with care!

SO IT'S OFFICIAL, WE ARE READY FOR SANTA!!

MERRY CHRISTMAS :]]]

MERRY CHRISTMAS

2010-12-07T13:44:00.000-05:00

I find my strength in my child

2010-11-11T15:03:00.000-05:00

Feeling a little better today and I have an amazing little man to thank for it.

Sleep Apnea

2010-11-05T18:00:00.000-04:00

So Seth did a sleep study last month or so and it showed that he had mild sleep apnea. Our CF Dr., the one who ordered the test referred us to ENT to see what could be done and said that ENT would further explain the results to us but that it was nothing to be worried about in the mean time. So our ENT appointment was today and when Dr.Han looked at the results he explained that he did not have obstructive apnea, something that could be solved by a simple surgery such as nasal polyp removal, but he had central apnea which means that his brain is not telling him to breathe. This freaks me out to say the least. He then went on to tell me that he couldn't help and that he was going to refer me back to our CF dr. Needless to say I was mad and emotional and I tend to me a little rude and out-spoken when I'm in this state of mind.... so Dr. Han found a Dr that specialized in sleep studies and she talked to us about our options and we have decided to schedule another sleep study December 14 (Merry Christmas to us huh?!) to test him again and to have him fit for the CPAP. Uhg! He's already hooked up to his feeding tube atleast 10 hours a night and his vest and neb several hours a day ( on a "healthy" day). My family keeps reminding me how much anxiety I had about the feeding tube but how much I love it now and what a huge difference it has made and saying that this will more then likely be the same way...I get it but my goodness. I know they're right but today I'm in the mood to pout and complain, and as much as our family loves us nobody can really understand what it feels like to be so helpless, I just want my baby to be safe and healthy and that feels like it has been taken out of my hands. I want him to be able to stay the night with friends with out machines and go to the pool with out people talking about his tube or play sports without him feeling bad that he can't keep up. I'm mad at the world today, maybe tomorrow will be better.....

New Pics

2010-10-19T17:31:00.000-04:00

Seth's sleep study showed mild sleep apnea, we will visiting the ENT Nov 5 to talk about removing polyps.

We had a successful walk this year with lots of support from friends and family!

Today we went on a field trip with his class to the Grandy pumpkin patch and had so much fun! The weather was perfect and so were the kids!

WALK DAY!!

2010-09-25T08:24:00.000-04:00

Today is our walk day, it starts at 9 and we walk at 10. We are super excited!! I upload pics and sponsors of the walk as soon as possible. We also have our sleep study this evening to measure Seth's oxygen level and things of that nature while he's sleeping. Wish us luck!

Good weekend ;-)

2010-09-13T13:42:00.000-04:00

The Dr. called in Bactrum, an antibiotic that he has been on several times before and so far things are ok, definently not worse so that's a good sign. However I think the only thing keeping him from being up at night is a cough med with sleep aid, but hey we'll take what we can get!

We had a nice Saturday here is is at his uncles house for a cook out Sat night. This is his dog Kalie who Seth absolutely loves, shes such a good girl. So he spent most the night playing and chasing the pup which is always cute to see!

But before the cook out we had to run to Wal-Mart and I got suckered into buying a Halloween costume months ahead of time. And not only did he have me buy his custome (batman of course) but he had me buy batgirl for his cousin so they could "team-up"!

They were so funny running around saving Gothem City!

Above average :-)

2010-09-10T19:15:00.000-04:00

Sethy making the best of the situation!

Seth is being recognized at school! Although he is not the most advanced student in his class he works very hard and impressing me and his teachers. Congrats my beautiful boy!!!

1 a.m.

2010-09-09T11:21:00.000-04:00

Do remember when being up at 1am meant you were having an awsome night!?! I know I do, but those days are long gone! At 1am this morning I was up with a sick child coughing every breathe and just completely unable to sleep due to what has quickly become a pretty severe sinus infection. I heard him getting a little stuffy a couple days ago and I knew that this was coming since the weather is changing a bit and he is back in school with so many other kids and their germs but man, it seems to get so bad so quickly. He's very calm and gentle and I'm tired and feeling helpless (I mean I gave him albuteral, hyp saline, pulmozyme, Toby, nasanex, antibiotic nasal spray, mucinex, vicks vapor rub...is there anything I left out?) remembering how much we struggled with his sinuses last year and fearing the sinus surgery talk again. But we got up this morning and went to school, it is picture day go figure, and he seems so much better just by being upright and moving around but he's bound to crash do to the lack of sleep.
And to make things even better I called Dr. Han's office at CHKD at 8am and left a message on the appointment line saying I needed to get in before the weekend if possible for a sick visit, it is now after 11 and I have heard nothing. That's fustrating. When I called his Cf Dr. to see if they had some pull and could help get us into the ENT she suggested that I see his primary first. I mean no harm because I really love his primary who is here locally but my son needs to see a specialist. And if I take him to his primary that's exactly what they are going to tell me so I am wasting time and money and taking him out of school all for what?!
Sorry to rant but I am an over protective sleep deprived mother who does not like to be put off! I'm sure alot of you out there know what I'm feeling.

FUNdraising time!!!

2010-09-08T13:36:00.000-04:00

I also wanted to let everyone know about a fundraiser that is being put on by the Chrome Pony Mustang Club here in EC! It will be September 18th from 9-3 and they are expecting a large turn out. Several awards will be handed out to the car owners who participate but one very special person will recieve the benefit aware to be decided by the CFer's that attend! I know Seth is going to be so excited to hear that he gets to choose his favorite and hopefully there will be other CFer's who will also get the chance to participate! Please help spreed the word!

Pepsi is a great sponsor and resource!

2010-09-08T13:28:00.000-04:00

Long on to this website and vote for CF to recieve the $250,000.00 that Pepsi is giving away, we are currently in third place. We could win if we all remember to do this once or twice a day! What great easy money not to mention the exposure CF would get if we won!!!!

We made it through Earl!

2010-09-03T11:17:00.000-04:00

So all the big hype over hurricane Earl and it ended up being just a yucky night and day, some winds and mild yet steady rain. Nothing too major. But you just never know around here so we prepared a little just incase with some candles and flashlights and of course securing everything outside. Seth went around at about 4pm yesterday unplugging everything that "electricical" and telling me his teacher wants me to listen to the radio to see if school will be cancelled. We did get a two hour delay out of it so we all slept in a little so that was nice, and the sound of the rain is soothing to me when I'm sleeping so all in all it worked out nice for us! Hope you all were equally as lucky!

Prayers

2010-08-31T13:22:00.000-04:00

My co-worker's son has been diagnosed with non-hodgkins lymphoma, he is only 9. Please pray for him and his terrified family.

My first grader!!!! :(

2010-08-25T11:21:00.000-04:00

He tried to smile through his tears! He was very nervous about going to school today, he kept wanting me to ask his teacher if I could stay if he promised not to play with me. I have to admit I left crying too. I felt terrible leaving with him upset but I know staying around would make it worse and I could tell his teacher wanted me to go. I'm going to have lunch with him now, I'm sure he will be fine!

More pool pics!

2010-08-19T11:33:00.000-04:00

I hope ya'll enjoy pictures as much as I do!!!

I entitled these pool party with dad.

They hid under this boat and shot me for about and hour, it was still funny to them long after it stopped being funny to me;)

This is Seth's inpersonation of Kevin! LOL!

"mom I'm not a baby any more!" I can't believe how grown he is :(

CHECK UP

2010-08-19T11:24:00.000-04:00

So we went to our CF DR for a little check up before school started and his weight was down slightly which is no real biggy we will just adjust his food levels at night- which might i add what a releif it is to not leave there crying and falling apart fearing consequences of low weight! The other thing was that the Dr. was asking me questions about whether he snored at night and what his breathing patterns at night were. Well, after talking for a while and understanding the importance of his nose filtering the air (he sleeps with his mouth WIDE open, like he could catch flys!!) versus going directly through his throat we have decided to do a painless sleep study on Sept 25. It should be pretty easy, we will just go in at 6:30 pm, they will hook the little wires to his head so we can monitor his brain waves and oxygen levels and sleep until the morning then go home and await the results. The Doc was telling me that aside from the air not being filtered we also have to see if he is gagging or just sleeping restlessly since he cant get air through his nose (he has pollops that allow very little air to get through to his brain) because this could cause hyper activity (not my child LOL!) and lack of focus at school because he is always tired and never gets to the REM sleep. Not to mention the beeping from the feeding machine several times a night waking up the whole house! Hopefully this will be an easy A and we can go on with life as usual. Thanks for listening!

Enjoying the last of summer!!

2010-08-11T10:52:00.000-04:00

We are trying our best to enjoy the last couple of weeks before school starts but considering this is the hottest summer on record in seven years it is really hard to enjoy the great outdoors unless we are in the water! How ever we do try to walk (ride around) the neighborhood a couple times a week Seth gets so hot just being out there that we have to take AC breaks! Non the less I think Seth and I have both really enjoyed being home together this summer, even if I am working from home (BTW thats VERY hard to do!) we have been able to spend so much quality time together and we all know just how priceless that it. Hope you guys are enjoying your summer too :)

P.S. Happy birthday grandma Jane!!

Birthday Bash

2010-07-26T11:24:00.000-04:00

Devin, Busbee and Seth had the biggest BEST birthday bash EVER!!! And here are the picks to prove it!

Even Batman came!

The clown stole the show ;o)

The 3 b-day boys were the guest of honor!

Then they crashed!!!!

We love summer!

2010-07-19T15:38:00.000-04:00

Fun Pics

2010-07-15T08:46:00.000-04:00

We are having fun and enjoying the summer! Here are some pics of us at the beach and with our whole family at the Japanese steak house here in town. We were saying to good bye to our cousin Dawn who was in town visiting before she starts her very exciting college career! We are so proud of you sweetie and can't wait for you to visit next summer and tell us all about the boys and parties, oh ya and the classes!

They let the "kids" take turns playing the drums. Ans yes some of the bigger kids played too!

This is a great shot if you keep in mind a 5yr old took it!

Another perfect day OBX style ;)

This is Seth's best friend from school, they had a great day together!

Sethy and Dawn! Ahhhhhh!

Family love. We might have to relocate to West Virginia! LOL!

Seth's Birthday is next week, the 20th, so we will have lots of great pics and stories to update with! See ya then :)

2010-07-06T12:50:00.002-04:00

HAPPY 4TH

2010-07-06T11:13:00.000-04:00

Happy 4th everybody! Hope ya"ll had as great a time as we did! We set up a popcorn booth at our local fire work festival and made a little over $520 (after paying for supplies of course) to donate to the CFF!! Not only did it raise some great money but it was a blast! Seth lost his tooth in the watermelon eating contest and still managed to take second place!

Thanks so much to Holy Family Catholic Church for letting us borrow their popcorn machine! And to all our family and friends who came out to help and support us!

May 15th was a BIG day!

2010-05-18T10:16:00.000-04:00

This was such a beautiful and busy weekend and we had so much fun!

Friday night we had dinner with pirates at the Musuem of the Albemarle which included dinner, games, music that the kids were able to participate in and of course Pirates! Saturday we had t-ball pics (which he could not have been any more handsome in with his beautiful hair and backwards hat) then a game. This is his third game and he finally seems to be getting the hang of it. He hit the ball both times at bat off the coaches pitch (that right t-ball no longer involves a tee, weird huh?!?) and even paid a little attention in the out field. So all in all I was a very proud mama ;-) We wanted to have lunch with daddy who was working that day but didn't have much time since we were due to volunteer at the potato festival at noon so we settled for a very romantic sandwich in the truck while Seth changed his clothes in the back seat! The festival was a blast we always see so many people we haven't seen in so long and Seth ran into several friends from school and of course his cousins. After 2 hours of volunteering and 1 hour of walking around buying this child everything in sight I was pooped and ready to head home, lucky for me he was pooped too so we found our way to our couch! All in all it was a really perfect day, hope you all enjoyed yours as well!

What did I get for Mother's Day???

2010-05-10T09:28:00.000-04:00

Seth saw a commercial on Nick for a Scooby Doo Marathon that your supposed to watch with your mom...lucky me! The good news is that he let me snuggle the while time which I LOVED!!! Not to mention several colored "cards". I've also found on Mother's Day being so thankful to be a mother to this beautiful boy (even if he did show his tail at the resturant)! Hope everyone else had a great day full of snuggling too!

The Meaning of CF family!

2010-05-06T12:07:00.000-04:00

So Seth's tummy got very upset suddenly at school on Tuesday and he had a "big potty" accident right there in the middle of the school office while waiting to take his enzymes. Turns out he's been taking his enzymes before his meals and then not really eating therefore resulting in a seriously upset stomach and apparently "EXPLOSIVE DIAHREA!!". So anyway his teacher calls me and I'm rushing to get there with fresh clothes knowing that he is akwardly standing around with poopy pants awaiting his mom to come clean it (the joys of motherhood!). When I arrive at the nurses office he has been cleaned off and his clothes rinsed out, turns out another CF mom whos son also attends Seths school (but it in a seperate hall because of the age difference) happened to be volunteering at the front desk that day and understanding the situation took it upon herself to take care of a member of the "CF Family". Seth and I both know Kim so we were both comfortable and happy to have her there. I didn't expect to feel so emotional over what started off as a wordrobe change but it was really great to see a friendly face taking care of my baby the way I would and understanding in a way that so many others would not, that shit happens to CFers. Thanks Kim, and I promise if your kid ever needs it I will wipe his butt too!!! ;)

2010-04-29T12:45:00.000-04:00

We are having a great spring!!!!

Fundraiser Sat 17th

2010-04-16T12:13:00.000-04:00

We are having a yardsale at 2506 W. Main St Ext April Sat the 17th with all proceeds going to the CF Foundation. So if you are in town please come out or if you know someone who will be please pass the word along! Thanks ;)

2010-03-18T09:57:00.000-04:00

Here's some great pics of Seth coloring while getting his feeding. We usually hook him up around 8 or 8:15 when he goes to bed but this night we hooked him up a little early (American Idol was on!!!!) so he colored peacefully for a few minutes before he finally just quietly layed down and fell asleep! The bottom pick was from swimming lessons yesterday.

On another note thanks for all your prayers my grandaddy is doing better and has been moved to step down. He was setting up in a chair for a few hours yesterday and is speaking much clearer!

Please Pray

2010-03-16T12:00:00.000-04:00

My 82 year old grandaddy had a massive stroke over the weekend and is in ICU at Sentera in Norfolk, VA. Please pray for his comfort and his peace. We do not know exactly what to expect but we are giving it to God and trying to stay strong for him. Thank you.

I no longer have a baby but A BIG BOY!

2010-03-11T09:58:00.000-05:00

Seth is doing so great adjusting to his straw and has now gained 8lbs and is in the 85th percentile! We are getting used to the feedings and as a matter of fact he woke up before his feeding was done the other morning and instead of calling for me he just wheeled his IV pole into the bathroom then to the couch for some cartoons. I wish I had been able to film it happen but I was just so awe-struck seeing this beautiful strong BIG BOY over come this opsticle. I know I've said it before but I just can't describe the pride I feel!

The top picture is Seth at his swimming lessons, he's loving them and doing great! He's wearing this swim shirt for protection (even though the Dr said it wasn't really neccessary) and just so he doesn't have to answer a lot of questions. However he is changing in the locker room with the other boys and he says no one but the adults had asked about it. And to their questions this was his reply.. "I need my straw to keep me healthy cause I really don't like to eat a lot." What a perfect answer!!!!

The other picture is proof that now matter how big they get all guys are really 5 yrs old in their minds!!!! I call this one "The guitar hero and his mini me!"

Congrats Mr Dylan Jordan!

2010-03-02T10:03:00.000-05:00

We are so proud of our Dylan for being on the undefeated basketball team that took home the first place trophy on Saturday morning!! Last night we found out he had been choosen for the all-stars team that will play March 13 & 14 in Currituck. Above you can see the pictures of our little champ, and I know you may be thinking is Seth in all the pics and the answer to that is yes. We are all very proud of him but without a doubt Seth is his biggest fan and his loudest cheerleader! Maybe after we win all-stars I can sneak him away for some private pics ;)

As for Seth he is doing well with his new "straw" gaining a total of 6 1/2 lbs to date and he looks so beautiful with his new found chubby cheeks!! I can no longer see the bones in his chest or hips and we are now in size 5T jeans, yaaaaaah! He is so excited right now because his class will be taking swimming lessons at the local YMCA for two weeks starting Monday and Seth LOVES to swim. I swear he is part fish! And he is also gearing up to play tee-ball in April. This will be his first year playing, we tried soccer a few years ago but I think he was just way to young and too sweet to steal the ball. He kept saying, "excuse me!" And he told me the other night that they didn't win and he wasn't the best but his coach told him he did a good job. I love that attitude!

On another note my dad, Seth's papoo has been a bit sick and is awaiting some test results that should be in on Thursday, so please keep him in your prayers.

Finally some good news!!!

2010-02-22T11:41:00.000-05:00

Well, actually I'll start with the bad stuff first... Seth came home from school Tuesday with a slight fever around 100.4 I believe, that night he was up vomiting. He continued to run his fever for the next couple of days and had a noticable cough that had began as him clearing his throat and had now turned into a productive cough. Anyway to make a long story short we already had an appointment for Friday at the CF clinic so we talked with the on call Dr and decided to just wait until then to be seen. By Friday Seth's fever was gone and we were ready for the big weigh in!!!! Keep in mind he had had about two weeks of over night feedings and the results were amazing, he had gained 5lbs in that short period of time. I have been trying for atleast a year and a half to do that but just could not. This brought his BMI up from 8% to.... are you ready... 66%!!!! I just sat there with my mouth hung open, I almost couldn't believe it. I knew it was going to be good news because I could see the wieght in his face and chest but I never imagined it would make that kind of a difference so quickly. The only minor concern was that his PFT's were down from 106 to 95 due to some mucus in his lower lobe. The Dr felt like this was mostly due to his missing some vest treatments right after the surgery and of course his not wanting to cough because of the pain. We are sticking to 3 treatments a day and an oral antibiotics and that should do it. Thank you all so much for your prayers and comments this has been a very difficult time for us but hopefully we can now focus on t-ball coming up and hitting the beach!

A Full Nights Sleep

2010-02-16T12:30:00.000-05:00

I am so grateful to have gotten not only one full nights sleep (the first in over a month) but several full nights in a row. We are finally starting to get a hang of this thing. Seth is back in his own room and he too is sleeping much better without the sound of the machine going off throughout the night. A couple little tips for those of you who may have this in your future: even if 1000ml is exactly 4 cans go ahead and put a half can more because some gets caught in the bag and in the tube and if the pump thinks its out it will start beeping and you have to get up and refill the bag and reprime the line which is a major pain at 2am! Also they had originally given us 500ml bags even though he was getting 1000ml a night and we had to set the alarm to get ourselves up before the machine went off and woke Seth, it turns out that there are bigger bags but I guess you have to ask for them?? Atleast that was how it was for us, now we fill the 1200 all the way up even though he only needs the 1000 and it works perfectly! Also, and this is a big one that I felt like the surgen should have told us but didn't, start your child on a stool softener right away. Having to strain right after abdominal surgery is very painful and Cfer's have enough trouble in the bathroom as it is and need no more!!

Hospital Pics

2010-02-12T12:05:00.000-05:00

I'm sure you'll understand the time line but these pictures range from our pre-surgery brave face, to sleeping off the meds. Doesn't he look like an angel!

Seth's Struggle

2010-02-12T10:32:00.000-05:00

Some of you may know that Seth has been very sick and in the hospital. He has also had to have a feeding tube put in as his BMI had dropped to 8% and his lung function had dropped from 108% to 88%. The scariest part is that we would not have known any of this if we hadnt happened to have a ruitine check up that day. He had been a little sluggish and he's never been a great eater but we had no idea he was sick. In fact we felt like we had been hit by a bus when the doctor came in and said he needed to be admitted to start IV anitbiotics and needs surgery to have a feeding tube put in asap. Aside from him being diagnosed 3 1/2 yrs ago I had never felt so out of control and helpless. This is my son, my baby, my heart and as hard as I try there just seems to be nothing I can do to control what's happening and that is the most sickening feeling a mother can have.
But... with a lot of love and support from family, friends, co-workers and some flat out strangers we made it through. The IV's went smoothe as always and his PFT's went slowly back up to 106% mean while I spent every moment thinking about his feeding tube and how it was going to affect his life. I cried every time he slept because I didn't want him to see how scared I was. It was the biggest slap of reality I had ever had and I just wanted to take Seth and run, as if I could run away from CF. He actually WALKED into the O.R. holding the nurses hand talking to her about school. I just squatted in the hallway crying in part because I was sad and in part because I was proud. It was all over in under an hour and I thought the worst was behind us. I was wrong. I was told that he would be in slight discomfort for a couple of days. That was not true. He was in pain, he was crying and begging to go home. And my son, for those of you who know him, does not do that. They had to up his amount of morphine and he spent the next 24 hours in a drug induced sleep. Needless to say I was out of my mind and looking back i feel very sorry for those nurses who had to deal with me. I can handle a lot, but not my baby in pain. He's just to good a child to lay there in pain like that. The next day he woke up and was feeling better, he was sitting up and talking, playing video games. Our next big feat was having him get up and walk, and what a feat it was. He didn't want to, he was very sore and unsure, but he did enough to get us home. Anyway a week and a half has gone by and he is back to normal and has started back to school as of yesterday. He is stronger and more sure of his self then I could ever dream of being. He has no problem showing people or talking about it and he is convinced that his muscles are already bigger from it! We went on Tuesday to get the stitches removed and by their scales he has already gained 2 1/2 lbs! So I can only pray that the worst is really over this time and we will start seeing the benefits of his new "straw". Thanks so much for all your prayers please continuing to think him. ( I have some beautiful pics I will upload when I get a chance.)

My Big Hearted Boy

2010-01-08T14:04:00.000-05:00

I am happy to announce, and hope I'm not jinxing us by doing so, that Seth's sinus infection seems to be clearing a little. For the past 12 nights he has slept through the night without the added help of a sleep aid. I was really worried that our trip to the mountains and him being out in the cold snow so much was going to make things worse but my worry seems to be for nothing. He has started back up in school as of Monday and has not been complaining to the teachers about headaches like he was just before winter break and his appetite seems to be picking up some. We go to the CF clinic on Tuesday and I am hoping that his numbers are still high!!
Also I wanted to share something with you that my angel baby did just before Christmas that made me so proud I thought my heart would explode. I was cleaning out their play room preparing for Santa's big drop off (an air hockey table and basketball game) when Seth asked me what I was doing with some of his things. I explained that I had to throw away the broken things to make room for all the great things he was going to get for Christmas because he was so special this year and that some of the other things that he just didn't mess with any more was going to go to another family who didn't have anything for their kids this year. He asked why they didn't have anything and I explained the money thing and he seemed okay with giving the stuff away. Then I see him go into his toy box (where the "good" toys were) and proceed to pick out 5 additional toys, he asked me where the wrapping paper and tape was and for my help wrapping these things up for those children. And together we sat and wrapped these toys, some of which Seth still played with, and then loaded them into the car. Keep in mind the night before he was up sick and coughing until he threw up 6 times from 3-6am. I was scrubbing the mattress and Kevin had him in the tub hoping he could be soothed into falling back asleep. It is really true what they say about children with special needs, God really does make up in heart what they were shortened in health. Thank you God for my sons amazing heart.

2010-01-07T09:37:00.000-05:00

What a great Christmas Break!!!

2010-01-07T09:30:00.000-05:00

We had the best time at the ski resort! The kids were perfect and so brave trying new things, although Seth says skiing is "a little tricky" he did really well. We also tubed , made home made sleds to go down the side of the mountain, went to the in-door water park and went to the arcade!

Cystic Fibrosis Foundation - Home

2009-12-10T11:18:00.000-05:00

Cystic Fibrosis Foundation - Home

2009-12-10T11:14:00.000-05:00

Cystic Fibrosis Foundation - Home

Golden Corral Fundraiser

2009-12-10T11:04:00.000-05:00

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

2009-12-08T12:35:00.000-05:00

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

2009-12-02T13:58:00.000-05:00

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

2009-11-30T09:50:00.000-05:00

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!!!

2009-11-23T14:16:00.000-05:00

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:-)

2009-11-23T13:54:00.002-05:00

Another Sinus Infection

2009-11-04T11:02:00.002-05:00

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!

2009-11-02T10:15:00.002-05:00

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.....

2009-10-19T10:28:00.002-04:00

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

2009-10-15T10:48:00.002-04:00

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

2009-10-05T10:00:00.002-04:00

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!

2009-09-28T12:10:00.002-04:00

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!

2009-09-22T11:56:00.004-04:00

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

2009-09-16T11:43:00.002-04:00

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!!

2009-09-14T11:14:00.002-04:00

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

2009-09-08T10:24:00.002-04:00

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!

2009-08-03T10:15:00.002-04:00

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

2009-08-03T10:03:00.004-04:00

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

2009-03-10T15:43:00.003-04:00

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...

2009-03-02T15:48:00.002-05:00

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!

2009-02-05T12:04:00.002-05:00

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

2009-01-28T14:57:00.004-05:00

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!!

ENT check up

2008-10-29T13:08:00.002-04:00

Well we survived the check up! The x-rays showed that Seth was getting very little air through his nose due to the large amount of polyps through all of his sinuses. Which explains why his mouth is always hung open when he sleeps:) However bad this sounds Dr. Han, (who Seth and I both really enjoyed) says that since Seth is not having any trouble getting oxygen through his nose and does not have a history of suffering from sinus infections we are not gonna fix what is not yet broken. I guess thats a bridge that we'll cross when (if) we need to. He has sat us up another appointment for this time next year to re-evaluate. Wish us luck... thanks for caring.

ENT appointment

2008-10-23T15:05:00.002-04:00

Tomorrow Seth goes to meet with the ENT doctor, Dr. Han at CHKD. He had an x-ray a month back that showed he has sinutitus (chances are I didn't spell that right). So tomorrow we will go in for a consultation and see what therapies and meds get added to our already extensive list. But whatever keeps him healthy. Since his hospital stay a few months ago he has been doing well, however flu season is apon us and that keeps me nervous. He looked like the marshmellow man going to school today I had him so layered up!!! Anyway, I'll keep you updated on his results! Have a great day!

Great Strideswalk was a huge success!

2008-09-16T10:52:00.002-04:00

This year was Elizabeth City's first ever Cystic Fibrosis Great Strides walk event and it was a huge success! What started out as a few family's wanting to help our babies turned into about 70 walkers and over $31,000 raised!!!!!!! I could not be more proud of the woman I worked with and of the overwhelming amount of support our little town gave us. Montero's brought out an amazing breakfast and Little Ceasers gave 15 pizza's for lunch, and I could not begin to rattle off the many companies and people who generously donated their time and money to this cause. There are no words to express my gratitude, this money goes toward finding a cure to save my son's life. Thank you to everyone who had any part in our success. I can't wait to see what we can do next year!

Bump in the road...

2008-09-10T11:25:00.002-04:00

We went into the doctor last month and Seth had another great check up, his weight was up and his lungs sounded clear. We walked away feeling great about his progress. Two weeks later Seth started suddenly complaining about his side hurting, it went from a small pain to a pain so strong that he could not take deep breathes and was crying to just lay down and go to bed in a matter of three hours. By the time his dad and I got him to the hospital he was running a fever of 102, shaking, and leaning completely to one side to help off set the pain. We were in the Albemarle Hospital for three hours, they told us his x-ray showed no pneumonia and that his blood work showed no infection but that they wanted to transport us to CHKD so the CF doctors could check him out first. I watched my 4 year old get strapped into a gurney and loaded up into an ambulance. We arrived at CHKD at 1:30 am and sat there for three and a half hours until we were finally told that the doctor on staff wanted to admit us. 7:30 that morning we were told that Seth has pneumonia in his right lung. We stayed in the hospital for four days while Seth had a PIC line put in and IV anitbiotics administered every six hours with Vest and Albuterol treatments four times a day. This hospital visit was also different in that we were on contract, meaning we could not leave the room to play or walk. After Seth was released we went home and I played nurse continuing him on the same schedule as he had at the hospital for a total of 14 days. Yesterday he finally got his PIC line taken out, he is feeling much better and is back at school today. It's funny how fast things can happen. Its interesting how my son caught pneumonia in the middle of summer having not been exposed to anyone who was knowingly sick. And it is heart breaking that my son has been admitted to the hospital more times in his four years than I have in my whole life. But even through all this Seth Soria has kept smiling and laughing, he isn't mad at the doctors for what they have to do to him, he's not grumpy about all the meds I constantly pump into him. We were laying down for nap last week and he kept rubbing my hair, I looked at him and asked how did you get so sweet. He kept rubbing my hair and said without missing a beat, "because that how God made me, special." I've never felt so blessed as I did right that minute.

We're making Great Strides

2008-07-28T15:59:00.002-04:00

So, it's crunch time! Our walk is coming up in about 8 weeks and we still have a lot of work to do. If there is anyone out there with entertainment suggestions for the day of the walk I would really appreciate them, we are so limited and I really want it to be fun for the kids because it really is their day! We are also working so hard to get coperate donations and to put together more walk teams so if anyone is interested in helping out or has any good money making ideas PLEASE let me know, we want this to be a success!!!
As far as Seth goes everything has been pretty stable this summer (knock on wood)! He has lost a little weight due to sweeting and playing outside so much but the dr suggested that gateraide would help put the salt that he needs back in his body and keep him from sweeting it all out and we have upped the carnation (thank God for that drink!!!!). But other than that we are focusing on the walk and fundraising, so if you have any ideas leave me a message! Thanks.

HERE WE GO!!!!!

2008-06-27T13:22:00.003-04:00

Thanks for all your comments, its nice to know you are being heard and understood! Well, we have a busy summer ahead of us, Seth turns Four years old next month and we are planning such a bash complete with clowns and a pony (I know what you are thinking and spoiled is an under statement!!!). And we had a big meeting last night with our EC fundraising commity and can I just say how proud I am of all of us! For a bunch of busy moms and grandma's we are really making progress towards making a difference and raising awareness! Our first annual walk will be held at Northeastern Highschool on September 13 starting at 10:00. We've got a lot of good ideas so I am sooooo excited, and to anyone who would like to be apart of our group or donate some money you can either go to www.cff.org or contact me directly at 252-599-0411! Thanks and God bless!

Finally a test came back negative

2008-05-13T13:40:00.002-04:00

We got the results back from Seth's ultasound and his liver looks perfectly normal!!!!!! I was really prepared for the worst due to the bad luck we have have in the past, but things are finally starting to settle down some with his liver being good and his weight being ABOVE AVERAGE! And as of tomorrow Seth will have a little cousin to look out for so he will need his energy! And a special hello to sweet Skylar, we love you and miss you very much, Seth stills talks about you, we hope to see you soon! Thanks for checking in.

Seth Soria is breathing at 95%

2008-05-05T14:13:00.003-04:00

Seth Soria is breathing at 95%!
We went to the doctor on friday and his lung capacity at that time was 95%. Considering he already has some damage in his left lung I wasn't sure what his numbers would be but when I heard that I almost fell out of my chair. Also his BMI is holding strong at around 50% and he has grown an inch in 6 weeks. My baby is becoming a boy! We also did the ultra sound and at initial glance everything looked okay but we won't get the full results until around Wednesday. So thank you for all of your prayers I really beleive they are making a difference.

LIFT OUR VOICES!!!

2008-05-05T14:03:00.002-04:00

So I am on my soap box today and I am hoping you all will join me. I have recently learned through a cff web cast that ANY exposure to smoke will lower their lung capacity 10%. I started thinking of how few resturants in town offer no-smoking dining and I was disgusted to see how many places my son was not going to be allowed to go to including the local bowling alley! So I have written an e-mail to my congressman telling him I want indoor smoking outlawed in North Carolina! If New York can ban it so can we! Our local congressman's name is G.K. Butterfeild and his e-mail is nc01ima.pub@mail.house.gov. So please please please join me in my fight for fresh air!

We're on a roll!

2008-04-23T16:08:00.004-04:00

Seth had another check up last week and he has gained even more weight!!! We are now up to the 60% marker. Thank God for the blessings!! The Dr. did some blood work to to check his liver numbers and everything looks normal, however she still says it feels enlarged so on the 2nd of May we are having an ultrasound done.
On the fundraising front we raised over $900.00 at the Applebee's Flap Jack Fundraiser! So thanks to everyone who helped and supported our cause and especially to the volunteers!
P.S. I have heard of a movie coming out called "Jack and Jill against the World" and one of the main characters plays a girl living with CF. It might be interesting to check out!

Hello to all our new friends!!!

2008-03-18T11:09:00.003-04:00

I am so excited about all the new interest we have gotten thanks to Nate!!! Just a little update on Seth's health; he has gained 3 1/2 lbs. which gets us out of the feeding tube worries. We have been feeding him anything and everything including three carnation instant breakfast cans a day and "butter sandwiches", but it worked!!! The bad news is his doctor is now worried he may be having some problems with his liver so we are going next month for that test. But, as you see in his most recent horse pictures he is happy and growing well. Thank you all for your support, interest, and your prayers.

"Chow-Boy"

2008-03-17T08:44:00.003-04:00

It's official. Seth is the first and only "Chow-Boy" in our entire family. :) He had a really great time riding his first horse. Too bad they don't make seat belts for these things to help ease mommy's mind!! LOL

Riding like a pro!

Hey there little partner!

"Chow-boy" Seth

What a big boy!! He even got in a little trotting action!

2008-01-11T22:31:00.000-05:00

12/2/2007 For the Elizabeth City parade we included a float for CF. Our float was just to increase awareness for the disease. We decorated a trailor, made flyers and handed out candy. It was a great day......Seth was a very good boy sitting in the float and waving at all of the spectators. Check out our pictures and see what a great float we made

Disney World

2008-01-11T22:25:00.000-05:00

9/11/2007 We just returned from DisneyWorld!!! What a fabulous trip that was. Seth was a perfect angel!! It was a great trip from beginning to end without any complaints. We went to all of the parks at least once and spent the entire day, every day, at the park. Check out our photos so you can see for yourself just how much fun we had.

2008-01-11T22:15:00.000-05:00

1/4/2008 Seth went to clinic today. He got basically good results today. He has been doing so good lately. He was recently put on an appetite increaser but haven't really gained any weight. The doctor is now considering a feeding tube within the next six months if he doesnt't gain considerable amount of weight. So please keep him in your prayers.

CFF WALK 2007!!!!

2007-10-11T11:47:00.000-04:00

WHAT A SUCCESS!! WE RAISED OVER $30,000 BETWEEN THE EC CHAPTER AND THE OBX CHAPTER. THANKS TO EVERYONE WHO PARTICIPATED IN THE FUNDRAISING AND TO THE AMAZING TURN OUT WE HAD AT THE WALK! WHAT A PROUD DAY IT WAS TO HAVE OVER TWENTY PEOPLE THERE TO SHOW THEIR LOVE AND SUPPORT FOR TEAM "SETH'S ANGELS". THIS MONEY RAISED AND LOVE SPREAD MAKES US ONE STEP CLOSER TO MAKING CF STAND FOR CURE FOUND! LETS'S DO IT AGAIN NEXT YEAR IN EC:)

Ready for my big Trip

2007-08-30T21:39:00.000-04:00

I am preparing for my biggest trip ever. My grandparents are taking me on an airplane ride to Florida to see Mickey Mouse. I get back on September 11th, just in time for our big walk in the Outer Banks. I am talking about it alot and am counting down the days. I will write again when I get back to let you know how much fun I had. I feel good right now.....pray that it will last!!

2007-08-30T21:25:00.000-04:00

I got sick again in this July. I didn't want to play but laid around too much, my cough came back, I was feeling faint in the heat and finally I lost my voice. My mommy and doctor agreed to put me back in the hospital again. Me and my family spent the 4th of July in CHKD and watched the fireworks out of my hospital room window along with lots of other children. I thought the fireworks were great and didn't want them to end. I had to get another mid line for this hospital stay. They didn't medicate me as well this time as they did the first time, so it was very painful to me. I cried the entire 30 minutes it takes to insert the tube. I was really glad to see my mommy again after that. I didn't want her to leave my sight for the rest of my visit. They sent us home after about five days with the IV. We are starting to get used to how this works but it is always hard at first. After my 14 days of IV antibiotics I was really feeling better. My doctor and my mommy knew exactly what I needed to feel better.

I'M STILL GROWING:)

2007-06-13T12:32:00.000-04:00

JUNE 8TH I WENT BACK TO CHKD FOR YET ANOTHER CHECKUP. IT WENT PRETTY WELL, I GAINED A POUND!! BUT THE DOCTORS ARE STILL WORRIED ABOUT MY WEIGHT SAYING THAT I AM ONLY IN THE BOTTOM 25 PERCENT OF THE SCALE. BUT WE ARE NOT GOING TO WORRY TOO MUCH ABOUT THAT, I AM STILL GAINING SOME WEIGHT AND WE WILL TRY HARDER TO GAIN SOME MORE:) I DID STILL HAVE THE PSUNOMONIS GROWING IN MY LUNGS SO I WILL HAVE TO STAY ON THE TOBI (INHALED ANTIBIOTIC) FOR THE REST OF MY LIFE. I REALLY DONT LIKE THAT ONE BECAUSE IT TAKES 20 MINUTES FOR IT TO GO THROUGH MY NEBULIZER!!! BUT ALL AND ALL I AM DOING PRETTY GOOD AND I HAVE MORE ENERGY THEN I KNOW WHAT TO DO WITH! THANK YOU FOR ALL YOUR POSITIVE THOUGHTS AND WISHES AND PLEASE KEEP ME IN YOUR PRAYERS. LOVE, BABY SETH (AND MOMMY)

2007-06-13T12:13:00.000-04:00

HEY AGAIN, JUST WANTED TO UPDATE EVERYONE ON THE FUNDRAISING! MOTHER'S DAY WE SOLD CARNATIONS AT CHURCH, "CARNATIONS FOR DONATIONS", AND RAISED OVER $120.00. THANK YOU TO EVERYONE WHO HELPED MAKE THAT SUCH A SUCCESS! ALSO WE HAVE OUR BIG YARD SALE COMING UP THIS SATURDAY, JUNE THE 16 AT THE OFFICE MAX PARKING LOT!!!

2007-03-27T10:54:00.000-04:00

GOOD NEWS!! I WENT TO THE DOCTOR MARCH 23RD AND I GAINED 3 POUNDS AND 1 INCH. THAT IS MORE WEIGHT THAN I HAVE GAINED TO OVER A YEAR. MY DOCTORS AND MY PARENTS ARE VERY PROUD OF ME FOR TAKING MY MEDICINE SO WELL. WE ALSO TOOK A SWAB OF MY MUCUS TO CULTURE IT AND CHECK FOR ANY BACTERIA THAT MAY BE LIVING IN MY LUNGS. I WILL FIND OUT THE RESULTS IN ONE WEEK. I WILL START A NEW MEDICINE CALLED TOBY WHICH IS AN INHALED ANTIBIOTIC. I WILL TAKE IT THROUGH MY NEB TWICE A DAY. THIS WILL HELP FIGHT ANY BACTERIA THAT MY TRY TO LIVE IN MY LUNGS AND KEEP ME FROM GETTING SICK AGAIN. BUT OVER ALL I AM FEELING THE BEST I HAVE EVER FELT AND I AM GETTING BIGGER AND MY MOMMY IS HAPPY THAT I AM ALMOST POTTY TRAINED!!!!