ENT check up

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

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!

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...

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

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!!!!!

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

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%

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!!!

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!

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!!!

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"

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!

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

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.

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.