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!!

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.