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

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!

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!

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!!!

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

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

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

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

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.