We are having a great spring!!!!

Fundraiser Sat 17th

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 ;)

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!