Hello Sunshine!

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!!

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

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 ;((

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!!

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!!

HAPPY B-DAY!!

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 :))

:((

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...

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!!

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

I find my strength in my child

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

Sleep Apnea

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

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!!

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 ;-)

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 :-)

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.

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!!!

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!

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!!!!