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.