Dec 21, 2010

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 :]]]

Nov 11, 2010

I find my strength in my child




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

Nov 5, 2010

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.....

Oct 19, 2010

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!

Sep 25, 2010

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!

Sep 13, 2010

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!

Sep 10, 2010

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!!!

Sep 9, 2010

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.

Sep 8, 2010

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!!!!

Sep 3, 2010

We made it through Earl!

So all the big hype over hurricane Earl and it ended up being just a yucky night and day, some winds and mild yet steady rain. Nothing too major. But you just never know around here so we prepared a little just incase with some candles and flashlights and of course securing everything outside. Seth went around at about 4pm yesterday unplugging everything that "electricical" and telling me his teacher wants me to listen to the radio to see if school will be cancelled. We did get a two hour delay out of it so we all slept in a little so that was nice, and the sound of the rain is soothing to me when I'm sleeping so all in all it worked out nice for us! Hope you all were equally as lucky!

Aug 31, 2010

Prayers

My co-worker's son has been diagnosed with non-hodgkins lymphoma, he is only 9. Please pray for him and his terrified family.

Aug 25, 2010

My first grader!!!! :(

He tried to smile through his tears! He was very nervous about going to school today, he kept wanting me to ask his teacher if I could stay if he promised not to play with me. I have to admit I left crying too. I felt terrible leaving with him upset but I know staying around would make it worse and I could tell his teacher wanted me to go. I'm going to have lunch with him now, I'm sure he will be fine!

Aug 19, 2010

More pool pics!

I hope ya'll enjoy pictures as much as I do!!!
I entitled these pool party with dad.
They hid under this boat and shot me for about and  hour, it was still funny to them long after it stopped being funny to me;)

This is Seth's inpersonation of Kevin! LOL!

"mom I'm not a baby any more!" I can't believe how grown he is :(

CHECK UP

So we went to our CF DR for a little check up before school started and his weight was down slightly which is no real biggy we will just adjust his food levels at night- which might i add what a releif it is to not leave there crying and falling apart fearing consequences of low weight! The other thing was that the Dr. was asking me questions about whether he snored at night and what his breathing patterns at night were. Well, after talking for a while and understanding the importance of his nose filtering the air (he sleeps with his mouth WIDE open, like he could catch flys!!) versus going directly through his throat we have decided to do a painless sleep study on Sept 25. It should be pretty easy, we will just go in at 6:30 pm, they will hook the little wires to his head so we can monitor his brain waves and oxygen levels and sleep until the morning then go home and await the results. The Doc was telling me that aside from the air not being filtered we also have to see if he is gagging or just sleeping restlessly since he cant get air through his nose (he has pollops that allow very little air to get through to his brain) because this could cause hyper activity (not my child LOL!) and lack of focus at school because he is always tired and never gets to the REM sleep. Not to mention the beeping from the feeding machine several times a night waking up the whole house! Hopefully this will be an easy A and we can go on with life as usual. Thanks for listening!

Aug 11, 2010

Enjoying the last of summer!!

We are trying our best to enjoy the last couple of weeks before school starts but considering this is the hottest summer on record in seven years it is really hard to enjoy the great outdoors unless we are in the water! How ever we do try to walk (ride around) the neighborhood a couple times a week Seth gets so hot just being out there that we have to take AC breaks! Non the less I think Seth and I have both really enjoyed being home together this summer, even if I am working from home (BTW thats VERY hard to do!) we have been able to spend so much quality time together and we all know just how priceless that it. Hope you guys are enjoying your summer too :)
P.S. Happy birthday grandma Jane!!

Jul 26, 2010

Birthday Bash


Devin, Busbee and Seth had the biggest BEST birthday bash EVER!!! And here are the picks to prove it!
Even Batman came!



The clown stole the show ;o)

The 3 b-day boys were the guest of honor!



Then they crashed!!!!