About time

That I stop in and say Hi to you guys!!
I hope everyone is well.

We are all doing well.
Michael and I have been pretty in this "Our Time" mode and we have taken many small trips ALONE together, cut out alot of phone calls and text, and really just been very much into each other and each other only...How selfish..Oh well its a rare thing.

M has a cough..pretty sure its due to sinus drainage. We got the results back from his sleep study and..Get ready for this one..Im sure some of you will find it as funny as I did. The Dr. said "Your breathing is wonderful" (sure thing I thought he had cf) and then he says "I think you have some allergies" (good thing I thought he had cf) then he says "You should see a ENT doctor" (good thing thats who occupies my #4 speed dial) So in detail M stops breathing 4.2 times an hour...In order to have sleep apnea you have to stop 5 times or more. What he ended up saying was..Michael does seem to be very sleepy..It only takes him around 8 mins to fall asleep and 18-23 mins is what is considered "normal". Michael also comes out of a deep sleep 45 times in a 6 hour period and normal is 7-12. So pretty much the end answers we got was that M has "allergies" that are messing with his airways, He gets woke up alot more than the avg. person due to "coughing" and last but not least we were told that from a sleep stand point M is fine that he sleeps during the day mainly out of bordem.
Man that was a informative visit.

So we made a appointment to see one of my fav. doctors!! Dr. Swain (sinus master)
And briefly before he and M went totally in to movie and video game mode I was able to get some ?'s and answers in.
Dr S says that if M thinks he is tired due to snoring (very rare for M) that he could trim that little dangle piece in the back of his mouth (of course he had a proper name for that piece)and he also said if it dont get better through the rest of the year that he will talk to Dr. Sindel (Cf doctor) about "gutting" M's left side like he did the right a few years ago. This was M's idea...He says he has no problems on his right side that its only the left that stops up and dont "move" air.
So Swain told us that right now "the juice is not worth the squeeze" so just go home use the neil med sinus rinse followed by afrin and come in when its unbearable to get "sucked out"

So that where we are health wise. Lungs seem to be pretty good...kinda starting to crackle a tiny bit at night but we have our clinic visit in Aug so we will know more then. He has been working out a good bit so Im excited to see if his numbers go up!!

Anyways everyone else is good.
Slimer is being a sweet little monster


We attempted to make Titus an inside dog...Slimer loved it but I still dont care much for the whole peeing in the carpet thing so hes out again...He likes being outside better anyway.


And everything except Slimer thinking he is 100% human and sitting like so..is normal =)


XoX

An Angel Went Home

Death is never easy.
Ever.

My Mam~Maw went home today.
She was by far the sweetest person ever.
She was 90 and had the spirit of a 10 year old.
She would never wear her hearing aide and constantly say HUH?!
She would hide cookies under her pillow and not have a clue why her sugar was 500.
She taught me that Noxema was a girls bestfriend.
She was never without a tabloid.
Ever.
She got up every morning and put her make up on no matter what.
She feel asleep reading the paper.
She woke up and swore she was not sleeping but thought she may need a little nap.
She did not miss Wheel of fortune or Jeopardy.
Ever.
She kept her hair done and even dyed it red.
She drew on her eyebrows and they were perfect.
She saw the good in everyone but would talk about you when you took the sweets away.
She was precious.
She was funny.
She was a mess.
And she will be MISSED.

Please keep my family in your prayers for the upcoming days.
I dont think any of us were ready.

R.I.P. Mam~Maw
I ♥ U!!

Question for Cfers and movie lovers

Hey guys
I hope you all have a wonderful, safe and healthy 4th!!

Do you guys know any good movies about CF like life Breath?
No so much teaching about CF but more of like an actual movie that CF takes part in?
Thanks in advance!!

XoXo

Ahh the smell!

Hey guys!
No news is good news!
We are all doing well!
M is still having a little sinus crap going on and has yet to have a sleep study.
He has however only had 2 naps this week! Woo Hoo!

Michaels dad got 1 of the cool sleep number beds so he gave us his bed and WOW!
Its the biggest most comfortable bed EVER!!! With that being said I can go in to the title of my post.

Mrs. Anna (for new readers thats M's mom that VERY unexpectantly passed away in Nov.)
always smelled amazing! Im talking like lure you in sniffing kinda good..And not just her but the house the bedroom her car...always smelled better than anythinng I can describe. And so anyway the smell has not (Thank you God) faded. As soon as you open the front door of their house the smell hits your nose instantly. Its a comfortable thing...1 thing thats still the same. Well guess what came with our mattress? Thats right!! The wonderful smell!! Now its not always good when someone brings her up to M or something reminds him BUT like I said this is a comfort thing. Granted M can not smell now BUT he could at 1 time and he says her very much so remembers the smell and he loves knowing that our house has the sweet wonderful smell of Mrs. Anna.

Death is so odd to me..
Like I still go in and think shes gonna be there.
Why? Its been 7 months.
When will it sink in?
I sure do miss that womans cookin! Man she made some mean poppy seed chicken. Along with 50 thousand other wonderful dishes.

M deals so well with death. Its good in a way. CF plus depression is never a pretty site but its really sad that death has become such a part of him its almost like second nature. He hears about it replies and goes on about his day.
Amazing..Yes but just sad. All the more reason a cure REALLY needs to be found.

Anyway Im going to go enjoy our new smell good bed with my wonderful, amazing, funny, sarcastic M!

I hope you all are doing wonderful! And even tho Im not posting much you are ALL still very much in my prayers!!

XoX

Finally Grilling Goodness

1. What do you like most about your skin?
Umm well it turns brown pretty quick =)



2. Does your spouse mind grocery shopping for you or with you?
No M pretty much does any and everything with me and very rarely complains.
I Love Him!


3. Do you have access to a pool for the summer?
Yeppers


4. Do you have plans for Father's Day?
Umm No



5. Is there anything that terrified you as a child that you find .... now?
Umm I dont do bugs and anything that means messing with my bends.


6. If you could do something instantly, what would it be?
Cure CF


7. What would you do to entertain visitors from out of town?
They would be outta luck if I was not entertaining enough lol


8. If your best friend owes you money, do you bug them until you get it?
Nope

Sorry I have not done one of these in so long! I kinda forgot about them =(

XoX

Cf Question

Are any of you Cfers tired alot?

M will got to bed at say 10pm wake up at 10am and take a nap from 2-6 and then be ready for bed again at 10?

We still have not had his sleep study...they were booked for quite a long time.
Anyway M being sleepy so much has increasingly gotten worse and Im kind of concerned now.
Dr. S says the sleep study will tell us more but I have really never liked the whole wait and see game cf loves so much.

Xox

For the Somer Love

Hey my love!
I almost cried when you asked me what a yoohoo was.
I must share with you my most fav. quilty pleasure ever!!!!

Its not like any other and I strongly strongly encourage you to try it

Hope your all having a good day!!

Confessions

Hey guys I was tagged by this awesome blogger to join her new little thing where each week you get a new task to complete and blah blah...anyway this week was to write a post full of confessions,
Here I go

I confess that I am way way OCD
I confess that I love Michael Perkins more than anyone will ever know
I confess that I love Slimer more than any human should love a dog
I confess that I cooked dinner in the crock pot tonight and Im not washing it befor I go to bed.
I confess that I wish I saw Mallory Zafiris everyday of my life because I love her like woah.
I confess that I have the worst case of restless leg syndrome ever!
I confess I clean my ears like 5 times a day.
I confess that I look to Ronnie "runsickboyruns" post to lift me up when I am down
I confess that I miss Gracie Loo more than you know.
I confess that I cant blog about everything I want due to blog stalker.

So I think thats enough

Oh wait

WARNING!!!!!!!!! Girl talk will follow this sentence! Guys go away!

I confess that I ate 2 bags of hot peanuts followed my a strawberry yoohoo and THEN I ate a reeses..dont stop there not only did I ask for a strawberry yoohoo but I needed a choc. one 2 and a KING size kit kat...totally a fatty moment
I also confess that I asked M to go get me all of those things on a spur of the moment basis while I was crying and didnt know why.

Would anyone like to guess what time of the month it is for me?

XoX

Boys Just Wanna Have Fun!

With this post I will bring better news!
Or pictures.
Or whatever.

As you all know by now I love love love me some Michael P & Slimer.
They are 2 of the most amazing people/dog ever.

Slimer however has recently been going through a rough patch.


A Funk.



Call it a identity crisis if you will.





It seems hes not the only one with this identity issue..






Or this just possibly may be M..at Wal Mart..at mid night..dressed up as a ghostbuster..sigining a autograph




With Mallory & John.

But stranger things have happend.







And we always have a blast and thats all that matters right?

XoX

Come to my nice Cozy House?

Its been a exciting week in the Perkins home!

5 Years ago M decided he wanted a snake.
5 Years ago I was a madly in love ( not so bright ) teen with said M.
5 Years ago I bought ( yes as in PAID ) M the snake that was just so tiny and tucked away in a glass cage.

Her name is Kaa.
She has never struck or bit anyone/thing besides her food.
I have never cared much for her but never really had a problem with her either.
She lives in her glass cage locked away in another room.
To be honest I never even see her...In all honesty I may have seen her 10 times in 5 years.




In her 5 years of life she has grown to be 4ft and remained to be a "good" (HA!)snake. This is all wonderful. Just fabulous right?

Also in Kaa's 5 years of life she apparently has decided she dont like being tucked away in her nice little glass cage.

She escaped.

Yes a 4 foot snake named Kaa is loose in my house.

Where I sleep and eat and pee and laugh and preform CPT and roll in the floor with Gumby and Slimer.

Have you my friends ever tried to sit on your toilet while being completly aware of every inch around you? How about sleep 8 hours in the bed where the cover runs over your legs causing you to instantly be awake, out of bed and looking around crazily with no contacts in my friend? Oh or when you need to stick your hand down in the cabinet to get that cassarole dish for dinner? Or turn on the light switch in the dark?

Dont you all want to come visit me?

XoX

Putting it to rest

We can now all put the whole "April rose" thing to rest

http://www.azcentral.com/news/articles/2009/06/11/20090611BabyScam.html

Please remember B still needs all of our prayers

Please tell me

That my eyes are not being honest with me about little April Rose???????
Its real right?
And shes ok right?

Im hoping Im confused or have missed something big today on my blog absence.

Help!!

Hey guys!!
Nothing new going on at our house!
M is doing awesome =) ;) =D :)








Slimer is also doing fantastic






And we have a new family member
Bloggies meet Pooch take 2




Ok now for the help part!!
I need to know which cup cake is the prettiest...Im talking like wedding cup cakes!!

Cup Cake "A"


Cup Cake "B"


Cup Cake "C"


Cup Cake "D"


Cup Cake "E"


Cup Cake "F"


Cup Cake "G"


All of them






Now I need you all to let me know which you like best!!
=)

XoXo

Michael Ran!

1 whole mile!! walked another mile and then ran a 3rd mile!! He's in better shape than me!! And they say he has CF phsssssh!

Going to the pool to soak up the sun =)
The sun is wonderful today, M feels good and Im turning off the cellular for some nice sweet sun time with my M!

Hope you all have a wonderful day =)

XoX

Sorry

Hey guys!
Im sorry I have been a crappy blogger!
Ive been busy.
We had a ER (10 hours) visit thanks to a arthritis flare up...I had no clue it could/would affect the spine and make M unable to move out of no where. But hes ok now and thats what matters.

I have been on a crazy mission to find the perfect wedding dress with Mallory.
Had to switch my phone from at&t to verizon which took 2 days!!
Been on a roller coaster ride called "keep M from buying a horse"...Yea I really mean that...We live in the heart of the city..where in the heck is a horse gonna go???

Nah really I dont care if he gets 1 I just dont want it to be a impulse decision ya know.

Oh and speaking of changing phones...I got the lg versa...uhh it ROCKS!!!!

*****Complete scatter brained subject change******

I have been walking at a local park with Mal the last week or so and tonight M went with us and RAN!! yes M ran around the track!! He ran 1/2 a mile!!! I was so very very proud of him!!!!

Anyway Im off to bed...or to lay..whatever it is I do at night when the rest of the world is sleeping.

**Please say a special prayer for M & I we have a personal issue thats not so easy on the heart right now =(
Nothing bad with us just something thats affects us..Another 1 of the things Cf try to take away kinda thing.**

Night guys
XoX

CF update

We went to clinic today and only had to wait 2 hours to be seen =)

I am very pleased to report that M's functions are up from 55% to 81%!! His FEV1 went from 2.05 to 3.56 wooo hoooo!
All his vitals were good =) Including his pulse ox which was 96-97! He was 5'9 and a magical 183 pounds!!
Dr. S told M how pleased he was with his weight and he feels like that is a huge part in him being as healty as he is right now ;)
No med changes but he did order M a sleep study test. We are kind of concerned about how much M wants to sleep.
He all jokes aside could sleep 18-20 hours a day if he had it his way and we all know thats not good so hopefully this sleep study will let us know why hes not getting "restful" sleep.

For his birthday I got him a PKE meter..for all you non ghostbusters fan the PKE meter is something important that they use in the movie..He has been wanting the replica since I met him so I finally broke down and splurged on it. He was so happy he and now he takes it every where with him. He spent his time at clinic using it on all the people..Some of the looks were quite priceless and Dr. S has convinced M to come to his house dressed in full GB suite with all props and investigate his house just to scare his wife! The 2 of them are a mess together!! Hes an awesome doctor and I just love him!! Anyway thats my good clinc report and Ill leave you with M being his goofy self harassing the people at the doctors office today.

Paul's Wedding

Hey guys!! We had alot of fun going to Paul's wedding! Paul is one of M's oldest friends (23 years) and hold's the title of "best friend" but a few years ago Paul moved away and M has not got to see him much. As you can imagine M was super excited!! Jason and I went to the church when M had to go which was 3 hours early for pictures so we got super bored and took lots of pictures =) Yours Truly Jason & I Man of the hour *Paul* Steven (Pauls brother) Paul, Rip (pauls dad) and Michael Goof Ball! Call it LOVE Or call it GROSS ;) AWE!!!! They were so cute! Paul cried almost the whole time and it was so so sweet!! Kudos to you Paul! 2 Cute Lookin handsome for his wifey!!


Michael was on his best behavior which will be displayed in the following videos



We met some really awesome people (Amber & Lonnie) that actually live like 5 mins form where we live and seem like the flippin mirror image of us!! Our hotel was nice but the bed was horrid so when we got back we were all exausted!! So over all it was a quick and fun trip =)

XoX