Sunday, July 22, 2012


We managed to get a break from the hot n humid weather for a couple days, but it's now back.  It might as well be 40 below as we are cooped up inside anyways.  At least we don't have to bundle up to go outside, lol.  In a way I'm glad with weather has been unbearable lately because then I don't feel "AS" bad that Danny hasn't been able to go outside.  Even if he was well enough he wouldn't be able to go out with the weather that it has been.  Danny is still slow n steady on the recovery front.  He's still having respiratory issues, but his surgery site is and always has been fantastic.  His incisions are all healed up and he didn't have any problems with the actual surgery ~ YAY!  It's what the anesthesia does to his system that just kicks his BUTT.  We went to CHOW 2 weeks ago just for a post op and they were concerned that he was on the vent and still having breathing issues so we went ahead and had xrays done.  SURPRISE!  Pneumonia in the right lung, really??  Despite our diligent schedule of respiratory therapies he still got pneumonia.  AHHHH!  Mind you he was only under for 30-45 minutes :(  so doing bigger, longer surgeries just scare the hell out of me.  The next one on his scheduled is for January, not only is it for a lengthening but also Danny's baclofen pump will be replaced as the battery life is running out.  This will be HUGE on his body.  I don't want to think about it as it's months down the road, but it's hard not to wonder what it will be in store for him/us after that surgery seeing he is 4 weeks out post op for JUST a rod lengthening and he is still depending on Puff.  SIGH!!  I have had many heart to heart conversations the last few weeks with Danny's nurses and Dr's to gain a better quality of life for Danny.  The last year has been very difficult on him with all the illnesses he has had and then throwing at least 2 surgeries a year for the rod's just too much.  I've voiced my opinion to Palliative Care, Dr. Kasper, and Ortho so now we all need to sit down and get a better game plan with whats in the best interest of Danny.  Man I hate these conversations, as there is always things said that's hard for a mother to hear, but it needs to be done to maintain a better quality of life and so we are ALL on the same page. I suppose I've grown callous in the years to many of the statements/comments towards Danny and his "abilities" to fight and indure, but as I always have said.....My PROMISE to him is and always has been ~ As long as he continues to fight I will continue to fight for him!!  As long as HE is still there, I will do EVERYTHING in my power to help him.  There is always the FINE line that us families dance between with being selfish and being selfless with our kiddos.  I hope n pray I always have the right path in my mind, but it can be so easy to follow the wrong one.
 I found myself using the excuse to not go places lately as Puff has been around, but I need to stop being so BLAH as Puff is portable and just except the fact that this is going to be a "New" normal for us.  Good thing we have the wheelie bars on, lol.  I've tried to "Dress" puff up alil and put some key chain stuffed animals on it to make it alil more "fun".  It's bad enough people just see the equipment and the chair.........
And not this Sassy handsome face :)  Their loss as he's one amazing boy that everyone/anyone he meets should be privileged.  This lil boy has been through so much and endured so much then any "normal" person and he still fights.  He's a HERO in my book!!
 I had a friend on FB post the other day that gave me that "ah ha" moment and reminded me of feelings/thoughts lost.  I don't remember it word for word...damn MS (at least I have an excuse, lol)  but here's my version.  I can only hope it helps someone else too.......Looking at boys Danny's age and feeling bad or guilty that he can NOT do what they can is something I (and I think most of the SN world) deals with from time to time.  But Danny is doing what Danny does and knows best (and he's damn good at it) and he is happy and content, so I should be happy and content that my lil Hero is being ALL HE CAN BE!  I LOVE YOU LIL MAN!

Avrianna is having a great time this summer in diving.  She managed to FINALLY get the 1.5 down on the board.  I knew she could do it!!  Way to GO "A"!!
 A few weeks ago Dan and I surprised her with an airplane ride.  It was SO COOL!!  She's been on a BIG plane before when she was wee lil and of course doesn't remember it, so she's been asking to go on a plane. I told her we were going to "Church" and she found herself in an airport, lol.  We took a ride to Shawano (about a 30-45 min ride) had breakfast and came back.

 Very excited and nervous :)  ~ Dan or Avrianna ??  BOTH!!
 Checking out the scenery ~ it was beautiful and amazing
 We flew over Aunt Brenda house in Medina
 Our Pilot ~ he was wonderful.  We'll definitely be looking him up again
 We flew over Nanny n Chuck's house in Fremont on the River
 And of course we had to check out our place :)

Avrianna hung out last weekend with Aunt Brenda n family on the water and had a blast.  Here she is with my step brother Mike riding on the jet ski.  Want to guess what she wants now.....LOL....  Go visit Nanny n Aunt Brenda more :)
 With the heat and staying inside more I've gotten my sewing out again.  Here's the new bag I made "A".  I think I might have to make myself one now.  It turned out pretty good, if I do say so myself 
 Thankfully these teeth were loose, she pulled them both out one right after the other.  Geez "A" if you're that bored......find a different hobby, LOL
 Now the guinea pigs have an outside playground.....with their own watch dogs, lol

Tuesday Dan and I went and picked my new car.  Dan bought me a 2004 Ford Mustang Cobra convertible  in Competition orange.  This car is 1 of only 72 made in this color and body style.....he says it's rare and collectible like ME, aweeeeee.  And look it's MS orange :)
I've always wanted a convertible mustang, but when I went out to get one......I found out I was pregnant with   "A" and got a Mini van instead.  So Dan thought it was be nice to Surprise me with it.  SO COOL!!  It's a 6 speed manual and it's AWESOME!!  I'm glad I can still drive it.  The weakness in my legs makes it alil harder to drive a stick, but I'll keep driving it till I CAN'T no more.  
 Driving it has made me alot more aware of my speed limit as I really can't "blend" very well in an orange cobra, LOL.  It's definitely a head turner :)

Look what I caught yesterday in the yard.  SO BEAUTIFUL!  We watched it for alil while before we let it go.
 The garden is just LOVING this weather.  We should have a wonderful harvest this year.  Dan went alil nuts with Zucchini (I think there is 7 plants in there) so ideas would be appreciated on what to do with it.

Well thanks for stopping by the checking on us!!  We hope you are having a safe and wonderful summer.

Saturday, July 7, 2012

Baby it's HOT outside !!

Last week was Brutal around here with the heat n humidity.  I'm SO VERY THANKFUL for a/c!!  The pool isn't even cool as the water temp as reached 94 degrees.  The kids say it's refreshing, but I beg to differ.  Indoors for me :)
I wanted to see how hot it gets in the sun ~ I actually got up to 114.8 one day :(
With the heat there have been some pretty intense storms that just pop out of no where ~ On Monday I was suppose to play volleyball (as a sub) in this uncomfortable heat, but much to my delight as we pulled into the parking lot it just down poured and hailed...YAY ~ no volleyball for me :)

The Rainbows have been AMAZING.  This is taken on our way home and just beyond the trees where the rainbow goes down....that's where our house is.  How cool is that!
Looking out my backyard at the wall cloud coming our way ~
Finally the humidity and heat broke last night for awhile!  It should be more comfortable outside now.  I hope it lasts.  That heat just isn't healthy,

What else is there to due in this heat but ..... recover from surgery, right?  Well that's what Danny has been doing.  It's been a ROCKY week post op, but I think he's finally on the road to improving.
 Every 6 months the surgeon goes into the same spot and lengthens the rods in his back (grows Danny taller, ahhhhh stop).
This is day 2 post op ~ looking good (the redness around the incisions is glue, don't be alarmed....they really need to find a better color, geez)
Day 5 post op ~ the swelling and redness is going down alot
Danny started to 3rd space (retain all fluids) and he gained 3 lbs in a matter of 1.5 days and become VERY puffy.  Even his poor eye lids were swollen :(  Thankfully today he started dumping his fluids, on his own.  I'm sure the pressure and discomfort from all the extra fluid has been one of the sources to some of his troubles this week.
Once again Dr Kasper has been our "attending" while at home for recovery.  He is our ROCK!!  I don't know what we would do without his support, knowledge, and concern for our Lil Man.  He continues to go above and beyond the call of duty ~ and we are FOREVER indebted to him.  He has such a special place in my family's hearts.

The 4th of July was definitely a different one for us.  We normally are Up North for the 4th, but with Danny's recovery and the played out much different.
We still managed to be in the spirit of the Holiday :)
Danny did what he's been doing best.....he slept the day away :)
Avrianna and I braved the heat for about 2 hrs and I took her to the Community fest at Riverside Park.  OMG was it hot!!

We tried to cool off by putting our feet in the water while watching the water ski show :)
We were able to see some of the fireworks that were being set off around our home.  So it all worked out.  As long as we were all together I really didn't care where we were.  Avrianna enjoyed watching the Lil Firework show I put on in the driveway and then we were off to bed, back in the comforts of our a/c..
I hope you all had a SAFE and Happy 4th of July!