Monday, February 11, 2013

Just Thinking ..... Would?

When things calm down my brain goes into over time.  I'm weird I know, but when I have my brain on a mission it's hard for me to to stray from my point.  Now that I am doing well, Danny is doing amazing, and life around here is should I say it.......slowing down.  It gives me time to dwell in uncharted waters.  Dan and I were on our way to Minneapolis, MN to check out a handicap accessible RV, and while on the 5 hr drive we have a great time to chit chat.  While during our talking there was one comment I made that just turned on the thought process.  Out of no where....here we go.  I said .... "Could you imagine how much more running we would do if Danny was in all the music and sports Avrianna is in?"  And ...............

***BAM*****

My head was spinning.

What sports would Danny do?
Do you think he would play an instrument?  Which one?  How many?
How would he do in school?
Jock? Geek? Grit? (wow just aged myself there)
Would he be the leader or a follower?
Would he have many friends or just a few?
Sassy or Shy?
What would his voice sound like?
How many, if any, of the medical issues he has would he have if he was "typical"?
Would Avrianna and him get along or have some serious sibling rivalry?
What would he be when he grew up?
Would he get married?
Have kids?
Would he LOVE his momma?
Do you think we would still be in our first house on Elm St (man I loved that house)?
Would Avrianna be different if she had that brother to play with.....like most of her friends?
How would our lives be?

Wow ~ I could go on and on.  I really hate to go there as I know Danny doesn't know all the the dreams and wishes I had for him are not there and have changed.  He goes on day to day just being Danny and enjoying the day the best he knows how.  This morning I walked in his room gave him a kiss on the cheek said "Good Mornin Mr O" and I got the biggest smile.  Man that just makes my day, but also just breaks my heart.  I've learned more from this lil boy already then I will ever be able to teach him.  I LOVE him so much........and would/will do anything to fight for him to be here with me as much and as long as I can......but I can help sometimes to wonder.  Just wish the circumstances were different for him some days :(

Wednesday, February 6, 2013

Too Good to be True?

I have to say things here continue to be on the up n up.  BUT I'm always cautiously optimistic just wondering and waiting when the next hurdle will need to jumped.  For now we are all doing WONDERFUL!
At least it's pretty all covered in white!




It's been frickin COLD here the last few weeks along with tons of snow.  Dan says it's just like Groundhogs day around here ~ go out and plow snow to do it again the next day.  We are suppose to get another 5-7" in the next 24hrs, so I'm sure he's just excited about all of that.

Dan has passed the state First responder course and now is not only a Town of Neenah Fireman, but a Town of Neenah EMR.  Way to GO!!  So between the fire dept, EMR calls, Laundries, and gearing up for the 2013 racing session....he can't say he's got nothing to do, lol.

Danny is ROCKIN this back fusion!  He's better then before ... and I'm so happy for him.  The only real hiccup is his GAS.  Man he is full of it, LOL.  We are feeding him all of his food now during the day with no overnite pump feedings, so his gut is working like a "normal" persons.  He has NEVER NOT had overnite pump feeding before and I think his gut is trying to figure out what the heck is going on.  He is having a BM on his own, just about everyday and it's great we don't have to aid him too much more with that...but it's so NOT Danny's norm.  It's a good thing, but again not what Danny is used to.  We are trying to figure out if we can calm his gassy gut down.  Danny's been chillaxing at home in front of the fireplace watchin movies, but I'm sure he'll be glad when it warms up and he can get out of the house more.

Look how great this boy heals, not to mention how straight n tall he his~  FANTASTIC!!

Avrianna is doing great.  It's amazing to me how fast time is going with her.  We were driving to the High School the other day to drop her off for dive practice and she had the nerve to tell me...."guess what mom?  In 3 yrs I'll be going to school here".  Ummm, WHAT?!?!  Where is the time going...is there a stop button or at least a Pause?  I'm so proud of her, she does so well in everything she does.
Ringing Chimes ~
video

Doing a 1 1/2 ~
video
I think I have found the right balance now to be able to not be in so much pain or in a fog with my daily living.  It's a great feeling and I hope it will continue :)  I've been so well I'm even walking on the treadmill more.  The only real frustrating part is with me exercising and really making an effort to watch what I eat.....I have not lost ANY weight!  REALLY?!?  I have made an appt to see a health coach to see if they can help me on improving my diet and exercise so I do safely and healthy.  I don't want to "diet" per se I want to make a life change not only for me, but for my family.  I know that they believe MS and many other disorders come from environmental.  I have MS, Fibro, Hypothyrodism, I'm border line diabetic and high cholesterol, and labeled obese.  I know alot of my weight issues come from the meds I'm on and the disorders that make it VERY hard to lose weight, but I'm worth trying to improve myself whenever I can.  I'm optimistic that I will be able to control my health issues better if I  do better for myself.  I'm not looking at starving myself, or run a marathon, or be a model....I just want to be better in whatever sense it comes from.

Can you believe it?  Dan and I are going to go out on an over nighter,  just the two of us.  This was no small feet to accomplish, but it's going to happen.  Between our amazing nurses to coordinate around the clock care and then having Avrianna hang out at a friends house. I'm pretty excited!  I'm sure the kids won't be bothered at all that we are gone, but I'm sure I will have some anxiety not being with Danny.  I can count on one hand how many (3x) nites have NOT been with Danny.  The last time Dan and I were together alone overnight was for our birthdays in Sept 2002, 3 weeks before Avrianna was born.  I think we are due :)  Everyone says whatcha going to do......SLEEP, lol!  I hope....I'm Danny's mom, nurse, caregiver ~ however you want to to look at it ~ over night so I can't remember the last time I've slept through the nite without having to get up, I'm usually up at least 3x with him through on average nite.