Friday, February 28, 2014

friday...I have been waiting for you all week...

It has been a long week. Not a bad week per say just a long week. I totally bagged on the blogging thing yesterday. I know. EPIC blogger challenge fail but we had a busy day with Miss Courtney and by the time we got home, changed, diapered and settled, we entered into three hours of seizure activity that left us both more than a little drained. 

She slept through the night and seems to be doing better today. She is quiet which mean we are still tired but that's OK. I am just glad we avoided the ER. It was a close call but Miss Courtney did what she needed to do to avoid a little ride in the ambulance. Thank you Lord. 

Anyway, here is a look at yesterday through my iPhone. First up, we have her PT team, Miss Pam and Miss Katie getting her on her hands and knees to strengthen those shoulders of hers. She could NOT do this six months ago and now she does it without fussing. Her head position was fabulous. Look at those pigtails. This Mama's heart was swelling with pride watching her work so hard. 





Then Courtney got to ride home in the front seat in the wheelchair van. As you all know, the van lift broke this past weekend and so we can't transport her in her wheelchair. We use her stroller at the moment and that is working OK. Jerry says it "smells like a $1000 fix". I am sure it will be. There was smoke and an electrical smell coming form the lift unit, and that is never a good sign. The lift has never had issues except with the switch wearing out. So our plan is to get the tires Jerry needs for his car this month ($900 for four tires...just kill me know) and then we will figure out how to pay for the van lift. We won't take it to the wheelchair place until we have some funds to deal with it. I am thinking May at this point. 

Until then, Miss Courtney is riding large. 

Look at her expressions. They are so funny.

My expressions, which are not shown here, we not so funny. Thank goodness I only have to do this for therapy and Doctors appointments. Having her in the front seat was a little freaky. 

OK...a lot freaky. 

"Mama. How'd I get here? What's this thingy on the door? Maybe I will open it?"
  
Maybe Mama will totally loose her mind if you try to open it. OMG! Do not kick that door handle down on RT 66. Do NOT press those buttons with your crazy elbow!! Aaaahhhh!!


"Mama. This is flipping me out. I am up so high. I don't like windows."

Yeah, well welcome to the untethered world of no five point harness.


"Whoa. Mama where did you come from? You screered me."

I was laughing too hard at this point watching her figure it all out. 


"I see you Mama. I see you."

She was smiling and laughing most of the time. Definitely an E ticket ride for the Courtnmiester. Not so much for the Mama.



"Yeah...this is nice. Living the dream. I could get used to this."

No, my daughter. No, you won't. It was great that I had to pull over and "adjust" your position four times on the way home. Fab.u.Lous. You were having way to much fun with this whole "freedom' thing. Way too much door hitting, foot moving, arms splicing, elbow swathing, wrestlemania fun. Mama will be counting her pennies to get that lift fixed. Sheesh that was freaking stressful. It was like driving with an octopus.


As I said before, once we got home, things went downhill. Miss Courtney pulled out the big guns and decided to sop breathing for about 5 seconds during seizure #2. That always makes life so much more exciting. It's the type of excitement I could wait a lifetime to ever experience again. Unfortunately, I don't think that will be the case. 

I finally got her settled in bed and hubby came home late from a meeting. He walked in with these. 


$6 spent at the grocery store never meant so much. He hates buying cut flowers because they just die. "What a waist of money" he says. Me? I love them. So when he steps out of his comfort zone, he gets props from this wife. I am blessed. 

So tonight there will be homemade spaghetti sauce as a thank you to the man who sacrifices every single day for us. It's his favorite meatless meal. A fair trade wouldn't you say? I think so. 

Of course the day would not have been complete without a medical bill showing up in the mail. This lovely little diddy is what remains on Courtney's dental bill AFTER insurance has paid out. 



Three times a year this is what we do. All to avoid gum disease, issues with cavity's due to her lack of chewing and the fact that saliva "sits" on one side of her mouth for hours without her swallowing in her sleep. 

Oh the things you learn about dental care when you have a kid who is tube fed for 75% of their daily nutrients AND took a medication for 21 years that caused her gums to "overgrow" her molars. Dental care is complicated for these special kids. 

Between this and the van lift it's going to be a long spring spent in the comfort of our home/backyard/front porch/or wherever we can go that's free. 

That's the ugly/beautiful all in one day. Just keeping things real. Life is good and then the mail comes. 

Sigh...

So happy Friday y'all. May this weekend be filled with friends, family, love and laughter. I promise to post again tomorrow. About what I have no flippin idea, but post away I will. 

Check out 7 Quick Takes @ Conversion Diary or {p,h,f,r} @ LikeMotherLikeDaughter for some more fun. 


9 comments:

  1. Poor Courtney! I am continuing to pray for relief from all these seizures!

    And my husband is the same. He thinks money spent on flowers is a waste but oh, what a nice surprise! And tulips are one of my favorites!!!

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    Replies
    1. I love tulips. They just make me smile. Thanks so much for being such a prayer warrior form my girl. Hugs friend.

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  2. Jerry sounds like a total keeper. :D I remember when my husband went on a long business trip for the first time after we got married and arranged to have flowers sent to me while he was gone. He's a lot like Jerry in that I think he thinks that flowers can be a waste of money, but he knows I love, love, LOVE roses. I still smile whenever I think of that...

    May your next week be less stressful!

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    Replies
    1. Hey Miss Katherine! I hope this week will be much less stressful too. Your hubby sounds like a keeper, Flowers are awesome but when they are delivered...that takes it up a notch.

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  3. Oh I hope both you and Miss Courtney have a more restful evening tonight! Prayers for a good rest for everyone are on the way!

    Thanks for sharing - those tulips and Miss Courtney's smile are priceless!
    Lea

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    Replies
    1. Thanks for those prayers Miss Lea! I appreciate them all so much.

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  4. Mary,
    Perhaps you could borrow a POSEY restraint from the PT's until you can afford to get the lift fixed. I know it isn't ideal, but it might help keep Courtney from slipping down in her seat so much while you drive because you could tie it behind the seat. Sorry things have been so rough!

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    Replies
    1. When we went out again later, I put a velcro strap around her and she did much better. I think we will b OK with that until things are taken care of.

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