I ain't afraid of no ghost!

 Happy Halloween! 

Warning! Naked Baby.

*** someone flagged Lydia's bathtime video as inappropriate and it's been removed from YouTube. Hope that doesn't come back to bite her in a job interview someday.

Yay!  Someone is finally learning to like bathtime!  

When she's 13, she'll hurt me for posting this.

Think like a proton

Alright, today has to be the day.  The day I quit having these poor me moments.  I'm going to get it all out and then work on getting better.  Call me out on it if I'm being a whiny little you know what.

No, I have not been to any postseason games, though I have a ticket to every one of them.  I just don't care this year like I did last year.  My place it as home with Lydia, but I know I need to get out and have a life.  So, I'll try to go to at least one World Series game.      

No, I have no more night nurses, well one every other Monday and Tuesday.  I live too far away from them or they found a better paying job at a hospital.  I can't blame them.  I have two companies searching for more.  It will get better.

I am grateful for our wonderful daytime nurses.  I am grateful our night time nurses will be able to cover every once in awhile, just not consistently.  I am grateful we found Emma and she's going to be with Lydia tonight so Dan and I can celebrate our anniversary.

I am so thankful Lydia is at home and thriving.  She is alive and healthy.  What do I have to complain about?  Nothing.  I only have things to be thankful for, like this sleeping beauty that I'm going to go snuggle...after I clean up the formula that I fed to the floor because I didn't realize the tube wasn't hooked up at 6am.  Face Palm.

Before I get that cup of coffee...

Look at this kid!  She's so much fun! She's giggling now...we can't hear her, but that's no ordinary smile, that's a laugh!

Awww, sweet baby snuggles!

 Lydia be like, "Dad, don't even try to fake it, you're gonna mess with me now and I don't like it."  Trach Care Time = Family Time

November 1st is looming over our heads

October 2015 status update:

We have night nursing on the weekends.  Marc is super!
We have night nursing every other Monday and Tuesday.  Melinda is fabulous!
We have night nursing every other Tuesday and every Thursday.  Nette is awesome!

We have no night nursing every other Monday night and every Wednesday and Friday.  Not a huge deal.

November 2015 status update:

We have night nursing on the weekends.  Marc is super!
We have night nursing every other Monday and Tuesday.  Melinda is fabulous!

We have no night nursing every other Monday and Tuesday and every Wednesday, Thursday, Friday.  Ugh.  Nette is all awesome saucey and sits for her RN boards and get a new job at the hospital.  Sad day for me.

I just deflated.  I got instantly more tired.  My shoulders slumped.  My head bobbed.  I'd cry if I had it in me.  What a crappy email to get.  All while on hold with Amerigroup for 22 minutes and 17 seconds.  I'm hanging up and going to Caribou for some coffee.  Blah Blah Blah...are you still reading?

Deletion 22

I don't write much about Lydia's 22q11 deletion because I don't know much.  I know what it has meant for her so far.  I do not know what it may mean for her in the future.  

I came across this young lady's blog today and I can't help but wonder if Lydia will be like her.  Amy is 20 years old, starting college, and has mainly been affected in social and emotional ways, along with learning disabilities.  

It's a very hard genetic disorder to read about and come to any conclusions because there are so many ways it could affect the human body.  I think we know most of the physical ways this deletion will affect Lydia.  We have yet to know the psychiatric and intellectual ways.  

Here is something I borrowed from Amy's YouTube channel and below that is her 22q music video.

22Q is the second most common genetic disorder after Down Syndrome, yet most people don't know about it. It is also commonly known as VCFS (Velo Cardio Facial Syndrome) and DiGeorge Syndrome. This syndrome affects 1 in every 4,000 live births. 

Teachers, special educators, doctors, nurses, psychiatrists, psychologist, and families need to be informed about this disorder. It can be hiding underling medical, psychiatric, and learning problems. This includes heart defects, visual and hearing problems, growth/development, social/emotional problems, and Intellectual disabilities. There are over 80 characteristics associated with this syndrome, which makes it difficult to detect without DNA testing.

Million Dollar Baby

Preparing to pay our last Children's Mercy Hospital bill which will get us down to the penny on our deductibles, coinsurance, max out of pocket, everything!Thank goodness, thank goodness for insurance.  From my calculations based off of very vague descriptions on itemized bills, Lydia's hospital stay from June 14 to August 31, cost...

$1,229,120.00