Tuesday, December 31, 2013

Another year...

Where has the time gone?   Another year drawing to a close.  It's hard to believe!  I did an update for you a week ago, but before I posted....it deleted and so instead of throwing my iPad in a fit of rage, I calmly walked away and ate some cookies.  Seems logical.  So I will try this again.  Many things have changed since then anyways.  Here are a few things we've been doing:
 
Patrick's Christmas Party!  Fun and exhausting:)
  
Avery's Band and Choir Concert.  AMAZING!!!  She did awesome and her school has a fantastic program!
  
Sleep study- saying he hated it, would be an understatement!  Best part was that after he cried himself to exhaustion for an hour, he held my hand and fell asleep.  My sweet boy!
Upper GI-he actually enjoyed this test, even though we were all at U of M for 7 hours:). We knew it was going to take a while, but because of his low muscle tone, his digestion takes a lot longer!!

We found out that he does have obstructive and central apnea.  He will see ENT for tonsils and adenoids and we will go from there.   He also has malrotation of his intestines.  We are waiting to form a game plan for that, because it may require surgery to correct because it puts him at higher risk of bowel obstructions.  So I will keep you updated when we know.

We got both of these results the 2 days after Christmas.  I will be honest and say that it knocked me down a bit.  We have always been grateful for his health and we still are.  But sometimes, no matter what we do to keep him healthy, there are things we can't control.  That is a hard pill to swallow.  We always tell ourselves that we are more fortunate than others....but sometimes this phrase irritates me.  Not to say that I am not grateful.  I completely am....but it also makes me feel like its not ok for me to be upset that my child has something that I don't want him to.  Or who wants to be on the other end of this phrase??   I try with all my power to be positive with this....but some days I don't want to be.  I think that's fine too.  So today, I don't like that phrase.....tomorrow, I may be fine with it.  Hey, I am a woman, it's my job to change my mind without notice. Deal with it! ;) 

More pics:
 
I got new braces and shoes!!!  Pure Stud!

 
Kissing Bubby:)
Enjoying my swing
No explanation needed:)

Please keep our PKS family in your prayers as some of our kiddos have been in and out of the hospital with illness and some have some surgeries coming up soon!!  

Happy New Year to All

XOXO












Tuesday, December 3, 2013

1 year ago today....

I wrote my first blog.  I started this because I've always wanted to do a blog and I thought that PKS awareness was the best way to do it.  I've found it to be the best therapy for me and an even better way for people to see just a small bit of what a family goes through when they have a special little one in their lives:)   I really appreciate those of you who share it, respond to it or just read it!!

Last year I started the blog, hoping to help people understand PKS a little more. To understand what
our life looks like. As each year passes, my acceptance of this disorder becomes easier to manage.  I have fewer days of wanting to drop kick PKS off of a cliff and make it go away.  These days do exist still, but much, much less.  I have become somewhat grateful in many ways.  So I wanted to share a few things that make me thankful for PKS...
1.  Patrick does not have to deal with all the stupid shit that we all have to deal with on a daily basis.  Examples:  violence, hatred, kardashians, vague Facebook posts, gun debates, political debates, why the Tigers didn't make it to the world series, etc.
2.  We have learned to stop and appreciate the little things.  Reaching for a toy or drinking through a straw are huge celebrations in this house and we LOVE it:)
1 year

3.  He is happy just being loved.  I don't have to over think it(even though I probably still do;))  He can sit next to me on the couch and be happy or lay on the floor and be happy.  Mind you...he still has his fathers temper.
An oldie....5 months old

4.  Patrick just is who he is.  It's really that simple.  All 3 of our kids are completely different.  We accept them all just the way they are!  Sure he needs a little more help.  But this is the way he was made:).   I can't consume my life wondering why.  It's up to us, to give him the best quality of life we can, and make him happy, just like we will with Avery and Jameson!
5.  I am completely, totally 100% grateful for our PKS family!!  Had Patrick never had PKS, we would not be part of this amazing family.  In the world we live today, there is so much competition between parents.  "Look what my kid does....my kid did that months ago...look at me...I can bake 100 cupcakes from pinterest, make 50 party favors and go grocery shopping with my extreme couponing organizer all by myself!".  Good for you!   
Our PKS family is such a safe, non judgemental group of parents, who truly understand what we are all going through.  But the biggest part...we are all genuinely excited and happy to see our children make progress, achieve milestones, get better from an illness, etc.  We are so lucky to have a group of people to talk with, vent to, listen to, share things.  This is why PKSkids is such an important organization.  It brings us together every other year to be with each other and share and learn.  PKS doesn't have the recognition like many other disorders yet.  These parents are all working to make this happen.  So that future parents who have children diagnosed, will know what to expect, what tests to get done, what intervention is needed, and they can get it sooner!

Waiting for the snow...

So, yes, there are things about PKS that I am thankful for.  Now, don't get me wrong, I still have days when I want to cry all day with a carton of mint chocolate chip ice cream, in my bedroom and just watch Bridget Jones and any other really crappy chick flick to escape it all.  And when i have those days, I try to do that....if Jameson lets me:). We also have found that humor has helped us as well:). 
Some people don't get our sarcasm...and that's ok;)
Random picture.  Aren't they cute?

This year I have had trouble figuring out what to do to celebrate this great day to spread awareness for Patrick and his friends. Well last night it hit me...
Monday we were scheduled for a phone appeal with the State of Michigan.  We pay into a secondary insurance for Patrick through the state.  Well they denied his modified bed and our private won't cover either.  After appealing several times already, I wrote up a long letter stating why he needed it.  Well, they still DENIED it again on Monday!  They don't want to pay for it because the head of the bed moves up and they don't feel it's medically necessary.
This is why he needs a safe bed.  Comfy?

So needless to say we are disappointed.  This, unfortunately is not out of the ordinary for many families with children with disabilities.  This is where my problem lies.....why do families have to write letters, set up appeals, ask for legal advice, etc to get something paid for, for children who are clearly in need of these things?  They have never met my child and they presume to know what he needs and does not need.  We are not trying to scam you for a massive pieces of equipment that will take up a majority of the space in my house, just for fun.  We are doing it to improve our child's quality of life.

So this year for PKS awareness day, I am writing my state representative.  I want to know what I can do to help make this process for families like mine, less stressful and more focused on what is in the best interest of the child/person in need.  Yes, I am mad, frustrated, etc.  so instead of just whining about it, I am going to write.  I figure...what the hell??  What do I have to lose?  I feel like more people need to tell people when they are not happy, I mean we put them in their positions!

It's frustrating to not know how you're going to get the things that you know your child needs.  You go through the process and do everything the right way and yet, you sit in the room at the end of the day and wonder what the heck your next move is.  This is why we started fundraising and starting a fund. And this isn't just about Bubbys situation either.  Luckily we have a great support system.  What about families who don't?  So if nothing comes of this, at least we tried.

I could go off on several different avenues with this....I would love to go after health care companies themselves and their stupid health care costs, or even more stupid inflated health care costs for modified equipment, I could go on and on.....but I have to start somewhere!

Ok...off my podium and off to writing.  Giving a voice to my boy and so many others who can't speak for themselves!

Much love to all and please take a minute to just visit the pkskids website and read about PKS and some of Patrick's friends!  They are pretty awesome:)
PKSkids