Recovery from Surgery....and Jameson:)

Where do I start?? 
We all realize I am not good at staying up with this blog thing!  There have been several times where I've started one and then got side tracked with Jameson eating play-doh, a crayon, or some other mysterious substance (I will get to that in a minute).  I really wish I was better at this.  Someday....

My sweet boy's surgery was a success!!!  He did amazing!  We were all blown away at how well he did actually.  The doctors told us, he could be in the hospital for 1 day or 5 days....it is up to him, on how he recovers.  Well, he woke up from recovery just looking around like nothing happened.   He ate and drank, much better than they expected.  He only needed Tylenol to control his pain :)  He was out in about 24 hours!!  He had a little discomfort around day 3 or 4, but overall, he is a champ!!

                           Recovery                              Can you spot Bubby in that bed?

 

So he still has tonsils/adenoids.  They took out his appendix(which was the biggest they've ever seen), fixed his intestines and corrected 2 hernias, that they happened to find while in there.  I have to say, since the surgery, his mood has been incredible.  We are wondering if he was having some discomfort from the hernia or something.  He has been so happy lately, which makes us all happy!

We cannot express how thankful we are for your prayers, thoughts, emails, texts, visits, food, babysitting, everything!!!!  We are truly surrounded by love!!!  All the positivity around him truly helped!!  Thank you! 

             My new hippo from Simon                                   Watching videos with my brother

I have to give MAJOR props to U of M!!!  Holy Amazing Hospital!!!  We were treated like royalty and they moved so efficiently!! I mean....how many hospitals tell you they are discharging you, you see the discharge nurse and a doctor within 10 minutes and are on your way home??

I can't say enough about that place.  The floor we were on had such amazing nurses and help make children(and families) as comfortable as they can while staying there, with pizza party's, game rooms, etc.  The night we were there, the place was filled with U of M athletes, who come every Thursday night to visit with kids.  I feel like all we ever hear in the news, is when a place does something bad, so I feel it is nice to try and spread some good. 

                                         Not the best pic...As you can see we are surrounded
                                             by athletes...Patrick doesn't care :)

What else is happening...hmmm...we really are boring people...really, truly!!  But yet I feel like we are always busy.
Bubby is doing amazing in school and will start PT and OT in addition to school starting next week.  We want to get him in the summer rotation before it fills up.  He will be going to a clinic next week where he sees several doctors in one day, to determine if there are any other options for his sleep apnea, rather than a mask.  We are waiting to hear about his bed....feeling optimistic about it though :) 

                                                            My daddy is tickling me :)

                                       I feel so great, I will play my drum and pick my nose
                                        
Avery is doing great.  School, softball, birthday parties, correcting Tim and I, with her vast knowledge of the world, because you know that 11 year olds, have the world figured out.  Seriously though, she is a good girl.  We found out yesterday that she has to have 2 baby teeth pulled, before we get braces.  She has an adult tooth that is literally sideways(the xray is pretty impressive), so we have to get the baby ones out of the way.  Now.....we are sad she has to have them pulled, but secretly Tim and I were relieved, just a little, that we are prolonging the braces until summer.  Those of you who have ever had to pay for braces, will understand and not judge us as bad parents for thinking this way ;)  Just an FYI, we will be selling Jameson to pay for them.

My girl

                                                       Backing up an over throw

                                                  On 1st after an amazing bunt

Playing the field

Speaking of which....should I even continue about Jameson?  My sweet little baby Jameson.  He has taken up a new hobby in his spare time.  The weekend of Bubby's surgery, he decided that he wasn't going to let Bubby get all the attention....no way!  So he thought it would be fun to stick his hand down his diaper after he did the deed.  Not only that....he thought it would be fun to try and eat it.  Sorry to those of you with a weak stomach.  So as I am tending to Bubby and Tim is with Avery at practice, I have to clean up poop, bathe him and bleach all of the cars he touched.  Here we are with a child with scars from surgery that they told us to keep clean....and a little brother finger painting everything in our house brown.

                                                         Can you see the evil??  :)

Not only that, the little turd(no pun intended) did it again the next morning while I was changing Patrick into his ankle braces.  This time he ran out of the room for literally 2 minutes, pooped, grabbed some, decided he needed a drink(bye bye sippy cup), and then made the Ipad his next victim.  No more Ipad case!!  I took pictures for proof, so when he is older and ends up being some rocket scientist, I can show him.....but I will spare you with those.  We have since evoked a policy to change him the literal second he is pooping.  You're probably all thinking I am just sitting on the couch eating ice cream and ignoring him.  He is fast!!  Oh Jameson....its a good thing he is such a charmer....

                                                     I also do this when she's not looking

                                                      See....I can be a good boy too

On that note...I am going back to work!  Ha ha.  But seriously....after a lot of talking and thinking, I am getting all my things in order to start looking, so I can go back in the fall.  Many things went into this decision.  For starters, Patrick loves school and is growing in so many ways,  that we feel he can go more next year.  Jameson needs to be socialized more (need I explain myself? :)).  Avery is getting to the point in her life where everything she does is more expensive.  Which we have no problem with, because we want her to be able to do whatever she has the potential to(within limits).  She has never been a needy kid, so now we feel it is the time in her life to get her involved in the things she likes and see where it takes her.

So for all the things our family needs, instead of struggling, we feel it is time.  We want to be able to eventually get the house Bubby will need, the car he will need, college for Avery, etc. 

                                                    TBT.....This was the day she started
                                                    3rd grade....Oh my word!!

Lastly, I need to go back for me.  I miss teaching and I miss people in general.  I have LOVED every second of being home with my kids, including the daily outfits of yoga pants or pajamas.  The realization that I didn't have to go out in the frozen tundra.  But mostly being here when my kids are here or when they get home from school.  Watching Jameson learn how to do new things.  But I also realize, that they enjoy having their own lives too.  Patrick loves getting out and so does Jameson.  I think we all know Avery is social :)   I was able to stay home for 2 full years, so I am very happy with that!!

So we are excited about this.  Well, at least I am.  I know Tim is, because we will have more money..haha...I kid, I kid.  He would work 2 jobs if I told him I wanted to continue to stay home.  What a catch, huh?  That Tim Kelley;)  I am sure he is blushing right now....

I can't thank everyone enough for their support with the T-Shirts, NCAA bracket and just all of the support you have given us with the bubby fund.   Just so you know that the purpose of this fund is for anything we need specifically for Bubby.  Right now, we have already used a little to make some modifications to his room, for his new bed.  We are also looking into a ramp for the house and some other pieces of equipment to help him.  Specifically I want to get him a small therapy pool, that he can use in the house, because we only have a walk in shower, no bath tub.  We have the conference coming in June (YAAAY!!!) and dare I say it....I will be entering the world of mini van moms within the next year or so...Ahhh :)   We will eventually modify it as well.  Those are just some of the things that we are looking into.  Again...thank you so much for all of your love and support!!

Ok...I wrote a book.  You all need to carry on with your day....considering we all have brackets to win....

xo
                                                                     Bye Bye Winter!!

The Reality Is....

Somedays I feel like Superwoman....others....not so much
Somedays I hate PKS....other days....I am thankful for it
Somedays I feel overwhelmed by the love around me, but yet still alone
Somedays I feel so positive....other days...I want to go to bed and watch chick flicks and eat chocolate until I puke.

I truly think that these things are related to me and not the fact that I have a child with a disability.  I would like to think that these things just make me human.

I definitely realize that everyone has "their shit"  I do not think just because Patrick was born this way, makes it define us. Or that our "shit" is more important...just different.   I would hope that I don't judge people for their own worries, which are different than mine.  I think we all know what we know.  Its hard for people to really think about how someone else is feeling, unless you've been there. 

 At the end of the day....most of "the shit" our family has to deal with, has nothing to do with Patrick himself....

Its the worry,
the unkown,
the how am I going to pay the deductibles for this,
the, who the hell do I have to talk to about making this stupid decision for "the best interest of my child" or "that it isnt medically necessary"
the need to go back to work, but don't know how I will get him to all of his appointments,
the wonder if we will ever be able to get him the type of house he will need
the wonder of how the hell am I going to lift him when he is 10, 15, 20 years old
the wonder of, "will he ever walk?" In the same breath, thinking I am totally fine if he doesn't but yet wanting him to at the same time.
how do I handle people staring, laughing or making fun of him
what goals do we put in his IEP
how I hope Patrick teaches Avery and Jameson(and everyone for that matter) to be more caring people
where will Tim, and I and Bubby travel when we retire

Again, at the end of the day... this stuff has nothing to do with Patrick himself.  My happy, sweet boy.  I can sit on the couch or cuddle in bed with him and all of this goes away.  Or as I type this, I can't help but get caught up in his contagious, huge smile, sitting right next to me. 

I don't know if I have a point to this, other than I hope that people can relate to it, with me, with "their shit" and not feel sorry for people with a child with a disability.  Don't pity...just learn.  Don't feel sorry for us...just support us.  Don't just stare...come over and smile and talk to Patrick or someone like him.  I realize we are different, that is why we get the stares...so ask questions.  Be friendly.

The reality is, we don't feel sorry for us.  I don't, Tim doesn't, Avery doesn't and I hope Jameson won't-he won't know any different.  Do we have bad days??  YES!!  We are human.  But even those bad days, I don't feel sorry for any of us, because of PKS.  I get frustrated with the decisions and things that come along with it, just like anyone else....its just that, our decisions and things, are different than most.  And I can't expect people to completely get it, unless you've been there.  Just like I may not completely understand what other people are going through.  I can just try and support the best way I know how.

We all have peaks and valleys...

I love Bubby :)

Winter...Snow and Surgeries

How about this beautiful weather, eh??  I don't know about you, but I am ready to drop kick old man winter in the face.  I love snow and the changing seasons and all, but -30 degree wind chills....come on man.  I just want my flip flops and shorts back.  Hey....I would even go for just some jeans and a sweatshirt, weather.  Lets face it, we wouldn't be happy if we couldn't complain about the weather.

So on to my Bubby!  February 27 is the date for his surgeries. They have agreed to both at the same time, to prevent 2 different sedations.  He will have the scope for his tonsils and adenoids, first.  They will decide if they need to come out.  If they do....out they come.  Then they will continue on, with his malrotation surgery.  They can do this laproscopically, as long as there are no issues.  They will take his appendix out as well, because normally they are on the wrong side when they have this and they don't want that to be an issue down the road, with not being able to diagnose it.  I have had a lot of people ask what malrotation is.  I will give you the very basic pre school version.  Basically his intestines are not where they should be.  It happens very early on when they are in the womb.  Patricks are pushed over to the side a little.  They want to kind of pin them and create some scar tissue to prevent them from moving or flipping.  This could cause the intestines to die off or obstruct, which causes major issues.  Its actually not that uncommon to be born with it, and they usually catch it when your a baby and fix it.  A lot of people live their whole lives not knowing they have it.  But in the case of a child with PKS or another disability, he can't tell us when he is cramping, in pain, etc.  So it usually gets to a dangerous point before we know something is wrong.  Thats why they want to fix it.

Whew....too much information! I am not the queasy type at all.  But when the doctor was explaining this....I wanted to vomit.  I think its because its my own child.  Yes, we are nervous, as any parent would be.  But we are glad that we are going to get things taken care of.  We truly don't know how we got this far without a surgery.  We feel lucky.  But its time to get things tuned up for our boy!  He's always had some issues with his tummy, so I am hoping this will help.  I am sure I will be a mess the day of the surgery, as we won't know what to expect and the anesthesia freaks me out.  But he has some of the best doctors taking care of him, so we go with it.  Thoughts and prayers requested :)

The one thing I am grateful for in all of the things that Patrick has to go through, is he doesn't have the ability to worry about things like we do.  We spend so much time worried about whats going to happen.  He doesn't.  He just goes with the flow.  If something hurts or upsets him, he yells at us, until we fix it, but he doesn't sit around and dwell on things like we do.  He goes about his business laughing at random things and playing with his toys.  This is a quality, that I wish I had.  I am glad right now, that we are the ones worried for him, he doesn't have to know that he is having the surgery.  He can enjoy himself and do his thing, up until that day.  We will worry for him.

He is doing great otherwise!!  Went for a visit with audiology and his hearing is good.  Don't have to go back for a year!!  YAY!!    Legs are stronger and he is interacting with people a lot.  Just a happy boy in general :)  We go back for a re-evaluation in a week or so to get this boy a safe bed! Fingers crossed that we will.  Now that he has a sleep apnea diagnosis, it may make it easier.  We are still fighting!!! 

Look Mom, I am standing :)

Please excuse my "snow shoveling outfit"

Loves his new toy :)

Sooooo.....I have this super cute video of him laughing and singing (well, screeching a little), to his favorite song.  He loooooooovvvvvveees  the Rocky Raccoon song by The Beatles.  YouTube, will not let me share it, because of copyright issues. UUUUUUGGGHHHHH!!!!  This crap gets on my nerves.  I don't want to make money.....but anyways.....if I can figure out a way to share it on here, I will ASAP!!

Watching the Ipad

Playing at Open Gym

 

Not the proper way to put your child in a carseat

 

Avery and Jameson are both great as well.  Jameson is keeping me on my toes for sure!!  Avery is doing great in softball right now.  Really improving and enjoying it!!  Tim and I are good too....I think....is that Tim guy my husband?  Just kidding....we have learned to sacrifice sleep to sit down with each other every night after the rugrats are in bed and watch some TV(we are zombies by Friday).  We are catching up on Breaking Bad and Scandal.  One for each of us.  They are addicting!!!  Although, sometimes I need a "break" from Breaking Bad (haha), it is INTENSE. 3 nights in a row, and I am in the need for something funny.  And please don't tell us what happens in the end, Tim would be depressed I think:) 

 



Also.....We will be opening up the Bubby Shirt sales again next week for anyone who missed it!!  We had a lot of people ask :)  I will send the link out.  We can't thank you enough for all of your love and support for Bubby and all of us!!  

Throwback Thursday-

 

Avery with Patrick

 Avery with Jameson

I just love these 2 pictures and seeing how much they have all changed :)

Stay Warm
xo

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

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

Thankful...for sleep tonight:)

Forgive me for any errors, Tim and I are working on 2 hours sleep because my sweet boy decided he wanted to hang out in the ER all night:(. Last night he spiked a fever of almost 104 and was shaking, vomitting and lethargic, so we thought we better take him in.  Of course as soon as we get to the ER and walk down the hallway, Patrick perks his little head off Tim's shoulder and starts his, "ta-ta-ta" noise that he does when he is happy...of course:). Little stinker!!  But he rarely gets sick and I have never seen him this bad.  I don't like to mess around with him, so off to U of M we went!  They ruled out all the big stuff (ears, pnemonia, UTI) and chalked it up to a virus.  Patrick almost enjoyed it there a little too much...hoping he doesn't make it a habit;). He slept a lot today and we finally got some applesauce down tonight, and he seems better, still a little warm.  Hoping we can rest up tomorrow and see family Friday.  We shall see...

I make this look good!

I wanted to show off his new toy!!  So excited!!!  This is his gait trainer, that will help him learn to take steps!  He loves it so far!

Next I want to say how thankful we are for a few things.  First of all, his fundraiser was a huge success!!  We sold a ton!  Way more than expected!!!  So thank you!!!!!  I would love for everyone to email or text me a pic wearing the shirt when you get them....I have a plan:).

The one thing I would like to share this year, that I am truly thankful for, is the care that Patrick is getting here, both medically and in school.  The ER was so efficient with him.  But the most meaningful thing that they did, was they talked to him like they would any other kid.  You would be surprised at how some doctors are kind of timid or nurses who aren't sure what to make of him.  He isn't anything to be scared of just because he can't use words to communicate.  He still deserves to be talked to just like any other kid.  We have had doctors who wouldn't talk to him or almost didn't know how to handle him.  The nurses and doctors last night talked to him and were just so sweet to him in general.  Very compassionate and kind.  That is a big deal to us!  So thank you U of M!
Next are his teacher and therapists at school, whom we are so thankful for this year!   They truly love him.  The one thing I love most about them, is they do the same things with Patrick, that they would any other child.  His activities are so cute and funny.  My favorite part of the day is seeing what he brought home! We know that he doesn't do a lot of it(he will someday).  But they sit him down and go through the process with him, which makes me smile:). It means so much to see him just being treated like anyone else.  He is learning so much from it.  Sure there are things he won't be able to do, but they find a way to adapt, without him just sitting in the corner doing nothing.

Love this...all the things he is thankful for!

His little hands as leaves.  Cuteness..

So I guess I am thankful for the people around us, that just love Patrick the way he is. I don't have to explain why he is the way he is.  They care for him and treat him like anyone else.  Sometimes it can be frustrating walking through a store or the mall and people stare at him(I mean who wouldn't?  He is awesome).  So when you find people who don't think twice about coming up and talking to him or hugging him and don't care that he may not talk back or hug in return, you are thankful.  

Happy Thanksgiving to all!

Is he spending his days with other women???

Yes, he is!  He comes home everyday smelling of perfume.  No, not my Timothy.....but my sweet Patrick!  Everyday he comes home from school and he tells me about his day, and we cuddle.  I always tell him he smells like other women.  He has a perfume smell everyday, which makes me happy!  It makes me happy because I know he is getting loved!  He is getting cuddled and held and they are just loving him.  How could I not be happy about that?  One of my biggest fears about sending him off to school, was that he would sit in a corner all day or not get any attention.   I know that he isn't.  He is loving it and they send notes home everyday telling me how they are having so much fun with him!!  He is making progress with choice making and today he rode on a modified tricycle!!  The bus is going great, he is doing well with the transition and we are so happy.

First ever school pics.  

I am pondering the meaning of life...

I think we all realize I am not really good at this blogging thing.  I reeeeaaaaalllllyyyy want to be, but I can't do it as much as I would like:(. I hope I get better!!!

Now, December 4 is coming soon, PKS Awareness day!!!  This will mark the 1 year mark of our blog too:). I really want to do something for it.  I have had a few ideas, but nothing has gone through.  I really want to bring more awareness for our PKS kids, so if you can think of anything I could do, email me:). I would be willing to speak, or bring Patrick places, whatever.

As most of you know we are starting a fund for Patrick, which is why we are having a fundraiser with those awesome t-shirts.  There are so many things about having a disabled child, that you don't realize you have to worry about...special needs trust funds, Will, vans, ramps, house modifications, equipment, etc.  This is why we are starting this fund now.  All of these things are expensive!!!!  We all know how well we get along with our insurance companies, and since Tim and I aren't rolling in the dough, this is going to be extremely helpful!!!! We can't thank all of you enough for your love and support!!!  Patrick is so lucky:).

Let's see, what are those other 2 kids up to??  Well Avery is great.  Doing awesome in school, and making friends, and going through the normal fun middle school shenanigans .  We spend a lot of time just being thankful that she is a good kid....and that we aren't going through that time of our life again...no thanks!  Then there is Jameson....what can I say about him.  He is crazy, in the best way possible!!!  He is running around, giving high fives, making out with his stuffed animals(what can I say, he takes after his dad) and just generally making us laugh.

Hanging with my sissy

Don't let that face fool you...

Check out bubbs:)

So things are good.  We are happy to report that Patrick got his bath chair and his gait trainer(walker) is in for us to pick up.  We have appealed to get his bed paid for, we are waiting to hear about that!  So keep your fingers crossed please!  We are not sure how all of these things are going to fit in our house:).  

I'm chilling 

I am going to share the links again for the shirts.  If anyone wants to know about Patrick you can share my blog with them:).   We are so thankful!  Because we have such a great support system, I need a favor and ask if you can keep one of my very close friends in your thoughts and prayers.  Her family has been through a lot in the last year, and continues to have a need for support.  I know I am http://www.3elove.com/pages/i-love-somebubby-with-pks-fundraiserbeing vague, but I will explain when I can.  Just say a little prayer please:).  

http://www.3elove.com/pages/i-love-somebubby-with-pks-fundraiser
http://www.3elove.com/pages/i-love-someone-with-pks-fundraiser