Gratitude and THE BIG ONE....

All I can say, is WOW!!!  Tim and I are still overwhelmed with the turnout we had for Patricks fundraiser last week.  To just say, thank you, is an understatement of how grateful we truly are.  To stand in that room and just see it overflowing with people and love for us, moved us in ways you can't imagine.  From all the students and members of St. John Vianney to old friends and neighbors, to family, we were so happy to see you all.....although Jameson made it difficult to show it;). Little stinker was not enjoying himself.  Then there were the friends, family and people whom we have never met, from all over, who couldn't come, but who donated as well.  I wish there was another way to thank all of you, besides just a thank you, but right now it's all we've got:)

 So to everyone who has donated or helped or just supported us, THANK YOU!!!!!  From the bottom of our hearts.  What you are doing to help us, is truly amazing and makes me cry every time I think about it.   We also can't thank Tim's parents enough for organizing it!!!  xoxo

Over the past few months we have established the Bubby fund so we could go to these conferences and start a cushion early on the endless list of things we will need to make Patricks life easier.  I can honestly say that it helps Tim and I, get through the days a little easier knowing we have such support.

Our conference is about a month away.  We are beyond excited to spend a weekend with our PKS family.  It's hard to put into words the value of this weekend.  Beyond educating ourselves on PKS, and different therapies, we get to spend a weekend with people where we DONT have to explain PKS to anyone.  I know that may sound weird, because I actually love when people ask me questions. But there is something different about being with a group of people,from all over the world, that you share this rare bond with.  And you all just get it.   We can let ourselves just go.  Enjoy each others company and love on our kiddos.  After this week....it is needed!!

What a week...
I have to apologize for not thanking you all sooner, but I feel like I haven't had time to catch my breath in the past week.  It's just been a constant stream of events. 

Avery's Birthday-  A lot of 12 year old girls running around the house......need I explain more??

Avery opening her gift from Aunt Amber, Uncle Chris, Loch and Sissa-
One Direction tickets.....guess who gets to go with her?....I will thank them later....

 

I love the look on Brooke's face.....like, what the heck just happened?  But Lochlan knows....

 

Then today, my girl had to get 2 teeth pulled :(  She did great though.  YUCK!

 

 

Then there was therapy, therapy and more therapy.....



 

Don't mind me...just going shopping

                                                        Just feeding myself some pudding
                                                                         No biggy

                                                          I am not sure I am excited about
                                                            his love for this fan

Glamour shots by Bubby

 

 

Then we had his IEP.  That morning started with a brief jog through lightning and terrential rain, while holding an almost 2 year old and pushing your disabled kid through a parking lot in a metal chair, with no umbrella.  But it was worth it, because Patrick is doing great, and progressing well.  I love his team!!!  We are happy with his goals for next year and he is moving up to 5 days!!!  So excited for him :)  He will also do 3 half days this summer.  My little school boy :)

 

Then we had his MRI.  It was ordered by neurology and the sleep clinic.  He had to be sedated.  He did well, but had a little trouble waking up.  He was much happier after we got home and he had a nap.  The results didn't show anything substantial as far as his sleep apnea.  They found that his brain looks pretty much what they expected for a child with PKS or cognitive delays.  So nothing groundbreaking for us on that front as of now.  So we move on to fitting him for the CPAP machine in a few weeks.

 

His brother decided he didn't want Patrick to have all the attention on Friday, so he decided to do this....

Slammed his hand in the front door.  Like literally, almost completely shut.  Like I was scared to open the door to see what was going to happen.

His already pudgy hands looked like little, bruised sausage links, with blood spewing out of them.  Gross....

But then he decided to do this, which made up for it.

Hipster Jameson

That kid....

 



Then there was Mothers Day :)

I love my husband and kids.

And Sissa, who bought me breakfast!



 

Then there was a bunch of other stuff you're not interested in and I don't remember, because I am too tired.

 

 

 

 

Now for the news you've all been waiting for......drum roll.........

I feel like Sid from Toy Story, when his rocket shows up in the mail:

"It came, it finally came!  THE BIG ONE."

 

 

HIS BED!!!!!  And it is THE BIG ONE :)

 

 

 What am I supposed to do with this thing?

 

We were soooooo excited!!!  They called us yesterday morning and said they had a cancellation to install it, otherwise it would be a month.  So I was running around trying to make room for it.  It is a very nice bed.  We are really happy with it.  It is built by hand, here in the U.S. (yay!!)  The sides fold down or up and he has removal padding that can go all around, which was actually already useful.  We took it off of the one side so he can look out.  He discovered the padding and was rubbing it and making noises on it with his hands.  Super cute.  He was also rolling around having a little party in there and was slamming into it...glad we got it ;) He was in heaven!!!  He went to sleep like a champ and actually fell asleep early too.  We are soo happy for him!  My big boy in his big boy-safe bed!!  And of course he picked out his Thomas the Train comforter :)

 

Major props to Chris from Wheelchair Seating Services at U of M.  He brought it all in and put it together himself!  They have been great to work with!

 

 

So we are pretty happy!  Things around here are going to stay pretty hectic until the end of June.  Hopefully I can get another update before then.

 

Thanks again for your love and support :)



 





Look where we are now....

There are 3 times of the year that sometimes create a "funk" for us(mostly me).....
Christmas, Bubby's birthday and the anniversary of his diagnosis. 

This time of year marks the anniversary.  March 31, 2011, was the day we saw the geneticist, and for the first time in our lives heard the term PKS.  We got the official confirmation like a week or 2 later.  How the days, weeks and months, that followed, were both so vivid and so foggy.  Holding it together in the doctors office and then just sobbing in the car to Tim.  Me-thinking the worst....Tim-bringing me back to the positive.   

Today,  I thought about that day.  I had a moment at therapy with Patrick where I just wanted to cry.  Not because I was sad, but because I realized how far we have come since that day.  He has been doing so well lately and progressing so beautifully.... and then it dawned on me, that we have gone through this "diagnosis" period, this year, without realizing it.  No funk, No fog, No tears.

I see how far HE has come AND how far WE have come too.   All of the fears that I had initially, most are still there, but I have come to realize, that they will always be there, and I have to accept that(most days).   And....I have realized that we have fears for each of our kids, just in different ways.  I am not saying I will never have this funk again during this time of year.  I will.  I am sure of this.  But I am thankful for this year.  I am thankful and so proud of how well Patrick is doing right now.....how far he has come....how he has proved people wrong....how he has just amazed us and brought so much to our lives....how holding something as simple as a toy, brings me to tears....how he has taken the unknown of what was ahead and made it a bright spot in our lives. I am so proud of him.  I am so thankful to him for making me a different person, than the one I was in that genetecists office 3 years ago. 

I love you Bubby...You're simply da best :)


Here is what I did in therapy today.  These were taken in order.....

Ok...I'm holding a fan(bubble maker)



 I think I like it

 Yup, I do!

 This is just the best..

 Quite Amazing...

I could get used to this

 

All by myself

 

 

 The Best :)

 

 

My Performer

Patrick is really enjoying his new therapists :)  He surprises me everyday with some of the things he is starting to do.  In the past few weeks we have been working on putting weight on his legs and the walking motion.  We have also been working on him trying to grab food to bring to his mouth.  Last week, he actually grabbed my hand, which had a spoon full of yogurt in it, and he brought it to his mouth!!!  So exciting!!! 

Its so funny sometimes that simple things like this, that Jameson and Avery just did...are such an exciting thing in our house!! 

                                                                               Should I tell them I want to bungee jump?

 

Yesterday, he rode a tricycle around.  He did really well!!!  He also has been using his little suspension device to walk around the room.  He isn't really walking, but he is moving his feet the way he is supposed to.  So we are excited about his progress. 

 I'm outta here!

 

I don't think I am supposed to lay down in this

 

I know some of his pictures look like he isn't enjoying things, but he is or he does eventually.  Patrick has a temper and is stubborn.  He will complain with just about anything new.  So we have to do it for a while, before he realizes, "Oh, this is nice, I can do new things."

 



He is still loving school as well!  Today we went to his Spring Concert/Talent Show.  Such fun!!  Avery was able to go with Jameson and I because her school still didn't have power from the hurricane winds yesterday.  Ya know...the day it was almost 70?  Ya know...before the 3 inches of snow that put us over the edge for the snowiest winter since...well...EVER??  Whatever...68 by Thursday.  Keep moving.


Ok, back to the concert.  He showed his amazing musical side by completely ignoring the instrument on his tray.  He thought his skills would be more useful, as a dancer/clapper....everyone else agreed.  He rocked it!  The rest of the students in his school were AMAZING as well!!  I can't say enough about the staff and their dedication to getting each class and student up there to perform a song.  It's an experience that brings you back down to a place where you appreciate the little things.  Jameson and Avery had a blast and cheered on each and every class.  I feel lucky that our family gets to be a part of such an inspirational group of students and staff!

 

They were singing "Under the Sea"

 

I don't want to show off my mad music skills quite yet

Jameson and Avery are great.  BRAG ALERT:  Avery got all A's on her report card and was in the higher portion of Advanced in her MEAP scores.  With the exception of Social Studies.  She made it to the higher proficient, but was tested on Michigan history, but wasn't living here when they taught it(I won't give my thoughts on this).....so I would consider that fantastic!  

BRAG ALERT for Jameson: he has moved on to not eating his goodies in his diaper, to just now removing his diaper.  Yay for Progress(I think)!!

Patrick's bed should be in around the end of April :))  So excited!!! 

I am still working on my project with all your pics in the shirts.  I feel like there aren't enough hours in the day right now!

Happy Easter, Passover and (hopefully)Spring!!

Great News....

This week was busy, busy!!!  But we got some great news as well :)))))

Monday Patrick started PT and OT outpatient at U of M.  We are working with 2 new therapists and LOVE both of the ladies working with him!!!  They have a lot of great ideas for him and we set some pretty specific goals, so I am looking forward to going with him every week!!  Added bonus....they moved out of the hospital into a new facility, so no parking ramps to deal with, YAY!!!!!  If you've ever been to U of M, you know how exciting this is!!

Thursday we took part in a CPAP clinic to see if there were any other options for Patrick, other than a mask for sleeping.  We met with the ENT again, Neurology/Sleep Clinic and a dental/orthodontic team.  After seeing all 3, they all met in the afternoon to see if they could come to a conclusion on whether a mask is the best option or another surgery.  For Patrick, his obstructive sleep apnea is pretty significant,  so we wanted to look at all options first.  Since his tonsils and adenoids were not obstructive, they were looking to see if maybe they could move his jaw out a little to make room for his large tongue.  But his jaw is already further out than what it is supposed to be.  So that ended up not being an option.  So we all decided that the mask is our only option for now and we hope he "grows" into his tongue.   Most of it, they believe, is caused by his low muscle tone and him not being able to control his tongue while sleeping :(  So we move on to our darth vader mask....yay(insert sarcasm).  They are ordering just a mask for us to just use for practice on him before we get the whole thing.  We shall see how well Patrick will tolerate it.

Today we saw the surgeon for follow up, and that went great.  Everything has healed well and our little guy is a rock star!

Now for our really good news.....we received a letter in the mail yesterday, to notify us, that the insurance has approved his bed!!!!!!!!  YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  We couldn't be more excited!!!!  We are also thankful that we ordered it with the holes for a CPAP mask:)  So so very happy!!!  Thanks to everyone who stayed positive or prayed!!!  We just have to wait for it to be ordered and delivered, which will take a little bit.  But we are one step closer to getting our boy a big boy safe bed :))))

I will leave you with Patrick singing along with his favorite song.  I am not sure how we discovered that he loves this song....but he does!!  He could be so cranky and this song makes him sing :)  Not only will you hear him humming along, the ever talented Tim Kelley shows off some of his belching talents.  If you don't want to watch all of it, watch some and then scroll to the end-that's the best ;)

Have a great weekend!!!!

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 :)