Friday, June 27, 2014

The Plague

  I need to decompress....

The worst possible feeling in the world, is when you have a sick child.  Hands Down.  You worry about your kids all the time, but when they're sick, It goes up a notch...or 12.

So, Tim and I are pretty much the same when it comes to sarcasm and humor.  We love them both.  We rely on them.  They are Our friends.  Some people don't get it...that's ok.  You would hate to see the people we are, without them, and we feel it has made us more sane in an insane world.  So this week, we will find the humor.  Somehow, somewhere.....it's there....I know it is.....even if I have to find it under the 12th mountain of laundry downstairs....it will prevail.

As we lay here delerious from exhaustion, our boy sleeping next to us, Avery and Jameson in nice clean beds, we will look back at the fact that we had someone in our family vomiting for 7 days straight(partially in a hotel room), a trip to urgent care for stitches, and a hopefully diverted trip to ER for Bubbs, because of dehydration.  Its a reality show in the making, and a week for the books.

Patrick can be the easiest and the hardest patient.  He likes to sleep a lot when he is sick.  He's usually not too fussy, just a little.  He doesn't get sick often, so we are thankful for that. 

What makes him challenging, is the unknown.  Like a baby...he can't tell us.  And the unknown of whether this illness will be the one to put him in the hospital.

What is he feeling? Is there pain? Is he dehydrated?   Did he aspirate?  Will he get pneumonia?  Am I missing something?  Most parents can relate to some of these if you've had a sick baby. 

Then there is the part when he is vomiting every 20 minutes, but doesn't know how to lift himself up.  So you're lifting a 35+ lb kid, who is dead weight, and is upset and in the fetal position, and holding him over whatever clever option you have, to catch it.  Hated it! Every ounce of it!  You want to take it all away from him.

Then the thought hits you....how will I do this when he is 5, 10, 15 years old and weighs 50, 60, 70 lbs??  That weighs heavy on your mind...(no pun intended;))
But then you move on, because you don't have time to worry about that now....

You spend 90 % of the day squirting pedialyte into his mouth every 5-10 minutes, so we wouldn't have to make the dreaded ER trip for IV fluids.   It was a battle.  It didn't look good for a while.  He was not urinating much or holding the fluids down.   We finally got the vomiting to stop(with the help of some meds). Now he is finally holding it down and we are seeing a little more in his diaper.  I'm hoping we won.  Still on the fence, but close!   Keeping our fingers crossed for a good night!  Blogging is keeping me awake to watch him a little longer;)

Other things that go through your mind while your kids are sick:
Will he be able to go to therapy monday?
Will this set him back?
How will I get this laundry done?
Can I watch Orange is the New Black without Avery coming in the room?
I don't want to eat in case I get sick, so maybe I will lose 5 lbs. now.
I hope no one comes to the door, I haven't showered, I have no bra on and I am certain there is vomit somewhere on me.
Is it too early to drink?
Will the alcohol kill any germs in my belly?(Tim and I actually had this conversation)


We have an amazing support system of people cheering us on, praying for us, laughing with us or at us, and several medical peeps, in the fam, so that is major helpful.  We couldn't make fun of ourselves or get through this without all of you;)

Avery and Tim bounced back great, and Jameson did too, except he decided to take that bounce off of a step, with his forehead.  That kid...... He must have hit it in the right spot because he's been so happy since then! Awww...his first stitches:)
If you could keep our boy in your thoughts and prayers that his recovery keeps making progress!!!
Thanks a bunch!
Good Night:)

Monday, June 23, 2014

PKS Conference

Where to start...
A weekend full of laughing, crying, fulfillment, disappointment, gratitude, LOVE.

I sat in the room where we were eating dinner Thursday night and was just speechless.  I looked down at Patrick and around at his PKS friends and thought about how all of this preparation, traveling, anticipation, love and excitement in the room, was all for them.   All of these people were here for these amazing, PKS kids.  The thought was overwhelming, calming and fulfilling.

Our weekend didn't go completely as planned, but was still a life changing and wonderful experience for all of us.  The hotel was very nice and we were all soooooo excited to be there.  This was our first real vacation since Jameson was born.   He had never stayed in a hotel before, and he was more then excited to get into our room(which was gigantic!!), and run around. 
 Cuddles in the hotel bed with my sissy :)
 
 First time destroying a hotel room....
 didn't take long
 
Taking over the beds
 

Thursday morning we went to the Field Museum, with our friend Petro.  Fun times!  I'm not sure if Petro will want children now(sorry Erin), after walking through a museum with the Kelley's, but it was fun none the less, and great to see him!

 Thanks for joining us Petro :)
I love this kid....
 

Thursday night was the first dinner and we got to see everyone together for the first time.   The only way I can describe this weekend is that it was like speed dating.  You're wandering through a room, trying to talk to as many families as you can.  You have wonderful, meaningful conversations.  You realize that every family you talk to is a perfect fit.  You connect instantly.  Then you realize there are so many others that you want to meet and talk to.  You may get to them, or you may not, because you find yourself lost in the moment with the family in front of you.  It can be overwhelming and amazing at the same time.

Anyway you look at it, you're connecting with people who you share a very rare, unique bond with. One you cannot describe to anyone other than the people in that room. 
 
 Patrick flirting with Mel.  Such a sweet girl :)
Was great to meet her and her Mom Tiffany!
O..M..G...like stop taking pictures of me Dad!
 
 
We ate dinner with Una and her Mom, Kerry and her brother.  Great company and Una knocked my socks off.  What a girl!  She was just reaching out and grabbing her food and feeding herself.  So exciting to see!!

I wish I could go through and tell you all about every single child and family we met or even the one's we didn't have a chance to meet.  They all deserve their own write up.  I was amazed by every single child.  Each one, on their own timeline.  Each one, proving doctors wrong.  Each one, just as adorable and sweet as the previous.   Learning about what they love to do, where they go to school, their favorite foods, how they love to swim.  Listening to their little voices sing and talk.  How they all sounded like our Bubbs, but in their own way. I could go on and on.....
Little Liz and her amazing Mama Emily.  Such a little cutie, and amazed me in the pool!!  What a swimmer :)
 
 
Patrick meeting his Irish brother Cormac.  He is so
sweet. These 2 look very similar, especially with their glasses on....but as you can see, neither one of them wanted to wear them for our pic :)
His family came from Ireland.  So nice to meet them.
 

Friday was conference day and we listened to the doctors from CHOP update us and talk about research.  Very interesting to listen to.  We had several other speakers through the day, different doctors and therapists.  And then a nice round table discussion with parents at the end.  After dinner and a rest, we went to the pool and swam with some other families.  It was amazing to see how relaxed our kiddos were in the water.  They truly love it.  We met little MJ and swam with Liz and their parents.  It was fun to watch them in the pool.    Although their dad's, and Tim, decided to take over the spotlight and dominate the water slide :) 
 Listening to the Orthopedic doctor.  He was very passionate
and nice to listen to.
 
 Look out Bubbs....there is a giant belly button behind you.
 
 My little baby was loving it.
 
Me and my boy :)  He loved it!!
 

That night we were hanging out with several families.  Just having fun.  We got back to our room about 12.  Bubby had fallen asleep, Tim was showering and I was getting Jameson settled down.....when all of a sudden......Vomit fest 2014 took place.....WHOA!!  Poor Jameson, was so sick all night.  We thought it was from drinking too much pool water or something he ate. But not sure that was the case now.  I probably got a total of 45 minutes of sleep that night.  I felt so bad for him.  He was having soooooooo much fun and then to get sick :(  So instead of sitting by the pool with the families on Saturday, I was pumping this kid full of fluids.  I was delirious from exhaustion and worry, and completely mad at whatever virus/bug decided to take hold of him....this weekend...of all weekends.  We also learned a few of the PKS kiddos also had caught something.  Such a bummer and scary to have a sick child away from home, so we are hoping that they are feeling better now too!!

Tim was able to take Patrick out for a bit before his nap on Saturday, so I was happy about that :)  But jealous and completely bummed out that we were missing the whole day.

He slept for 2.5 hours on Saturday and woke up seeming to be fine.  We decided to try and go to the dinner, just for a bit, so we could see everyone....Plus...it was supposed to be outside, so we felt it would be safe.  But....a massive storm came in just as dinner was supposed to start.  So we ended up inside. We tried sitting over in a corner and tried to keep him away from everyone. 

Lillie and her mama Amber.  Was great to finally meet this little cutie pie.  It was her birthday on Saturday :)
 
During dinner we were presented with the most generous gift.  Every family, within this family, is so generous.  Whether it is with just listening, giving advice, sharing equipment, etc. 

Patrick was chosen to receive one of the 2 Upsee's donated by an amazing family.  Tim and I were both overcome with emotion.  I am blown away by this family and their complete generosity. I can't put into words the feeling of that moment.  We told them how thankful we were and that someday, we strive to pay it forward, in a way, that we see the happiness for someone else, that they gave to us.  So this is a public Thank You to them!!!  You have brought happiness and the hope of getting Patrick to another levelin his development.  We are truly grateful and blessed.
Naomi and her mom Edythe.  Such an amazing family.
Naomi is an absolute doll!!

If you don't know what an Upsee is....check out the pics.  Its a new device that allows your child with a disability to walk with you.  It is something Tim and I have been looking at and was on our Bubby wish list, to someday get for him.  Now he has it.  We were sooooooo excited last night that after baths, unpacking, and Jameson was in bed, we tried it.  Probably wasn't the best time of day for Bubbs, but we did it anyways :)
 So beyond excited about this!!
 Modeling in his PJ's
 He didn't like it, in the beginning, but slowly became relaxed and stood tall.
 
So as I am crying and talking with Naomi's family, Tim is in the bathroom.  We decided we were going to take Jameson back up to the room....and then....Jameson pulls on my leg, and I could see the look on his face.  He didn't feel good...it was going to happen.....I tried to pick him up to run out of the room.....nope.  Instead I was showered with it.  I.....felt....so....bad!  Not only for him, but that we were stupid enough to bring him down there in the first place and expose everyone.  Ugh!  We just so desperately wanted to see everyone:(  We are praying that no one else at the conference gets it, especially any of the kiddos.  Tim was victim #2 in our house, this morning.  Thank God, we were home though.

I have to apologize to the people who came up to us and tried talking to us as we were running like mad people out of that room. So sorry:( There is something very humbling about walking through a hotel with your, now naked, kid and dripping wet from him.  I am hoping it is something to look back and laugh about....someday?! 

Bubbs had the best weekend.  So happy...so relaxed.  Almost like he knew he was with his family and friends.  It was so great.

I love everything about this picture!
Amazed at how they are all sleeping in the same position.
Jake, Patrick, Simon, Todd
 Anthony, Luke and Patrick
These boys are such charmers!
Luke was loving Patrick's hair :)
This picture cracks me up. 
You have Patrick, Luke, Anthony and Kara, all connected.
Then I love that Jake is looking at the camera and posing for us.
Then there is photobomber Jameson.
 
And then there is Avery.  Oh, how she enjoyed her weekend.  I have to thank Sally (Todd's mom)for encouraging Avery and Gretchen (Simon's mom), who wanted to make sure she was included with the older siblings.  A lot of the siblings have known each other for a few years, so already have that connection.  It's not always easy for a 12 year old to walk over to a group of peers.  Gretchen went out of her way, in the midst of her busy night, to introduce Avery to her daughter, Maddy.   Then off Avery went for the weekend.  She was so excited to spend time with them. I'm not sure we saw her more than 2 hours the whole weekend.  The pure enjoyment that she got from being with these kids.....I can't put into words.  Last night, she was telling us about her weekend(and if you know Avery, there was no detail to spare) she told us how nice it was to be around kids, who "just get it" and she didn't have to explain why her brother doesn't talk or why he shakes his head all the time.  We heard stories about all the other PKS kiddos, through the stories Avery had learned from their siblings. 
 
It makes me cry, when I think about how amazing these siblings are.  Truly!  I was so impressed to watch them interact and take care of their brothers and sisters without hesitation and with so much love.  I often found myself just watching them.  We talked to Avery about how she shares a bond with these kids that is rare, and is shared by few people in the world.  That was one of the high points for me this weekend.  The world could learn a lot from these kids, and I hope they do!
Avery and Airyn taking a selfie
This little girl is amazing and an inspiration to us and Avery has
told us several times about how much fun she was!
 

Lastly....the PKS kids board.  The people who spend years organizing and planning this event.  An inspirational group of people, who put the needs of our PKS kids and families first.  Who make sure we are all comfortable, welcomed, and love all of our kids as their own.  How they have time to plan such an amazing event, with families and a PKS child of their own, is beyond me.  It was amazing.  No words can describe it otherwise.  I only really got to enjoy half of the weekend.  I can only imagine the fulfillment of a full weekend!  You all are great at what you do and deserve major props!!  Thank you for what you do for our kids!!

Long post for a long weekend!  I know it was long, when both of my boys slept until 10 am today!!!

A few regrets....
we were not able to talk to everyone as much as we wanted, or meet everyone we wanted to,
our poor little fella was sick :(
And I am awful at remembering to take pictures, even though I love taking them.

Going to this conference would not have been possible without the support of our family and friends!! So thank you, thank you, thank you!!! All of you!!

A special thank you to Aunt Laura.  You know why.....and we love your love for us and your family in general, and your dedication to Bubby!! xoxo


                                                Bubby took one for the team and gave his
                                              brother his binky in the car on the way home.
                                             Your family thanks you....and half of Michigan!
                                                   Enjoying some brother piano time
                                                             when we got home :)

Tuesday, June 17, 2014

Chicago Bound....


Thanks to all of you....
We are headed to our conference tomorrow.  We can't thank you all enough for helping us get there.
Thank you for buying shirts...
Wearing them proudly...
Educating people...
Buying more shirts....
Donating...
Coming to our fundraiser....
But most of all....
Thanks for LOVING our boy....unconditionally and with such an outpouring.
It would not have been possible without all of you supporting us and our little guy.

We are so excited to get away with our PKS family and learn some new things.  We will have lots of pics when we get back, so we can share our family with you too.

Without further waiting...here is our thank you...


Much Love.


Thursday, June 5, 2014

Happy Birthday Sweet Boy

Well, this Saturday my Bubby will turn 4!!!  4 years old!!  How did this even happen?  Its funny how time has a way of just moving right along. These past 4 years have been such an amazing journey for us.  Tim and I often ask each other, "Did you ever think in a million years that you would have a child with a disability?"  Of course not, who does think that?  But it's funny, because if someone would have told me, that I would have Patrick, 5, 10 or even 20 years ago, I know I would have been perfectly excited knowing that I get to take care of this amazing little boy.  And I am 100% certain that there is no one else in the world that I would have wanted to share this journey with, then Tim. 

                                                      They both look so little :(

That doesn't mean I don't hate PKS....I do!  A lot.  The past few weeks have been a lot of peaks and valleys for me, with his birthday coming.  But I also feel incredibley lucky to have Patrick as mine, and to share this journey with families all over the world.   I often have a hard time, when I see all the things that Jameson can just do, without thinking about it.  The other day, I gave him a juice box, and he just takes it and knows exactly what to do with it. Puts the straw in and drinks it.  No problem  That made me want to break down into a sobbing mess.  Why is it, that he can do it and Bubby can't?  What happened in my belly with Jameson, that was so different than Bubby?  This is something I know the answer to, and that I had no control over, but yet, I still question it sometimes.  These are what I call "Bad Bubby Days."  Those are days when I hate PKS and just want to cuddle Patrick and cry all day.  It's the days when I work so hard to make sure Patrick is included in all the "normal" activities of the day, and then realize, he can't do half of them, but you still do it anyways.  Why??  Because half the time, he is perfectly happy just laughing at his hand instead of chasing ant's around the yard with his brother.  But you do it, because you love him, and you want him to be interacting with others.  He still learns from it and enjoys it in his own way.
Look at my chubby Bubbs. Jameson was born 1 year to the day, after this picture.....weird


We are so grateful for you Bubby!!  For all the things you have taught us in these 4 years and all of the things you have learned too.   When I realize how easy it is for Jameson, it makes me realize how much harder Patrick is working, 24 hours a day, 7 days a week.  Just constantly taking things in and trying to figure things out.  It makes me so proud of how far he has come.  From holding his own cup, to sitting up, to reaching out for toys, putting them in his mouth, being entertained by the iPad, standing with help, his smiles at people and his ability to wrap his arms around you and give a hug.  The list goes on....

Happy Birthday Patrick Michael!!  We love you Bubber Wubbers!
                                          Jameson was in this picture......we just didn't know it yet :)
        
                                                     Celebrating with Tim's Family
 
We will be celebrating this weekend at Avery's softball tournament:)  That girl has just kept us moving this year.  Busy, busy, busy!!  I almost have a 7th grader!  That right there makes me want to start sobbing....for several reasons :)   She had her band and chorus concerts this past 2 weeks.  She makes me so proud.  She had to dress up for chorus, because it was a broadway themed concert.  She chose Gertrude McFuzz, from Suessical.  She is a fun, quirky bird, just like my Avery.  She looked adorable! 
 



                                                                     Sissa :)
                                                           Aunt Barb and My Parents
                                                         Tim's Parents were there too,
                                                         but didn't get a pic before they left
                                                      
 
I just love this picture of her. 

Jameson celebrated his 2nd birthday last week.  That kid!!  He is just the life of the party right now.  He is crazy, funny, and just out of control.  We love it!!  He absolutely adores his sister.  And he is learning how to help take care of Bubby.  He is always coming up to him and giving him his cup....although its more like jamming it down his esophogus.  We are working on the term "gentle" right now :)   I am certain that all my kids came into the world with a purpose!  Jameson's was to entertain and flirt.  He is a charmer.  I see a lot of Tim in him ;)


So the past 2 weeks have been filled with the following:
Concerts
Practice
Games
Therapy
School Picnics
Eye Appointments
Sleep Study
Birthday Parties
Vomit
And Scarlett Fever/Strep, just for good measure.

The 2 appt's I dread the most....Eyes and Sleep Study.
Patrick's eyes are looking great.  Needs new glasses, but not much of a change.  His sleep study was ok.   He hates them!!!!!  So it makes for a long night for both of us :(  They were getting him set up for a mask.  We will get that ordered in the next week. 

Hopefully we are settling down now!  2 weeks until the conference!!!!  CAN...NOT...WAIT!!!!!!


I am hoping I can do another post befor then.  If not, you will be getting one after! 

Enjoy this weather!  (Well, if you live in Michigan anyway....its gorgeous)
                                                      Enjoying the bounce house at his
                                                                     school party

                                                          It's hard work being Bubby
xo