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 :)

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