Roller Coaster of Love

The Rollercoaster......

Last week Patrick did something, that he has never done in his 4 1/2 years of life.  Something that didn't even hit me until after he did it, but then made me so incredibly excited.....

He stood up, by himself, to get his height checked at the doctor.

I was so giddy that day, that I could hardly stand it.  I had a smile from ear to ear.  I was so proud of him.  So proud of all of his hard work.  I was also kicking myself for not getting a picture....so here is a cute random one:

Friday was Patrick's Christmas party at school.  Tim, Jameson and I went.  It was amazing to see how a community comes together for this school and just gives them the greatest day ever.  From the PTA, to the Shriners, to the Knights of Columbus.  It is a huge undertaking and we are so, so, so thankful for all of them.  I also realized, even more so, how much those teachers need to be paid more.  Or like a trip to Hawaii every now and then.

Playing this instrument is too much

Loved the Yellow Bell

Then there was yesterday....
I had a doctor's appointment and then Tim and I were spending the day Christmas shopping.  My favorite day of the year.  Just Tim and I wandering around the mall like teenagers, holding our starbucks cups and pretending we have money....ya know...typical Americans.

The day was absolutely perfect....until....at the end of our trip I was walking through a toy aisle, and it hit me.  Hit me like a truck.  I realized how many times that day I said, "Oh Jameson would love this, or Avery would love that."  But I didn't say it that much for Patrick.....I did say it, but FAR less.  In that moment, my heart sank.  I can't really explain the feeling, but I wanted to cry and just run home and hold him. I wanted to tell the toy stores to invest in a section for our kids.  Just to give us parents that moment.  Instead of scouring online for toys that may or may not be suitable for our kids, and that we have to take out a second mortgage to pay for. That's all...

So....I went home...I cried...I talked to Tim....my knight in shining armor(or is that just all the beer cans?).....I watched some episodes of the Office(and Roseanne, because Jameson made me) and I cuddled the shit out of my kids.  And it helped....it always does.  It hurts to know that our child will never understand Christmas the way our other 2 will, but I have to find the good in it.  That is why special needs parents scour online, and special needs websites, and parent support groups, to find the one thing that will make him excited or his face light up for that one special moment on Christmas morning.  We hold out hope....

But lets face it....I could buy any of my kids something super cool and exciting and they would end up playing with a box.  Its all about perspective.....

This is boring

The purpose of me starting this blog was for several reasons:
1.  I want as many people as possible to know that PKS exists, what it is, etc.
2.  I wanted people to see our family walk the path
3.  I wanted people to know that having a child born in a way that you didn't expect, IS NOT the end of the world.  It is emotional, hard, tiring, confusing....a true rollercoaster.  It's just different and special and there is still an overflowing, abundance of LOVE.
4.  We all handle things in our lives differently.....period.  The way I handle things can be completely different than another parent....but, that's ok.  That's what our kids are here to do....teach us that different is ok.

THIS IS HOW BUBBY HANDLES A SLIDE

THIS IS HOW JAMESON DOES

(I know it's hard to believe, but he is crying)

IT'S ALL ABOUT PERSPECTIVE

DIFFERENT IS OK :)

And Lastly for your viewing pleasure....decorating the Christmas tree:

Look-I'm not too cool to hang out with my family yet...YAY!!!

White trash Christmas decorating

A

Hey Ma...Look What I Can Do...

Happy and excited!!!

We had our teacher conference on Tuesday for Patrick and we couldn't be more thrilled about how well he is doing!!! We actually had to do an addendum to his IEP because he met a few of his goals already!!  We know that his progress comes in cycles, so we celebrate when he is in the mood that he currently is in, where he is motivated and happy and willing to try new things.  That mood can quickly change and hence, will quickly change my mood ;) But it's Bubby's prerogative...

 My school pictures.  I'm thinking modelling may be in his future

Some of the things he has improved on:
Using a switch to signal for more turns at school when he is playing with his friends(a switch is basically a button that signals a noise that he wants more),

He is slowly starting to suck from a straw...we desperately want to do away with sippy cups,

He is learning to hold a spoon for self feeding

He actually held cotton balls the other day at school....which may sound silly, but is HUGE for him!!  He hates touching most things, so this was very surprising

Random cuteness 

He is helping with transitions from sitting to standing...which means he is realizing he has legs and can actually use them.  Now, for Patrick that means he can just put some weight on his feet when they help him to stand.  It is very short and quick, but is huge for moving him to standing.

I like these doggies at school:)

The biggest excitement was last Saturday morning he decided to start taking pieces of banana from my hand and feed himself!!!!!!!!!!  I was jumping up and down:))) Once I composed myself I realized I should record this...I was able to get a few videos of him, although he was losing interest at that point....of course, so I had to help him a little;) But he was initially just swiping them out of my hand!!

I am so proud of him and how hard he works.  I also have to say that his teacher and therapists and aides at his school are INCREDIBLE!!!  We are so lucky!!  Patrick loves them and they love him and he has grown leaps and bounds with them.  I sometimes feel bad "bragging" about them, but then I realize...no I don't. They deserve it for what they do everyday for our kids.  I wish there were more of them in the world!

 Happy Halloween

And

Leaf Eating

Here's to continued progress....


So December 4th is PKS awareness day and is coming soon.  Tim and I will have something fun to share with you that day, that we are super excited about:)  So stay tuned!

Aaand we're out...

Pretty much the best picture on the planet

Will I Ever Finish This Post....

I started writing this a week ago.  Then got busy, which is probably good because I changed the whole thing:)

**Scratch that...Lets try this again....I am now over 2 weeks past, because Patrick decided to catch a bug and was sick for several days, in the midst of the epidemics and weird viruses going around, along with a mother who is narotic....bad combination.  Needless to say...he is slowly on the mend and feeling better.  Now back to what I was originally trying to tell all of you....

Last Thursday we were at U of M, getting a video EEG done.   The week before, Patrick had an episode at night, where he jerked out of sleep.  He has done this for as long as I can remember and they have not been able to pick up any seizure activity from them, in his previous EEG's.  But last week's was a little different.  He startled a few times in a row, with about a 5-10 second pause in between each jerk.  It only lasted MAYBE 1 minute.  But he would cry after each time:(  This was definitely new.  So we called the neurologist and he said they are moderately suspicious for seizures, and he wanted to do an EEG.

This is what that day looked like:

  Why are you making me wear this??

Cant stop me from playing my piano

He is the best!

Seizures are common in PKS, so its not like we aren't preparing ourselves for them, but at the same time, we dont WANT to go down this road.  We know the odds are pretty good we will be at some point, but we still hold out hope that maybe we wont??

So Tim and I, took Patrick to the neurologist, whom I adore, to get the results. Based on what they saw on the EEG, Patrick is not having any abnormal brain activity at all.  Not while he is sleeping or awake, and he did startle awake while he was there.   We were very happy to hear this.  The doctor did say that he doesnt know for sure if Patrick did or did not have a seizure that night or not. But he has not had any sort of startles since then, so we all decided on a wait and watch approach.   We didnt feel that medication was an option, seeing as his EEG was clear and we dont have a confirmation of a seizure that night.  If we see anything again, we will not hesitate to put him in the hospital for long term monitoring.

My sweet boy

I love his doctor's approach and calm way of explaining everything in detail to us, along with the fact that he is knowledgeable with PKS.  He is very honest and realistic and valued our input.  And I was super grateful for having Tim there.  2 sets of ears were so much better, especially after we left and I needed to review EVERY SINGLE DETAIL in my head of what he said;)

So we watch and wait....and for now...no seizures:)

So this all started in the midst of us trying to get Patrick acquainted with his new friend: the sleep apnea mask.

Our house looks like we are selling sleep masks on the side.  We have so many different types.  It is quite ridiculous.  My neighbors are probably wondering why the MedEquip guy is always at my house.

This is what it looks like:

Sleeping on our floor for a while until he gets used to it.

But my poor little guy has practically no nose bridge to hold it in place and he has a a fairly big head, which we all know he gets from his father.  So it can make things challenging when finding the right fit.

Tim also likes to call him Bain from the Batman movie, because of his mask. So every time we put it on, we have to listen to Tim recite lines from the movie......we are mature people...really.

I feel like I have a new born baby again, with the constant getting up when he tries to pull it off, or if there is a leak.  For some reason though...Tim wakes up so refreshed in the morning...like a Foldgers commercial. Again just like having a newborn in the house.  I kid, I kid...

We are going to start him on some melatonin to see if that helps him fall asleep and that should help with the mask.

The next big decision which has come up in the last few days is whether its time for a wheelchair. I have to be honest, I am actually having a little bit of a hard time with this one.  Can't really explain why yet.....But we have had to adjust his modified stroller a few times in the past few months due to his growth.  So we have to decide if we want to do a wheelchair or stroller....I will explain this in more detail later.  But with this comes the modified minivan discussion. Which if you've ever looked at the prices of those.....because I know all of you surf the web checking out the latest pimped out handicap vans...my PKS family can relate;).....they arent cheap.  But I will talk about that more later.

It's exhausting being me:)

But through it all....my boy is a champ.  He is just plugging along being Bubby.  Such a cool kid:)  He still amazes me everyday. When I went to his school yesterday, he was riding around in his tricycle, looking all cool.  He looked up at me and his face was like, "Oh hey Mama, just riding my bike."  I am so happy that he loves school!!

Oh and....those other 2 kids....
Avery and Jameson are doing great.  Avery is loving school this year.  She is learning about World War II, which she finds interesting, so then Tim and I get the same exact lesson(word for word) when she gets home:)   She is still playing softball and becoming more confident and improving so much!  Her braces are now on the top and bottom teeth.  She's looking good:)

I've been kind of homeschooling Jameson with numbers, letters, cutting paper, not eating glue...ya know...normal preschool stuff.  He's doing great.  But his speech is still delayed, so we will be working with Early On for some speech therapy. Although he can scream," Tim" very clearly through the house, or say,"damn" while riding in his carseat....so weird.

 Zoo trip with Phoebe:)  These pictures crack me up!

Thanks to our wonderful supply of babysitters, Tim and I are able to get out and play softball together once a week and show off our mad skills with our awesome team:)  Yay us!

Here are some pictures from our trip to the pumpkin patch during the rain and before Jamesons meltdown over having to share the steering wheel of the train with another kid.....2 year old problems ;)

 Oink

 Moo

Such a good daddy...and cute too:)

Random pictures for the day:
Here is our friend from the summer that was living on our deck.  She is close to dying now:(  But she was HUGE and fun to watch spin webs...

Then there are these 2 cuties:)

Thats all for now.  Thanks again for supporting Patrick and us:)
xx
A

Today I am thankful

This morning I was doing some things in the house.  The never ending pile of laundry, that I despise, the constant loading and unloading of the dishwasher, the cleaning up of Avery's 15 water glasses that get scattered around the house, like in the movie, Signs.  Cleaning up the alphabet magnets behind the toilet....ya know...normal day.

In the midst of all this fun, my phone had a text message come through.  When I looked at it, this is what I saw:

There was a message that read:
Patrick has been grasping this shaker beautifully during music therapy today.

It was from his teacher.  HEART...FULL

Patrick hates holding items in his hand. With the exception of his sippycup and a crinkly chew toy.  Normally when you put something like this in his hand, he will open his hand and refuse to hold it.  He pushes it away like the plague.

This...is....huge!!!!!

I'm so proud of him and his progress.

What makes it even better was that his teacher took the time to take his picture and send me a text message.

THANKFUL, GRATEFUL, BLESSED....beyond words!

Enjoy your day.
A

Bye Bye Summer

Another summer gone.  Crazy.  How does this happen? Personally I am good with this summer ending.   The kids enjoyed it though.  Here is a quick look at some of the things we did....or that I remembered to take pictures of:)

          Quality time with the Kelley's               

My pretty girl 

4th with Family!

Too bad those sparks are so far away from that shirt, huh?

  Not really sure..

My big boy practicing sitting on a bench 

                             Therapy star

 Pimp!

 Love

 Umm...not so much love going on there...

That picture still cracks me up.

I am sharing some notes from summer school.   After he recovered from being sick this summer, he went 110%.   My excitement and emotion from these notes, can not be explained in words.  The last one his teacher wrote for the summer, I actually don't have a picture of, and it's with him at school.  But that note stated how much he has improved, just this summer.  He has been so interactive.  This Mama could not be more proud of him!

 These notes may seem so small for most kids, but for us, these are huge!!!! We have been working so hard with self feeding and using a straw.  Its moments like this, when I look at Avery and Jameson and realize how natural, certain things are for everyone else.   How Patrick's brain and muscles must be just working away constantly, while he is learning his environment in a different way.

Swinging at therapy

This picture is explained below...

I literally balled when this note and picture came home.  Heart exploding!  So proud.

Then there is this video of Patrick walking in a suspension device at therapy.  He used this several times this summer.  On this day he was not fully weight bearing, but he was doing a fantastic job with his walking motion.  He did it for quite a while too.  Rock star status!!

Quite a summer for my boy!

More summer fun

Up north and Mackinac with Grandma and Grandpa:)

Rock skipping

Too cute for words...

He is not the best traveler....unless this happens

Rocking some jams..

Like..One Direction and 5 seconds of summer(who I renamed as 50 shades of summer...hehe), they were totally awesome!! Thanks to Aunt Sissa and Aunt Amber, who graciously gifted Avery with these!! It really was a great time watching Avery so excited and dancing and acting completely like a typical 12 year old at a boy band concert.  I have major sabotage video and pics for future reference....mom of the year, right here;)

Avery also did the crim this year with her aunts, uncles and cousins....a few races actually.  Where is Jason??? :)

Very short parental get away to visit The Robertz and meet the new little one....

                Little Rhett Robertz....LOVE!!!

I will be honest and say, that this summer was not the best for me personally.  There were lots of peaks and valleys.  Hence the reason for not a lot of blogging(well and not having a lot of time or a working computer right now). Realistically I should be blogging during those times...when PKS or life in general has me down.  People need to see every side.  But sometimes I just don't.  

That being said....what I do know, is that we are surrounded by the most amazing people.  

Hands down. 

 Period. 

 Family, friends, etc. 

 Even when I don't respond to texts or calls or Facebook right away, I know you all understand why and don't judge me otherwise. I know if I can't make it somewhere because a kid is sick or having a rough day, you are still there....SARAH!!!xo

My parents, Tim's parents and my Aunt Barb, who drive an hour, at the drop of a hat, to babysit.  Thank you!!

These cookies are from my sister.  The best sister a girl could ask for.  One who always puts others needs above her own.  Who is always looking out for us.  Who has the biggest heart.  I could go on forever baby(movie quote...who gets it?)  Everyone should have a Sissa in their life...period!  Although I gained 5 lbs from that basket. 

Despite some bumps in the road, I know we are lucky and I need to tell myself that everyday.

And then there are these 3 kiddos....

I have no explanation for this..

Bye Bye Summer

Bring on all things pumpkin...

A