Tuesday, February 10, 2015

Hard Work Pays Off

This is a video from school today.  I will let it speak for itself.  It's a little blurry but, you can still see what's happening:)

Happy is an understatement.  This has been such a long process to get his feet to go in motion.   So proud of him and his amazing teachers and therapist's and all the other helpers along the way!!!

Wednesday, January 21, 2015

Dear Jason

A letter to Jason from Bubby

Dear Jason,

   Hi!  Its me Bubby.  I can't talk, so I thought I would write you a letter.  I want you to know how important you are to me and our whole family.  I want you to know how empty and heartbroken we all feel.  I am trying to ease everyone's pain......along with my sister, crazy brother and cousins.  We are the one's pushing them through.  I am trying to cuddle with everyone when they are sad and I think it is making them feel better.

   This weekend we went on our family trip to Kalahari.  We missed you a lot.   I know you would have been pushing me around in my stroller and running into everyone's heels and driving them crazy....we would have had fun doing that together.  I know you were sitting there with us and making fun of us all......my mom said that you would have been doing that anyways.

   I can feel you around me all the time.  I know you are with me and watching over me.  I have been smiling at things randomly lately, and my mom keeps thinking it is you.....she is right, but I haven't told her yet :)  I know you just have to keep a watchful eye on me.

   You were always so interested in my life.  You always asked so many questions about my medical issues, therapy, EVERTYTHING. You were especially interested when I had my surgery.  When the surgeons gave my mom the pictures of my intestines, you were the first person she thought of and knew you would be excited to see them...and you were!!

   My mom talks about you everyday with us.  She reminds me of how much you cared about us. How you did so much for so many people.  How you NEVER, EVER, EVER, needed recognition for what you did.  How you did things quietly and often.  When my mom was sick with the flu a few years ago, you drove down everyday to take care of us.  If anyone ever needed anything, you were the one to get it.  When it was realized how much an iPad would help me learn new things....you bought it for me....no questions asked, no need for an applause.

   There are some things I remember you doing with us, even though people may not think I remember:   how you would come to D.C. and see us several times a year and always brought us our Faygo Red Pop, how you would show up with like 20 bags of stuff and my mom would make fun of you,  how you would take Avery and wander around the city, always stopping at Georgetown Cupcakes, how you loved to sit with my mom at night and watch T.V. and just talk about random stuff...and I was always cuddling on the couch with you,  how you would make my mom try your chicken pot pie(even though she hates that stuff) and how she actually liked yours, how you would come over every time my sister had a concert, or any other time my mom and dad needed you and babysit me and my brother.  We always had fun with you.

   My mom says that you had a special bond with everyone you met.  You definitely have one with me, and you especially had one with Avery.  My mom tells us often about how before my dad came along, the whole family helped her with Avery. You were especially helpful and important with raising my sister.  You always took her school shopping for my mom, always helped babysit, always took her places when mom was at school or work.  You bought her her first fish, you were the only one willing to sit through all the princess Disney shows when you guys went to Disney World(mom was especially grateful for your company and how much fun you guys had people watching).  Even this past Thanksgiving, my mom had to yell at you because you were sliding her along the kitchen floor like she was still 4 years old and since she is like 5 foot 7 now, my mom thought it was time to stop.

   When I lay on the floor and play with my toys, I see all the pictures around my house, that you took of us.  You framed them and gave them to my parents for Christmas a few years ago.  There isn't a room in the house, that doesn't have part of you in it.....from the bibs that catch all of my food that you got us at IKEA, to the many One Direction stickers you got for Avery....that my mom wanted to slap you for.....but you didn't care....to the couch that you slept on many times while staying over, the Red Pop you brought over on Christmas Eve is still in the fridge, along with the Jesus mints in our snowman candy bowl.  Those 2 things will be a staple at our house from now on.

    I want you to know that I am so happy that you are part of my life.  I want to thank you for everything you did for me and my family.  I know that me being born with a syndrome, is not always easy on everyone, but I was lucky to be born into this family, who takes such good care of me.....and you are continuing to take care of me today...in typical Jason fashion.

   We could have never repaid you for all the things you have done.  My mom wants you to know, that for us, it wasn't about the "stuff" but that's what you liked to do.  It was the hanging out, talking, laughing, making fun of things, endless conversations about medical things and anything random, our childhood days in the pool, going to Showbiz Pizza, staying the night with our Granny, our bickering and arguing, but just being with you was what we loved.  You were our buddy, our brother, our best friend.   And we hope that our love to you, was enough in return.

Keep watching over me and all of us.

Here are some pictures that Jason either took or is in:

Avery and Tim's Sister Melissa.
Jason and Melissa drove to DC together a few years ago.

He could always capture the best pictures

Love this picture

Both of these are 2 of my favorites that Jason took and our in our family room

Loved taking pics of Bubby

Spoiling Avery at Georgetown Cupcake

They flew out on my 30th birthday

Amanda and Jason at Tim and I's wedding
She has been to almost all of our weddings with him :)
You can't beat that smile!
Cuddles with Bubbs

Waiting at Ray's Hell Burger
Always taking him to different places when he came

We Love You Jay!  Thank you for being the best cousin and friend anyone could ask for. 

Tuesday, December 16, 2014

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.


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

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


Friday, November 14, 2014

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
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

Thursday, October 9, 2014

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 ;)


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:)