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 :)