Here is some footage of Jack and his Easter Egg Hunt this year. He really likes the eggs with coins in it. I would also like to take this time to give a special thanks to Sharon, who sponsors the Easter Egg hunt for all the kiddies. Your kindness is amazing.
I have finally put together the official trailer to “We Know Jack”. It was tough to revisit some of this old footage and see how sick Jack really was. It is helpful to take breaks from the film to actually watch and play with Jack now, and see how wonderful he really is. The experience, though stressful and scary, was totally worth it. Hope everyone enjoys. I plan on having the full documentary in the Fall of this year (2013).
Disclaimer: It is a tear jerker, so you may not want to watch at work. I have seen it 20+ times and it still draws a little water works.
I know it is past the holidays, and I am sure the last thing you want to be reminded of is Christmas (Kaytee), but here is Jack opening gifts for the first time at Home. There is also a little surprise at the ending for everyone. Enjoy.
Now to clarify, when I say “Bad Ass”, I am referring to how amazing this kid is. Tomorrow he goes in for his 12th (I think) surgery. Finally the day Kaytee and I have been waiting for since the first time we had to change his ostomy bag. The take down surgery. So why is Jack such a “Bad Ass”. I will clarify.
Here is a kid who has been through ECMO, multiple surgeries involving diaphragm, bowel, heart, lungs, etc (I will spare you the detailed list), but that is only part of why he is such a “Bad Ass”. The real reason is because after all that he just looks at you and starts laughing. He is the happiest little boy after everything he has been through, and that is what makes him a “Bad Ass”.
Now, this shouldn’t come to many as a surprise. And I am going to take this time to praise my wonderful wife, and Jack’s mother, Kaytee (she doesn’t know I am doing this right now because she is with Jack at his helmet appointment). Watching her fight for Jack and this family is extremely inspirational. Between her working at her job and constantly in contact with anyone or any organization involved in Jack’s well being, she is a marvel to see in action. I am sure everyone at Children’s Hospital can attest to that.
I am starting to get this parenting thing down, but Jack and I would be lost puppies without Kaytee. She is truly the glue that keeps our happy little family together. So there is a reason why Jack is such a “Bad Ass”. It is because her mom is the “Queen of Bad Asses”. I love you Kaytee very much. Thanks for being such a wonderful wife and mother to our son.
And what’s a post without a pic. Check out Jack flying a kite…sort of.
Let’s go fly a kite, up where the…something something. (Think Mary Poppins)
And based on our visit to Children’s yesterday for Jack’s High Risk appointment, he may lose a layer that has been causing quite a “stink” for his mother and I. That’s right, Dr. Lim believes he will be taking down his stoma and relieving our duties of ostomy care in the next month or two. Most likely late June, early July. I never thought I would look forward to changing a sh!t filled diaper, but bring it on.
This is also motivation to finally get our pool opened for the first time since we moved in to our house 2 years ago. Jack will be able to enjoy the summer a little more without having that bag attached to him. Here is a weekend pic of him already getting into the spirit. Also keeping with the theme of bagged sh!t an insert from one of the greatest movies of all time, Billy Madison.
No autographs, please. I am napping.
[after putting dog poop in a paper bag and lighting it on fire on Old Man Clemens’ porch]
Billy Madison: Oh my God, Old Man Clemens hates shit.
Frank: Shh, here he comes.
Old Man Clemens: Who the hell is it? What do you want? Judas Priest, Barbara, it’s one of those flaming bags again.
Barbara: Don’t put it out with your boots, Ted.
Old Man Clemens: Don’t tell me my business, Devil Woman. Call the fire department, this one’s outta control.
[Old Man Clemens steps on the bag, then lifts up his boot and smells]
Old Man Clemens: Eck, poop again.
Billy Madison: He called the shit “poop”.
[Billy, Jack, and Frank laugh hysterically]
Frank: This is the best night of my life.
[They continue laughing]
Old Man Clemens: I’ll get you damn kids for this. You’re all gonna die.
That’s right. Welcome the new member to Reds Nation, Jack the Red. As you can see he has his new helmet. He seems to show little concern about the helmet, but he does stress that if the Reds don’t get their bats going it will be a long summer for the Redlegs.
Tonight will be our first attempt at having Jack wear it overnight. Our biggest concern is since day one Jack has always used rubbing his head as a soothing mechanism. Hopefully this doesn’t deter that, and more importantly he doesn’t find his hands smashed under the helmet. Though it is rather funny, ever since we brought the helmet home he has all of a sudden started sleeping on his side. It’s as if he knows what the helmet is for, and like every obstacle before this he wants to kick its butt. The experts say 3-4 months of wearing the helmet at 23 hours a day. Jack doesn’t take a liking to those numbers, so we will see when he says he is ready to move on. He has done a fantastic job so far.
This is Jack’s father rounding third and heading for home. GO REDS! GO JACK!
I’m on deck?!
Yeah our team played well. You just go out there and play your hardest. You know.