Friday, October 30, 2009

Hmmm...


I like to think of myself as one who can take criticism. After all, I can give it, so you tend to learn. I can not, however get used to my children's totally innocent, direct comments. This is how our day started today:

Brodie is on the couch. I brush my teeth, get dressed and go sit on the couch next to him. He is exceptionally cuddly, which is nice in the morning. He starts rubbing my back, which is totally normal, he always tries to butter me up when he wants a good back scratch. So, as he is commencing with the back rub, he says to me:

"You're a little bit skinnier than all of the fat people."

What? Where did this come from? I say "Oh really honey? But I'm still fat?'

He says "Yeah, but you are just a tiny bit fat."

Thanks, Brode.

Wednesday, October 28, 2009

R....Is For ROCKSTAR! (And REMY Too)


Most know of the craziness our family has endured over the past two years. On his three month birthday, our youngest, Remy was diagnosed with a devastating disease called Tuberous Sclerosis Complex. TSC is caused by a genetic mutation that doesn't allow the body to produce a protein necessary to stop tumor growth. As a result, he has numerous brain tumors that caused uncontrollable seizures for the first eight months of his life. He was incredibly delayed, and in this picture, he is almost eight months old and barely able to hold his head up:

His Doctor was not happy this his progress, and decided to present him to the surgical board at Detroit Medical Center. He was scheduled for an epileptic resection surgery in June of 2008, he would turn nine months old in the hospital. During the first stage of his epileptic resection surgery it was decided that 40% of his right hemisphere would removed. Part of the brain tissue removed was his motor cortex, effecting the left side of his body. This is him in the hospital:




Fast forward 16 months....and you have this amazing little miracle of a boy. I can't tell you how hard it was to go to Dr. visit to Dr. visit just to hear the same thing: He is behind, he is delayed, he might walk, he might not, he might be cognitively delayed, he might not speak, etc..... It is exhausting to try and envision your life with a child when you have no idea where they may fall on the spectrum of "normalcy". What I do know, is that he is amazing, and blowing everyones expectations of him out of the water. I received a report in the mail from his orthopedic Dr. yesterday, here is an excerpt from it:

Physical exam: Remy was a happy healthy-appearing boy. He had some drooling, but less than previously. He had wonderful language. He had slightly increased tone throughout the left side and slightly decreased function, but did use both hands when playing with toys. He appropriately interacted with toys for his age. He walked easily using a reverse walker. He also took a few steps independently without holding on, but had a better gait pattern when he had on hand held. He had full passive range of motion. His left foot in particular was pronated. Strength could not be tested b/c of his age. His DAFO was too small for him. Let lengths were equal. Back was straight.
In summary, Remy is a 25-month-old boy with tuberous sclerosis and resultant left hemiparesis, who was making wonderful gains at this time.




As I said before.... R is for ROCKSTAR!

Monday, October 26, 2009

He's Too Young for This...

Picture this. A four year old boy, a swing, a sunny sky and the realization that life doesn't go on forever. Not fair. Well, not the mortality thing, that makes sense, it's the little boy coming to grips with it that makes me sad.
Brodie came running to the back door yesterday day and says, "Tai Tai is so, so sad because he knows that people die someday, and that daddy is almost an old man, so he is going to die soon." Mind you, Matthew is only 30, which makes it a bit funny. We look out the back door to see this:

You can't quite make out the tears, but they are there.
I have these terrible, vivid memories of being a kid and being kept up at night over these very same thoughts. The difference is, I was 12.
Here is Daddy trying to make things better.


Here he is after being explained the whole heaven thing. Daddy gets pretty technical, but I think he is ok. It is just such an amazing picture of how resilient kids are. Just 30 minutes after realizing his father's mortality, he is as happy as can be. Kids are so cool.







Sunday, October 25, 2009

Oh, How We Love the Park.

Ok, so one thing that I have learned as mother of boys, is that if they sit still for too long, things are going to get ugly. The most difficult thing about having three boys, all on different schedules is making sure that they get out and move enough. While it doesn't happen as often as we all would like, we go to the park quite a bit. We love Parmalee because Brodie can skate, and then we can all go play.
Here are just a few pics from out last trip to the park. You can tell it is fall, as the snot is flowing.




Unfortunately, I have no photo references to what Uncle Ed was playing with the kids. He had them all convinced that the concrete squares on the ground were graves, and the numbers were the dates when the people died. Beyond the idea of dead bodies being buried in their park, he had them convinced that they were zombies too. Thanks Uncle Ed.




Saturday, October 24, 2009

My Little.....Angel?





So, we are driving home from Jamie's house the other day, after a REALLY long day of errand running, and both Matai and Remy have completely and fully HAD IT with the car. And probably with me for that matter. As I am turning back onto Summit in Sylvania, I hear a shockingly angry voice from the back seat that says;

"Mommy, I wish that you were someone different!"

Naturally, I'm slightly heart-broken, wondering just who the child that I bore and brought into this world would rather I be. Surely, I, his mother, must be the picture of perfection as far human beings go in the eyes of a four year old boy. I think before responding, so as not to react too harshly. I say "Well, sweetie, who do you wish I was?"

He says, "I wish you looked different than you do."

Again, broken heart. Aren't little boys supposed to think that their mothers are the most beautiful things on earth. Just days ago, this boy was planning on marrying me when he grew up, and now.... he wishes looked like someone else. Sigh. I say to my charming little Matai "Oh yeah, buddy. How should I look." I have no idea what I am expecting, but his response could not have been further than what I ever could have imagined.

After thinking for a few seconds he responds "One long spike of hair coming out of the top of your head! You should do your hair like that!"

RELIEF! He does love me. He just wants me to have awesome hair. For this, and many other things, I love him.