Wednesday, December 30, 2009

More pictures

Here are a few more from my mom's house, in no particular order.

It's so cute, Shawn & Kelly (my brother and sister-in-law) have taught Grace where her organs are so Shawn would ask her to listen to her intestines and she would put it on her tummy. She would put it on her esophagus, kidneys, heart, and a few others.

Both Grace and Jack were highly entertained by the train.

Tuesday, December 29, 2009


I love Christmas. I especially love Christmas when I get all of my shopping done early and I can actually enjoy the holiday season. This year I managed to not go to the mall between Thanksgiving and Christmas. I actually got most of my shopping done early and what I didn't, I ordered on line.

But did I mention the tree fiasco? The dead tree fiasco? Yeah, the first tree we got died. Like really dead. Luckily I managed to get it replaced at no cost without a recipe, but it was a lot of work... twice.

Jack met Santa at my grandmother's soon-to-be retirement home. And the nice part was it was free and included lunch. Did you know they want $25 for a picture with Santa at the mall? That seems nuts.

And Jack was fine with Santa, he actually really liked the beard. But I think the Elf freaked him out a little bit.

Christmas morning was great. Jack slept until almost 7 and then we all got up and found what Santa left.

Then the family came over and it was the Jack and Grace show. We had brunch, mimosas and bloody Mary's, and you know - brunch food. Jack did okay with opening presents, okay for a baby that is. Grace of course had a blast. And I must admit that I'm a little overwhelmed by all the toys and where to put them.

I am super excited that Jack got swimming lessons. They last for 20 weeks and will take us right into summer.

And I got a new camera lens! I go pick it up tomorrow but it will allow me to take good inside pictures in low light. I can't wait.

This year Christmas was all about Jack, which means that this year it was all about the baby love and that's the best.

Thursday, December 17, 2009

Jack vs. Santa

A few weeks ago I took some pictures of my brother's family at the UT golf club. We got a few pictures of Jack and Grace too.

And this series cracks me up. His reaction when that toy was set next to him was priceless.

"What the *^&%* are you?

"I have a weapon, and I'm not afraid to use it."

"Maybe you're okay, here have a lick"

We met a live Santa earlier in the week. I'll try and post those pictures soon...

Sunday, December 13, 2009

A rollercoaster

The last few weeks have been hard. Really hard. The day before thanksgiving I took Jack to get his hair trimmed for our family pictures. During the process I noticed him startle and get that scared look on his face. I knew something wasn't right. A few days went by and he seemed fine so I though, prayed, that I was just paranoid. But he started jerking more.

The second time I saw it I called the neurologist's office right away. They told me to get it on video. The problem was that it happened so fast and was over so quick that it was impossible to catch. So I did the only thing I could think of, I took as much video as I could. I have hours of footage and some really cute ones too, like this:

Knowing that there was something horribly wrong and not being able to do anything about it was... I can't even come up with words to describe it.

After so much recording I finally caught some of it. On Monday the doc saw it and told us he wanted an EEG immediately. I woke Jack up from his nap, left him in his pj's, and tossed him in the car. And somewhere in there I called Jonathan and told him to meet us there.

Dr. Kane was actually traveling that day but was headed back to town. Tuesday morning I got a phone call that he wanted to see us. Long story short, the spasms are back. The spasms that there was less than a 10% chance of re-occurrence, the ones that could do permanent brain damage, are back. We caught it super early because the short EEG actually looked fine but we already know that the long EEG isn't fine meaning he's having 2 types of seizures.

To make a long story short we're treating it with a med that was only recently approved by the FDA. It's only been available here since September but it's been used everywhere else in the world to treat IS (infantile spasms) for over 10 years. Today was his 3rd day on it and he didn't have any seizures so we're hopeful that it's going to work. He'll be on it for 6 months in hopes that it controls things and gives him time to outgrow the spasms. If he doesn't outgrow them they will eventually turn into some other type of seizure as infantile spasms are specific to infants. He's doing well on the meds though, no major side effects and he's still sleeping okay, thank God.

There are 2 sides to this. On one hand for having what he has Jack is in the best possible position. His development is on track. He's a happy, curious, social little guy and you would never know that anything is wrong with him by looking at him. AND the doctor expects him to continue to stay on track.

On the other hand, we have no clue what this means long term. He could have problems with seizures his whole life. They could still do brain damage and to be completely honest we don't know if they have done any damage or not. Something is going on in his right frontal lobe. We do a repeat MRI (that's going to suck) in a few months so maybe we'll learn something from that.

This whole thing breaks my heart. I've planned for this child since I started college. I've always wanted to be a mommy and I've never done anything so fulfilling. This little guy is my world and I feel so helpless. I've done everything I can possibly think of to get this baby better and it simply hasn't worked. He's at the perfect age. I LOVE these baby days but for his baby days I'm riddled with worry. I just want him healthy, I need him healthy.