Wednesday, November 21, 2012

Thankful

We have so much to be thankful this Thanksgiving. Family, friends, our home, and mostly our health, to name the big ones.

It amazes me to be able to say I am thankful for all that I have been through. I am thankful for the struggle of being able to find myself after being in a dark place. For trusting fate, and having faith.

During the time of when Sydnee was having episodes and we didn't know if the medicine would work I didn't think I was ever going to be able to return to myself. I actually questioned if I would ever be happy again (insert Grammy yelling "Crazy talk!"). The feelings I felt during that time are hard to put into words. To try and put it simply, my head and my heart felt extremely weighted...heavy.

These experiences with Sydnee have made me feel things that I don't know if I would ever have felt in my life had she not been born. The experience of such raw and strong emotions. It has been eye opening on so many levels. I feel it has made me a better person, friend, and mom.

We received the results of Sydnee's latest EEG. It was marked "improved." This is such a relief and so amazing to hear. Her EEG showed no signs of seizure like activity and no hypsarrhythmia (a pattern associated with IS). This is what we always want to see. She will continue to have EEG's about every two months for the time being. She continues to be on two seizure medications that she takes twice a day. We are told she will mostly likely need to stay on at least one seizure medication indefinitely.

The doctors continue to tell us we are not out of the woods with Sydnee's health. In this moment, right now, I am thankful to be walking through the woods, and not at a standstill. We continue to move forward.

Here are some other moments I am thankful for that happened over the past couple weeks...Happy Thanksgiving!
First fort!
"Can I hold baby sister?!"



Check out the "flair" Sam added to baby sisters play mat :)
Death grip on spidey and the balloon
So crazy cute
 

 

Monday, November 12, 2012

Baby Sisters Play List

We are a family that loves music. It's part of our daily lives. Our family dance parties are some of my favorite moments. We all sing, we all dance, and Sam usually does what he refers to as "shaking his butt-butt."

Below is the play list that will always remind me of Sydnee as a baby. Sam had his own list too (lots of Death Cab for Cutie, Pearl Jam, and John Mayer's "Free Falling").   Songs that I just play over and over. The songs on Sydnee's list are a lot more upbeat than those on Sam's list. I used Sydnee's songs to keep us going, Sam's were used to calm us down.

Click on the links below and dance with us...

Song 1
http://youtu.be/NcbRMzH27GM

Song 2
http://youtu.be/p1iDBtcEm0w

Song 3
http://youtu.be/rGKfrgqWcv0

Song 4
http://youtu.be/UtnxsIBVm5s


If there are songs/bands you think we should look into message me or leave a comment.

Friday, November 9, 2012

Children's - Construction Love

Children's hospital isn't a place where you ever want to be, but if you HAVE to be there, you feel beyond lucky to have access to it.

Seattle Children's covers five states, Washington, Oregon, Idaho, Montana, and Alaska. Our Neurologist had to leave our room for a few minutes the first night we were in the ER to take a couple calls. She explained that she was talking with a Dr. in Montana about a child and they did not have a neurologist in the area. At that moment, I was pretty thankful to live 25 minutes from this amazing hospital.

They are building a new wing at Children's right now. They are calling the new wing "Building Hope." It will support Cancer, Critical and Emergency Care. It is impressive. I have no doubts that it will be a great comfort to children and their families.

Grammy and I made it a point to leave our hospital room at least once a day. In the halls of the hospital they have a lot of information about the new wing. Below is a story I read. It made me smile.


For many young patients at Seattle Children's Hospital, getting through each day is a challenge. But, now there's something truly special right out their windows.
Members of Ironworkers Local 86 who work on the construction site are sharing good wishes with kids by painting their names and get well messages on beams that are part of the new building’s structure. For young patients such as four-year-old Julian Blackwell, and 16-year-old Zac Greyling of Des Moines who is battling leukemia, it sends a message of hope.

It all started with Brayden, the teenage son of a friend of a member of the construction crew. When Brayden lost his battle with cancer, they painted his name on that beam.

Children staying in the hospital saw his name painted on the beam, and they began posting their own names in the windows.

Crews said the names should be visible until December when they'll be covered up by the next phase of the building. Until then, the kids whose names are on those beams are the first to tell you, they'll always be a part of that building.














Here is a picture of me with Sydnee's neuro team. All together she had over ten specialists just from the neurology department. I am beyond thankful to all of them.