Our beautiful daughter, Emily, was diagnosed with infantile spasms in dec, 09. Our world has been turned upside down and this is our story...
Monday, August 22, 2011
sucess!
Sunday, June 19, 2011
Happy Father's Day
Wednesday, March 16, 2011
Marry me...again?
Sunday, November 28, 2010
more updates
We are weaning her topamax slowly and when she is off of that she will only be on phenobarb. We are defiantly seeing more of Emily since we began weaning meds. She is pretty happy but she is very opinionated if she does not like something. Especially when she is tired.
Tuesday, September 7, 2010
Not too bad
Sunday, August 22, 2010
Soooooo
Thursday, August 19, 2010
Momma's weekend
Friday, August 13, 2010
Just here
| 4 generations. |
Monday, August 2, 2010
Lately
Sunday, June 20, 2010
Monday, June 7, 2010
impressive
Is that not the sweetest picture ever!! They look so much alike here too.
Monday, April 26, 2010
yea right
This is a picture of Emily I took yesterday a couple hours after she got her first dose of chloral hydrate. As you can tell the last thing she was was sleepy! She was talking and what I call singing NOT SLEEPING!! Hey at least she was happy.Thursday, April 15, 2010
Sleep? and a little random
Monday, April 12, 2010
sched

Wednesday, March 31, 2010
Doctor, doctor, doctor!
Carnitine plays a critical role in energy production. It transports long-chain fatty acids into the mitochondria so they can be oxidized ("burned") to produce energy. It also transports the toxic compounds generated out of this cellular organelle to prevent their accumulation. Given these key functions, carnitine is concentrated in tissues like skeletal and cardiac muscle that utilize fatty acids as a dietary fuel.
Emily's was a little low so we are starting her on a supplement to bump that up.
The neurologist was very pleased about Emily's progress with talking and her alertness. She of course, in true Emily fashion, would not wake up for him. I honestly think he has seen her awake a couple times. We go back in a month and he said hopefully by then we will have an appt to go to Cleavland.
Joe called while I was parking and said his work was sending people home (involuntary) for the day and he got cut so he was going to be able to come to all the appts and help me (YAY for help but BOO for no money). Speaking of daddy he is a quick video of Emily saying dada. I think it is around 21 sec where she says it the best. She has him wrapped around her little finger. WARNING: Be prepared to turn your volume down! She gets so loud! Its funny but loud. I warned ya!
Next up was my appointment. My blood pressure has been high and the med I was on was not working any longer. So new med. Done.
While I had my appt Joe took Emily next door to her pediatrician to see if she needed reflux meds. The answer was we don't know yet. HA! The reason is that we have a very long appt with the main pediatrician next week. Because of Emily's needs we needed one with a little more experience with Emily's condition. So we are going to wait until we see her plus that gives us a little more time to see if it is truly reflux.
Beautiful week ahead so hopefully we can get out and to the park!!
Tuesday, March 16, 2010
Happy Anniversary!








Our marriage has not been a piece of cake. We have gone through several struggles. We have suffered infertilty and the loss of a pregnancy. Most recent we are struggling with our precious Emily's diagnosis of infantile spasms.
"There is no one else in the world I would rather go through this with"













