It's been a good week, I have thought about blogging several times but haven't had a second to sit down!
Evie is doing well, she only gained 2oz this week, putting her at 7lb 14oz this morning, but at least she hasn't lost any weight. 'Failure to thrive' is a concern with these little ones, and her appetite is nothing close to that, so we are pleased. She has been coughing a little, but it doesn't seem like anything serious.
Treatment wise, we are still waiting for all of the little pieces to come together. Legal documents, signatures, approval, drug delivery, then we can have her baseline visit of x-rays, eye exam, etc. and get started following that. We thought we would start treatment next Monday, but it is looking more like we will start the following Monday, the 23rd. That would mean a hospital stay over Thanksgiving, but what could I be more thankful for than Evie getting the medicine she needs!? And my parents will be so thankful for the extra time off to watch Lyla! ha ha!
Speaking of thankful, I need to give a special shout out to Dr. Lutz at the Med Center & Childrens. God sent him to us at a perfect time, and without his keen eye and accurate diagnosis of Evie's condition we wouldn't have gotten her seizures under control as early as we did, and who knows what damage they might have caused. He also had her diagnosis quickly confirmed by three other specialists, one on each coast and one in St. Louis, and got the information together for her treatment so quickly. He makes me feel like Evie is his only patient (when I know he has hundreds!) and I don't even know how many countless hours he has spent getting things in line. He also has a team of people that work with him that have helped enormously also. I thank God for you Dr. Lutz!
And thanks to my mom, who has dropped everything numerous times to watch Lyla as I take Evie to her appointments, hospitalizations, etc. She is my sounding board when I need to just get it all out and she is nothing but supportive at all times. I watched her read her Bible daily growing up and I knew the importance of hiding God's word in my heart from an early age. THANKS MOM!
Lastly, for those of you who saw a crazy lady with a good looking guy and two kids at the Nebraska vs. Oklahoma game last weekend, yep, that was us! We went to the zoo last Saturday morning, and it was so nice outside we decided to go to Lincoln that night to tailgate and catch up with family. My aunt offered us extra tickets to the game, so we decided to try it out! My dad loaned me some socks since the sun was going down (which looked awesome with my flip flops) and we headed to Memorial Stadium. As I was walking up the stairs and people were staring at us hauling our two kids up to row 75 I breifly thought "have I lost my mind!?" but quickly remembered... we got free tickets to the NU vs. Oklahoma game! Nobody gives those up!
So it was both girls first Husker game... Lyla learned how to scream ridiculously loud and 'throw the bones'... something every good Husker fan knows how to do (:
I will put up a few pics.
Evie and mom - we made it to our seats!
GO BIG RED!!!
The balloons celebrating the girls first game... or the Huskers first score (:
Love you friends, hopefully I will have more good news soon.