Fun in the sun!!

Having a great trip! Thanks for praying for Evie, she is doing great. this has been precious time to spend together (:

On the plane...

So far so good! Sunshine here we come!

HOME!

My favorite posts are always titled "home" (:

Evie had a pretty good night last night and an EEG this morning confirming that she is not having any more seizures. We gave her a higher dose of her med last night so hopefully that will do the trick.

We got the green light from three docs to go to Florida tomorrow, so BIG PRAYERS for no seizures on the plane would be appreciated. We will have oxygen and a monitor.

I will post a pic of my beautiful girl in the Sunshine State soon!!

Love you guys, thanks again for your prayers and comments.

Inpatient

Evie had three seizure/no breathing episodes this morning, another in the ER and another this afternoon. She has never had more than one in a day. They have upped her seizure meds and we are staying overnight to keep an eye on her.

Say a prayer for her (: thanks friends.

perspective...

Perspective can be such a good thing, and such a hard thing.

We are leaving for Florida this week and I was looking through some photos from last years trip. I remember calling the airline the week before we left saying something like "I need to confirm reservation number (whatever) and add a lapchild, on oxygen, with two full leg casts" The lady's response was very kind... instead of "may I ask why you are traveling???" she said "okay..... i'm going to need to put you on hold real quick" (: 30 minutes later we had it figured out.

When I first looked at these pictures of Evie on the beach my gut reaction was "Why didn't anyone tell me she looked so bad!?" I can answer that myself... because I probably would have asked them why they looked so bad and moved on (: Coping mechanism or mother's heart... I'm not really sure. God bless my family for loving us through the hard times we have gone through. We have really focused on always looking forward these past few years, but looking back is also important. I don't necessarily like it, but there is nothing more humbling than remember how far we have come.

Here is a picture of Evie at the gym a few weeks ago. The "big kids" typically measure themselves on the way out and Eve is no exception (: She's so big!!

I read through the first few months of my blog a few days ago. I just want to thank you guys for taking on our burden and loving us through a really rough time.

Love you friends.

Evie with walker

does she have any underlying medical conditions?..

Hi Friends (:

Evie was pulling at her ear and crying yesterday at dinner, so I ran her to urgent care. We walked back to the room and the nurse turned to me and said "So does she have any underlying medical conditions?" I laughed, looked again, and she wasn't kidding... So I replied, "do you want, like, all of them?" (i mean we were just treating an ear infection)... Then I realized for the FIRST time since Evie was born, we went into a health care facility and the staff didn't immediately realize she had special needs. How cool is that! I'm sure if the nurse had taken a closer look she would have noticed her leg braces and healing incision on her head, but with pants and a little hair she had no clue (: I just love these little reminders that Evie is improving every day.

Evie has a double ear infection but is competing with her cousin Henry for the highest ear pain tolerance in Nebraska. She has taken two doses of amoxicilin and one dose of tylenol and she is back in action. We also got a sleep study scheduled for next Monday (Praise God! - these usually take weeks to get scheduled) so we can monitor her apnea for an extended period of sleep and figure out the next steps. I got a full nights sleep last night so I am a fully functioning human again. All good things (:

Evie's buddy Lydia has a walker that she let us borrow, I can't wait to post a video of Evie strolling around.

Love you friends, thanks for your prayers (:

Happy New Year!!

Wow friends, I need a break from Christmas break, ha!!

We had the most wonderful Christmas Eve and Christmas day with family and friends in town. We got to spend time on both days having family over to our house, it was so fun to have a new place to share! We spent New Years Eve at the zoo for the Noon Years Eve ball drop (picture below) and had a dance party with the girls in our living room before bed (:

Evie lost her second tooth on Christmas, I'm starting to think we are going to have to go on high-alert on holidays... We spent Thanksgiving afternoon in the ER as Eve had an apnea spell, she lost a tooth on Christmas, and had another apnea spell at the zoo yesterday (NYEve). We were thinking that these apnea spells were from seizures so last month we upped her meds. Since she has had another one since the med change, we will make an appointment with her pulmonologist as soon as we can. For those of you who don't know what apnea is, basically she stops breathing and we have stimulate her to get her going again. Think purple lips and pale skin. It's scary and not fun. Hopefully we can find the source of the problem, for now we are just watching her constantly.

Blessings to you all for a wonderful 2012! The pics of our house have been a work in progress as unpacking has taken me waaaayyyyy longer than I thought.... My unpacking goal was Christmas... Maybe I'll shoot for Christmas of this year!

Love you all, please let me know how I can pray for you in this new year (: