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 (: