Thursday, May 15, 2014

Tuesday, May 13, 2014

Friday, May 9, 2014

The Children's Hospital and a Road Trip!

We headed in for our Extended EEG at the end of April.

The goal was to find out what is exactly happening in her brain so that we know what to do next as far as testing and treatment goes.

I cannot say enough good things about the staff. You have to be a saint to work on an inpatient unit at a children's hospital and the staff at the hospital in Denver are no exceptions.

Fortunately, the Little Miss was able to keep herself busy most of the time and our frustrations were kept to a minimum.

Unfortunately, the neurologist told us, "She's kind of a mystery." So, we're on to the next set of testing.

But, this neurologist has a plan... and compassion... and the goal of making her well (as opposed to simply medicating her, like her previous neurologist did).

And, for that, we are grateful.

The Little Miss was also grateful that her Nonni could come play with her when mommy needed to talk to the staff.

(oh, and the campus was beautiful)

Only one day into the test, and she was worn out. The neurologist decided very early into our stay that continuing the EEG would not provide any additional insights into her case, so he let us go after a blood draw that they'll use for genetic testing.

I was pretty tired, too,... and also grateful that my mom was around.

The good news is that this neurologist has a plan. He really seems to care.
The tough news is that this is not going to be a short journey. Unless God chooses to heal her (which we're still praying for), it looks like this may be a long-term battle for her.

Having a sick kid is not easy. I would give ANYTHING to be able to fix her.
But, her little spirit cannot be crushed. She is able to laugh and find joy regardless of her circumstances. She had electrodes cemented to her head and chest and cords coming off of those electrodes which were all drawn into a box which she had to carry around in a backpack that was connected to a computer and what did she do??? She put the box in her backpack, put the backpack on, put on her super hero cape, and "flew" as far out into the hallway as the cords would let her, bringing a huge smile to everyone who passed.
Trying to shampoo out the cement when we were released
That's my girl.
When we got to leave the hospital.

She is only 2 and yet her spirit and personality speak volumes.

I was sharing how overwhelmed I feel by the fact that we may have a lifelong journey ahead of us and how it's going to affect each of us differently. My husband's daughter has seizures. The Little Mister will grow up with a sister that has seizures. Ev may never be allowed to drive. Our new daughter (coming in August) will never know life apart from a sister with seizures. It will effect what we do, how we play, maybe even how we eat. But my mother-in-law gently reminded me that this is her normal. It won't be weird to her or her brother or sister that she has seizures because it is their normal.

I hope that Ev's healing from God becomes part of their story, too, but if it doesn't, I hope that John and I can together show our kids that even though tough things happen, our family's "normal" is to trust that God has allowed it for a reason and to trust Him always.

I hope they don't see me mourn what won't be true in Evie's life, but instead rejoice over what is true... she is an otherwise normal, vibrant, affectionate, sweet, rambunctious, active, beautiful girl who brings joy to people.

This journey is hard. Sometimes I get weary in the unknown. Weary from the medicines, the appointments, the tests. But, we do have much to be thankful for.

Including people in our lives that allow us to be sad for her sometimes and grateful others.

There is no perfect way to handle having a sick kid. I could let myself get really bitter (and don't let me fool you... sometimes I really struggle!). I could just be floating on the "it could be worse" cloud. But, the truth is that some days are better than others. Some days I need grace for being bitter and some days I need to simply be in awe of the fact that she is a miracle.

I don't claim to have this figured out. 

I'm sure I never will.

But I am grateful for each day with her.

Even the tough ones.

I hope that when people look at us on our good days, they see "the peace that passes all understanding" that comes from God alone. (Phil 4:7)

And, I hope that on our bad days, they are able to see that we are human and need grace.