Monday, July 2, 2012

Plans change

We were planning on spending almost 2 weeks visiting family and friends in OK and TX her in a few days, and in a matter of minutes on Friday afternoon- those plans were essentially blown into a million little pieces.

We had noticed over the past week or so Brooklyn has been having what we can best describe as spasms in her arms and face. At first it was once a day, I thought maybe something startled her because that's what it looks like. She'd be laying on the floor playing and for just a second her arms would tense and straighten (think cheerleaders when they put their arms down and a little away from their body during  cheer) and her mouth would pull down (basically like if you close your mouth then try to make the corners of your mouth go downward). It would literally take one second and she'd go back to playing and squealing like the happy little girl she is. Then she started doing it more frequently, maybe 10 or more times a day so we decided to take her to her pediatrician on Friday just to get it checked out. We were hoping that the Doc would say we were over-concerned and that it was what all babies do and send us on our way. We brought some video to show her in case Brooklyn didn't have any spasms at the office. Brooklyn ended up having a few there so the Dr. got to see it first hand. She then excused herself as she wanted check to get more information. She came back after what seemed like forever and told us that while she wasn't an expert in neurology she would rather check for something and be wrong than to risk sending us home with an "oh it's nothing". It was at that moment that my heart nearly stopped.
Just chillin'
Dr. Miller proceded to tell us that she was referring us to a Pediatric Neurologist to set up an EEG to test for something called Infantile Spasms. IS is essentailly a rare from of epilepsy that shows up in infants between 4 months to a year most frequently making it's appearance between 4-8 months. It's actually referred to in many places we've researched as "a rare and devastating form of epilepsy." It's devastating because the spasms often go undiagnosed or mistaken for colic/reflux or an extended Moro reflex (the "startle reflex" newborns have) and by the time Drs figure it out those little spasms (which are actually little seziures) often have done a lot of irreverseable damage both in the mental and physical development of the child. The other reason is that the meds used to treat IS can also have some harsh and lasting side affects not to mention that within the IS diagnosis there are many types- each type responding to different treatments which is oftentimes frustrating especially when time is crucial.

We were set up with an appointment to go in this morning for the test. The weekend wait from Friday until today was excruciating. We prayed and talked and questioned and prayed some more. We both broke down in church as Pastor Joe preached about God's mercies and asked if anyone needed prayer. As we raised our hands and little Brooklyn's I never felt more helpless, raw and defeated in my life. I never imagined that during prayer time at church I'd be lifting up the hand of my almost 6 month old daughter. I'd been asking myself all weekend Why her? Why us? and each time was followed immediately with the thought of Why not her? Why not us? I think now I realized that the anxiety attack and weeks of feeling nervous for no reason a few weeks ago was God's way of preparing me for a real storm and teaching me to let go of my desire to control everything as well as to begin to change my mind frame which seems to always be set on earthly time and learn to lean on Him, to constantly look to Him, and to remember to be thinking in a heavenly time frame. 

Chewing on my book while we wait to start the test.
The test this morning went smoothly other than Brooklyn hating having the probes stuck on her head, we've never heard her cry as hard as she did when the tech was putting on her probes - she was an angry little nugget. But we calmed her down and she eventually went to sleep. We thought we'd get some answers today but instead we are going back to Eugene tomorrow for an eval with her neurologist and the results of the test, which will also be when we find out if we are getting on the plane or not for our trip, which while we dearly love and miss our friends and family, is infinitely less important right now then figuring out what's going on with Brooklyn. When you have a baby you never think that part of their first six months will include adding a neurologist as one of their caregivers.

Daddy making B laugh with his "scratchy face"
Thank you all for all of your continued prayers and sweet messages for Brooklyn. We'll be sure to let everyone know how the test went and our next steps tomorrow.

6 comments:

  1. Adrienne, been praying since Saturday when AJ told me. I'm so sorry. If I can do anything, please ask! Hugs and prayers for you, Daniel, and sweet Brooklyn!

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  2. Sending lots of prayers your way dear cousin. Will especially add Brooklyn to our nightly prayers with Keith because God hears the little voices first as they are the most pure. Sending a hug from hundreds of miles away.

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  3. Sending prayers your way today. May God continue to hold little Brooklyn close to His heart.

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  4. Prays being sent to Brooklyn and to you both. Love Uncle Mark & Aunt Mary

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  5. God will never give us more than we can handle and He will always be with Brooklyn as she is pure and full of love. With all of our love we pray for your family. Cousin Tom, Em, and Tom.

    ReplyDelete

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