Brooklyn follow up

Howdy all!

I apologize for the 2 week delay on this update it has been a whirlwind. Lots of you are friends with me on facebook so you got the great news that Brooklyn's EEG from 2 weeks ago came back clear and she does not have infantile spasms! Woo hoo! We received the great news in Eugene at like 5 pm on Tuesday the 3rd and were tentatively scheduled to leave Wednesday morning (the 4th) for an 11 day trip to Oklahoma and Texas to visit our family, so after receiving the good news we spent the hour drive home from the neurologist calling family and making a list of the million things we needed to do to get ready for this trip we were all but sure we wouldn't be going on. Oh- and did I mention our landlord (and the builder of our home) listed our house for sale about 2 months ago, so we couldn't just leave the house a mess in case there was a showing while we were gone so we also had to leave the house nice and clean?

We had an incredible visit home and I'll blog about that and post B's 6 month post later this week, today's post is to fill you in on B. As I mentioned earlier the neurologist let us know that the EEG was normal and after examining her was really confident to tell us that he didn't think her spasms were neurological in nature. He then proceeded to tell us about a few possible conditions that he thought it might be that sometimes get mistaken for IS. Most of which can be treated easily or the child grows out of. The first one he talked about and suggested B might have is called Sandifer syndrome. It happens in a small percentage (I believe less than 1%) of infants with reflux. Basically the little spasms are the infant's physical reaction to the reflux and is remedied by reflux medicine. She has always spit up a little a few times a day but was never fussy during feedings or when we put her down so we were skeptical of his suggestion as she hadn't shown signs of reflux. We figured why not try the reflux meds since they are pretty harmless and if it works great- if it doesn't then we've at least ruled out another cause. The other thing we thought may have something to do with it is that I had started giving her rice cereal once a day when she turned 5 months. The spasms started 2 weeks after that. So that may have aggravated the reflux or possibly she may have a sensitivity to rice cereal.

We started her on the reflux medicine just over a week ago and saw an improvement in the spasms (like from 15-20 a day to 5-7 per day) so about 5 days ago I stopped the rice cereal too and I've only seen one spasm in the past 3 days. We go to her ped tomorrow morning for her 6 month visit and to talk about Brooklyn's progress but so far it appears that it's either Sandifers or a rice allergy. 

Daniel and I have learned several things from this wild adventure. First, we both know that we want to get involved with IS somehow. We are fortunate to have a Dr. that was proactive and had Brooklyn tested, there are many families who get sent home several times before their Dr. sends them to be tested and with IS every day that the infant goes undiagnosed is a day that can do irreversible damage to the child. We couldn't help but think on the way home while we got some relieving results there were families somewhere else that day that were probably receiving some devastating results and we felt like it'd be wrong to know all about this condition that we'd never previously heard of, take our happy news and go on with our lives. Whether it's giving financially to help with IS research, getting involved with an IS organization to offer our time, helping raise awareness to the condition or all of the above- we both want to do something.

I also think I speak for the both of us when I say that our faith grew tremendously during that 5 days of uncertainty. We could both feel an overwhelming feeling of being blanketed in prayer, like nothing I've ever experienced in my entire life. After the first doctors appt. we had sent a facebook message to some friends and family and I posted it on my blog a few days later and were met with a complete outpouring of prayers and kind words for Brooklyn. Hundreds of people lifting our daughter up in prayer- friends, family, church members, acquaintances...I later learned people we don't even know were praying for a little girl they had never met. Friends and family had their churches and small groups praying for Brooklyn. I firmly believe that Brooklyn, Daniel and myself were touched - I get emotional just typing about it. It was a huge reminder to me that when we go to the Lord in prayer there is a tremendous amount of power in that. I hate to admit it- but many times when I pray for something or someone there's that little Doubtful Debbie in the back of my head thinking that maybe my little prayer won't do much. Boy is that Doubtful Debbie so very wrong and has been forever changed to a Super Sure Shirley when it comes to the power of prayer.

So that's where we're at and we couldn't be more grateful to each of you who have prayed for Brooklyn. Please let us know how Daniel and I can pray for you. Leave it in the comments, facebook us, call us, text us, e-mail us, morse code us.... we'd love to pray for you! 

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.