Monday, July 16, 2012

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! 

2 comments:

  1. Adrienne, thank you for sharing your story. I'm so glad that you got good news about your baby. And I'm very impressed with your commitment to doing more for the IS cause. Maybe there's a reason that your family was chosen to go through these scary times and you will make a difference for other families. I hope we can get to know each other better!

    ReplyDelete
  2. So glad to hear her results came back clear! Answer to prayer for sure!! She is such a cutie and I'm so glad you three are doing well!!

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