The appointment went so great today! This doctor was one of the best I have ever met! She was so easy to talk to and spent over an hour with us! She was very sweet to Sadie and gave us some helpful tips for our daytime struggles. As for the night, she was in agreement with the neurologist to have the MRI done as well as the EEG sleep test. She was not sure what was going on with Sadie during the nights but felt like the MRI and EEG would help determine if we are facing a medical issue or night terrors. I was relieved that she also saw no glaring issues with Sadie besides her developmental delays. She reassured us that these delays were most likely the source for her behavioral issues. I am off to buy the book she recommended and get to reading!
MCG also called to schedule the EEG in September and I was dumbfounded when they told me it would last for three nights! We are to check in on a Friday at 10 a.m. and spend three nights with Sadie hooked up to electrodes to hopefully catch one of her episodes. She reassured me that we wouldn't have to stay the whole time if they got what they needed...umm what, I was still stumbling over my words at the mere thought of Sadie being attached to electrodes for three full days and spending the night in a tiny room! She also assured me that there was room for two...uh thanks! So you can already start praying that Sadie will "perform" her episode on night one! Oh, and that the insurance will cover all these lovely test.
Noah is doing great! They did not get home until 1:15 a.m. this morning! Joe said he was super brave and was a champ! This marks his second battle with stitches/staples in less than a year! I always think of my friend Lauren and how she was convinced that Noah had the disease where you feel no pain (not the case last night!) But, I'll never forget how convinced she was that I needed to have him checked out! She even gave him a shirt that read, "I do all my own stunts!" That's our Noah! Got to love that boy!
As always we are beyond grateful for all your prayers, calls, text, emails, dinner and cookies! We praise the Lord for you!
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About Me
- Susie
- The Lord took me overseas after college where I happened to meet my future husband! Joe and I were married in May 2003. A little over two years later we welcomed our first child, Noah. 20 months later, Madeline arrived...21 months after that Sadie made us a family of five! Sadie was dianosed with Epilepsy in September 2011. For the past 18 months we have searched for the answer that is causing her significant developmental delays. We were told in September 2012 that she has a rare form of epilepsy called Atypical Rolandic Epilepsy that has been untreatable with medicine. We have found ourselves in the role of special needs parents to our precious baby girl. We were unprepared for this road. It has been a hard one, but one that we feel God has given us. On the good days, it feels like a privilege. On the bad days, we choose by faith to believe that the Lord is good and in control.
Big Brother Noah
Big Sister Maddie
Baby Sister Sadie
Some of Sadie's Journey
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6 comments:
been thinking and praying so much for y'all! even woke up in the middle of the night thinking about little Sadie and prayed for her..and y'all. praise the Lord for some good news and hope the tests go well!
So thankful for a good appointment today and for brave Noah! God is holding sweet Sadie In the palm of His hand! Will definitely pray for quick tests!
praying for you all!!! I definitely can't imagine what you are going through and can relate a little with our babes being the EXACT same age. All this stuff you are dealing with on top of the terrible two's...believe me, Isaac is TERRIBLE at time (ha)...i know is hard. i'm so thankful to hear it is nothing big, as are you i'm sure. I'll be praying for sweet Sadie during all her testing!!!
Dear Susie, So glad for a good report. What a great adventure that will be for the EEG. Do you have to stay during the day as well? Wish I was closer by to be a help to you.
Love you all
Susanne
Suz, I'm so glad the dr apt went so well. i hope the book helps too. September is much better than April. Thankfully its not as long of a wait. Praying for the insurance.
So glad to hear the good news! I wish I could scoop you all up and squeeze you ! We miss you so much and pray for continued strength and peace...this too shall pass. Give those babies a big sloppy kiss from aunt lala! We hope to see you guys soon!!!!! Love you!
Lauren
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