The past few months have been a whirl wind. Most days I find myself struggling to keep my head above the water. Things with Quinn have not really improved. We took him into Primary Children's last week for an extended EEG in hopes that they would "catch" a seizure so that they could pin point where the seizures are coming from.
45 minutes into the test Quinn had nothing. No seizures of any sort. Adam and I looked at each other and said, "oh no you don't!" So being the loving/caring parents that we are we tried to initiate a seizure. There are some triggers that we know of that will spark them. After three hours of monitoring, he had 4 seizures.
The Dr's have diagnosed him with Generalized Epilepsy. When I saw this in writing in reference to my little boy, I felt like the wind was knocked out of me. I have known it but it is just hard to have a formal diagnosis.
The good news is most patients grow out of this type of Epilepsy. About 70% of patients can control the seizures with medication.
The bad news is...we have not found the medication to control his seizures. We continue to pray and maintain faith that our little guy can return to normal.
On a lighter note...My good friend from high school asked me to do a guest post for a blog series called "How do you do it". She asked me to participate. It was a great experience for me to organize some of the thoughts that have been swimming through my brain.
If you have a minute... head over here to read.
7 comments:
Hi Claire!
I did read your guest post on Maren's blog. I just wanted to let you know that I was very touched by your story and I am so impressed by your faith and endurance in your son's battle. Thanks so much for sharing!
I loved that picture of Christ with the little boy. I have a special needs son so I, too, thought it was a great reminder that he is "perfect" and that I need to remember to see him that way.
I hope everything else is well with your family and I'm sure your little boy "can return to normal." :) Good luck with everything!
Maquel
Your blog left me with mixed emotions. I am happy that the Drs. are pinpointing Quinn's condition. . . but it's not a happy circumstance! You are amazing, I can tell that you are buoyed by faith and love. I hope they find the right medication soon.
Oh Claire-
I wish I could give you guys all a big hug right now. Lots of love from us to you. I have faith that God does and hear prayers, as I know that you have that same faith. I'll pray that you guys find the right meds and soon.
We just love, love your family-
I don't think I am going to be able to stop crying . I love you. I miss you. I wish with all my heart that I was able to help more than just my prayers and words. I am so blessed to have you in my life. You and your wonderful family are still in our prayers.
What a stressful whirlwind you've been enduring the past several months! You are so strong + steadfast. Way to hang in there. Hopefully now with a diagnosis things will start to get better. You are in my thoughts-- wishing you a positive outcome, and soon! xoxo
Thank you for your post Claire. I appreciate reading the "patient" side and remembering that even though I may be a struggling nurse practitioner student wishing I had all the answers-Heavenly Father really does.
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