No better time to blog than in the a hospital waiting room!
Not sure how much detail I went into last time with Darcy's seizures, but we thought we had them under control due to medications until they showed their ugly face again last week. (grrrr)
They upped her meds, which seems to work until this week and then they started again. These seizures were definitely different from her last. Seemed like they were a little more intense, and I think as she is getting older she may unfortunately understand it more. (sadly enough)
Anyway, I contacted our amazing Neuro Assistant, Amanda, and she got Darcy in to get an MRI. Which brings the reason why we are sitting in a hospital waiting room right now.
We really just pray that this MRI will give some well needed answers to why she is having seizures and then we can stay on top of them.
I'm going to go ahead and give me Dr opinion, yeah I don't have the fancy letters after my name but I'll tell you something being in and out of appointments you begin to think you know all. (wink wink)
My opinion: Last week, St Patty's Day, they decided to dial her shunt down so that it would drain more of the fluid off her shunt and neck. Darcy has had some fluid buildup on her shunt and the tubing down her neck for some time, we blamed in on the horrible cough she had for 9 weeks!!!
So the seizures started exactly a day after the change in the shunt, therefore my thoughts are that with the less fluid in her little head gives the gray matter more room to communicate and when the gray matter communicates it then sparks up seizures. Hence my theory!
One awesome thing about coming back to the hospital, we got to see the amazing nurse (Lisa) that took such great care of our baby when she was 2 weeks old and received her shunt! Brought tears to my eyes, I'm such a softy anymore.
We were also introduced to another strong couple that is going thru the exact same thing we went thru 4 1/2 months ago. I hope we were able to give them some sort of comfort but I can totally relate to how stressful it is to have a baby going thru this and they didn't have the warning we did and haven't been able to process it for as long as did. I hope they find the comfort of our little babies journey and can feel comfortable to reach out to us if they need too. I wish we would have known someone else that went thru this when we started but we have had a great support group with her doctors and of course our friends and family!
I'll keep you all posted how the results turn out and then maybe they will be able to help Little D and this too will just be another story!
P.s. Darcy has been thru assessments for First Step and we have a meeting next week to get a schedule down for her therapy. She has already started to show signs of progressing so I am eager to get her therapy started and see how grows with their help.
No comments:
Post a Comment