I've mentioned in recent posts about her shunt and Hydrocephalus, well now that she is starting to get older and closer to hitting milestones with every month it seems more things are starting to set her back.
First, let's go back to the ER visit. I went to the ER with her b/c she was "what I thought" choking and not breathing. Well when we got to the ER and when she finally did what I had initial brought her in for the nurse had showed me that she was breathing and that she was more than likely just choking or trying to swallow her phlegm since she was so congested. WELL... that is when it all started!
Darcy has been sick, with a horrible cough and congestion for now 8 weeks and last week this horrible virus decided it wanted to throw in a fever to just top things off. So, she had a fever for three days, and after going to the Doctor there was still nothing they could do. "Let it run it's course.". I'm so tired of hearing that, this poor baby hasn't felt well in two months how am I as a Mom supposed to sit back and continue to watch and listen to my unhealthy baby and in hopes let it run it's course. So hard to do!!
Ok, so now comes the "episodes" that she had when I went to the ER with her. They were back and it finally dawned on me that they could be seizures! I only thought this b/c Ruby had febrile seizures when she was 6mo to a year old, and that is when her fever would spike so high and so quickly that her little head couldn't control them and would put her into a seizure. So I figured out that it was indeed a seizure that Darcy was having and that it had to be caused by fevers b/c that seemed to be when she started having them... well I'm guessing having the seizures with the fever was coincidental b/c her fever went away but the seizures did NOT! I made the Doctor aware of what I thought was going on so he ordered an EEG so we could be certain exactly what was causing them... and apparently when the word SHUNT is involved everyone is on high alert which has worked out for our benefit b/c it seems to push up ahead of the line (not sure it is all that good of a thing but we will take anything we can get.)
Darcy had her EEG this morning, and of course she didn't have a seizure at all during but once they took the monitors off she had one... it's a good thing we videoed it this weekend so we could show the Doctors! We are also very lucky that we have an awesome Neuro PA and she helped get her video to the Ped Neuro and she also got us into to see him the same day! Plus she has been very helpful, understanding, thoughtful and positive, and did I mention I texted her on her vacation and she helped me out and didn't even mention she was on vacation! Shout out to Amanda Vance...LOVE HER!
We met with the Ped Neuro this afternoon and though all his medical terms we learned that indeed she is having seizures and that it is due to her brain abnormalities. Yes, when she was born (which I'm going to say this was due to the Hydrocephalus but through all the lingo they throw out at you I could be mistaken) her brain didn't fully develop and there was more grey matter than normal (I know there is a technical term for it but just can't seem to find it). The larger amount of grey matter can cause erratic brain waves therefore cause seizures, she could outgrow these but for the time being we are going to manage them with medicine and in turn hope that without the seizures she can start to develop normally. Which unfortunately normal for Little D isn't the typical normal, but it will be her normal and we (Mommy and Daddy) will make sure that she is under the best care and will help her to be the best that she can and will be! I write this with tears in my eyes, just knowing that I cannot do anything to turn the clock back for her and take it all away. As a Mom you just want nothing but best for your baby, and it's hard not being able to see what her future holds... this planner of a Mom is in for a treat and I'm going to have to let the unknown in for this ride.
This all being said, she is the best baby!!! She only wants two things, to be fed and to sleep and that is the only time she is loud. The rest of the time she is pretty calm, which is good b/c we have our hands full with her older sister!
Trust me when I say this roller-coaster has really just begun so all the prayers and kind thoughts for our Little D will be greatly appreciated!!
Here is a picture of Darcy this morning:
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