Willow's Wishes

Well, it was confirmed that what Willow had about a week ago was indeed a seizure - there is no doubt in the mind of her neurologist; but the EEG came back clear for any seizure activity... So my question was where does that leave us? It leaves us adding a new diagnosis to her medical dictionary.     :( She has Encephalopathy, a real big fancy word for something we already knew she had - only this is a bit worse. The National Institute of Health defines it as this,   "Encephalopathy is a term for any diffuse disease of the brain that alters brain function or structure". Diffuse meaning brain loss, well we knew that Willow has quite a bit of white matter loss, but honestly she is 2 1/2 years old and aside from currently being behind in speech you wouldn't know anything was wrong. I guess I had it deep in my head that we wouldn't really see what this 'white matter loss' meant to her or for her until school started. I don't know why, but I felt for a bit...

Well over the weekend Willow had a seizure.  Not the absence seizures she has had over a year ago while in the hospital, but a leg stiffening, chest tightening type of seizure.  My mama gut told me that was what happened, but I really didn't want it to be so.  Let's be honest, no one wants to see their child go through a seizure, or not be well.  Yet we have to watch Willow on a daily basis to see 'what may happen', we have to be careful of the extra nap today (while most parents love the extra nap, lets remember for Willow it means her head hurts and she isn't doing well).  We have to watch the humidity levels to see how high they are getting so as to know whether errands can be run that day or not, or whether it is outdoor fun or only indoor fun that can be.  It is a complete overhaul of ones life and well right now it sucks. So during this seizure, I was able to come to enough you could say to remember it was wise to get it on video.  It is only t...

So I guess it is definitely odd to have two posts in one day, let alone one that is quite good ( http://donnasdayasdaisy.blogspot.com/2013/07/fourth-of-july.html ) and now this one.  I thought I would give a bit of an update on how things are going with me being at home now.... Mainly so that I can just get it off my chest and hopefully feel better, because I have to say that if I wake up tomorrow as I did today, I am going to be heading straight to Hell and real soon too. (Note: if you don't want to hear a lot of complaining/venting/de-stressing from me, then stop now and please enjoy the Fourth of July post instead).  So, I am 27 weeks pregnant and for the most part things with my pregnancy are going great actually.  There is very little to complain about when it comes to this one. My weight gain has been good (16 lbs so far), my blood pressure is great (still really low as is my normal), no issues with our little boy as of this point, no pre-term labor signs. Aside ...

Well, it was quite the laid back holiday actually.  We had no plans with friends or family, no big BBQ to attend, no beach to get to, no camping to pack for (you get the idea) - well don't get all sorry for us, it was kind of nice; in an odd sort of way.  It was nice in that we didn't have to jet off anywhere, or that we didn't have food to prep for a dish to pass, or make sure that we had all that we need for our ever growing family to go out and enjoy some time out!  But it was indeed a bit odd that we had no plans - we usually have something going on, so in that sense it was 'off'.  Anyway, it ended up being a great day! The kids played around the house, or on the computer for the morning,while I gave the morning to Jon in order to kind of catch up on some homework.  He was not notified that his government class had indeed started on Monday and when I mentioned it to him Thursday morning if he had homework in that class, he checked and wow - was a bit behin...