Willow's Wishes

We all have stuff on our plates, be it a health issue, job stress, family or financial stress - there is always something to fill our plates on a daily basis.  Sometimes, it is helpful to clear those plates and get a fresh start.  It is not always possible, but today I am going to clear my plate - hand it over and honestly just let go. Willow was in the hospital last week, she suffered headaches every day that even alternating Tylenol and Motrin would not touch.  So Thursday she was playing outside in the evening with her siblings and fell down and hit her head.  It of course resulted in a goose egg on the forehead.  No big deal for a child without head injury, but for Willow it was better to just take her in to ER especially since she was already suffering.  So they admitted her.  Friday morning, her neurosurgeon shows up and says the CT and shunt series look good.  :)  But  her ventricles are tiny, very tiny and that truly isn't good...

Where do I even begin to start my story of how our last week has gone?!  It has definitely been a bit crazy and yet at the same time a bit mellowing as the older three returned to school.   We spent Labor Day weekend here at home, we took it easy and just decided to enjoy the last few days, and hang out as a family.  We surprised the kids with a trip to Game Stop and allowed them to each pick a game (including Willow) as they had a great deal of buy 2 used items - get 1 free. Plus I had a coupon for the same deal that we could use, so it was great! The older kids have adjusted to being back in school quite well actually.  We have a good little routine going on in the morning where I off set their wake up times in order to make for a smooth -yell free morning.  Oh is it ever wonderful!! Hopefully things will still go smoothly when little boy West gets here anytime now.   Willow had a headache all last week, and so we had put a call in to her Neuro...

So the other day a friend had posted on a board I belong to on Facebook about this group called 'I run for Michael'.  Well, the idea behind it is that it pairs runners up with people who may not be as mobile, or able to get active as the runners.  So I signed Willow up for it.  I know she can run (and boy does she ever try!), but not every child with hydrocephalus is as lucky as Willow.  Well, we didn't have to wait very long for a match to be made for her.  Her runner's name is Tiffanie, and they got paired up tonight.  It is so awesome to know that someone who doesn't personally know Willow will follow her story, run for her, think about her and pray for her.  She now has a long distance friend, and I can't wait to help Willow learn more about her, and her about Willow :) If you are a runner, and in need of some motivation at times, or looking for a reason to run besides to run - you should check it out: https://www.facebook.com/groups/irunformich...

I can not help but feel a bit sad today... Today was to be the day we started our family travels to DC to speak with congress about hydrocephalus and ask our local reps to join the Adult and Pediatric Hydrocephalus Caucus.  So I have decided to put a focus on what can I do from home.  I have sent some emails out, and am looking into fundraisers for the fall, and looking ahead to plan a walk for next year! :) But alas, Jon went to work this morning (as we decided would be best since we aren't going anywhere) and I am home with 4 kids on what is to be a very hot and humid August day.  So despite the sadness that we all feel today in our house - we will try to find something to keep everyone entertained... LOL Despite all of this news - things in the West household are going well.  I am 34 weeks along as of today.  If I can hold on just 2 more weeks we will be good.  Contractions are still coming along quite frequently, yet not in a time-able fashion (still ...

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 ...