Willow's Wishes

Oh the joy of the holiday season! I am totally kicking myself in the rear for not putting up our lights and decorations this past weekend when it was 60 outside! Oh well, what fun is the holiday season if you can't put things up in the cold?!  Thanksgiving is only a week away and it seems crazy that it is already time to think about that, and of course Christmas, and birthdays!  I love this time of year as I love to bake the cookies and decorate candies and trim the tree... I just wish my family loved it as much as I do!  So, it's been a few months since my last post, and I am sure you can all agree that we have been quite busy.  Orion has been adjusting to our home quite well, he is the perfectly chill 5th child our family needed.  He does not sleep through the night (though I really didn't expect him too), but loves to sleep most of the day!  He is holding his head quite well, and does not seem to mind tummy time as much as the others did.  He has...

Willow is a big sister!  Well, she has been now for a bit over 2 weeks, but it has been a rough recovery for me so writing blogs has not been on the top of my priority list! LOL   So, Orion Joseph was born on Sept. 19th at 4:37 pm, weighing in at 8 lbs 3 oz (the second biggest baby in our family) and 20 inches long with a very tiny round head! I will spare the birth story details here, but will share that when he finally decided to make his appearance it was quick!   Willow loves him to pieces there is no doubt about that, she has called him 'my baby' since she understood there was a baby growing in mommy's belly, and it is still her baby.  Because I am usually  holding him, when she wants to give him oh so much loving attention I don't have too many pictures of the two of them, but I am hoping as he grows and I can trust to put him down around her, I will be getting a lot of them soon. :)   Other news in Willow's life is that she has a new speec...

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...