Showing posts from April, 2014

What a day

Today was finally the day that the straw broke the camels back.  I have been watching Willow all month, and with Jon taking note of her 'symptoms' or her little quirks that make the day slightly off, and today I finally took that all and started the calls to the doctors.  What was that last straw you may wonder?  A nap at 9 am - you see Willow is trying hard to cut out naps, and really if I can get her to settle she will take one at 3 pm (and yes she still needs them, her temper stinks profusely if she doesn't get one), but today falling asleep at 9 am after being awake for only 2 hours was enough for me to say time to make the phone calls.

So I started with her opthalmologist, Dr. Geddie; mainly because the lazy eye has gotten significantly worse over the month, and I know that they can look at the optic nerve and see if there is pressure behind the eyes so I felt that was a good place to start.  I have to say that today I was very impressed with how quickly they reacted…

Prayers and well wishes

Willow had a tiny incident yesterday, but seems to be doing well today.  She took a couple little falls yesterday that honestly seemed insignificant at the time.  But not more than an hour after these two slips, she had 3 absence seizures.  So, I kept her home from school to keep an eye on her.  After lunch she took a bath, walked to my room and then laid down on my bed so I could help dress her. Only she then seems to be looking past me, only with a blank look and says, 'mommy I no see you'... she said that twice.  :(

So, I definitely was on high alert with her, but she seems great today.  Which is good. But she has also experienced a lot of crossing of the eyes.  So all of this kind of tells us it is possible there is an increase in pressure in her head.  I am watching her, though I am going to send her to school today as she seems to be doing well.

But she also has a small procedure set for tomorrow morning.  She will be getting one of her tubes removed as it has not fall…

Weather Changes

I may have mentioned this in the past, but the Michigan weather changes really suck for Willow (sorry I just don't have a better word for it).  I am on a few Facebook boards for people either with hydrocephalus or those who care for a person with it; and it isn't just Willow who faces these challenges when storm fronts, cold fronts, etc. come through; but many people do.  Now these people live all across the country, so I have yet to find a better suited state in which to live in (yes I did think of finding a different state to live in more than once).
Today was more than just a Monday, back to school kind of day.  Today was her being VERY quiet and reserved.  She woke up and said her normal, "it's me Willow", only it didn't hold its normal volume of excitement.  We went into Palmer Elem. to visit with the secretary there and return a book to the principal, and again she was happy to be there and did ask to stay 'a bit longer', but not with the level…

Restart to Willow's Wishes

Willow has truly enjoyed this week, the wonderful vacation for our family and from school for her.  She has slept in since returning from our travels.  She is definitely over tired most of these days as she won't take a nap during the day with everyone home.  Though on days like today, I really can't blame her, its beautiful outside!

So for my followers, or those of you who just randomly read her blog, you will see some changes up coming. I changed the design (something I do almost with every season, or when I get bored); but more so this is going to go back to Willow's Wishes.  Meaning a story of her, about her, for her.  This is Willow's journey with hydrocephalus and I will take out the family stuff or other news and now put that into my personal blog, Daisypoet... The words behind the life.  What you will see here is news about the Michigan Pediatric Hydrocephalus Foundation, news about what Willow is now accomplishing, or what she may still be struggling with (th…

The Rat Race....

The Rat Race - otherwise known as life - has kind of taken over this household once again, and I have allowed quite a bit of time to slip by without much updating to Willow's journey.  For that, I am sorry; but as I have said in the past when she is doing well, its hard to really sit down and share because it just seems so basic all of the things she is doing.  But then I have been doing a lot of thinking about just that as well, and even though she is doing so well, I want people to know her story. I want people to remember that she has hydrocephalus, and that every day with her is a blessing that we CANNOT and should not take for granted.

So, today starts Spring Break for the West children, and that includes Willow now that she has been in Head Start since January.  Speaking of head start, she has a bitter sweet relationship with that idea.  There are good days, that she is super excited to get ready for school, and run out to meet Mr. Merano (her bus driver), and there are othe…