Willow's Wishes

Today is one of those days where I am reminded how grateful I am for all that Willow can do.  We were given a wrong diagnosis after her first MRI when she was 2 months old, and well to keep the story short, were told not to expect much as she didn't have a brain. Now, my little girl is 4 years old, talking up a storm, walking, running, finally figured out how to jump with 2 feet off the ground, and boy is she learning to be independent!!  I love that she is so great at figuring out how to solve her problems, and that she loves to do things on her own. Now as a mother, there is a flip side to that and yes there are days where I wish she would not do things on her own. LOL  The thing today that just made me smile is she came home from school and I gave her a pizza lunchable to make, and all on her own, she opens the package, cuts (with safety scissors) the sauce package, pours it on her crust, gets a spoon to spread it, eats all but 2 pepperoni's, so each pizza got 1! Then...

Winter is definitely here in Michigan, and that means a couple of things. Colder temps, snow, and grumpy kids!  Willow loves to go outside and play in the snow, but her older siblings are just a little over it all. We did not raise a bunch of winter loving kids here! But she has gone outside none the less and enjoyed a snowball fight or two with her brother, and tried to build on a hill to go sledding down.  It was fun!  But then there is the flip side, where everyone gets sick and they are grumpy! Willow fell ill on Christmas day that led us to go into the ER, turns out it was flu. Well, they gave her tamiflu and really within a week she was doing well again.  Fast forward to January 17th and we are back in the ER with her as she once again spiked a high fever!  MRI was done and all is well with her shunt (thank goodness), and so it seems it was round two of the flu, with a different strand.  Yes, I have been told it is totally possible (yet rare) to hav...

When asked how our trip to DC had gone, you will get a couple of different perspectives.  One is mine, another would be Jon's, you would then get the kids perspective, and of course you are sure to ask Willow - "how was DC"? Here is her point of view: "Good"  You see it's quite simple to a three year old, it was good!  She got to see friends she hasn't seen in a while, as well as make some new ones.   PHF 2014 hydro warriors She got to go sight seeing, and her favorite? "The big, pointy building" (aka the Washington Monument) She was able to explore the National Art Museum and saw some pretty cool things there, including a bridal party getting pictures taken in the atrium/cafe area!  She thought she was watching a real live princess that day! Willow wanted to go to a park while there, but fitting in a visit to a playground/park was a bit tougher to find. So we im...

We are closing in on our trip to DC!  It is so crazy to realize that it is just under 2 weeks away!  Willow is quite excited to go 'talk to other people with shunts like me' (she says this any time she talks about us going to DC - LOL).  The other kids are also excited as well. Each year we try to raise funds to help cover this cost of our travel expenses, and well this year we didn't get a great start to that idea. But the kids have pitched in this year with their own kool-aide stand as well as loom bracelets and candies they have made.  It has been great fun to see them work so hard to help raise money. We had a bit of a scare with Willow two weeks ago. We thought she had a seizure, but the EEG still shows 'normal results' and without catching it on video the neurologist can't confirm seizure activity.  They are calling it some sort of sleeping issue (forgot the name of it), but I was told to think restless leg syndrome but slightly worse as it affects the w...

Last week Tuesday was a great day. We went to a friends house and swam in her pool much of the afternoon, Willow had a blast!  I knew the kids would all be exhausted too with so much pool time that day, but there was one thing I was not counting on.  Willow had a seizure during her nap.  It happened right at 5 pm when all the offices are closing (of course) and so the first call was to the ped's office. Their on call told me all seizure activity should result in a call to 911... Um, yeah thanks for that advice but no that is not what I have been told before. So I put a call to neurology... yeah after 2 hours, (and a call back to them) I finally hear back from the on call who says lets get an EEG done, and an appt. with the nurse practitioner (NP) right away. So, tomorrow will be here EEG, and next week we will go over the results with the NP. The on call neurologist said that if it happens again that night to take her straight to ER, but we were lucky and it didn't. ...

So Willow had an eye appointment yesterday to check on how the glasses she is now wearing full time are helping her.  Well, the prescription is good for her, but her lazy eye is actually getting worse. We were told yesterday she has Amblyopia.  Now, that really is just a big word to mean 'lazy eye'; so not much new to that I suppose.  Yet the fact that it is not getting better leads us down a different path as well. If you check out this site here:   http://www.aapos.org/terms/conditions/21 It will help you understand a little more.   Basically we thought she had a lazy eye due to something called Strabismic amblyopia, which is " when the eyes are not straight. One eye may turn in, out, up or down. When this happens, the brain “turns off” the eye that is not straight and the vision subsequently drops in that eye."  So we just thought that her muscles were not working properly in that eye and that glasses or patching as we have done in the past would fix ...

  Fun at Aberdeen Splash pad  Touch a truck at the Plainfield Library. She is sitting in a fire truck, the only vehicle she wanted to go in :) Fun at Briggs Pool  First pool party Girls at the Fulton Street Arts Market :)  Hanging with a friend :)