Willow's Wishes

Willow has had both an eventful, and yet quiet month. As I talked about in the last  post , Willow started the month with seizure activity. We thought it was shunt failure, the ER doctor felt it was febrile seizure (after fast MRI showed no changes in her ventricles). We had seen the neurosurgeons office after a nuclear med study was done, and that came back clear. So, this last Thursday we set out for an EEG and a follow up with our neurologist. Well, the EEG went well, she did all that she was asked to do, all while talking away to the tech. and asking all kinds of questions. It started late, so of course, finished late. We went straight from the EEG to our follow up appointment instead of an hour break between the two so that hopefully the PA whom we were meeting with would have had time to read some sort of results/report. Instead, we got a pretty good check up with her; and honestly a lot more information than I have ever received from that office before! She explained to ...

In our house, Superbowl Sunday generally comes and goes without much fanfare. We are not sports fans by any means; but the kids and I will indeed sit down on this day and watch the game. Jonathan and I even pick teams as to who we think will win! This year though, we had another little event happen during our game. Just as the half time show was about to start, I was talking to Willow one minute; go to speak to Jonathan and then a minute later, look back at Willow who was now unresponsive, slumped over, and when her eyes would open - the eyelids would flutter and you could see her eyeballs rolling to the back of her head. What the heck?!   We have NEVER seen this happen to our little girl.  I call the oncall pediatric nurse, by the time they call me back, Willow is now responsive, awake and well. I explain what happened and we had also taken her temp (101); so nothing high at all. The nurse says that since she is awake and alert and responsive now, to just watch he...

 Okay, so we will just go through our day with some random pictures. :) We celebrated Willow's birthday today, as celebrating on the 24th can be quite difficult when you would like friends to come over as well. She is learning to blow out the candles after making a wish, but she used to tell the wish aloud. So in the second picture where she is looking off to the side, she is whispering her secret wish :)  She loved all of her gifts, and spent the afternoon playing with each one of them. We painted the apron and hat, built puzzles, played with Shopkins, PonyPop toys, and combed Princess Celestia's hair/mane. At bedtime we read the new Pete the Cat book and colored in the new Inside Out coloring book. I don't believe there was a gift untouched today. Thank you for helping us celebrate our little Willow turning 5. Though if you ask her, she will tell you she is still 4 because her birthday isn't until the 24th, so she isn't 5 y...

So this last Tuesday evening Jon and I were invited to attend a lecture in Detroit about the Hydrocephalus Clinical Research Network, and current research being done. Long story short, it was a GREAT event that I feel truly blessed to have been able to attend. But what was funny about all of this, is that I was explaining the event to my brother, and told him that while speaking to a neurosurgeon there, he seemed to recognize Willow's name.  So, I mentioned her blog, the PHF, and he says that he thinks that must be it. Yet Willow then perks up in the back seat and says, 'Wait! Mom, you have a blog on me?' Then she goes on to ask what is a blog, is it like the tv show Dog with a blog? And what is it all about? I laughed a bit, and explained that her blog a story of her life. Her journey with hydrocephalus, which means I will talk about her surgeries, I tell people about all the good things she can do. How even though she has a shunt, she can do all kinds of amazing things ...

This blog is so hard to keep current when things are going well with Willow.  She has exceeded expectations that were either set for her or implied.  She is surgery free now since April 2012, and while we still have some days that leave her dad and I wondering - she is actually thriving! So, what do you share about a child that is considered Special Needs, or Medically Fragile, or just one who has a story to share but life seems 'normal', 'quiet', dare one say - 'ordinary'? Well, Willow is a star. Her personality lights up a room, her smile and her eyes just light up when she is happy, or has an idea, or wants to share something with you.  She is just a bubble of spunk, and she is doing GREAT!  As I said, surgery free now 3 years and 7 months, walking, running, jumping, flipping off our furniture (against my wishes), swimming, sliding, hop scotching her way through life. She has great fine motor and gross motor skills, she is speech delayed (and if you ask h...

Oh there are so many things I would love to say about the walk. It was GREAT!  It went well, we had about 130 people walk. For a first time ever walk!! It was amazing!! We had a goal of $5000 and we have about $4900 raised!! That is also amazing :)  I am so proud of all my volunteers, of my family, my friends, everyone who came to help, who walked, who baked items for us, who donated, our sponsors, oh the list goes on.  I thank God for making this all possible.  It is truly amazing, how things work out in life.  That walk, that I was so scared to put on as I felt like it would not go well... I was so shown otherwise.  People do care, people do want to help, people do want to see a change happen and better treatment and one day a cure found. I just want to repeat something - my first walk, brought in about 130 walkers, and almost $5000!  Just you wait until next year! It will be even more incredible. :) Willow had a blast, the feedback I have gotten...

Willow will be 4 1/2 next month. She is still young and will always be my baby girl - but today I let her go with her friend to Skyzone.  Now this is the third outing with this friend she has taken (a walk to the park, the zoo and then today's trip).  Today I caught some flack for sending Willow to a place like Skyzone and not 'thinking this through'. First I did think it through. I told Willow I did not think it was a wise idea; but then I started to think some more. Why was it not a wise idea? It was toddler time there, so she was not going to be around bigger children who may be more aggressive. Plus she has jumped in bounce houses and trampolines at friends houses just fine. At what point do we let her just live? I thought we were doing just that; until today. Not only did I question her trip there - but so did her dad (and boy did I catch some flack at first).  That was when I realized we weren't really allowing her to be a little girl - we were still wanting her ...