Willow's Wishes

Our family had no idea what changes lay ahead when we got Willow's diagnosis at the age of 2 1/2 months. Or again when her first shunt was placed at 4 months of age. What about the next 12 calendar months that took us from 1 surgery to the next?  We had no idea - what we did know is that we had avoided the 'traditional stories' of being told to abort our child since she wasn't diagnosed in utero, or the 'commit her into a home'. Instead we were told she was born without a brain and there was nothing they could do. Fast forward 5 years and she is an amazing, crazy, fun loving, joy to our family that has endured 14 brain surgeries, 3 tubes in her ears surgeries, tear duct surgery and many, many, pokes for blood draws, IV's, etc. This is why we walk. We walk to share her story, we walk to raise awareness of this condition and funds for research. This life long, never ending, will always have to have another surgery because its a machine in her head (and we al...

So, it has been 8 days in the hospital. Sort of. Willow was admitted March 3-5 for enlarged ventricles, but told instead it was flu. Yes, she has the flu, but it was not the only issue. Then we were admitted again the 7th-8th with surgery to revise the shunt on the 7th. Then guess what friends? We went back in on Wednesday the 9th to have surgery again that night where an entire new shunt system was placed. :( Willow is still admitted, and under great care. This morning the PA with neurosurgery found her incision to be leaking, which caused concern for a possible surgery. Not sure what came of that today as I took a 3 hour break from the hospital and daddy stayed with Willow; but it seems we are going to do another ultrasound tomorrow and see what it shows and make decisions from there. The leaking has also stopped from the incision as far as I can tell. So over the last 8 days, only 1 1/2 of them were spent at home. It is taking its toll on my mental strength, the kids at home, Jon...

29 days of separation from being 4 years surgery free and having to start the clock all over again. Feb 7, started this whirlwind tour of what is going on with Willow. Seizures, testing, headaches, MRI's, nuclear med studies, vomiting, then the flu to boot!! Well, it ended yesterday with her 13th shunt surgery - only 29 days before we would celebrate 4 years surgery free. Yesterday, her doctor revised the shunt; so he tested the pieces during surgery and found that the valve was not working. Something Jon and I had figured since she was getting horrible headaches while laying down in her bed. It just took a lot to get her to OR, because after all; she is Willow - our little ray of sunshine, and she still smiles and cracks jokes and tells stories while in the Pre Op room. So, to you Mr. Doctor know it all/by the books; please take note: My daughter was in shunt malfunction and still smiled, did not have sun setting of the eyes, did well (and passed) the neurological testing, bu...

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 ...