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March fun?

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I am generally not this far behind on updating Willow's journey with hydrocephalus when something happens. Yet, this time; I faltered. I didn't jump right in to share to her story, or the fact that she was admitted to the hospital. I posted on my personal Facebook Page, what was going on, and then updated a few key people who needed to know. But, for some reason, I struggled to get words to computer this time.

She is getting older, and as she does; I hope she will begin to take this blog over and share in her own words how her life is going and how she is feeling. But now is not that time. Yet, I still couldn't come here and write an update for those that follow her blog only. I think it all boiled down to I didn't want it to be real. I didn't want this to be the time she has her 17th brain surgery. I didn't want that freakin' shunt to fail on her. Willow on the other hand took it all so much better. She is our ultimate bottle of sunshine, our family's …

February already?!

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Willow is doing incredible!

I looked back at the last post, and realized I left you all in a place of wondering. I guess if you are on my Facebook page the answers were all given, but that wouldn't be fair to others who may not be. I am sorry. Let's go back to when she was having her MRI to see what the deal was with her writing..... It showed nothing new. LOL, oh good ol' Willow, MRI is still unchanged; vents enlarged but are stable. After a short little while, and really working at it, she has been able to get the 8's and 3's written correctly again. She came home so proud of that in late Dec. just before break. :)

We have met with her neurosurgeon after the last MRI as he is retiring this year and starting to fade out on seeing his patients. I was very adamant that we would not just be passed along to whomever, and so made a meeting to see who he thought was best to help Willow. I know he had been trying to hire someone, that he felt would be a good fit for her …

Start of Kindergarten

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Oh how Willow loves to be in school, learning, hanging out with friends, making new one's. Oh the life of a five year old kindergartener!
She started the year off with a little scare in September, an overnight stay in the hospital where we learned that her ventricles have enlarged compared to what they were when she left the hospital in March. She was admitted and stayed overnight under observations, to which showed nothing. Good ol' Willow! The following Thursday, she had another MRI which showed ventricles the same size as the previous Friday scan, so we call this, 'stable with no change' because she is still functioning well with the ventricles enlarged.
October she got her eyes checked where they also looked at her optic nerve and found it was showing signs of increased pressure. So her doctor suggested, strongly, that we move up her Dec. MRI and follow up with neurosurgeon. She was putting in orders for that, but nothing ever happened with that. She did get some …

Willow's Summer

Willow has finished preschool last week, and has enjoyed every day off so far. This girl can both crack me up and drive me up a wall within five minutes. She is set to go to the doctor tomorrow to get her cast off, and she is more than excited about that. In fact, Willow has made some big plans! They involve - water, ice, lemonade, a new blog, challenges, and videos of her! I love the enthusiasm in this one that is for sure.  I know where she is going with all of that, and I really don't think she understands all that is involved in taking on such an endeavor. I will talk to her more about it, and keep you all posted if things change on Willow's Wishes.

At this point, we have no big plans for summer either; which is both nice and boring at the same time. Willow could basically plan every day of your life if you would let her, and yet some days she feels like doing nothing at all and is no help in coming up with ideas for fun. We have some fun beach days, and park play dates pl…

Preschool has ended

Willow's last day of preschool was yesterday.  She did a great job this year and has grown up so much this past school year. Yesterday was not only the last day of preschool for her, but also the last day of receiving any services.  She has gone through occupational therapy and 'graduated' rather quickly; physical therapy took longer, but once she was walking we only needed a few more visits after that. I think she was done and 'graduated' from physical therapy around 18 months of age, which is really when we started a lot of speech therapy at home.  I will say that after YEARS of services, saying good bye to the good ones is so hard. These special people become like a second family, and you don't ever forget there names.  We have had an incredible team of people help us get Willow to where she is now.
It is so hard to wrap my head around the idea that Willow has graduated from all services and will be starting kindergarten next year with only a 504 health plan…

Another awareness month in the books

Well, September is National Hydrocephalus Awareness Month, and today is October 1st. So why am I still talking about it? I want to give a recap, a final thought that I wanted to do yesterday and instead was out of the home/office ALL DAY! There was no hope of even getting one sentence in yesterday. LOL Some days are just like that. My final thought or what was going to be my final fact is a retelling of Willow's journey with hydrocephalus. She has so many new friends now that she is older and in kindergarten that I thought it would be nice for all of her new friends to know why the PHF is so important to us, and why September we spend all month raising awareness.

Willow was born healthy. At her two month check up I asked the doctor if she could tell me why Willow tilts her head in such an odd way (you can see it here). We scheduled an ultrasound to see if there was anything serious going on, but the doctor said she doesn't think anything will come of it.  Well, the night of th…

Why we walk

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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…