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Summer 2018

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We are well into summer here at our home. It is a slightly different dynamic than in years past, but Willow is doing great!

Willow finished first grade and will be moving on up to second in the fall. She was in girl scouts this year and really enjoyed that. She did really, really well in school. I am going to make a slight brag on her academic success which I try not to do (often), but then I go back to when we were given her diagnosis (which we now know was wrong), but I go back to that first day sometimes just to put things into perspective.

We were told Willow had no brain. Nothing. Just a brain stem keeping her body functioning. The doctor said there was nothing he could do, and to enjoy the time we have with her. A few months later, another doctor looked at a second MRI and realized there was something off with the first diagnosis and we placed a shunt. Guess what?!  She had a brain!! But we still had no idea on what type of damage it had suffered.

Well, in Michigan, as I am sure…

2018 is here...

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It is hard to believe, as it seems like yesterday we were holding a newborn! Now that little one is 7! We have celebrated a lot as fall has changed into winter. and we are now in the long grips of it.
She is having a great time in first grade, enjoying time with her friends, her amazing teacher and expressing herself in big ways.


In the fall, she went on a field trip to a pumpkin patch on fell asleep on the bus ride home, then had a seizure while sleeping. We watched her for a bit, and in November were given the all clear with her. You see, there was some big news we were waiting to get word on, and so many of you were praying for GREAT things to happen. Sorry for the delay, if you don't follow me on Facebook, but GREAT THINGS did indeed happen. Willow's spot inside her brain stem is completely gone! The doctor of course has no idea how that can happen, an anomaly if you will. But those of us who poured our heart, souls and tears into God, the Universe, the Higher Power, kno…

National Hydrocephalus Awareness Month

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I was going to do an August recap for you all, maybe even an interview from Willow about how DC went and her first week back at school; but life happens sometimes. So I was not able to get those things done. Instead, I sit here, on the eve before National Hydrocephalus Awareness Month penning a blog entry to do this first day, of a very important month, justice.

I have been trying to think of how I want to share information this month, via blog, Facebook, Instagram. Ultimately, I am sure I will share some things on all three. Please know that this month was a month that 7 years ago I knew nothing about. So if you don't know a lot about what hydrocephalus is, that is okay. Stick around and learn something! If you have your own journey/story with it, please feel free to PM me, or send email, or comments with your stories. I would love to listen. IF for some reason, you think you know a lot, have heard it all over the years you have walked along with us, then please feel free to skip…

Summer Fun

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As always, when things in our life are going well, I do not update as often. I suppose that is a good thing, we are living and enjoying our life, yet for those who may wonder how is she doing, it isn't so great.  Let's just go on the assumption from here on out, if you don't hear anything about Willow's journey or hospital trips for a while - she is doing GREAT! We are busy living life as best we can. :)

Willow finished kindergarten with flying colors! It is truly amazing when we are being told by teachers and other staff members how wonderful she is, how kind she is, and then how smart she is. I don't really like to brag about how bright a kid is, because well; we all have our gifts and shortfalls, and while raising five kids I have learned to not talk about that too much (though all of my kiddos really are great, smart kiddos)... But for Willow, to be told she is smart and reading above grade level, and really good in math, is AMAZING! To remind you why, when we…

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 …