Wednesday, February 15, 2017

February already?!

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 as well. So, during this meeting Willow was able to give him her gifts for Christmas and I wrote a letter of thanks for all he had done for Willow and how much of an impact he has made, and I thanked him for saving her. Her next appointment in March will be with her new neurosurgeon Dr. Madura, with an MRI first to see if her ventricles are still at that enlarged but stable (so now her new 'normal') state. We are not expecting any surprises, or news at that appointment. More so a chance to meet with the new doctor when she is doing well, so he can see her and start to get to know her. I would expect that he says the next appointment would be a year or two out from then unless of course something brings us in.

The new year so far is going well also. The school year has moved along with no issues for her. She has an occasional headache, but marches right through it. She has recently celebrated the 100th day at school, and Valentine's Day yesterday (see pictures below). Her conference is next week, so I will know how things are going academically for her then. It has been quiet with her thus far and that is nice. 

Now here are the pics from the last few months :)
A trip to the Public Museum

Christmas Outfit

100 day cupcakes for a treat :) 

Cup stacking activity at 100 day

Valentines Collection Box - Shopkins style :) 

Her first Muffins with Mom event :) 

Ride the Rapid trip 

Crazy warm day in January - called for shorts and tee! It was only in the 50's but she loved it!

Snow day from school = fun day in snow! 

Monday, November 28, 2016

Start of Kindergarten

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 pretty cool new glasses though, with bifocals, which she isn't so keen about; but is getting used to them.
Halloween falls in October and we love to go Trick or Treating as a family. Willow's 16 year old brother still dresses up and hangs out with us to trick or treat as well, which as a mom, I think that is pretty cool! It was unseasonably warm this year for us; so much so that our local ice cream shop opened up its doors to the public for one last hurah! We made sure to stop there as well.
November has still brought in some warmer than usual weather for our state, though not shorts and shirt, but warmer than average. With that comes the up and downs of headaches - generally speaking. I can say I know I have suffered some pressure/sinus headaches moreso than normal, which would lead me to believe she is too. Only her pain tolerance is different than ours. Anyway, I digress.
So this month has been interesting as we have seen something come up that we aren't sure what to think of. In kindergarten they work on writing, and she is indeed doing that. But we have noticed her 8's and her 3's are not looking quite right. They seem to lie down on the job so to speak. I mentioned it to her teacher who said she has been doing it for a week or two and she too had wanted to mention it to me. So, I called the docs to see what they thought, and that will bring us to Wednesday. November 30, 2016 - a day of tests.
Please keep Willow in your prayers, she will have an MRI, then an eye exam to check on her optic nerve again, followed by a visit to her neurosurgeon to place the shunt back on the proper setting, and go over results of earlier MRI.  We will be quite busy that morning. None of those appointments alone (or really put together) are scary, invasive, etc. But the outcome, the unknown of what may be found, or where this may lead is unnerving. I am looking at my sweet little Willow and I see a great, super happy, smiley, ray of sunshine. I know that there could be a surgery where all of that could change. It is just how it goes with hydrocephalus. So many unknowns.
As adults we don't do well with unknown's. We want to be in control of so much so we can feel safe. The funny thing is, Willow is teaching me so much about life! Did you know that she isn't worried a bit about her trip to the doctor on Wednesday?! Well, she is worried about maybe getting a poke (a shot, an iv, anything needle related), but the MRI, the eye exam, the possibility that her shunt isn't working right and will need surgery again?! Doesn't bother her a bit! So I am trying to walk a bit in her shoes, and not worry, and instead see the sunshine as she does. :)
So, I will leave you all with this - she is happy, healthy, loving kindergarten, her school, her teacher, her friends, everything life has to offer! I want you to do the same. If even only for one day. :)
If you are close to us, and know Willow well, you will know that is all she wants for all of us :) Not to worry about Wednesday, (though I still will). But to laugh at silliness and play in the cold, November rain. :)

Someone wanted curly hair! 

This is how you dress in November? Go back and change!! 
Did I mention Willow did a 5k on Thanksgiving?! 
This was after she did the 5k! 
Our little monkey :) 
Oh yeah and she met her favorite radio dj's recently too! 
Halloween 2016 (left to right) Mummy, Monster, Pokemon Trainer, Gryffindor student, Ravenclaw student
Dear tooth fairy.... 

She loves a beautiful sunrise :)

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 planned, some chill time at the museum, pool days, water fun at home, so we can definitely stay busy. She knows all about this blog, and loves to share it with others she meets so they can keep in touch with her. She also likes to share her life with others.

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; she will not need an IEP as I had figured she would.  This girl has proven that while doctors are great at science based knowledge, and their job - they know not what can actually be done when one has faith.  

Saturday, October 1, 2016

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 the ultrasound we got a call from our doctor after hours, saying she never would have expected this.  Willow has hydrocephalus. We had no idea what this meant, and while she tried to tell me what she could; she also said we need to do more testing (in the form of an MRI) and will be seeing specialists from there. They will be able to tell us more. So within a few weeks we were getting the MRI down and then a call from the neurosurgeon that said she has no brain! NO BRAIN!
Let that sink in, a phone call saying she had no brain.

That still haunts me to this day, even though so many things have changed since then. They said there was no need for a shunt, and nothing they could do. We just had to give it time.
She continued to thrive in her life, and at her four month check up her head circumference had grown 5 cm. and our doctor felt that was too much for someone who didn't have a brain. So, off to ER to see what we can figure out. 8 hours later and many tests and scans and talks with various doctors, a neurosurgeon walks in and says we are doing brain surgery and placing a shunt. Her first of many.

This next part of her story is a blur of sorts and yet quite long. The short of it is that between April 26, 2011 (her first shunt placed) and April 5, 2012 (here) she had 12 brain surgeries all shunt related. For various reasons, infection, malfunction, and oh guess what guys? She is allergic to the shunt as well, that caused 2 replacements alone. This girl who was not diagnosed while I was pregnant with her (so we have no 'reason' for her to have this), who was told didn't have a brain, but in fact does have one, is also allergic to the machine that is supposed to keep her alive. This is quite rare.

So, she would then go through a bunch of therapies for the next year or so. Physical therapy so she could walk, (which she did on her own after a year old), occupational therapy which she didn't need for long, speech therapy which she completed after preschool last year. Thankfully all of her therapists have been great people who have truly cared for Willow greatly that I believe it helped her soar in all areas. All of this from a girl with no brain right?!

School started for her around age 3 as she entered Head Start. She didn't quite take this well, so I kept her home again for a bit, and then at 3 1/2 sent her back to Head Start and she loved it! She went to preschool at 4 1/2 and flourished there, and this year is doing great in kindergarten. She has many friends, taking part in Cross Country, loving school, gymnastics (which she is learning on her own), playing with her friends and so much more. This girl has come so far in her short life. She also had 2 other brain surgeries this past March, and so we have restarted our clock for being surgery free.

All of this is a huge miracle for her and for us as her parents. There are stories of children with hydrocephalus not as great as Willow's. Many have other health conditions that go along with it, or are secondary to the hydrocephalus or the hydrocephalus is secondary to whatever else they have.
I became the Michigan state chapter director of the Pediatric Hydrocephalus Foundation in June of 2011. After all of Willow's hospital stays, and I love doing this. I do my best to raise awareness of the condition and to raise funds for a cure. There are many ways to raise funds for a cure and I try to do different fun things and events to help get our name out there. This condition can make the family feel very alone while they 'live' in a hospital for great lengths of time. So I try to let them know that there are others out there fighting with them.

I hope this quick little synopsis of Willow has helped her new friends have a better understanding of her and her condition. I know I didn't talk about her shunt and how that works and all, but that is a story for another day!

Monday, July 18, 2016

Why we walk

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 all know how reliable machines are).  There hasn't been much of a change in the way shunts work since they were invented 50 years ago. With all the advancement in medical fields, this one falls way behind.
So, if you could please - either find it in your heart to join our family and walk with us on Saturday, August 13th, or if you are busy make a donation in honor of our sweet Willow. We would appreciate it greatly.

You can either sign up or donate with this one link:

Thank you so much

Thursday, March 10, 2016

What fun

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's work projects, Willow's poor body and just everybody is exhausted. We are very thankful for the meals being delivered to our house for the kids and Jon. Willow and I love when visitors show up and surprise us :) Many people have asked how they can help, and it was during a talk with my friend that as she was asking questions to better understand why shunts can't do certain things, I said, well, its why I hold our walk. This is why I raise awareness, and money for research... So, if you would like to help in some way and don't know how... Please make a donation to our walk this year and help us raise funds for better shunts, more research is definitely needed. Just click here

While you are there, sign up to walk with us :) It will be great to see her supporters there :)
This was her just before our most recent admission