Monday, September 4, 2017

Hydrocephalus Awareness Month

I spent the morning going back through Willow's blog, Willow's Wishes reading the beginning to her journey with hydrocephalus. There are things that happened that I have long since forgotten. Struggles, emotions, thoughts, feelings, questions, diagnoses all but left in her history. It is so absolutely AMAZING to see what she can do today, ALL that she can do today is attributed to God.

I have thought a lot about this month, September and what does it mean to us. It is amazing how this month has transformed me, for the last 6 years. This year, it once again takes on a deeper meaning, a deeper notion of wanting to share why this month and every day is so important to us in the West household.

Let me take you back, to Willow's two month check up: She wasn't tracking or following my face or toys when we moved them from left to right, she would still cross her eyes, even though the doctor said by this age they shouldn't be. She would not bat at toys, instead, she had a head tilt that while it seemed quirky was just off enough to catch the eyes of a few friends who said we need to look into that. The doctor agreed and ordered an ultrasound to be done just a few weeks later, those results were that she has hydrocephalus. Our pediatrician called us crying, not knowing that this would be Willow's story. A week after this, we would take Willow in for an MRI that would tell us these results: significant loss of white matter, no evidence of pressure from the fluid as the brain didn't develop properly, she was indeed born with this condition, and we should expect fairly global delays. The official diagnosis - Hydrocephalus Ex Vacuo (Hydrocephalus ex-vacuo occurs when stroke or traumatic injury cause damage to the brain. In these cases, brain tissue may actually shrink.) According to the National Institute of Health: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Hydrocephalus-Fact-Sheet) But you see, this type of hydrocephalus generally affects adults, but we didn't know that back then. We were just told, over the phone, that our daughter didn't have a brain, and the fluid was keeping her skull from caving in. 

Fast forward to her four month check up, where there are more delays noticed and the doctor notices that her head circumference had grown six centimeters. Now, according to the type of hydrocephalus she was believed to have, her head size should not grow larger. Yet it did. Our pediatrician knew something wasn't right and after conferring with others in her office called me and said take her to Children's ER, they are waiting for you. So off we went, where she would endure CT scan and vital checks and finally after many hours (about four) a neurosurgeon walking in, saying we are going to prep her for surgery as she is getting a shunt placed tonight. After a crazy whirlwind hour of getting my husband and other three children home and heading to the hospital, we all got to see her and give her a kiss before she was wheeled into OR. After the surgery,  the doctor comes out and would give what would become known as his usual speech, "no known complications', but also informed us of a tiny bleed out that 'shouldn't cause issues' we were able to see her again. This was just the first of what would become many surgeries she would go through. 

September use to be known as the month all the kiddos would go back to school, the month where the weather got a bit cooler, hoodies came out, you would watch a football game on Saturday, and dread summer clean up around the house getting it ready for the winter. Now, September means we spread awareness of a condition that affects our home daily. With each headache we wonder, with each fussy day Willow has, we start to see if there are dots that need to be connected when she is more tired than normal, we question what has she been doing. September is a month, where we share her story, along with so many other's and raise awareness of a condition that could hit anyone at any time in their lives. Do you know about hydrocephalus? 





Thursday, August 24, 2017

DC Recap



So, I will do two recaps on our trip. This is a more grown up version with a bit more incite as it is my personal blog. On Willow's Wishes, I will do a 'Willow version' of how the trip went. Maybe even do a Q&A interview.

I will spare you the boring details of the drive (13 hours down, 14 back home), as well as any and all fights between children that I am sure, could have been prevented if only they were to follow directions. I will say travel bags with new books (coloring, puzzle, reading) are a great thing to have, while magnetic hangman not so much (not sure we found all the pieces after the 3-year-old got to the game).

Thursday was the meet and greet dinner. A night for all of the families to meet other families traveling the same journey of hydrocephalus, (who are we kidding, no one's journey is the same - it's the conditions name that is shared, but there is also a great understanding that goes along with that), and share stories. It gives our kiddos a chance to meet others who have laid in the hospital bed long hours as they have thought no one gets it - but they do. Willow and Evan also got to sign books that night which she thought was not so great (she signed about 30 copies that night!) and so had a sore wrist. LOL

Friday was the meeting day, we met with three offices in DC, Rep. Amash from West Michigan, Sen. Stabenow, and Sen. Peters.  For the first time in all my years of going to these meetings, I actually felt that Amash's office received us and Willow's story well. They made it clear he will not sign on to the Caucus to help raise awareness in Congress - but they now have a health aide on his staff, which is new. I like to call that a very small baby step, but at least a step in the right direction. The other two offices have always been quite supportive which is great, but this year almost felt above what has been said in the past. They both loved that there are events happening in MI to help raise awareness and have said that they will love to hear more about them in hopes to come to our walks or help raise awareness in September when it is National Hydrocephalus Month. Those are great things to hear at this point. So, now we will wait and see what happens as more events and awareness is raised.

Saturday our family took a trip to Salisbury, MD and then on to Ocean City. Our stop in Salisbury was not very long at all, it was a moment to pay respects and get a photo with Jon's dad who passed away before I met him. So, none of our kids had the chance to know that grandpa; but I felt it was a great piece of family history for them to know. Maybe because Jonathan runs off to college next year, maybe because we picked Orion's middle name after grandpa's middle name... Maybe because we were close enough to see it, and that was all the reason needed. Either way, Willow was very excited to stop and 'see' grandpa. We then drove on to Ocean City so the kids could go jump some ocean waves and taste the salty ocean (more to come on that in Willow's version). Then homeward bound on Sunday, all in all, a great trip.

Yet, so much more came out of this trip. I go on these trips and bring our family to raise awareness in Congress. I need them to see how hydrocephalus has affected our children - not just Willow. Something that I was reminded of on this trip, is that I have no memory of Jonathan's 6th-grade year at Blandford, that was the year Willow received 12 surgeries in a short 12 months. The memories I have of that year, are of Jonathan asking not to go on overnight trips away from home because what if Willow ends up in the hospital? What if Willow doesn't make it out? What if....

Or how about the comments made to me about how amazing I am as a mom because I am there?! I am there speaking out for my daughter, I allowed her to have a voice in a book, and share her story with others. I am THERE every day she is in the hospital.... I get it; some parents can't be there in the hospital, bedside for every minute. I do not judge... but to have a few teenage girls thanking me for being there, just being THERE... hits you in the heart.

What about the time the research doctor who is there, set to speak the next day at our conference also thanks you for allowing your child to write a book so that they can hear from a different perspective and remind them of WHY they are in the lab day in and day out? It puts a heart to the reason they do their job, and she had tears in her eyes.

You see, this year there was a lot of awareness raised, I am certain of that. It may not have been the awareness I left my house for, but it was awareness none the less. It put a new fire in me, reminding me why I joined the PHF, why I decided to get involved and be the voice for those that don't want to or can't speak. Why I will, every day, take it personally when something I plan as a way to raise awareness or funds doesn't go well, and it will make me try harder next time and not give up.

There have been a lot of chance meetings in the last month, that lead me to believe that this is where I am supposed to be, this is where I am supposed to grow. I personally have tried to steer my life in many other directions (still do on a daily basis), but I keep being shown (though I don't always listen, darn stubborn, red head) and after this trip to DC... I hear now loud and clear.

I want to thank EVERYONE who helped our family all summer long raise funds to get to DC this year, this by far was the most rewarding trip we have been on. Thank you, just doesn't even seem like enough, but yet is all I have.



 

Hydro Hero's 2017 




VP Michael Illions with Willow 















Sunday, July 16, 2017

Amazing news

Our summer has been filled with lazy days, fun days, quiet days, and days where the kids can't keep from shouting at one another, (truly a nice way to say screaming, and ripping each others heads off) and well, a book release!
This next half of our summer is truly going to fly by with so many things taking place that I am not sure I will be able to keep up! I know we have many supporters out there who also love us and want to stay posted on our going on's and upcoming events. I will do my best to keep one and all up to date, but please know - we are crazy busy!! These next few weeks have arrived and we are all very excited!!
This week we have 2 candy making classes that Willow and I are teaching. We love to make chocolate candies, and are always complemented on them, so we want to share our love with others. doTerra is also offering BOGO offers this week, so I will be busy with work stuff for sure! We love BOGO week! Sharing yet another passion of ours :)
Next week, we are running our yard sale for 3 more days, the 27-29th of July. We have had NEW items dropped off, and things still being dropped off. Toys, two different bunk beds, dresser, chairs, clothing, housewares, tents, and so much more! Come check it out next week!
On the 31st of July, why not check out Fox Morning Mix around the 9 o'clock hour.... Willow will be on live talking about her book, the PHF, our walk and who knows what else! We are super excited for Willow, while she is super nervous. :)
Also this same week, is the MI PHF WALK event on Saturday, August 5th at Wahlfield Park. Willow and Evan will be there signing copies of their book before the walk starts. There are great family fun games, as well as a beach party theme (so plan to get wet!)
On Saturday, August 12th, I will be taking Jonathan up to Lake Superior State University to tour the college. It is really the only place he is interested in, so I hope it lives up to his dreams. He is looking at a forensics chemistry major there, and it seems they have a great program.
A few days after that, we leave for DC! We will travel as a family there to meet with the PHF and speak with Congressional reps about the importance of raising awareness of Hydrocephalus and how it affects so many, and yet so unknown. We also take a day or two extra as a family vacation, so the kids are looking forward to that as well.
Shortly after our return from that, the kids go back to school! It is crazy to think that they will be going back in only 6 weeks. Willow is most definitely not ready. The other kids have mixed reviews. :)  This year, we have a senior in high school, a freshman, a 7th grader, a 1st grader, and a 4 year old in preschool!! Oh how busy we are. :)
I hope that for many of you who follow our family, support our journeys, and love to stay on top of things - this was all helpful information. For others, maybe not so much. Lol, if anyone has questions about what I have said here, please message me, I will do my best to answer quickly.
From our family to yours, please enjoy your summer!! We are half way through!


Tuesday, June 20, 2017

Willow's story

Today, I am going to cross the lines in my blog a bit and share with you all, my six-year-old daughter's story. You may have heard it, or follow the blog I keep for her (Willow's Wishes), but today I am going to share on my personal blog.

Willow is our fourth child, and my pregnancy with her was not an easy one, but I am not so certain that all of the complications I had led us to where we are today. We will actually never know, but it isn't the part of the story I really want to focus on. You see, Willow was born Christmas Eve in 2010, and while I wasn't happy about having a baby so close to Christmas, you have to know her, to know that she is full of spirit! That was totally the right day for her to be born. She passed all newborn screenings, and was only 10 days early and had no need for any interventions. We stayed until the 26th and then were sent home.

As she grew, we started to notice a quirk she had. She had this head tilt that seemed awfully awkward and hard to imagine as it being typical newborn.
Photobucket

So at 2 1/2 months of age, we started a journey that we had never even heard of, knew nothing about, and sure as heck, was not prepared for.

Willow's story is quite long and involved, but I would like to keep it short and concise as I can. Please know you can go back to the link above and follow her journey more in depth at her blog (just start here). Willow was diagnosed with hydrocephalus at 2 1/2 months of age. Actually, to be more accurate, we were told she had no brain. In that little, tilted head above, is all fluid and no brain matter. At least that was what the first MRI showed. At four months of age, things changed and she had her first brain surgery. That is the only way to fix hydrocephalus. There is no cure, only brain surgeries to fix this condition. From the age of four months to the age of 16 months, Willow and I lived in the local children's hospital. During this time, she would average a surgery a month. 12 brain surgeries by the time she was 16 months old. Instead of walking, saying mama, dada, she was dealing with brain surgeries and a shunt that was supposed to be helping her, only instead it kept failing her.


We then had a great break and almost made it four years surgery free! This time allowed our family to grow into a new normal, allow us to be with our older three children again, and really live life. But shunts are unreliable, it is only a machine after all. Machines fail outside of the body all the time, why would this be any different?!  Hopefully, you can catch my frustration here. Shunts have a 50% failure rate within the first two years of placement, hence so many surgeries on our little girl. Not only that, she is actually allergic to the silicone that the shunt is made of, and so needs a special one to be placed in order for her body to not reject it. How special for our little girl.

Willow is now six years old, and not to jump too far ahead in our story, but she is up to brain surgery number 17. This doesn't count how many times she was placed under for tubes to be placed in her ears, tear ducts probed open, MRI's as a baby, future dental work (well, it's done now), etc. A few years ago, she started to wake up during a routine MRI, and they had to use emergency anesthesia. What happened was her body had become used to the dosage used at her weight, and she woke up. :( Those are some of the things that worry us, as well as how many more surgeries she will have.

Now, Willow is doing amazingly well, and we are so very proud of her. She has overcome so many odds, and her story may not be typical of what a child with hydrocephalus looks like, but it is her story. 17 brain surgeries and counting, just finished kindergarten and looking forward to an amazing summer.

Now, this really does give only a snapshot of all that she has overcome, it doesn't discuss the therapy she received all those years to get her where she is, it doesn't talk about a lot of the issues faced within the surgeries, etc. But again, if you want to know more about her personal journey, check out her blog. Just know that all of this led to our journey, where we are working with the PHF and I am a director here in Michigan. 

The PHF is a non-profit organization and you can learn more about that here. We host a walk in August to raise funds for the MI PHF that are then given to fund research grants for better treatment and better shunts. Information on our walk can be found by following this link, where you can also make a donation or register to join us. This year we are also going to DC to speak to congressional reps to raise awareness of the condition there as well. The more that is known, the better the chances are to find a cure.