This Video Could Save Reed's Life

6 Month Check Up

Yesterday we met with our Neurologist for our 6 month check up. All things seem to be going okay. He felt the tightness in Reed's hips and legs needed some attention so we are going to try some Botox injections in his legs to see if that will loosen things up. We decided to go this route rather then using drugs as we would like to keep drugs with side effects out of Reed's body as much as possible. We hope this will allow Reed to relax a little bit more in his lower body.

Other then that things for Reed seem to be going okay, he is losing some trunk strength and starting to show signs of struggle from going from belly to pushing himself up to sitting.

These things are things we knew we would face and are not surprised by them. Reed also doesn't seem affected by them he still is his crazy happy self. We still fight this fight and still have faith in a treatment or cure for Reed.

Happy 4th Birthday Reed!!

HAPPY 4th BIRTHDAY sweet Reed!!!

How is it that you are four already, how is it that four years have passed already. Reed you are the light of our life, your beauty inside and out is one of a kind. You will probably never understand how you have affect peoples lives. Reed you are an amazing boy, so smart, loving and happy, you are so determined and love so deeply, your smile is going to take you far in this world. You love your mama and daddy deeply and are your mama's "super hero" you keep her head on straight for her by having the best memory. Reed God has big plans for you, plans to share your story, plans to share about God's love and mercy, we truly believe that God's plan for you is bigger then we know right now. HAPPY HAPPY 4th BIRTHDAY to our "big boy", we hope your day is as amazing as you are!!! You are our light and our world Reed.

"For I know the plans I have for you declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11"

The Wheelchair Arrived

Today was a big day, tears this morning of uncertainty brought smiles in the comfort of his own home! Papa and him took the wheelchair out for its first public outing tonight to cubbies at church!!!

November 1, 2014

November 1, 2014 is now knows as dooms day in our house. This was the day we first saw the signs of Vanishing White Matter.  This was when our lives changed forever.  What seemed like a normal day, I actually took Reed to Club Volleyball Tryouts so that he could run around the gym.  As we walked into the gym my dad and I noticed some abnormalities in Reed's walking but he seemed find otherwise.  If I remember right I think he had some new shoes on also so maybe I chalked it up to that.  My mom came up a few hours later to pick him up and noticed the same thing, she took him back to there place to put him down for a nap.  From there is where our living nightmare took over. When I got to my parents house to pick him up he was still sleeping so I woke him up and set him down to be on his way, it was from that point that his walking took a drastic change, his right foot turning in, falling ever few steps. Trying to remember did he fall at the gym, did he complain about anything.  A call to Jesse to come over and take a look at him and then a call to Urgent Care had us going in for x-rays and blood test.  It would be another 4 months before we got an answer.  

Vanishing White Matter has taken so much from us, we live in fear many days, fears of a cold, fears of a fever, fears of whats to come.  They say average life expectancy for Vanishing White Matter is 5-10 years from onset of symptoms so that means today we head into year three of onset (to be raw here typing that and the realization of what that could mean started the tears).  But Vanishing White Matter has also taught us so much as well.  We would trade an infinite amount of things to not know what Vanishing White Matter is.  But it has brought us closer together, it has taught us to appreciate every second, minute, day.   Reed has taught us to smile more, live in the moment and to have HOPE and never give up.  He has taught us how to fight for something and to truly believe in any possibility.  

Here is to FINDING A CURE IN FOR VANISHING WHITE MATTER in 2017!!!

Pray

Days after November 1st when doctors thought it was just a crack in the knee, at the time we didn't know better but we should have asked for another x-ray to be done. He never regained the ability to fully walk after the cast came off.

Summer 2016...

One memory of Reed walking that sticks out in my brain is watching him explore our yard at our old house, I was sitting on the patio and he went off on his own; discovering.  I am not sure why this memory sticks out in my head so much, maybe it was the independence of it all. This was late summer 2014, little did we know that he would only have a few more months of walking.  I can remember during this time thinking it was strange that we never seen him run like other toddlers but didn't think to much of it at the time, now looking back at it we now know why.  I think about these kind of things usually on nights when sleep doesn't come or is a struggle for Reed to sleep.  Last night this was the subject on my brain.

But on to why I am really writing this post, I have been wanting to write about our crazy busy but amazing summer for weeks now but have just struggled so much with motivation to actually sit down and write out all that happened because it was a lot.

Summer 2016 was busy, I think when we look back at the summer we had maybe only 2 or 3 weekends where we didn't have something going on.  Busy is good but busy is also exhausting and then add a handicap child on to the mix it adds a whole other level to the busyness.  I am going to have to go back and look through out calendar I think to write this post and also try and remember to write everything that happened.

Lets start with May 13th, - Team Reed Glow Run 5K - what an exciting event this was for us, we had over 300 participants it was a cold night but we couldn't be more happier with the turn out.  This event defiantly set the bar for goals for our events for next year.

The next few weekends were filled with graduation parties and our first weekend camping for the year, and Reed caught is very first fish!!

June 11th we held the Team Reed Golf Classic, which was another great event, we had 30 teams signed up which made for a full day of golf.  Between the 5K and Golf Classic we were able to send a check for $20,000 to VWM Research is Israel.

Then we followed that up with Aunt Becca's wedding!! Cutest ring bearer I have ever seen!

To end June out The Jesup Softball team held there Blue out for Reed night, where the crowd was asked to wear blue for Reed, Reed got to throw out the first pitch and was the guest of honor.

Also in June we had our 6 month check down in Iowa City, all was well not much in terms of news or changes for Reed on a health stand point.  No news is good news, right?

July brought a low key 4th of July and we road trip up to Prairie Du Chien for the day to do some exploring. Farmers Day was to follow which is always one of our favorite times of summer.  And Wheaton Franciscan held a jean day for VWM Research and raised an amazing $1200.

Next up for our July was Kids Captain Photo/Video Shoot, We are so excited that Reed was selected to be one of 2016's Iowa Hawkeyes Kids Captain, he was choose to be the honorary captain at this years post season game.  As part of being the Kids Captain we received a special behind the season tour of Kinnick Stadium, got to meet players and coaches and get autographs.  Reed was showered with gifts, a jersey, a new Hawkeye shirt, poster, trading cards of Reed, black and gold m&m's among a few other things as well as 4 tickets to this years Homecoming game.

Then we got in a little family swim time, an adult evening at the Great Jones County Fair for the Boston Concert and then the ZOO!!!!!

August brought another camping trip, Kids Day at Kinnick, a free weekend for once, Cousin Jordan's arrival, Reed's first day of Preschool and the Kris Walter's Golf Tournament where we were the sponsor on hole 5 and ran a game to raise money for VWM research, only to be surprised by given all the proceeds for the tournament to go toward reserach, $5000!!!!

September we didn't slow down...September is Leukodystrophy Awareness month so with that I participated in a 30 Sit-Ups for 30 Days challenge, as well as we held our annual wear blue for Reed day, Cubbies started with papa, we spent a weekend away with friends, the Jesup Volleyball team held a blue out night for Reed. Can I just say how floored we were by both teams at the blue out game their love and support for Reed and our cause is so great we just couldn't be more proud to be apart of such a great community and volleyball family. Plus an additional $100 was raised for VWM research!! To top off the month we end it with winning the proceeds from the Taylor Morris Glow Stick 5K, Reed was voted most inspirational story and received $10,000 to go towards VWM research!!

It has been a great summer, we have tried our best to fill Reed's life with as many experiences that we can.  We have tried to stay proactive in fundraising for research and hold or participate is an event every month this summer.  Now on to October which is starting out to be just has great of a month as the others....

Changes...

Jesse and I are often asked, how is Reed doing?  Usually the canned answer is "he is doing okay, holding steady from what we can tell".  But the truth is he has declined, it seems like a slow decline but yes a decline.  Reed has recently started to like a photo books of us before bed.  It shocks us as we look through the photos from just a year ago, to 6 months ago to see where Reed was at physically.  

100 weeks ago, standing on his own with great balance and hand control

91 weeks ago (November 2014). first sign of symptoms 

84 weeks ago, still standing strong

75 weeks ago (February 24, 2015), MRI

72 weeks ago, can still sit with feet in front of him.  Now he doesn't have enough trunk support to sit this way anymore.

70 weeks ago, signs of right foot turning in and starting to point

66 weeks ago, still loves the water.  Now it is a struggle to take a bath or get him to want to explore the water.  Has the sensation of falling with the water around him.

65 weeks ago, still standing strong

55 weeks ago, still enjoys baths and spends hours in them. Now he is in and out in less then 2 minutes and cries the whole time

39 weeks ago, this is now his standard form of sitting and has caused a lot of tightness in his feet

33 weeks ago, needs help sitting now

7 weeks ago, no longer can stand needs help with hands under arms to try and walk but drags feet, sitting with feet tucked under him because this is how he feels the most sturdy

6 weeks ago, helping him walk, a desire he still has and his brain is still telling him to try and do

A mom of another VWM child recently posted these thoughts and I couldn't agree with her more ( I added Reed's name to this). "I believe that if your child suffered from just one of the following in their lifetime that would be reason enough to make you want to find a cure and fight VWM disease. But for Reed to possibly suffer from all of the following before reaching his teenage years is the reason enough why we fight day and night to save his lives." (which we know is what any parent would do)

As the disease progresses, Reed can expect some or all or the following to happen to him 

• Unable to walk - Reed can already no longer walk
• Unable to talk - Reed's speech has already delayed
• Unable to eat/swallow
• Unable to sit unassisted - can't sit with feet infront and at times loses his balance with feet tucked under him 
• Unable to use his hands - Reed’s hands shake which cause a lot of struggle with a lot of everyday fine motor skills
• Loss of head control
• Epileptic seizures 
• Spasticity - already affecting Reed's legs, right side more the left
• Vomiting – Reed has episodes with bad stomach which sometimes results in daily vommiting for a few days and then it is gone for months
• Irritability – Reed shows signs of frustration when physically trying to do something he can't 
• Mental retardation
• Blindness
• Deafness 
• Coma - some patients die during the coma; others recover slowly, but never to the same level as before
• Death often before reaching teenage years

Again I know we say this a lot but we truly believe Reed will be a part of the cure, we know patience is a virtue we work on daily.  At times it is so frustration waiting, feeling like we are not doing enough.  Hoping, praying that funds will be raised and progress will be made before Reed gets to far in the progression of Vanishing White Matter.