NEW Website

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Amazing Step Stool, Cubbies, and emotional Struggles

Reed Update: Over the summer Reed started to complain of more leg pain this tended to be when we were in the car for a long time or when he was on the tired side. Usually, the pain would be so bad that he would cry and was inconsolable he would work himself up so much that he would become very stiff and very sweaty. About the only thing that would work was to get him out of the car seat and since that isn't always an option me crawling into the back seat to hold his feet up. If we had it we would give him some ibuprofen and with time it would kick in and help. Out of frustration of not knowing what to do, and what was causing the pain, we thought maybe growing pains, maybe his legs were falling asleep in the car seat or maybe it was just a way to get our attention when he didn't want to be doing something. We thought maybe a step stool for him would maybe help, Amazon to the rescue we found this footrest made for car seats and so far so good no problems yet. We haven't had any real long trips yet but also no issues yet and Reed was very excited about the new attention to his setup.

Cubbie has started back up again and has brought lots excitement back for Reed, this is papa and his special thing. Every Wednesday night papa takes him to church, he wears his cubbies coat (as daddy likes to call it), he always reminds us to remember his offering. They sing, learn about God, play games, do a craft and have a snack. Reed loves it!! But I want to be real here as much as he loves it I struggled last night with it. Last night was parents night and watching Reed, watching the other kids run around was hard for me. We try so hard to make sure he is involved and included he doesn't see the difference yet or at least he hasn't indicated that he does or that it bothers him and maybe it doesn't and it never will, I hope so badly that is the case. But as parents watching him and seeing the struggles, seeing the difference seeing what this disease has done to him compared to other kids his age is hard. Usually I can look past the wheelchair I can look past the difference and just see my boy but I struggled last night I broke down I cried for our boy, I was angry last night, why him, angry at God, and as selfish as it might sound I hurt for us as parents for all the dreams we might have had for our son that might never happen that might never make sense for him. We will always fight for him we will do what we can to keep in involved and part of things but the truth is that sometimes that is not a reality and I hate that. But within those bad moments, time passes, Jesse let me cry he comforted me he reassured me that this is okay, that we will give Reed everything we can that we will find him a cure, we will make sure that he is happy! And I woke up this morning knowing he is right we will do all these things and I know that as long as Reed is happy and having fun and enjoying life then we are doing our job for him.

So mama's and daddy's out there keep up the fight for your kids, stay encouraged, you are doing right by them, teach them to love and ask questions, teach them to understand others as they are. You are all doing an amazing job and you got this!!

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10

Pie in the Face Challenge

Tomorrow is the start of September which is Leukodystrophy awareness month and we are joining up with other Vanishing White Matter Families to start the pie in the face challenge to raise money for Vanishing White Matter Research. To kick this off Reed got to throw a pie in my face. We are asking for your help bring awareness to Vanishing White Matter and the very crucial and important research that is being done to help save Reed life by participating in the challenge, posting your video and challenging others (any number of friends you want to challenge) and making just a $10 donation to the research! Donations can be made here: https://www.crowdrise.com/o/en/team/t... So, we are nominating some friends to help us get this started: Zak Knutson Dustin Behn Elizabeth Amanieh Jaima Tonne ( Rayla Wittenburg Tonne) Brian Pottebaum And our bestest friends: Mila and Aira - Ashley Jacoby/ Joe Jacoby Caroline - Blair Elizabeth Sadler Savannah - Melissa Graveman ( Kayla Kauffman) As an added bonus, we will be giving away $100 worth of Team Reed Gear to someone that participated. In order to be entered into this, you have to participate, post your video, challenge others to participate and donate to the research at the following link: https://www.crowdrise.com/o/en/team/t... Please tag Team Reed and make your video public so that I know to enter you into the drawing. Also, please use these hashtags #teamreed #findacureforvwm #VWMpieinthefacechallenge #piefacechallenge #vanishingwhitematterdisease Don’t forget to make your video public so that we can all see it! ...need not be nominated to participate please join in!!

Reed and Research Update and New You Tube Channel

Reed Update and New Vlog Posted:

I realized I haven't done a very good job updating on Reed and his condition and how he is doing. Reed is doing really well since our stay in Iowa City with the flu in February we would say he has bounced back to where he was at prior to that stay. He is very active is looking forward to school and cubbies starting back up. He is able to scoot around again to get where he wants to go so that is helpful. He had a great day at therapy today and one of the best days I have seen in him in OT with his hand stability. My parents went to the United Leukodystrophy Conference last weekend and were able to meet and talk with the two leading researchers in VWM some really exciting and hopeful and encouraging conversations were had during the meeting and that hope for a cure has never been this close within their reach!!! The key here will be to keep Reed healthy and time and money (of course) but we are excited by the work that is being done. We have some ideas in the works to help with keeping him healthy, there is a vitamin mix called the Mito cocktail that other VWM patients take also there is an antibiotic that he could take all winter that would help as well. We worry about school but don't want to pull him from that if we can. We meet with Dr. Perlman here in about a month and will get a game plan in place for the coming winter.

For those that like to see what our day to day life is like just posted the next vlog video today

https://youtu.be/CMhbTqScbb0

Research Update:

Last weekend grandma and papa Mealhow attended the United Leukodystrophy Foundation conference (VWM is a form of Leukodystrophy). This is the 1st conference Team Reed has attend and it was a great opportunity to talk to the doctors and meet other families that understand what you are going through.
There are only 2 VWM research projects in the world, one in Tel Aviv run by Professor Orna Elroy-Stein (center in the picture with my mom) and the other in Amsterdam run by Dr. Marjo van der Knaap. We are excited to share that both projects have made real progress and have identified compounds that might actually stop the progression of VWM. Prof. Elroy-Stein's research is funded for the next year thanks to the hard work of Saving Chloe Saxby and donations that other VWM families including Team Reed have made. Dr. van der Knaap's, on the other hand, has been put on hold for a year while they submit grant applications and wait for the money to come through, assuming the applications are successful.

Waiting a year for funding is not an option. A year is life or death could be life or death for these kids. Neither of these treatments will be able to reverse any damage that has been done, meaning we need to rush this research as much as possible to preserve what motor skills our children have left.

So now it is up to the families to raise the money to keep these projects going. This is where we need as much help as we can get. We need to raise $1 million in the next year.

We have had such amazing support from our community and surrounding community, Reed is so loved! This news coming out of the research is so amazing and hopeful for us, something that we truly believe Reed will be a part of. Thank you for all the past support and the continued support will never be enough for the gifts we have been given by all of you that support Team Reed. We are always looking for ideas anyone who has fundraising or publicity ideas or can help in any way, please message us.

We have had such amazing support at our Team Reed events this year and we will continue to fight and bring awareness and hold fundraisers when we can, please consider supporting two upcoming events, Reed Havlik Ride & Drive (Official) Benefit on October 7th, even if you don’t want to drive in it consider coming to Bucketz that night, October 21st Family Fall Festival for Reed, many great activities being planned, Tessa Cole with Sackett Photography will be holding mini sessions for your little ones in their Halloween costume, bake sale, pumpkin painting, purse sale, vendors, and many more things. If you can’t be there and would like to help out still consider buying a Team Reed shirt at https://onemission.fund/support/team-reed/

We understand that not everyone can help, support or participate but the most important thing for us is telling Reed’s story and awareness of VWM, so we ask that you please help us to raise awareness by share Reed's story, talk about him, share his page, share his picture. Awareness is key here you never know who might be listening and how they might be able to help in some way. Because of the rarity of Leukodystrophy and further yet Vanishing White Matter disease we know that people have never heard of it and people don’t know how close we are to curing an incurable disease. Someday soon we hope that our communities will be able to say we helped and contribute to curing the impossible! How great would that be!

Neither project is a guarantee. Even if we manage to raise the money time is a factor in the treatments, but have a huge amount of hope in this we have hope that maybe, we won't have to bury our son. There is finally a glimmer of light at the end of the tunnel. Without this research Reed's future is certain, with it, he might just have a future.

The Flu Hit Very Hard - old post from the Team Reed Facebook page

Reed is not feeling very good and could use some prayer

Well tested positive for the flu. Doing a little better today hopefully tomorrow will be better yet. Thank you all for the prayers.

Please pray hard, we are being transferred from Allen to Iowa City because of the flu and complications that could lead to issues with vanishing white matter. He is very weak we need full strength prayers friends.

Reed is doing a little better, he has developed a little bit of a moist cough. Woke up a little last night to take some meds and shock his head yes to wanting to listen to some books. He woke up at 3 and we changed his diaper and his eye popped open wide a few times it was nice to see them. He made some very definitive head shakes for a few things. He just had his fourth feeding we changed him again and he drank some water out of his bottle he seems a little bit more responsive this morning. He is such a tough guy took the feeding tube like a champ with no protest, he has been stuck several times for blood draws, had an IV put in, two flu tests, a strep test, two chest X-rays, potty samples were taken twice and hasn't made a peep at all!! He is in room 86 in the pediatric department and we have no plan of when we will be discharged.

Yesterday someone was a lot more coherent and slowly getting some energy back. His chest X-rays came back clear but his fever seems to come and go but it's staying low grade. He was able to hold his bottle on his own some yesterday and was able to eat a cup of applesauce throughout the day. When they checked his weight this morning he has gained back a little weight and best of all he POOPED last night for the first time in six days, and he wanted to get up out of bed and do it in the potty!! We were told this morning that the more we can get him eating on his own the sooner we can go home.

Yesterday was a pretty good day, awake pretty much all day and got some more bites down. We were moved to a new room we are now on the 3rd floor room 88. The night was good he got up once to go potty on the potty, but woke up this morning with a fever of 100.7 and it took some time to get it down. He did try to eat some oatmeal and applesauce this morning but one took about 10 bites then drank some juice and drank to much and it came back up. He is resting now and we are waiting on doctors to see what the next plan is.

And we finally got a smile, I may or may not have danced for it!!! Yesterday he maintained a mild fever all day but managed it with Tylenol. The doctors agreed to allow him to try drinking his pedisure through a bottle first before putting it into his ngtube. That went pretty good and he got about 4 of the 8 oz down during each of the feedings. The rest of the day was spent cuddling and relaxing. This morning more good news they agreed to pull his ng tube and see how he does without it. That brought on more smiles and some giggles. Still, not a lot of words said and when he does it's a whisper. We consulted with the nutritionist this morning and also met with PT as Reed right now has lost a lot of strength and is struggling to hold his head up now. It will be a waiting game to see if the speech and trunk and neck strength come back or if they could be effects of the VWM.

And we have been discharged...Thank you all for all your encouraging words and prayers. Reed will continue to need then as we figure out his new base line, as he is still struggling to hold his head up has weakness in his arms and continues to struggle with getting his speech again

It has been a while since we updated on how Reed is doing since his stay at the hospital. When we came home from the hospital Reed was almost like a rag doll, struggled to keep his head up, couldn't sit on his own and had lost a lot of speech. You could almost see his brain working overtime and also trying to repair itself. We are happy to say that the strength in his neck as returned and his speech is pretty close to what it used to be some delays or slowness but words are there, and his ability to sit seems to get a little bit better each day he has some weakness on his right side and tends to lean that way but we hope that with strength more with time. He is no longer able to crawl he wants to and has asked a couple times help me crawl but his arms just don't seem strong enough to hold his body or his brain is no longer telling him how to move his arms and legs together. We hope this to will come back in some form also with more time. We head back to Iowa City tomorrow for a follow-up but we feel that Reed has made huge progress since the last time they saw him and it will be a good check up.

We had one very excited little boy this morning, he even slept through the night knowing he had to go to sleep if he wanted to go to school today. After more then a month away from school today Reed headed back to class and he was very excited to see his friends, he had told us more then once he missed his friends. And to top the day off his para Mrs. Bobbi was back today also!!!

Update: It has been a hard decision for us because up to this point we have been able to keep Reed off of daily meds, but over the last few weeks his legs and arms have had a lot of increased stiffness in them so we decided to start him on Baclofin which is a muscle relaxer. We have been on the fence for giving him this drug for awhile because of some of the side effects but we felt it was time. So far just after three days of giving it to him only once a day we are seeing benefits, he would have never been able to sit like the picture below before. We are still on the look out for signs of side effects but so far we feel it is having good benefits for him.

May 11 2017

Reed Update: I haven’t given a Reed update in a while, so I thought I would do that. We would probably say that Reed is 85-90% back to his baseline before the stay in Iowa City the only thing that is still not as strong as it was before is his crawling, he does more of a scoot now and won’t go too far but that is also increasing each day. He has had probably the best days at therapy and school last Wednesday and this Tuesday that we have seen yet from him. He was so willing to participate, followed direction and did his activities so well! On a sadder note, Reed did suffer a seizure for the first time on Sunday night, it was very scary and freaked us all out. The seizure last about a minute I would say but he struggled to talk afterward and was very weak, it took about an hour to get his speech back fully and just chilled on our lap the rest of the night. He, however, has bounced back from it and has been quite himself since then. After speaking with the doctor, we are just going to monitor for now but if they keep happening then he will have to have EEG done to get a better understanding of what’s going on.

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.