Update/Prayer Requests/Go Fund Me/Cutest Video EVER!!

Reed has had a great weekend. He had a daddy date on Saturday and the report is that daddy was ready for bed time to roll around, Reed exhausted him!!  Sunday started with church; this was the first time we were in church since Reed's diagnosis, and it was a hard one.  Thank God for dad's to lean on for support when you are having a hard moment.  Cousin Ari came over to play later in the afternoon and lots of fun was had riding on the golf cart and playing trains. We are all very anxious for this week to pass us but also very scared.  In a week we will be headed up to Mayo for our second opinion appointment and a week from Thursday we will be headed back to Iowa City for our follow-up.  I have know for several days now that some of Reed's lab work is in but have been to scared of the results to make the call.  I am telling myself that I have to do this by Wednesday. I am struggling a lot with acceptance and the truth our day to day life has not changed much since the diagnosis but a few bumps and emotional struggles so when I think to far down the road I find myself not wanting to think or talk about it.  Since the diagnosis I also find myself praying hard over Reed at bed time with the thinking in my head that when we wake up everything will be fine, Reed can walk again and an MRI of his brain comes back as normal.  

Bed Time Stories

Some specific prayer requests for the up coming two weeks would be for our up coming appts, Mayo and Iowa City, we are praying hard for the type of Leukodystrophy to be the cord blood/bone marrow type and the results of his lab work will hopefully tell us this, we do have a couple physical therapy appts this week so prayers those go good as well, and of course continue prayer for our miracle!

There has been a Go Fund Me site started, in our minds we want to get Reed's story out there from what we can find there isn't a lot of research being done about Leukodystrophy because the disease is pretty rare.  Jesse and my feeling is that we want to do as much as we can to help this change.  We have contacted a couple research companies volunteering any help we can provide, I have also contact a doctor in NY about a study he has been working on. We feel that things like this blog, my Facebook page or the Go Fund Me site will help us spread Reed's story, we don't look at these things as financial help but avenues to share what we are going through and hopefully create more awareness about the disease.  So with that being said please understand we don't expect donations but if you are willing to check out these sites and share them that will help us tell Reed's Story.  

Here are the most recent #stayingafloat2015 verse:

And finally I will leave you with the cutest video you will ever see, you won't be able to not smile at it:

Post by Erika Mealhow-Havlik.

I Hurt Tonight

I hurt tonight, I was doing so good but then I made the mistake of reading about leukodystrophy and I lost it, I lost control. I am having a hard time facing the truth I'm having a hard time excepting because right now things are as they were just a two year old that can't walk. One day at a time, I need prayer to sleep, I'm struggling. He needs a miracle, in times when I want to yell why God and be mad at him I find myself asking my same God for healing for Reed, for treatment, for that miracle that I know only God can provide.

Updates From my Facebook Page

Here are few updates on how are weeks have been going that I posted to my facebook page.

2/28/15
Reed had a good day yesterday cousin Lily-Belle and aunt Colleen and a few other friends came out and played for a little bit. Which was really good for him. We had a doctors appt and saw aunt Becca the appt went good it was more to just talk to our local doctor and will be nice to have a middle person between us and Iowa City. Reed personality seemed more himself then it has in the last week. Mom and dad continue on a roller-coaster but we keep telling ourselves one day at a time. Again thank you for all your prayers they are much need, and thank you for all the loving support.

3/7/15 Just a quick Reed update on how his week went. We had an up and down week well maybe just mom did. Week started out with more blood drawn that is being sent up to mayo. He also started more extensive therapy at EDI, which went good he was pretty clingy but I think as he gets used to it, it will be really good for him. This was hard for me though just watching and thinking about what this means. We will go to therapy once a week. We had one day this week where the evening didn't go so good Reed acted like he was in some pain, red in the face crying and not able to get comfortable but he eventually calmed down and played like normal. There have been some good things Reed seems to be learning new words everyday and we hope that this will continue and he will maintain this, and yesterday at daycare I was told he did a lot of standing which I haven't seen him do much of in days, this was really encouraging for me to hear. I am becoming a logistic specialist getting all the appts scheduled, I am trying hard not to overload him because I think all the appts lately have stressed him out. I had couple bad nights where I let my thoughts get the best of me, but we continue to take one day at a time. We continue to pray hard and often and ask for God's guidance and comfort during this time. We can not say thank you enough to you all for everything you have done or are doing for our family, we love you all and you are just as much in your thoughts and prayers as we are in yours.

Staying A Float - Day 9

Here is today's #stayingafloat2015 verse:

Staying A Float 2015 Day 7 and 8

Here is today's #stayingafloat2015 verse for last Friday and Saturday:

This is one I need to hear and keep close to my heart right now.

Team Reed Events

Again we have such amazing people in our lives, we can't thank Jared Bucknell enough for all he has done.  He has put the wheel in motion for some amazing events to help support Reed and Reed's life. There are #TEAMREED bracelets for sale, as well as #TEAMREED shirts.

The wheels are in motion for a Team Reed golf/dinner/silent/live auction on June 20th at the golf course.  We know little about the planning process but from the little bits I have heard the event is going to be amazing and I am just in shock over the generosity that people have given to our family. As I get more information on this event I will share, but if you have questions Marci Dahl is also helping Jared with the planning as well

Jamie Even asked me if she could plan a 5K for Team Reed, she thought it would be a great way to get some of the younger community members involved or maybe those that don't golf.  I agreed, thinking of all my volleyball players :)  It looks like this event will be held early May, and again as I find out more I will pass on the information.

Both of our employers have been so amazing as well, and we feel great comfort knowing we work for such amazing companies like VGM and Farmers State Bank.

Again thank you, thank you, thank you again, I can't say it enough.  We are feeling all the love around us, thank you for wrapping us in a massive imaginary hug!

Community Support

Even during our hardest time,we have been surrounded my so much love. There have been so much community support given to our family.  It surprises us every day, I have probably shed just as many tears of thanks and gratitude for all the amazing gestures.  Wristbands have been ordered, t-shirts are in the works, a golf tournament silent and live auction and dinner are being planned. Cards, donations, messages, texts, new toys for Reed, gift cards for us, people praying so hard and deep for us from all over the country. So a HUGE THANK YOU to everyone we wish we could thank you all individually, please know in our hearts that your prayers, thoughts and generosity for our boy or so greatly appreciated.  Our hope is that we will be able to give back some day just as much as we have received and more...

We have big plans for Reed this summer, try and make the most of what we can while we can. Lots of bike rides, walks, softball games, lots of swimming in our pool, camping, a garden and I am sure more. 

ONE DAY AT A TIME is my new motto, the last two weeks have been very dark and difficult but precious Reed keeps living on like its just another day.  He is happy, and goofy, he wants to play and experience things, one of his new favorite words is "see" and he squints is eyes to exaggerate that he wants to SEE what we are doing or looking at, he wants to snuggle more then he has every before and I am loving that.  So in our dark moments when he might be struggling or we are; we try hard to STAY STRONG for our little boy.  

Here is today’s #stayingafloat2015 verse: