4 little steps

I started this post this last weekend and have been jotting things down I want to write about as I think of them, knowing that I wouldn't probably post anything until after our visit in Iowa City. I guess before I get started on yesterdays visit let me recap our visit to Mayo and this last weekend.

After we got home from Iowa City a month ago we saw Reed decline rather quickly in his ability to stand and walk.  However over the last few weeks we have gradually seen him have the determination to gain some of this back, all thanks to the power of your prayer I believe.  If we are honest with ourselves we don't believe that he will gain the ability to walk back again but he has slowly started to stand a lot more with the help of objects and hands to hold. He will walk with help and over the weekend we witnessed him take four small steps on his own. Then last night he stood up on his own in the middle of the room with no help and even got in a dance move or two.  God is amazing and can do amazing things who know maybe he will be able to walk again.

Isn't prayer such an amazing thing, on Monday I had such a calm and peace going into the visit at Mayo.  The drive there was good, Reed was happy and actually really goofy.  Mayo is a beautiful place, we got right into our appt and were seen right away, in total we were probably only at the hospital maybe an hour and a half.  The appt was very little stress on Reed (thank you for your prayers there) and he really like the doctor we saw.  
Not a lot of new information was learned from our appt though which was a little disappointing to me. She examined Reed, took a family history, reviewed his MRI and the labs that Iowa City had send up. And then talked over everything with us.  She asked several times if Iowa City had ordered a complex DNA test which honestly I didn't have the answer to but she felt like that was the best method to go next to make sure we pin-point the exact gene that is mutated, this will help with determining the exact type of Leukodystrophy that Reed has.  She didn't want to order the test there at Mayo though because just in case Iowa City had they don't want to double up on test for insurance purposes. If Iowa City hadn't already ordered it she put in our notes to take to Iowa City for them to do it.  

She also talked about once we know more specifically the type he has then we can start looking into clinical trials/research that might be available to him.  She gave us a website to be checking into these called clinicaltrials.gov.  When we were in Iowa City a month ago I got the feel that there was very little hope for treatment with Leukodystrophy and that we were kind of screwed, but after the Mayo visit she made us feel like there are some options out there and it gave us a little bit of hope.  Finally we asked her about the bone marrow and she said of the lab work that she had but she didn't think she had it all he was negative for those type and the bone marrow would not be an option, big blow. 

And that was that the appt was done and we headed out the door, I left confused I felt like I needed an action plan, a this is what we do next conversation but that didn't happen. Thank God for Jesse because he cleared things up for me and said that we won't get marching orders until after our Iowa City appt.

In case you are wondering what Reed's MRI looks like here is a picture of a normal brain and a brain that has Leukodystrophy.  This is not Reed's brain but it is similar.

As you can see the one on the left is a normal brain all the white matter is there and the brain on the right there are those dark grey spots, that is the melting of the white matter. 

On the way home from Mayo I was feeling very let down and disappointed, I texted my mom and sisters; "no miracle today for our boy, I had such a calm about today's appt, my hopes were up now I feel let down.  I trust God and his plan but still sad and confused" and my mom who said the right words back to me, "yes i know--me to, but we have to remember He may be asking us to wait a little longer while He works on more of the details to Reed's plan."

If you had the chance to read my mom's post about Proverbs 3:5-6 the other day you should jump on over to her blog and read her latest post called, Adversity Reed 1.  It is very encourage and mom is so good with words, you will feel encouraged I promise.

Therapy this weekend went really good I was able to sneak out of the room which allowed Reed to focus and the report back was that he worked very hard and had a great therapy session. I was very excited about this because the previous session's we have had didn't go so good because Reed would want me versus doing the exercises with the therapist. 

Working hard in thearpy

The community we live in continues to amaze us everyday, we were truly surprised by the blankets being made by Nancy Steinbron and Becky Bohling they are just amazing! The first round of #teamreed shirts came in and they turned out so good.  Reed's shirt is so cute his says #IAMREED and on the back it says #IAMSTRONG, bless Nicole she gave him a bear with a matching shirt on it as well and Reed loves it. She is still taking orders for shirts if you would like one.

This morning brought struggles to get up; this morning we were scared, we prayed together, I laid awake and I struggled to get out of bed. I felt that when I got out of bed for the day I would have to face today and get the day started and I was scared to get today started.

Today's appointment brought good and bad, all of Reed's lab work that they took from our previous visit was negative which meant that of this rare disease that Reed has his form of it is even rarer. So we are still unsure of the type of Leukodystrophy that Reed has. In order to hopefully determine the type that Reed has they drew more blood to do a more in depth sequence of Reed's DNA. Based off of what they know already they think the type that Reed has is a type called Vanishing White Matter, not sure if that is the technical term.  

The doctors have also be consulting with the leading specialist in the Vanishing White Matter type who is in Washington DC.  She has been reviewing Reed's case and wanted us to enter him into her database which will help us qualify him for clinical studies and research.  She also may like to see Reed at some point and we are considering a trip out there, to get her opinion. 

So the waiting game continues the DNA test that they drew for today will take roughly two weeks. We will go back in one month to review these results at this time we will know if he has Vanishing White Matter Leukodystrophy or if more testing will need to be done. The good new is that Reed seems to not be getting worse like I said is actually gaining back a few things that he has lost hopefully. It was encouraging also that the doctors didn't think at this point that his disease would be fast progressing. 

Aunt Becca made the trip down with us which was very helpful because she was able to distract Reed for us while we needed to talk and listen to the doctors.  I think by the end of the day they wore each other out.

I haven't been doing a very good job with keeping up with the #stayingafloat2015 verses so here are the last 4 that I have wrote down, I am working on catching up because I find these verses so encouraging and just what I am needing to hear about God and his promises:

My Mom is a Better Writer Than I Am

My mom was blessed with the ability to express herself with words. She wrote this post a week after Reed's diagnosis and I wanted to share it here with you all.  My grandma Tansey's favorite verse is a permanent reminder in my head to lean on God and a reminder that He will bring clarity to your journey.  Please click over to my mom's blog and read about Proverbs 3:5-6

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:

Dark Place

I’m in a pretty dark place the last few days, last night when we got home for the night Reed was very uncomfortable even in my lap he was still doing circles trying to find the perfect spot.  Then the crying started, heavy crying, red in the face crying. I couldn’t figure out what was wrong how to make him happy or comfortable, was he in pain and he couldn’t show or tell me. Does he even know?  I tried getting some Tylenol in him but he fought me on it and I just held him the best I could.  Then I started to slip into a dark place, feeling of guilt, feeling of I did this to him I gave him this disease my genetics is causing him to die.  Then I noticed his struggles to stand now, in just a little under two weeks Reed has gone from being able to stand and take maybe up to 10 steps to having struggles to stand on his own and some struggles with standing and holding on to something.  

How is this happening and why so fast all of a sudden is it the stress of doctor appointments that we are putting him through that is causing this quick digression or is this disease really going to move along this quickly?  I feel so helpless, I feel so hopeless, I feel guilt, I feel mad and sad, I feel sorrow, I feel for my little boy who doesn’t understand what is happening and probably never will. Sleep has not been restful for me the last few night and I lay awake and think which is the worst thing for me to do.  We started therapy today and watching my baby cry out to mama and struggle with what we all think of and take for granted as the simplest tasks like walking really sunk me lower. Watch him try to walk with the help of a walker today made me realize that my little boy will never walk again here on earth.  Therapy was good for him but bad for me, it will help him I believe and once he is comfortable with it I pray/hope that the cries for mama won’t be as often.  In my attempt to try and find some positives he is learning new words which is encouraging because I struggle with his frustrations and trying to figure out his needs, my hope will be that he will learn and be able to tell us his needs still or for as long as possible. 

With the dark days they are followed by good days, we started out the week really well two really good days in a row, Reed's personality was back he was his happy and playful self again. Which followed by a bad day maybe not so bad for Reed but hard on Jesse and I.  Today started out not so good with the struggles of therapy but we ended the night good, playing and having a good night together. Here is to the hope tomorrow is another good day, ONE DAY AT A TIME.

Here is today’s #stayingafloat2015 verse:

Staying A Float 2015 Day 4

Here is today’s #stayingafloat2015 verse:

Staying A Float 2015 Day 3

Here is today’s #stayingafloat2015 verse:

Dreamt

I dreamt this weekend, I was trying to remember the last time I had a dream and could remember that I dreamt. I feel like that is good to dream are normal, normal people have dreams.

I have started following a Instagram feed called #stayingafloat2015 this has been encouraging to me and I find myself waiting each day for the next verse, but I am having a hard time holding on to the words, holding on to faith and belief. Below is the first two verses: