One Year Ago

I have been thinking about this date for months now, one year ago this reality started.  What was a normal morning turned into fear and so many questions by the afternoon.  On November 1st, 2014 Reed woke from his nap not able to bear a lot of weight on his right leg, when he tried to walk he would turn his foot in and then fall.  He didn't appear to be in pain but did appear to be frustrated and was fussy.  A trip into urgent care brought no real answers but a follow-up to a Orthopedic brought what we thought were finally answers a crack in the knee is what the doctor thought he saw but wasn't 100% so we decided to put a cast on Reed and wait two weeks to see if that helped.  It didn't and probably made his ability to walk worse.  Slowly we saw small signs of his ability to walk again come back but never gained back the full ability so our search for answers continued several x-rays later still brought no answers and blood work draws twice showed no infection. So after almost 4 months we headed down to Iowa City for an MRI and received the news that now shapes our lives.  Reed has Leukodystrophy.  That moment will be burned in my mind, if I could draw I could draw the room we were in, I could describe the moods in the room I could tell you where everyone was sitting or standing.  That moment will never leave me.  The last year has brought a lot of hurt in our family, a lot of questions, a lot of why but we have also been shown a lot of love and support.  You learn to live for each day to live to not take things for guaranteed, we have learned to love each other deeper, we have learned who and what are important in our lives.  Our daily prayers have changed our hopes and dreams for our son have changed.  We pray for a miracle, we pray for mercy on Reed's life, we pray for time more time, we pray for the doctors and researcher around the world that God will open their eyes and minds to an answer. We pray that we are being heard, we fear we are not. We have emotions we don't want to have, unrelatable, jealousy, sadness, frustration, fear he is missing out. Many times as we pray with and over Reed at bed time we feel unheard we feel like yelling at God to please just show us he is in control, but we know he hears us and we know this is our test, we know he has a plan, we know he is hold on to Reed harder then we ever could. We trust that God has Reed in his arms, we give Reed to the Lord because what else can we do what other calm can we find.  Deep down in my heart I just have a feeling that I know a treatment/a cure will be found in Reed's time, I am learn patience, in God's time not mine.

But...Reed is doing great, his disease has shown no big signs since last November.  His speech is making huge strides.  He is happy and a crazy little boy, he loves deep and is our hearts.  He is so smart he may not be able to get around like he wants to and may not be able to express his words just right yet but he catches on so quickly and he remembers things that just amaze us.  We trust this plan even if it ins't our plan, we live to conquer the day that is facing us and nothing further.

Therefore do not worry about tomorrow, for tomorrow will worry about itself, each day has enough troubles of it's own.  
Matthew 6:34

Therapy

Reed continues to go to therapy once a week and then sees in-home therapist 4 times a month, he works very hard in therapy well as hard as a 2 year old can. He definitely shows is personality in therapy when he wants to do something he is all in and if he doesn't want to do something he definitely lets you know.  We have some amazing people working with Reed and are so thankful for them all!

Wear Blue for Reed

I posted earlier in the month that September is Leukodystrophy Awareness month and we took part by wearing blue every Wednesday in September to honor Reed and bring awareness to Vanishing White Matter. On February 24th Reed was diagnosed with Leukodystrophy and then later Vanishing White Matter, knowledge is power with this disease and as there is no cure for the disease our hope and prayer everyday is that there will be a cure within Reed's time. Thank you all for your support for Reed, just like any disease and research money is the key as much as that sucks to say if you fill it in your heart to donate to the cause of vanishing white matter please visit,http://vwmfoundation.org/

Here is a collection of some of the awesome people in our life's supporting Reed and Leukodystrophy month, ‪#‎teamreed‬ ‪#‎whitemattermatters‬

UNI Volleyball

Again I am playing catch up, this was from a Facebook post at the beginning of September:

Reed had a very exciting weekend, Last week I received a very awesome message from Piper Thomas letting me know that the whole UNI volleyball team (players, coaches, managers) all wore blue for Reed last Wednesday and would continue to do so throughout the month of September. To which I told her I would love for the team to meet Reed, we were then invited to come to their serve and pass practice on Friday afternoon. Were we got to meet the team and talk to them a little bit about Reed disease. Later in the evening it was back to watch the girl in action and then again on Saturday afternoon. We are so excited to watch these girls play this season and can't thank them enough for their love and support. Thank you to Piper for her kind heart and thank you to Bobbi for letting us meet the girls and be apart your practice!!

 #teamreed #whitemattermatters#vanishingwhitematter #Staystrong

Team Reed Blue Out Volleyball Game

I am playing catch up, back in September the wonderful Jesup Volleyball team held a Team Reed Blue Out Volleyball Game in Reed's honor.  I coached at Jesup for seven years but have involved in the programs since I started playing in 7th grade.  We were very touched that they wanted to include their number one littlest fan in the team and have a special day for him.  There were shirts and headbands sold, everyone was asked to wear blue and a small presentation was made in between games to Reed and our family where we were given a donation for the Team Reed account and Reed was given a volleyball signed by all the players and coaches and a balloon.  Awareness is the answer, we love our community and all the support they continue to show us.  I truly believe we will see some for a treatment in Reed's time.  

Dear Children's Medicine Makers

Dear Children's Medicine Makers,

Just some thoughts from a mom, now I am not sure if maybe you all don't have children, or maybe you are not testing your products out on children, or maybe just maybe you are just that lucky that you find the only kids in the country that actually like your products.  But seriously what is with your flavoring system, would it be to much to ask to just not make children's medicine not taste like anything at all.  If water flavor is a flavor could we just make all medicine taste like that.  This would make the famous suggestion of mixing the medicine with juice or milk or water a lot easier!  Or here is an idea sole based on my opinion I would think most toddlers switch to apple juice first maybe you could make your medicine taste like apple juice.  I am not sure who came up with the great idea to flavor medicine like cherry or grape but try your own product it doesn't taste like either one of these things.  And to further the thought whoever thought to put red dye in the medicine you should be fired this is just a for-sure way to get stains on the child's clothes. 

So I thought I would suggest some product ideas for you to consider, pediasure has got the right idea with there product made into Popsicle form however my child doesn't like the flavor I am sure there are kids that do.  In my opinion if we could get all children's medicine in Popsicle form as an option I would probably pay two or three times the amount as the regular form.  Here is another idea fast dissolving tablets or even better Listerine made a fast dissolving strip some years ago and pretty much once you put these in your month there was no spiting it out.  Could we get children's medicine in this form PLEASE. 

Thanks for your consideration from a mom who is tried of forcing medicine down my child's throat only to have him spit it out anyways.  Your product doesn't help if we can't get a child to swallow it!

We Love the Park