Teddy Bears

Have I said how much we love our friend and how we have so many amazing people in our life.  Sunday night we were relaxing watching TV when someone knocked on the front door, Jesse answered it and Kelly Wolf was there with a box of teddy bears made by a lady here in town Marjorie Rock.  Without me knowing it Marci and Kelly had bought some of Reed's baby clothes that I was getting rid of Marci and her sister are both expecting so I assumed the clothes were for their babies.  But to my surprise Kelly and Marci contact Marjorie who makes teddy bears out of clothes of loved ones to have some bears made for Jesse, Reed and I.  I just love them so much, I will cherish them forever.  Thank you so much Kelly, Marci and Marjorie.

Reed was very excited about them and they are getting lots of love!!

Team Reed Blue Out Softball Game

The other night was so much fun, as a family we have been participating or watching Jesup Softball for almost 25 plus years. My Grandpa still sits in the same spot at every home game. Last week the girls wanted to play for Reed and support him by having a Blue Out night, Reed got to throw out the first pitch and they girls gave him some bubbles and wore Team Reed headbands! Thank you to the softball team for the amazing night

what can we say...

What can we say about Saturday...what an amazing day with so much love and support surrounding us.  The morning started off with an 8:00 am tee time for the first round of golfers but the weather wouldn't corporate and the golfers had to be called off the course twice due to lightening.  Everyone kept telling me you can't do anything about the weather so don't worry about it but I couldn't help but be a little disappointed.  They decided to give the morning golfers the option to try and squeeze into the afternoon session or they could leave, I think 3-4 groups stuck around.  But the weather cleared up some and the overflowing afternoon group of golfers were able to tee off and get most of their 18 holes in if not all of them. I think in total between the morning and the afternoon groups we had roughly 32ish teams of 4 out golfing for Reed.

While the golf tournament was going on lots of people were hard at working inside, getting the auction, lunch/dinner, and raffle setup.  So many amazing items were donated for the live/silent auction and raffle. Every time I would walk into the room I would see another awesome donation that I hadn't seen before.  There were even donations coming in the day of the event.  They also held a raffle for the golf tournament as well as a 50/50.  There was a table set up with Team Reed items also, shirts, hats, golf balls, headbands, window stickers.  Every corner was used even Mr. Nick the balloon animal guy sat in a comer making balloons for the kids!

As the day and night went on we were just floored by the number of people that came out to the event.  While Jesse was finishing up golfing Reed and I took several trips around the course to see the golfers and look for daddy.  That was our time to take a little break from all the action going on inside.  It was definitely a little bit of an overwhelming day for us and I had to take a couple of minutes and just sit by myself or Reed and I would go out to the driving range and play.

Pretty much the rest of the night was a whirl wind of saying hello, thank you, and hugs.  I personally would like to thank Farmers State Bank for all they have done for Jesse over the years, at the conclusion on the night the bank presented Jesse with a custom made gun with Team Reed carved into the stock, leaving Jesse speechless and in tears.  This gun will be treasured by my boys forever and I know Jesse can't wait until Reed is old enough to get out and shoot it. 

I wish I would of remembered to take more pictures but it just slipped my mind. In the end everything turned out so good, the food was amazing, both auctions were a success and we all slept well that night.

Again thank you, thank you thank you! We have such amazing people by our side that have stepped up and lent a huge hand to use is so many ways.  We will never be able to thank you enough.

Here are a few of the pictures I did get or stole from other people.

Update

Well it's been a really long time since I have posted an update on how Reed is doing.  What we knew was going to be a roller coaster of ups and downs with this disease we have seen again some digression in his walking.  He has started to need more help walking usually always a helping hand to hold and very weak ankles.  Maybe this will continue this way maybe it will get better again.  However with that being said the walking is still the only visual sign we have seen of this disease.  We get asked often about is braces and how they are going, well they aren't :) He hates them and has a total melt down every time we try to put them on him.  We don't push the subject ever though Jesse and I both believe that the weakness in his ankles would greatly improve by using the braces.  He also doesn't like them because they prevent him from sitting in his favorite sitting position "the W sit" which we know is bad but that also gives him the most stability when sitting so again we don't overly push that subject either when making him change the way he sits.  Maybe this is wrong of us but we have the fear because of things we have read that stress can cause episodes or digression to increase so we are having a hard time on where to draw the line, the terrible twos also doesn't help with this.  We also believe that once he maybe understands more that the braces are there to help him them maybe he will give them a chance.  

Walking through Grandma and Papa's garden

Picnic Dinner at Fontana

The therapy we go to weekly has been a little rocky lately Reed has not been a very willing participant at therapy and he usually glues himself to our sides.  We have tried to sneak out of the room knowing that this once helped him but he has caught on to this and he usually doesn't take his eyes off of us for long.  No has become a favorite word for him and he usually uses it often in therapy.  Our therapist if amazing and keeps pushing on and tries to get him to participate but he is flat out mean to her at times and we can't help but feel bad for her even though we know she is probably used to this.  Hopefully this phase ends soon.  Speech therapy however is going great he is learning and using new words daily and is starting to communicate really well at least to us and those that are around him often.  

Golfing with dad

Rare moment when he was willing in therapy

Friday I received a call from Iowa City and the ten week tests that we have been waiting on to hopefully give us a type of Leukodystrophy came back as inconclusive.  Which means still more questions, still more unknowns. Of the five genes they were testing they found that one of the genes had a recessive gene that had a mutation in it however you have to have two recessive genes that have a mutation in order for them to make a diagnosis.  The other four genes came back as normal. At least this is how I understood it.  So what they are doing next is an addition/deletion test on that gene which will take another two weeks, but we will have the results of that test back before we visit in person with Dr. Perlman on July 2nd.  At that point Dr. Perlman said that if the addition/deletion test comes back negative then Reed's DNA will mostly be off to Belgium for the world leader in White Matter Disease to way in on Reed's case. Dr. Perlman continues to consult with the doctor in DC, and we continue to also work directly with them in getting them the information they need for research.  We will all be getting a blood draw on Monday to be sent off to DC.  Dr. Perlman said to me that they are a lot of doctors and researchers talking about Reed and his case which as a parent I guess is a double edge sword of course you don't want doctors and researchers to be talking about your child but I guess if you have to have doctors and researchers talking about your child I guess the more brains the better. 

New bike helmet

Working on his care

Again thank you so so so much for your continued love and support and of course prayers and kind and positive thoughts.  We hope you all can make it out to the golf tournament and auction on June 20th, there is more information about that at the top of the page if you haven't already heard about it.  Also there will be a Team Reed Volleyball Tournament on July 25, there is also more information at the top of the page as well. 

Cool Dude!

Someone was jealous of the new baby at grandma's house