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