Reed Update

I wanted to actually take a minute to write about how Reed is doing, I realized I have done a whole lot of posting for help with research but not a lot of updating about Reed specifically lately. Reed is doing okay overall physically, I didn't realize how far he has slips until I made that video last week just a few short months ago he was still taking a few steps on his own he is no longer able to take any steps on his own anymore but does try with help from us under both arms at times. He can still stand along furniture and can pull himself up along the furniture but not up on the furniture any more. His stand does look pretty painful however but it must not be to him because he doesn't complain about it. To put it into picture for you he pulls himself on the tops of his feet think almost like a ballerina but not on to the tops of toes but top of foot, then he adjust his feet to the bottoms and sometimes needs help fixing his feet (see the picture if that helps). The next problem here is his right foot has gotten so bad that he rolls that ankle in and then stands on the outside of the ankle, ouch. See picture. We had a check up in Iowa City last month and things seemed all be okay with the doctor but he had some concerns about how tight Reed's legs/ankles were getting and encouraged us to really focus on stretching and also talked about night splints. All three of us also had our blood drawn and sent off to Amsterdam for the doctor over there to test, the labs here in the US were not able to find the mutated gene in Reed but the doctor in Amsterdam have some different technology so they are taking a look. What they have found is one mutation on one gene and one in another but not two in one gene and there has to be two in one for them to declare that is the gene that is causing the disease just the one mutation in one gene would not cause a disease (if that makes since). So back to his ankles this week I freaked out a little because his right ankle was so stiff I couldn't get his shoe on, so we are really needing to be more diligent about getting those taller braces on him even though he fights so much putting them on, we are also looking into those night splints but are worried about his sleeping with them since he isn't a great sleeper, so please pray for these things. We have noticed some more shakiness in his arms but it hasn't affected his ability to use them. His speech has come such a long way from a year ago and he is so smart even though he doesn't quite have all the words he needs to communicate sometimes he finds away and has an amazing memory! Overall I would still say things are pretty steady and we thank God so much for slow progression, I know deep down in my heart God will cure Reed and we are patiently waiting for that day! (It's a feeling this mama has that I know is to be) he hears us, he knows our cries for help and he will answer in time. Again thank you everyone for all the love and support, keep those prayers, good thoughts coming!!