Cinci trip

Well, We made it to Cincinnati finally! I will start with our VERY good news. Our van is repairable! It was going to be $614 to fix it. HOwever, Jeff remembered that we had an extended warranty on the van and it is STILL good! Thank you God!!! So, we only pay $100 for all the work they are going to be doing! We told them to go over it with a fine tooth comb to be sure that's all that needs repaired while it is there!

Now onto medical. Our trip brought mixed feelings for us. We have a direction we are going now, but not sure that it's as we would like to go! Apparently it appears Joey is storing fat in his muscles. Now this is all taken from labs and testing done at Riley. So, our confidence in these thoughts are NOT really high as we are finding a lot of what we were told there is NOT correct. THey are going to have all the labs and tests sent there and go over them with a fine tooth comb and re-exam many of the slides and what not of the tissue samples that they took. They are thinking he may have something called Lipid Storage Myopathy. There is a couple of MAJOR blood tests that Riley never did that they will be doing that will give us answers in this direction as to whether this is possible. From their, they are also thinking an MRI/MRS of his complete body. Head to toe. This will show them too what's going on with the muscle and may mean we'd avoid another muscle biopsy being done. They really DON'T want to do that to him. We don't have a lot of understanding of what this all means, but we do know it is a direction to go. Please pray for wisdom. The doctor that we saw yesterday is going to consult with Dr. Degraw and Dr. Wong. These doctors specialize in this kind of stuff.

They were VERY encouraged with Joey's energy though. One of the down sides to the disease that we are talking about is that they have major energy depletion. In this case, he felt that Joey was hyper active. Umm... he was seeing Joey at MILD activity! Ha! Joey really does NOT have energy crashes so, that's positive at this point! There is something still going on in his little body, so we do have to push forward, but we have more confidence that it isn't as severe as it once was. So, this is good and encouraging! God has worked in His little body and we are waiting to see the complete work! :)

Miss Abby did AWESOME yesterday at the doctor. we were so proud of her! Thanks for all your prayers. Our next trip to Cinci is May 13th. This will be for a video swallow study. ~Mindy