And the penis chronciles continue

So it appears Spencer has a tethered spinal cord. I've been told by multiple people the surgery isn't too bad, but it scares the hell out of me. Figures a routine MRI to check his butt dimple would turn into possible neurosurgery. That's my boy. Anyohw, I'm setting up a neuro consult so hopefully we'll know more soon. It could explain his foot problems.

Anyhow, the penis chronicles continue. Apparently his cicumcision went rogue and has to be redone. He about gave the urologist a heart attack because he couldn't find some glands or something. Then he found them and had a mini melt down because he felt like a failure. At least it's nice to know I wasn't crazy. We also have him booked for surgery next month to bring down the first testicle. We did discuss that Spence has a hidden penis that will require more surgery. Our urologist and I are like BFFs.

They Found It!!!

So they have finally identified the gene that causes Ohdo Syndrome. I plan on having Spencer tested as soon as they are available. I'm scared but excited that we will finally know for sure if he has it or not. Apparently the change is on Chromosome 10, KAT6B. It's amazing how something so small can cause so much damage. I can't believe they finally found it. For some parents, they have been waiting to diagnose their kids officially for over 20 years.
Good news is, that if it is Ohdo, that it isn't something that Jimmy and I caused, which means in theory no future spawn will have it. Not that I wouldn't love another Ohdo kid just as much, but I'd rather not have a second child with it. I can't put another baby through what Spencer has had to go through.

Brush the baby

Today was Spencer's first day of brushing therapy. We're hoping it helps him a bit with his sensory intergration disorder. He pretty much cried through it all today, but his OT remains pretty optimistic that it will help him. We have to brush his back, arms, and legs, and do compressions on the joints every two hours. So now we are trying to do feeds every three hours, brushing every two, incorporating different tactiles, and trying to get him to eat orally. Since Jimmy and I are on opposite schedules, we are both trying to tackle it alone. It's going to be a rough few weeks, but hopefully it will help. We are going to work on hands and such later on.