October 18, 2007

It's been quite a while since I've updated the blog. Things had been going nicely since Presley's surgery in February. He was doing well, slightly delayed on development, but nothing too concerning. He's been in physical therapy for a few months now to try and improve his strength.

We visited Shands a couple of months ago, for a standard follow-up, which we'll be doing regularly. There was concern about Presley's head growth. His forehead had become very pronounced (they called him a thinker), and so Dr. Pincus (his neurosurgeon) asked for an MRI. The result appeared to show an excess of fluid on the exterior of his brain, which would probably resolve itself in 18 - 24 months. The name of the condition is benign extra-axial fluid. Key word to us was benign.


We had another visit with Dr. Pincus yesterday, and things appear to have changed. Now, they are much more concerned about excess fluid IN and surrounding the brain. It's a condition known as hydrocephalus ("water on the brain"). While he is happy and doesn't appear to have any discomfort, as some do, there is great risk with this condition. It could be the source of his developmental delays, and if untreated, has the risk that I prefer not to comment on.

The doctor's office should be calling us with a scheduled date & time for a follow-up MRI (it should be in the next 2 - 3 weeks). We'll have a two day trip to Shands, the first day they will perform the MRI while Presley is under anasthesia. The second day, we will meet with Dr. Pincus to discuss what needs to happen. If Dr. Pincus is correct, which he seems to be pretty confident of, we will be discussing the procedure that will need to take place. The primary procedure that has been discussed so far is placement of a shunt. It's basically a device that is placed inside one of the brain ventricles, with a catheter running down into his abdomen. The goal is to release the excess fluid and allow it to flow to a location where it can be absorbed by the body. It appears that this will be a lifelong condition, and he will need his shunt replaced periodically throughout his life.

While this is still not the diagnosis, it seems to be leaning towards that. Needless to say, we are extremely stressed about this. The MRI can't come soon enough so we can find out what needs to be done and take any actions as soon as possible.

On a brighter note, we picked out Presley's eye glasses last evening. He is pretty darn far sighted, and still has the nystagmus (rythmic eye movement back and forth) and strabismus (crossed eyes). The pediatric opthalmologist is hoping that the glasses will help with the strabismus, but it seems that he will still need surgery on both eyes in the future to help straighten them out.

We can tell you this ... we're just glad we have a happy little boy!! Through all of this, he smiles all the time. More proof that ignorance is bliss.

Next time you sit down to say your prayers, please say one for Presley. He's been a trooper, but could sure use all the support he can get!!