Sunday, August 30, 2009

Wes is a big school boy! He is now an old pro with one whole week behind him. First day, no tears, second and third day were screaming and being torn from me, and the fourth day was the hardest on me as he walked to his little seat holding my hand trying to be a big boy with his little tear filled eyes and trembling bottom lip. Yes, that was the day that tore my heart apart. Tomorrow morning brings a brand new week. He is doing great. It is nice to able to peak in on him occasionally, but there are some anxieties. It was hard bringing Wes to someone new, hoping and trusting that she will give him what he needs, take care of him, and know just how special my baby boy is. Of course he has already turned on the charm and is surely to win the hearts of Mrs. Noble, Ms. Debbie, and Ms. Erin.
We were able to squeeze in a little fun before beginning school with Thing 1, 2, and 3 at Universal Studios in Orlando.
Hard to believe it has been a year since our last trip to Chicago with our pint size pirate. Next week, we will be making the trip once again. Before beginning school, Wes had a MRI at Shands, which has brought many questions. There was a time when each fever, temper tantrum, unusual eye movement, change in breathing caused me overwhelming concern. I felt as though I was always waiting, worrying about what lie around the corner. Slowly I have stepped away from that place and found some comfort with our new normal, only to be snatched back with the shock of change. I expected his MRI to be much like the one last year with some concerning issues, but nothing new. This is not what we got.
Before anyone asks, we don’t know what it means and can not explain anything. We have a report, but only a doctor can tell us what that means. At this point anything we think is only speculation. Most likely, if others were to read the MRI, it would be like reading foreign language. Of the issues noted, the most disturbing was that Wes now has two new encephaloceles in his frontal sinus. Both containing brain and showing some damage.
For now we await responses from Wes’ neurologist, endocrinologist, and ophthalmologist for answers on the other issues. The neurosurgeon would like to see the actual scans and will discuss these with us next week. So here we are waiting…