Appointments and Surgery Update (Tobias's Journey)

Last week, Tobias had 3 appointments and one surgery.  The first appointment we had was for a echo of his heart.  I was not worried going into this appointment because there was no particular reason for getting it done.  His geneticist just wanted to check it out as a precaution.  I am happy to report that Tobias's heart is healthy.

After that, we had an x-ray of his neck and spine.  I was nervous for this one, just because of his low muscle tone in his upper body.  Since he isn't as strong in his core and neck, I wondered if that was because something was wrong in that area.  I talked to other Moebius moms and a fair few said that their children have scoliosis. The geneticist said his neck looks fantastic!! YAY!!  They did notice that his spine is slightly curved, but his doctor is not concerned at the moment and even said that is actually common in babies his age. But just to be safe, we are getting it rechecked in 6 months.

His final appoinment was for his eyes.  We saw a new opthomologist and were pleased to find out he has worked with 2 other Moebius children before.  Our last ophthalmologist hadn't, so he was just in the unknown as we were.  This new doctor actually didn't know we already diagnosed Tobias with Moebius Syndrome, so the first thing he asked us was how was his blinking and smiling.  So obviously I informed him he can not because of the condition he has.  I think he was pleased he did not have to break the news to us because as I said that, he sort of breathed a sigh of relief.  He gave us an updated eye routine.  We now have to give him anti-preservative eye drops every 2 hours and his eye gel at night before bed. This is because the gel were were giving him throughout the day actaully hinders his vision since it is so thick. This doctor also mentioned Tobias is far sighted so he will most likely be getting glasses in the future.

The biggest thing we went through last week was his surgery.  I am not going to get too detailed about it.  I'll just say it was on his penis and they were basically using stitches to straighten it out because his forskin curved it.  One tip I will give you guys is when you are scheduling surgeries for your babies, PICK THE EARLIEST ONE!  I had no idea until the day before that he would be fasting all night and all morning, so that was a total nightmare!  You can see in the picture that he was starving and exhausted from crying all morning.  When we were finally allowed to see him in recovery, he was so upset that not even 5 nurses couldn't calm him down.  But as you can see in one of the pictures, he was all better after I gave him some milk and his dad held him while he napped.

Right now he is almost back to his normal self.  He is a tad bit whiny throughout the day because his penis is very swollen.  So for now, we are just cuddling a little more and working out a little less.