Craniofacial Team Meeting (Tobias's Journey)

A couple weeks ago, we drove to Phoenix for our long awaited craniofacial team meeting.  I have had this scheduled since the same day we found out he has Moebius, so there was a lot of anticipation leading up to that day.  Our appointment was set to start at 1 and finish at 5, so we knew it was going to be a long day full of information and boy was that an understatement!!

When we arrived, we first met with the feeding/speech specialist.  Going into this appointment, I was worried because it is common for kids with Moebius Syndrome to have trouble swallowing.  After watching him eat, she said he was doing great.  As we know, he isn't able to utilize his entire mouth, but he is doing really well at using the parts of his mouth that he can move.  As far as feeding, she gave us the green light to use solids.  We have to start his on level 1, which is specifically for babies who are not sitting up yet. Update: HE LOVES IT!!  Then we talked about speech.  She was impressed by how social he was.  He says mama and screams, so she was happy to see that.  She let us know that in the future he will have a hard time with harsher sounds.  So for example, dada might sound like nana.  Basically D, K, G and P sounds will be harder for him, but over time he will be able to do it!

Next, we saw the orthodontists.  They checked out Tobias's mouth and spotted his first tooth growing in.  Then they informed us that we should already start taking care of his gums and teeth that are growing in.  For his gums, they said to get a gauze and just wipe the gums down.  And for his his little tooth, we can go ahead and brush it.  They emphasized the importance of getting a toothpaste with Fluoride in it.  

Another surprising tip they had for us, was to avoid letting him fall asleep while drinking milk.  I guess when a baby/child falls asleep with milk, the milk can sit in the back of their mouth all night and the sugar can cause decay to those back teeth. So instead they want us to use water when we see he is about to fall asleep.  The last thing we learned, was that his labial frenulum might need to be cut later on in life.  That is the tissue that connects out upper lip to our gums.  I had that same surgery done in junior high, so that will be an easy surgery when that time comes. 

The psychologist was up next.  We did not talk with her for long, because Tobias isn't old enough for her to evaluate him.  Instead, she just asked how we were doing emotionally during this experience with him. 

Once we saw those three, we had to go to our very own room, where doctors were going to rotate in and out for the last few hours.  First up was his plastic surgeon (the one who first diagnosed him with Moebius).  Originally, she wanted to do his hand surgery when he is 6 and 9 months old, but she informed us she wants to do it when he is 9 and 12 months old.  If I havn't mention it before, those surgeries are to cut the webbing in his fingers.  

Then we talked about his Moebius.  Back when he was diagnosed, she told us about the reanimation surgery to make him smile, but that there wasn't a surgeon in Arizona who would do it.  Well, it turns out in January, there will now be a surgeon who is certified to do that specific surgery.  I asked her if it is considered cosmetic or reconstructive for insurance purposes.  To our delight, she told us that surgery will be fully covered because it is in fact considered reconstructive!! That was a HUGE relief for his dad and I because it is 2 separate surgeries, (1 for each cheek) and we were already wondering how we were going to save enough money for that. 

Next, we talked with the geneticist. She let us know that his genetics test done while he was in the NICU came back normal.  Which was no surprise since Moebius is not a genetic disorder.  She also said she wanted to put in an order for his neck and spine to be checked.  The thought of that totally freaks me out because I know there is a strong possibility something could be wrong.  Tobias is really having a hard time holding his head up and sitting up straight.  He has to be supported in order for him to sit upright, so I am anxiously waiting to see if that is due to Moebius giving him low muscle mass or if there is a deeper issue going on. 

 As I am writing this, I got a call that she also put in a referral for an eco to be done on his heart...which she did not mention at the appointment.  There has never been a mention of anything wrong with his heart, nor do I think Moebius has a link to heart defects, but of course we are going to get it done just to be safe. (So this mama is trying not to freak out about those two appointments)

The rest of the doctors and specialists who came in all reiterated what we were already told by the others before them.  Overall, it was a very positive day for out special little guy!