a new challenge... part 1

This post has been in draft status for a while. I keep coming back to it but have never completed it to share. I don't know why - I was probably digesting. I know I was praying. But I'm also a reader; a study-er. I crave knowledge and I'm sure I was so intent on knowing as much as possible that it encompassed the situation. But now, we've seen 3 doctors since August, most recently yesterday, and people are asking, so I guess it's time. 

You probably all know that my Beebo has always had the cutest little crooked smile. 

Well, apparently that crooked smile was indicative of a bigger problem. After being sent from dentist to orthodontist to oral surgeon to a local craniofacial doc to a top craniofacial team out of state, we have a confirmed diagnosis of Hemifacial Microsomia. HFM is a birth defect that occurs during the first 6-8 weeks of pregnancy (interestingly enough, at the same time as inner ear structures form... coincidence for Beebo and Sis? Hostile uterus, party of 1.). 

With HFM, basically, 1/2 of the face, typically the lower face, is underdeveloped and does not grow normally. It often affects jaws, teeth, cheek tissue, orbital size, ears, and facial nerves. A commonly accepted range of severity regarding the mandible (jaw) is the Pruzansky classification. In this system, Beebo has been diagnosed as a IIB (moderate) severity. He has a full lower mandible, but it is very small and deformed. 

Pruzansky Classification

Beebo's face

What we know so far about Beebs' HFM:

• His lower left mandible is not fully developed and is not growing adequately or in proportion to the rest of his face
• His left eye socket is smaller
• His left upper mandible is misshapen
• Some adult teeth are unable to erupt because they are not in the right places and there is not enough bone to support them
• He has less fatty tissue and bone structure in his left cheek
• His left ear is folded

BUT, let's talk about the positives in this, because they are there! His left eye has perfect vision and his left ear is present (many kids are missing an ear) and hears just fine. He has no facial nerve involvement and thus no paralysis. He does not have any involvement of the soft tissue of the mouth, throat, or trachea that impairs his speech, swallowing, or breathing. These are all things that are common issues with his level of severity, so we are grateful. So very grateful!!

As he continues to grow, his appearance will continue to change, as will the functionality of his jaw, his bite, possibly his speech. We have to medically intervene and that's where this momma begins to shudder. I'm trying to see the big picture. I'm trying to feel blessed in my life. I'm trying to cling to those positives listed up there. But, right now, I feel sick. I feel cheated. I feel sad and angry, then little bits of relief that it's not worse. Mostly, I feel like stomping my feet and shaking my fist and shouting "This is NOT fair! Haven't my kids been through enough? Why does my body fail these kids?"

I've been in the midst of these feelings before. They will leave and then out of the blue, they will try to come back. They aren't welcome here. They aren't my friends, but realistically I'll let them in to stay for a while before I kick them out. I know this cycle well.

I'll update on the plan of action in my next post. It's difficult to have anything definitive yet, but we do have a straw man outline of the next few years.