Whether you turn to the right or to the left, your ears will hear a voice behind you, saying,“This is the way; walk in it.” Isaiah 30:21

Monday, September 30, 2013

Annual Craniofacial Appointment

This has been a hard post to put together. I have always been very transparent about Grant's condition, but I'm always hesitant to put it all out here on the internet. But then I receive an email-usually once a week, from someone who is going through something similar with their own child, and I decide to go ahead and hit the publish button. 

For whatever reason, God always chooses to gently (and other times, not so gently) break us up and shake us up from the comforts of our little world during this time of year...usually between the months of August-November. Three of Harp's four surgeries have been during these months. The life-changing opinion that he had cancer was during these months. And during these months is when Grant is due for his annual craniofacial work-up in Chapel Hill, among several other tests in the next few weeks.

Last week, Grant had his check-up with a team of doctors at the Craniofacial center at UNC-Chapel Hill. 
You make your rounds and see specialties which include: Speech Pathology, Oral Surgery, Plastic Surgery, Pediatrics (nurse), Ear-Nose-Throat, Child Psychology, as well as a separate team of doctors for dentistry.

To be completely honest, I wasn't fully prepared for this appointment. You see, we have spent months not really thinking about his syndrome. It hasn't been on the forefront of our minds; it hasn't really been an issue. The only doctor we see regularly (every 3 months) is his ophthalmologist. And even though its not common to see toddlers who wear glasses, it isn't uncommon to see children wear glasses...so I never really feel like he is all that "different" from other children. 

Before I go on, I just want to put this out there. It is very, very hard to sit in front of multiple doctors in one day, and listen to them point out every single thing that is wrong with your child. It is hard. 

The doctors are kind, but they also do not sugar-coat things for you. You have to hear several times that the  beautiful, flawless face that you cannot possibly imagine loving more then you already do, is anatomically wrong. If you have any doubts or denial issues going in, you certainly do not, leaving. 

So...just a quick, bland update from some of the specialties: 

Speech: the hardest appointment of the day. At Grant's 18m check-up last month, I told his ped that I thought he needed speech therapy, sooner rather then later. I was at peace with this decision, and overall, wasn't too concerned about him catching up. At the Craniofacial appointment, the pathologist made it very clear to me that he had a "severe" delay and needed intervention immediately. Lump in throat. After a hundred or so questions, she also introduced an idea to me that literally made me sick to my stomach. She thinks (this is NOT an official diagnosis) that he has a Sensory Processing Disorder. I'm not a doctor, but I AM his mom who is trying to look at this realistically...I'm not entirely convinced he has SPD. We have a full speech/development evaluation tomorrow, so we'll know more then. But if anyone is out there reading this, I ask-beg-that you pray that the SPD diagnosis would be made abundantly clear. I do see some symptoms, but not many, and I do not wish for a label to be attached to him that simply isn't true...And I also want to be able to accept and embrace a diagnosis without any doubt. 

Plastics/Oral: This is a wait-and-see game with these two specialties. Will he need surgery? Probably. But we have to wait and see how his face develops, specifically his jaw. This next year will be very important to what treatment may be needed for his first round of surgeries. He also has a sub-mucous cleft palate, but it is not severe. And once he starts to lose his baby fat, they can do fat-injections to make his face more symmetrical. 

ENT: Not sure if I've ever expressed my concerns on here about this before, but here goes: I have thought for some time now that he may have hearing loss in one of his ears, specifically his left ear. I'm not going to go into why I think this (I could write a book), but it is something I have been concerned about. His ENT at UNC wants us to come back in Feb (when he turns 2, and it is more accurate) for a full comprehensive test to determine what he hears. I think the specialist we are seeing tomorrow might do a hearing test too, but I'm not entirely sure. The ENT at UNC is by far my favorite doctor. She is so enthusiastic and passionate about what she does. The only thing she noted (which we knew) was that his left ear canal is very small. I also should note that after a quick test (can't remember the name), the ear drum in that ear does not move as it should. 

After the first visit that morning with the speech pathologist at UNC, Kane and I sat in the waiting room with other parents going through the same thing. I didn't make eye contact with anyone because I knew that one reassuring smile from another mom would be my breaking point. The only thing I could think of to calm me down was that the littlest love of my life was fearfully and wonderfully made by the Creator of the universe. And that is the same truth that I tell myself today. 

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