craniofacial clinic visit

See the scars on Logan's elbow and nose? Well, it seems that we should get used to them.

Yesterday, Logan had a visit to the Craniofacial Clinic at Children's. The reports were mostly good--everything looks great; he's healthy; no surgeries needed; and they don't want to see him again until next fall. That was the good news, and it came from all the doctors we saw. We were thrilled to know that what we see is truly what we get--a boy who is thriving physically.

The discouraging news came from the Speech Language Pathologist. Sara, the SLP, is an integral part of the Craniofacial team. As a a matter of fact, the SLP drives some of the medical decisions that are made about Logan's care, because she's the one who knows and understands how the procedures will affect his speech. Sara had great new for us: Logan does NOT need any revisions of his palate! His repair, though different than what would have been done here, is fairly complete and working like it should. She will continue to monitor it as he grows, but she believes that he may not need palate surgery ever. That was wonderful to hear. However, it was tempered by the discouraging news.

Logan has officially been diagnosed with Childhood Apraxia of Speech. (For more information about CAS, look here.) In his case, he has both oral apraxia and verbal apraxia, which means that both his speech and his oral movement is affected. We see that in how he eats, how he manages ice cream cones and popsicles and suckers. Disappointing, yes, but it was not a huge surprise. The discouraging part comes with the talk of "cure" or "treatment." For the best chance, Logan really should have speech therapy as many as 4 or 5 times every week. It is best if he has that much speech from a single therapist in an individual setting rather than in group sessions. Right now, Logan has speech once a week. Getting more will be a major challenge. Fitting it into our schedule will be hard. No, nearly impossible. It's not that I don't WANT to go, it's that Logan is one of 5 children here and my time is spread amongst them all. There are, after all, only so many hours in a day! :) Plus, each session has a copay, and to add more costs to an already tight budget will be hard too.

Along with a diagnosis of CAS comes the likelihood of auditory processing disorder, or central auditory processing disorder (CAPD) as it is known. It is a problem of interpreting the messages received by the brain, and Logan displays many of the characteristics of a child with CAPD. Because of his age, it's hard to get an "official" diagnosis at this time, but everything points to CAPD compounding his CAS. In a nutshell, it means that we have a little boy who doesn't always understand things coming in, and can't always get his mouth or his muscles (limb apraxia) to do what he'd like them to do. (Check out this post for that news. Since it was written, we have discovered that his fine motor skills are affected too. The things he does well, like cutting and copying, are likely 'splinter skills,' skills that develop out of sequence. They are frequently not transferable, and that's true in Logan's case. Just because he can write the letters in his name doesn't mean he can use those same muscle movements for another activity.)

Honestly? It's been a tough day. Hard to watch this little boy who so desperately wants to be like his siblings, to talk, walk, run, and play like Ryan, and know that without years of hard work, he won't make it. Even harder is knowing that even WITH years of hard work, he'll likely never totally overcome all the obstacles. The hardest part is that there's very little we can do. I know he's better off here, where we can (and will!) work with and for him to get him every service we possibly can. I know that he will succeed. I know that we've already readjusted some of our expectations, and set our targets for him in different places. Out for my run this morning, I found myself in tears as I poured out my frustration to God. We've got a lot on our plates right now, and Logan is just one piece. I'm feeling overwhelmed. But even as I struggle, I know that God is in control. This time, these struggles...they're here as part of the refining process. Now, if I can keep MY focus where it belongs--looking toward God instead of inward at the difficulties--it will also be a time of growth. These are mountains I can't climb. But He made them, and He can get us over them!

I WILL LIFT MY EYES
By Bebo Norman


God, my God, I cry out
Your beloved needs You now
God, be near calm my fear and take my doubt
Your kindness is what pulls me up
Your love is all that draws me in

I will lift my eyes to the Maker
of the mountains I can't climb
I will lift my eyes to the Calmer
of the oceans raging wild
I will lift my eyes to the Healer
of the hurt I hold inside
I will lift my eyes, lift my eyes to You