Tuesday, September 15, 2009

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!

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


  1. Oh Jennifer, I have tears running down as I read this. Logan is in the perfect place. You are the best family for him. Praying for everything and that God would give you peace! I had totally forgotten that Logan was Cleft-lip/palate kid. Miss you guys. Sending hugs from Omaha!

  2. Hi there,

    I have a daughter with autism and global apraxia. She just turned 3 and she is completely non-verbal. It is frustrating and alot of work, but what I can tell you now is with patience and persistence, she is starting to imitate simple sounds. Mostly vowels, but this coming from a child that was essentially a mute is promising. The intent is there.

    Also, there have been promising gains with the usage of fish oils (Nordic Naturals 3.6.9) as well as vitamin E supplementation. Recently a research article was published on these findings. We are currently using the supplement SPEAK (by nourish life which has fish oils and vitamin e) under the supervision of a physician. You should look into it. It has been most helpful.

    People tend to give up on our kiddos, but they really know so much more than they can show us. We just recently discovered that my daughter knows the alphabet, numbers 1-100, shapes, colors and she can identify words from a choice of 3 when asked. I wish you all the best with Logan. Just love him, believe in him and please continue to fight for him.

    All the best,

  3. oh Jennie, Major {{{{Hugs}}}}}}}

  4. Hey Jennifer!

    Sorry about the tough week. I know it sounds so overwhelming now, but you aren't alone and you don't have to tackle everything all at once. Break it down into small pieces and go from there.

    In the 3rd Grade, Cullen started at the Christian school he's at now. He came from a small Montessori school. We knew it would be rough, but things got really bad. So bad in fact that I started demanding answers. We eventually got them. Cullen has CAPD. We didn't notice the issues so much in Montessori because of the teaching methods. It has taken lots of work, therapy, patience, and understanding teachers to get where we are today. With CAPD, you have to learn in a way that works for you!

    Cullen is now in the 7th Grade. He has earned High Honors for the last 2 years! He knows he has to work harder than most of his friends. He knows that verbal directions work differently than written directions (verbal works better for him!). We have permission from the school for Cullen to dictate essays and papers for us to type. He has learned what comes easy (math, music, art, science) and what doesn't (reading, language, vocab - his worst!). For Cull, it was a matter of relearning HOW to learn. I know you are dealing with more than CAPD, but I just wanted to let you know that CAPD is something you can learn to work with.

    You aren't alone! Your friends, family, and God are with you. Take it in small steps!