Written by Mike:
Luke and I finally met with the Neorologist today. The report was mixed. The Doctor had to play catch-up, not knowing Luke and his compelling story, as well as his huge improvement. I sometimes forget that to people who haven't seen him over time, he still seems sooo delayed.
So after gathering the history, she tested his reflexes (great), his weight- 26lbs (double what he was when we got him!!!) and his height (36 inches baby!), and all.
Incidentally, his drooling has come to an almost complete stop. Score!
I was feeling pretty pumped.
Then she spoke.
"I want him to gat an MRI, of course he'll have to be sedated (#4). I want to see if there is any damage to his brain causing the delay in speech. If we don't see anything, I want to do some chromosomal testing."
"Why?"
"Whatever is causing the delays has to do with his brain because his reflexes are fine. Also (and I quote) his face looks a little funny to me"
(Grrrrrrrrrrrrrrrr)"How do you mean?"
"His ears kind of stick out, I don't know, it could be the lack of use in his face muscles, but I want to check it out."
Her bedside manner was not great, I had to ask several questions to get to what she meant. Essentially, he has delays and she wants to rule out brain damage and genetics rather than assuming his delays are the result of malnourishment.
No surprise there. In my heart I was hoping she would just say "he's doing so great and catching up so quickly you have nothing to worry about." Wishful thinking, I know, maybe a little delusional on my part, but what can I say.
However, it's going to take me a while to get past her saying that our beautiful little Luke is funny looking.
Funny looking, my butt.
Please pray that the report from the MRI is spectacular.
Anne arrived in Beijing this morning and is currently asleep. So far, she can't blog, but she can email, so I'll be keeping the blog up. Her trip was uneventful, though she reports that Korea is spectacular and their Air Lines is to die for, with flight attendants who appear to be recreating the "Be Our Guest" number from Beauty and the Beast.
9 comments:
so glad to know that she arrived safely. don't let the dr. visit get you down!
Luke absolutely does NOT look "funny". I think he has made unbelievable strides in development and ability! FWIW - a neuro doc here told us Kenzie looked like she had down syndrome. You've seen her. Not a chance. So - take it with a HUGE grain of salt and wait to see what the MRI says. :) I'm so excited to read about Anne's journies - I'll be eagerly checking in on your blog! <3 Miss you all!! Praying for everyone too!!!
Luke is a doll and some doctors think that people appreciate their random opinions. One neurologist told us all babies in China have flat heads from being left in cribs all the time. He presumed to think I need his random opinion about his take on China. Luke has come so far. A very good neurologist told us God designed the young brain to re-route areas of damage to areas that can take over. Just look at what Elijah can do and he has a small fist size area of damage. Take Care!
You are a strong parent. I thinkI'd have smacked that doctor. Funny looking. First of all, Luke is a GORGEOUSLY handsome boy with a smile that glows. Second, there are a hundred ways the doctor could have explained concerns without calling your beautiful son funny looking. Ack!
What a quack!
Best wishes for a smooth MRI reading!!!
Crazy that a doctor told you that your child is "funny looking"....crazy. For the record I have noticed that our daughter and many of my friends daughters have ears that stick out. And they are just that ears that stick out....and are not linked to any "syndrome".
Praying for you all! Tell Anne I said Hi I am leaving on Thursday but I will just miss her in Guangzhou-boo-hoooo! Thanks for posting for her!
Okay - I've been following your blog for some time - and I've never posted because I don't want you to think I'm some strange blog stalker - but I have a friend who adopted from China and when you start clicking on the links to other people's blogs, you get hooked on the compelling stories. . .
But this post compelled me to comment.
Luke is beautiful. And perhaps he has ears that stick out. . . but so does my beautiful son. And when he has a fresh haircut, they REALLY stick out! Besides that - my son was also informally (no neurological testing) diagnosed with apraxia when he was a year old. And, like Luke - his favorite utterance (and ONLY utterance for a long time) was "bah" - I so identify with loving to ask "what does a sheep say!" Daniel never babbled - the only noise he made was to cry or laugh. He never cooed, etc. When he was a year old we had him evaluated by the early intervention (in IL) and he qualified because even though he clearly understood what was being said, his expressive language skills were on par with a 3 month old. This was from a full-term birth, excellent pre- and post- natal care, etc. He could wave if you asked him to wave - but had no idea what to do if you asked him to say "bye bye." (A typical non-verbal child would wave.) He could clap on command - but did not know that clapping meant "yay!" At 13 months he started speech therapy. At 18 months he had a handful of utterances - and "bah" could mean ANYTHING that started with a "b" sound (as well as several things that didn't). Sometimes he would gain a sound, only to lose it, and this - along with the disconnect where he didn't realize he could use his hands to communicate - led two different speech therapists to suggest that we were dealing with apraxia.
Now - while Daniel's issues with apraxia were mild - it took him much longer than his older siblings to speak clearly, but we had an explosion at about 28 months. There are still times were I can see the delay - some stuttering, searching for the right word, etc.
I've been told that neurological testing is the only surefire way to rule out other causes for the delay and to give a more definitive diagnosis of apraxia - and I pray that's what happens in Luke's case. Early intervention is the key. . . and you have done so much for Luke in this regard.
If you haven't already found this site - http://www.apraxia-kids.org/ - it's a great resource.
God Bless - and thank you for sharing your stories - they are a great inspiration to many, I'm sure, but especially to those who are prayerfully considering international and/or special needs adoptions.
Mike, she is clearly an idiot. I can't imagine how she got through medical school. Have you seen her diploma? Is everything spelled right on it? Luke is one handsome dude, and we've thought so since the day we met him.
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