Micah had an appointment at Children's last week. It was at the craniofacial/cleft palate clinic, which is also the plastics wing. We were there for none of the above reasons. The Downs clinic referred us to see the leading specialist in that field because he may have some insight on why Micah is not talking yet.He didn't.
This is very good news, and yet it's frustrating. I'd love to have an answer handed to me, preferably on a silver platter with a mint beside it. I just think that if we have a diagnosis other than Downs, we'd have something to work with.
We were told that he probably does not have apraxia. Sam is taking the good doctor at his word (he is an expert in his field, and a good one at that) and I am still on the fence about it. From what I've read and been told to read, Micah is exhibiting more signs of apraxia than not. Either way, it still doesn't really tell us anything that we didn't know, nor does it help us to help Micah.
Thank goodness for Prentke-Romich and their wonderful invention of a Voice for children who are speechless.
Children's Hospital recently built a brand new facility, and they moved into it a mere 6 days before our appointment. It is to be state of the art, a model for all future Children's Hospitals, and feature all the amenities that one would expect. It is indeed all that.
And now I will have the nerve to complain about the location of the new hospital. Who in their right mind thought it would be a good idea to put a Children's Hospital in the heart of a city where you've either gotta drive through stop lights for twenty minutes or avoid the stop lights on every block and drive a literal twelve miles out of your way to go around them? There is no easy way to get there. That will suck for those with a true emergency. I do not look forward to future visits there.
15 comments:
Totally off-topic comment alert:
Your photos are getting better and better and yummier and yummier. (I use "yummy" because I think my best shots have a buttery look and texture. Don't ask for any further explanation. There is none.)
But isn't it easier to park there? The only time I've been to Children's it was AWFUL. Not only was it nearly impossible to park, we ended up having to do Valet and then we got SO turned around trying to get into the hospital. (Not to mention getting turned around IN the hospital!)
I have to agree with the above: your photos are getting better and better!
Didn't you say a while back that you finally got him to cooperate with a hearing test? And he had a hearing problem? That would have a whole lot to do with it. Sometimes specialists can't see the forest for the trees.
Hmmm, I'm sorry I wish this could be easier.
And yeah, it's okay if you complain about the location...I mean you'll be there again but I'm glad to hear it's nice at least....
Love the pics from the earlier posts too...I'm behind. :)
Are you coming to the Children's in Pgh new in Lawrenceville? If so, I echo your concerns on all the lights to go through etc. I live right nearby and can't imagine having to drive a child there in an emergency. Granted, the hospital looks amazing on the outside and apparently (from a nursing friend) is one of the most amazing places inside, but the location may not be so great. However, dealing with Oakland traffic might be worse....
Karen Deborah - his hearing is definitely impaired when his tubes are out. When they're in he does pass a test. I need to be sure they're in more than they're out.
pghrugbyangel - we were at Lawrenceville and the location sucks. Oakland wasn't bad at all, just the tunnel traffic getting there during rush hour.
I agree that Lawrenceville SUCKS to get to. It's a full 25 minutes further for us because we either have to drive through downtown, or up 28. Neither is a good option. It sucks that the location was picked based on economics, without regard to things like THE ABILITY TO GET THERE.
Ugh.
I feel your pain. Here our Children's Hospital is in a lovely spot on the river...miles and miles (and miles) away from where anyone actually lives in the downtown/business district. A 45 minute one way trip...yuck!
That's the bad thing about things that are in high demand. They certainly don't make them for our convenience. I agree with Keri's adjective of yummy. Some kids are so yummy you just want to eat them up!
What a gorgeous photo of Micah. His sweet beauty through your tenderness shines through.
What a gorgeous photo of Micah. His sweet beauty through your tenderness shines through.
Glad the appointment went well... I'm with you on the frustration of wanting a REASON but not really wanting another "problem." I dither. Just trust those instincts. Mom's right.
That sucks that it's so hard to get there. I'm hoping that the trips end up being SO worthwhile!
By the way, I love that pic of Micah.
I took Peanut in a couple weeks ago to be evaluated for apraxia. It didn't go well. She was recovering from an ear infection and not cooperative. The therapist who was evaluating her was not very good with her and in my opinion made matters worse when Peanut was getting out of control. The end result was they could not officially diagnose apraxia but she suspected she did have apraxia. All in all, it was a frustrating, disappointing appointment and a complete waste of time. The only good that came out of it was she said we had a good IEP and didn't think we needed anymore therapy right now.
As with you and Micah, the journey continues ...
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