Friday, May 10, 2013

Croup is poop.

Sorry, I couldn't resist.  Besides, I hate trying to title my posts.  And James has croup again.  At least I'm about 99% sure that's what it is.  He woke up a few nights ago with a ragin fever, and then the coughing started.  It's not quite as bad as last time, thankfully.  And we have the medications they gave us, so I've been giving him those.  But we've had several nights of not very good sleep, and one incredibly clingy boy during the day.  Plus Liana has been sick all week too, with strep or something similar.  But, praise God, both kids felt well enough yesterday for us to make it to our two appointments that I really did not want to cancel.  (Today they are just laying around though!) 
Our morning appointment was with Dr. Chi, our ENT, to go over the CT and MRI we had done last week.  Structurally James' ears are perfect, which I find very ironic since those are the things that don't work, and he has so many other abnormalities that don't affect much of his day-to-day like.  But it was very good news, because it means he is a candidate for cochlear implants.  (I know some people reading this might not agree with our choice to go this route, and I respect that.  But it's what we've chosen and I hope you will respect that.)  So now we just have to finish out the hearing aid trial, which is completely pointless since they do absolutely nothing!  Dr. Chi did recommend having tubes put in, as the CT showed fluid behind both ears, and he has had no ear infections that I know of since being home.  So that will be done at the end of the month, and he will also remove the skin tag on the inside of James' left ear.
Our second appointment was at the Child Development Unit at Children's.  We didn't learn a whole lot, as she didn't do any actual testing with him.  She just examined him and all his abnormalities and asked me a whole bunch of questions.  She does want to do more extensive developmental testing than what he has already had, and she recommended we do some genetic testing as well.  She is fairly sure that all of his anomalies are connected, and genetic testing could give us that connection, as well as add more pieces to the puzzle that is James.  Having a diagnosis of sorts could help us identify cognitive delays or disabilites, and help us know how to help him.  I really worry that there is some kind of cognitive problem, based on some of the things is he still unable to do, like draw a square or easily trace lines on a page.  He also struggles with simple matching puzzles, and jigsaw puzzles are out of the question.  But he CAN sort by color and shape, and he's mostly able to sort by size.  Counting is still not there, nor are most colors.  It's so hard to know what is just delay from lack of exposure/teaching, and what is a genuine problem.  Hopefully once he starts therapy we'll get a better idea.  In the meantime I beg God for wisdom, grace, and patience!! 

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