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Wednesday, April 23, 2008

Cough, cough! Ear Surgery and Manipulating Mama

Ellie is sick. It's her school break and the weather has finally turned from frosty to glorious but we can't take advantage of it. I can't believe how much snot she is producing and how often she coughs. Yesterday we had two doctors appointments (one initiated by me to get her listened to by someone who uses a stethoscope) and both times her temperature was taken and it was normal. Conclusion: she has a virus that she is fighting and has been fighting for over one week now. Today she had a 101.5 fever. She just wanted to sleep ALL day. It's worrisome.

The other doctor we saw was an Ear Nose and Throat (ENT) specialist. An Irish one named Doctor McGill. He was great and I am really glad we went though more than a little upset about the outcome. First of all we are going to have a sleep study done. He asked all these questions about Ellie's sleep like does she:

snore? yes
toss and turn? yes
wake frequently? god, yes
make this (he makes a quick in take of breath sucking kind of sound I couldn't duplicate to Dave) YES - ALL the TIME!
Oh, well that is what a sleep apnea sounds like.
great.

I have been worried about that for a long time. So it's good to be getting the study done. But if they think there will be more drugs prescribed or have Ellie hooked up to a CPAP every night for the rest of her life they are wrong! It won't come to that right? She doesn't sleep well now but she is certainly quite bright eyed and bushy tailed, rosey cheeked, mama I have had my eyes open for 10 seconds and will implode if I don't start playing NOW every morning... god help us.

So the second piece of bad new is that Ellie has a dead skin pocked on her ear drum in her left ear called a cholesteatoma that she will need surgery to fix. It may have been from the ear tubes but more likely because of her tiny Eustachian tubes that have not worked very well which I think is a complication of prematurity. Currently part of her eardrum is being sucked into the Eustachian tube creating a small pocket that dead skin is collecting in. Apparently this pocket is going to get bigger and bigger until it messes up those little musical bones in the ear that relay to the brain sounds from the outside world. Great. It won't happen tomorrow but needs to be addressed. The surgery will include taking a bit of cartilage from her ear to use to close up the hole once they remove the dead skin. Great. Sounds like fun. Not painful at all.

Sorry for the sarcasm but I am not in a good mood about any of this. Poor baba sick and seemingly getting sicker and with a surgery to look forward to. Sigh. And we have been doing so well lately threading the needle between the stomach bugs and multiple respiratory illnesses her classmates have unfortunately contracted. Through it all Ellie has been healthy, until now.

To her credit when she is awake between naps she is her sweet active self. She was delighted today to learn how to spell the characters on her Pooh toy: Kanga, Little Roo, Owl, Rabbit, and Piglet. It was weird though, I think she only spelled them because she thought I would like it - she seemed to already know them when I tested her. Also today I caught her switching the scene on the video she wanted and then asking me to put it back for her. She did this multiple times. At one point I asked her to wait a sec because I had to run and get the phone, when I came back she had switched the scene back deftly using her "weemote" by herself no problem, not a bother, sucking on her thumb looking at me innocently enough. Hmmmmm. I think she just wanted my participation....or something. Cute but scary as well, I felt a little manipulated. Not in a I feel bad kind of way, but more of a, I am in awe of you once again kind of way, like this is cool my kid has the cognitive chops to manipulate me! and then panic at, how am I supposed to parent you around that? Any thoughts or suggestions will be much appreciated. "Bob, I would like to use my first lifeline please!"

7 comments:

Anonymous said...

I am a mom to a son Ellie's age, born term, but very active and needing a lot of direction/supervision, a babe born two years before, about the same gestation age Ellie was that unfortunately passed away, and an older girl. I have long been curious how or if you redirect Ellie from behavior you do not want her to repeat. For example, my son might get a "time out" for purposely and interrupting me when his sister needs attention (which she gets a lot less of with him around :) ) I'm sure its different with just one child, and one with special needs, but I am curious that you have never really mentioned discipline before.

Do you think you would parent Ellie differently, in terms of her needing fairly constant attention, if you had another child's needs to consider? A ten year old with math homework, needing to cry on your shoulder about "mean" girls at school? A colicky newborn? I hope the question is not upsetting to you or insulting in any way, just something I have wondered about after reading your blog for a while.

Sarai

Bird said...

My roomate suffered from cholesteatoma twice. Ugh.

Personally, I think it's great that Ellie is getting sneaky--such a sign of her personality. When I hear these things it makes me so hopeful for my little Charlie. Especially nice when I'm having one of those blah days where I wonder if anything I do actually makes a difference.

Sorry for wallowing--it just slips in there sometimes.

Laura said...

I deleted my previous comment because I posted the wrong link. I personally think Ellie is smarter than the average 5 yo but her physical and sensory disabilities prevent her from displaying her high intellectual abilities. Posts like these make me more sure of my assumption. You might be interested in this journal article. I used it for a research project I did for my intro educational psychology a few years ago. It's a case history of two gifted individuals with severe CP.

http://www.gifted.uconn.edu/nrcgt/reports/crs94308/crs94308.pdf

Kathryn said...

Sarai - I am not offended at all. But you are right, because she is our only child (not by choice I feel compelled to add) there are less opportunities for complications with splitting our attention on a day to day basis.

And it's not like she has never heard the words 'no' or 'wait' or 'share'. You have got me thinking though and I might continue thinking aloud about this by posting.

Kathryn said...

Bird - I think it's always good to have hope - it informs your actions, attitude, emotions. Without it things can seem really bleak. I have to continuously renew mine - sometimes Ellie helps with that by doing something great, sometimes I just have to get it from within. Hang in there.

Laura - Wow - cool study - thanks for the link. I actually don't think Ellie is "gifted" per se. She might have been if she wasn't injured at birth. In truth I would be happy for any function she has that allows her to make her way in the world. However of the quick list of identifiers they list in the abstract she exhibits all of those things....I will have to read the whole thing to see. It's a great study though. I am glad someone is doing it in general because of the problems they state about identifying intelligence in people with motor disabilities!!!

Thanks so much.

BusyLizzyMom said...

No suggestions from me, I am trying to figure out what to do when I put my daughter on a timeout and she proceeds to thank me and sing while sitting on the stoop. It is great that she is manipulating you it shows how really smart she is. Way to go Ellie.

Kathryn said...

BusyLizzyMOm- that is so GREAT - so cute! It reminds me of my niece Emily who when given a time out sits there and examine the wall like she is having the best time of her life. Very hard not to laugh at that! It is good that Ellie is doing something that is age appropriate!