Thursday, September 6, 2012

Like A Car In The Shop, So Is My Child

What a whirlwind!  So I think I left off where Anna was about to be inpatient at Cook's for her vEEG.  It went OK.  Annoying as usual and kind of like being in a jail cell with a 4 year old but it went OK.  You are allowed to leave the room 1-2 times a day for no longer than 30 minutes to go downstairs or wherever inside the building you want to go.  You can go to the playroom as much as you want on your floor but there cannot be another vEEG patient in there because there is only 1 video hookup.  It could be so much worse but geez it is long when you are in the middle of it.  There are always awesome movies to pick from and watch but Anna is not at all big on sitting still so we watched Judy Moody and The Not Bummer Summer in bits and pieces over and over.  They stopped her tegretol when we got there so that also meant she was not at all sleepy, did not nap, and became even crazier than usual.  She threw papers at me and told me she was going to kill me.  She growled at me.  And then in the very next breath she was hugging me and kissing me and telling me how much she loved me.  I kept telling myself how people endure so much worse and that I only had to make it through 48 hours of this.  Then the 48 hours were up and the leads came off and she went to MRI.  I actually had a bit of peace in her room waiting for her until the EEG tech came in and let me know they would be putting the leads back on after the MRI and sending us home with them.  I convinced Anna that as long as we got to go home it would all be OK.  And it was.  She did well them at home aside from missing the whole first week of school.  I was SO nervous about her starting school this week but my fears were put to rest when we were met at the school's doors by her teacher, the nurse, the diagnostician, and an aide.  They were so kind and really seemed like they already cared so much for Anna and they had not even met her yet.  They said they were far more nervous than I could have been and that actually gave me comfort.  You have to care and want to do well to bother being nervous.  I was able to leave her without even shedding a tear.  She did great the first day and even used the potty with her class.  The second day- she was SO over it already.  She said it was "not faew (fair).  I unt (want) to say (stay) home wiff (with) Daddy aww (all) day."  But she went adn had a great day again.  I am so at ease now and I think as they are getting to know her better they are also more at ease too.  They asked if it would be OK to make a potty chart to encourage her.  Um, heck yeah its OK!  Carly is doing well also.  She scored at a 5th grade reading level in the first week this year- she's in third grade.  This is the kid who started last year in remedial reading.  The dyslexia program at her school is amazing and has brought her so far.  I am so proud of her!  Gabe is all over the place and each day brings about a new word- his current favorite is "eat".  So about the vEEG- just like when you take your car to the shop the noise stops, so are things with Anna.  There was not a seizure on the EEG but there were things that indicate seizures are taking place.  It is called interictal epileptic discharges.  I'm not going to tr to explain because I can't. I don't really even understand it.  The activity s coming from the left temporal lobe which is interesting because the cyst they were suspecting to be the cause is in the right temporal lobe.  Who knows?  We follow up on October 3rd and hopefully we will get more answers then.  Until then she is back on her regular meds.  The EEG also showed a pattern of slowing which is part seizure and part encephalopathy.  I hate that word, encephalopathy, and I hate knowing that the words "cerebral dysfunction" and "encephalopathy" are used when describing my child's brain.  Her brain is so much more than that.  Anyway, I have been in a pretty dark place lately but I think the sun is coming out again. 

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