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Thursday, September 8, 2011

First Day of School

Well, Amelia had her first day back to school yesterday.  I really wanted to get pics and video to share...but she was not such a happy camper yesterday.  Not sure if it was getting up so early (she had been sleeping in until 7:45/8am every morning!) or just the frantic pace it takes to get her up, dressed, respiratory therapy done and out the door to drive to school.  In any case, NOT HAPPY!  I did take some video, but it's pathetic as she is kvetching the whole time!!! Today was much better, so I'll try to take some happy video/pics and post them soon!

Nestor and I are really excited for this year because Amelia has been placed in a higher functioning kindergarten class.  Many of the kids are ambulatory, some are slightly verbal and they are all very engaged.  It's so terrific to see her around a bunch of kids who are interactive with their environment.  Not necessarily with each other at this point -- but the potential is there!

The other fantastic piece is that Amelia is with her Pre-K teacher, Carolyn again who is just phenomenal!!!!  She goes so above and beyond what is expected and that's such a blessing in any classroom setting.  Also, the support staff, meaning all the classroom assistants are the same and the biggest thing -- Amelia's healthcare worker, Esther is with her again this year!  Amelia is absolutely crazy about Esther and vice versa!  Esther works her like no one else!  She has high expectations and doesn't take any baloney from Amelia:)  Esther treats her like a regular kid and  Amelia definitely steps up to the plate when Esther's around.  It's great to see.

There's definitely a settling in process though.  Amelia's school day is now much longer, from 8:15am to 2:40pm.  The glitch is that she still naps, sooooo that's a little hard.  She came home yesterday and was wrecked!  It was really hard to get Amelia to nap -- but totally necessary because she was in complete meltdown mode.  Also, it was so late in the day I was afraid to let her sleep too long, but things were so "fly by the seat of our pants," unfortunately, we did let her sleep too long (about 50 minutes) and she would not go to sleep last night.  Nope, not having it!  Last night I think she finally conked out around 10:30pm (yikes!).  The really cute thing that happened though is that I laid down in her bed with her for awhile trying to soothe her.   I had my big pregger belly to her little back and wouldn't you know it?  Amelia's little sister, from deep inside me, started kicking Amelia in her back!  Obviously, they were little thumps, but so cute!  I was just lying there in the dark, holding Amelia while she was settling down, with a huge smile on my face, while my belly was wrestling around with her future big sis!  I just kept thinking -- well, here we go!  The little one isn't even here yet and she's already instigating!!!!  Life's about to get a whole lot more interesting!

P.S.  By the way, the MRI went great last week.  Thanks to all for your support!  We'll be seeing her neurologist at the end of September so we won't really know much until then.

Friday, September 2, 2011

MRI Tomorrow

After many cancellations and reschedulings, we are finally taking Amelia in for an MRI brain scan.  She hasn't had one since she was in the NICU.  It may sound odd that we haven't followed up on an MRI -- being that we have a child with neurological issues, but it hasn't really been my priority.  Amelia's MRI from the NICU never showed anything.  Nothing.  Big fat zero!  She is who she is...but no tests, scans or otherwise have ever come back as anything but....normal.

I always cringed at the idea of putting Amelia under anesthesia and exposing her to radiation in order to see some images that are never going to make a squat of a difference in her life.  If Amelia was having seizures, this information would be important.  If she was regressing and we couldn't figure out why, this would be critical.  But as things are today, it's not going to change her plan of care.  It's not going to give us some magical answer that will give us the knowledge we need to "heal" her.  It's just a gathering of information.  Nothing more.

So, why now?  Well, she's five.  Also, we have a great neurologist at Children's Hospital (CHLA) who thinks it's time.  She posed it simply to us:  "She hasn't had one since birth.  It's time to have a new MRI done so we can have a conversation about it."  I don't know why it made so much sense to me when she said it this time, but it did.  I felt like, ok.  Let's do this!

It also helps that Amelia has been very stable these past few months.  Since she had her ear tubes replaced in April, she's had just a sinus infection over the summer.  Otherwise, she's been healthy and thriving -- although, I will say LAZY!

Must be the mood in the house with me on "low activity"=sitting on the couch!  And Nestor...well, in a nutshell, he climbed up on wall by our front gate to fix a light sensor, fell and has the "rolls royce" of ankle sprains.  So he's been lying on the couch next to me.  Together,  we're about 1/2 a parent!  Poor little Amelia, her parents are such fuddy duddys!  Anyway, Nestor's on the mend and I am in a temporary state of being...so we'll be back and better than ever in no time.


Meanwhile, have a great  Labor Day "last weekend" of summer.  Hope your hot dogs are perfectly charred and your lemonade is cold and sweet!