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Monday, June 11, 2012

A Livi Update x 2

About a week and a half ago, I met with several therapists and teachers to establish and IEP for Olivia and figure out where she would be going to preschool come fall.  She had been evaluated in various areas in the weeks before to help figure that out and to learn exactly how well she is doing.  We have known that her motor skills have struggled and that specific areas of speech need some work.  Her cognitive skills were last tested about 6 months ago, at which point she was testing ahead of her age level.  I've worried about the cognitive area a lot, so that was great to hear.  However, when we got the results from her most recent evaluation, we learned that she is now below her age level now.

It was a sucker punch.

Really it was.  Brandon and I got in the car after the meeting and I promptly burst into tears. There's nothing like being handed a thick stack of documents telling you all the things your child can't do.  Immediately I began to blame myself. Even though I know she is has beat so many odds, KEEPS beating so many odds, sometimes I want to believe that she she will be the exception to every rule.  The fact of the matter is her 13q Deletion is one mighty blow against her.  I know that I should keep counting my blessings.  But I still feel at fault. I feel like I'm not doing enough, I'm not teaching enough, or not doing and teaching the right things.  Regardless of whether or not there is any truth to that thinking, I can't really be reasoned with when it comes to that, no one has managed to change that for me.

So that part of me?  It's feeling like a big fat failure.  And like I said, I can't be reasoned with about this.

But on the plus side, I feel excited about the program she'll be in.  I think it will be tremendously wonderful for her.

As for the second update?  She is still tumor free!  Hooray!  We spent a good part of last week in Seattle going to several different appointments and it went a little something like this:

1.  We drove through torrential downpour the entire 3.5 hour drive, arriving exactly on time for her oculrist appointment.
2.  The ocularist leaned in close to Liv for a sweet greeting, which she returned by unashamedly farting in his face.
3. Her prosthetic was polished and cleaned and we left with sparkly eyes.
4.  We picked up Aunt Kiki and her dog, Ellie, from the airport and it became the best day ever for Liv.
5.We had to wait several hours to check into our hotel.  So we found a mall in which to waste some time.
6.  The mall had a Disney store, which had a Lady and the Tramp section AND a 2-for-1 deal.  So of course we left with a Lady AND a Tramp.
7.  She promptly re-named Lady.  She is now Darling.
8.  We checked into the hotel and all fell asleep at 8 pm.  We party hard.
9.  Olivia's EUA the next day was blissfully uneventful.  No tumors!  Nothing to report on that front! And we found the right balance of anesthesia and anti-nausea meds and she no longer vomits for hours afterward.
10.  The next day at her oncology appointment we learned she is extremely low iron and that she has low hematocrit.  What does that mean?  Well, it can mean a lot of things.  I'll get back to you on that one.

All in all, medically speaking it was a mostly good week.  We will be back up on Sunday night for her Botox surgery.  So in the meantime, I'm basking in the good news of no tumors and trying hard not to worry about all the other stuff.  Trying really , really hard.

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