Wednesday, March 17, 2010

Busy Busy week


We have had the busiest week so far.  Monday, the Early Intervention Specialist and Speech Therapist came for a visit.  They watched Lily eat to see if she has any issues with textures or with moving her mouth properly.  On the menu: leftover pork meatballs and risotto.  How lucky was it that the one time we have fancy leftovers we have company!  Whoo Hoo!   Also on the menu: tater tots.  You know, just in case she turned up her nose at the fancy pork thing.

She ate very well, probably in defiance of me telling everyone what a picky eater she is.  They think that Lily does fine with different textures but that her mouth seems to get tired quickly and she may have difficulty moving food around her mouth.  This is all pretty common in kids with low muscle tone, so no surprises there.  But, it would help explain pickiness and low weight.

While they were here they asked if I had ever noticed Lily 'space out' or seem to 'look through me instead of at me'.  I asked what they were getting at and one of the ladies noticed Lily doing this which might indicate a petit mal seizure.  Ugh.

No, never noticed it.  But, that very day, Rob was sitting with her in the backseat of the car when she spaced out and her eyes rolled in the back of her head.  Lasted only a few seconds and she seemed fine after that.  Feel like a horrible mom for never having noticed this before.... bleh.


Nurse came for a visit to enroll Lily in the disability insurance program.  Whoo Hoo.  They will pay for any diagnostic tests that our insurance does not pay for.  Once Lily has a diagnosis (if she gets a diagnosis), they may also help pay for treatment costs.


This was the big day.  Went to Cincinnati Children's Hospital to meet with the geneticist.  Spent two hours meeting with about 7 different doctors/nurses/lab people/nutritionist.  Learned a few things that we already knew:

1. She does not have any facial characteristics for metabolic disorders.

2. She has good cognitive skills. :)

3. She doesn't like doctors.  Or nurses.  Or lab people.  Or nutritionists.

4. Add more butter to her food to fatten her up.

No really, we did get some good suggestions about how to fatten her up.  And, they want us to try a milk-based calorie booster even though it has milk protein which Lily doesn't tolerate well and it will keep her (and me) up all night.  But, whatever.

I was also told that I may be told to stop nursing.  Not their decision.  She's been gaining weight very well since her 12 month appt, so her weight is becoming less of a concern.

The doc ran bloodwork for metabolic disorders, renal activity and a complete blood count.  We also had to tape a bag to her diaper area to collect urine.  In the two hours that we were there she didn't pee once (of course).  So, she peed by the time we got home and I have to take it back there tomorrow.

Have to go back in two weeks for a weight check and was given a referral to neurology. Exhausting day.  Tomorrow I have only one thing on my to-do list:

Drive the pee to Cincinnati.

That would make a nice title to a country song.

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