July 2008 Archives

Quick update on docs

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Sorry I haven't had time to post pix this week.  For those who are wondering, here's what's up on the medical front.

We did see an endocrinologist this week.  He seems to be very knowledgable and I am pleased with the choice.  Given the labs to date, diabetes insipidus has been more or less ruled out.  Hooray!

He wants to do another battery of tests to check various hormone levels, which makes sense.  She has to do another round of fasting blood tests, which I frankly just haven't gotten done yet.  They just bled her last Friday, and I don't like to let them do that more than once a week.  It's an arbitrary designation, I know...  but that's my rule, and I'm sticking to it.

I am really holding on for the neuro appointment on August 5, when we will learn more about her MRI results.  Keep us in your thoughts.

Flashbacks

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Found a few other treasures on Carl's phone too..

The ones in the orange dress are from a concert at the Woodlands Pavilion on Jul 3.  Thanks for the beautiful sundress, Judy!

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Hospital Pix

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Today, Samantha is none the worse for wear.  Her schedule is shot, but that's not always entirely bad.  This morning, she slept until 9 am.  Woot!

 Here are a few pix Carl took at the hospital.

 

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Yeah, those wide eyes were just the "I'm gonna get that camera this time" look.

 

 

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Mom and Sam played games with the mask - it sounded funny when you talked into it.

 

Phew - We Made It!

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All in all, the day went pretty smoothly.  Thanks to everyone for your tremendous support.

Today, Carl and I were up at about 4:15 to get everything ready to go and try to be alert for the drive.  Samantha, coincidentally, woke up and was chattering in her crib at about 4:30, so we grabbed her and were able to get her moving without having to wake her up, which usually generates Cranky Baby.  Phew. 

Everything went as smoothly as you can expect in the hospital.  The procedure took about twice as long as expected, and the only info we have on that is that they were trying to get additional/good angles on the film.  Who knows.

Sam was an absolute champ.  She made friends with all the nurses and giggled all the way up to going under.  We even played wth the mask so when they put it on to give her the gas, she was smiling through it.  I don't think she had a moment of fear about the whole thing.  Mommy is another story.

She (so far) has had no significant after-effects of the anesthetic, either.  She's still barely nibblng solid food, but that's really how she prefers it anyway. 

Carl took some adorable shots of her at the hospital on his cell phone.  I'll try to download and post them over the weekend.

As far as actual results, we are not scheduled to see the neurologist until Aug 5.  I don't expect to hear anything from them until then unless there's something really scary on the films.  So cross your fingers that you hear nothing until Aug 5.

Thanks again for all your support.

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The hospital called this afternoon and left me a message, I think around 3:30.  The message said, "We'll need Samantha to be here at 6 am..."  6 am???  Our appointment was at 2:30 pm!

Seems they decided at the last minute to sort the appointments by age, youngest to oldest.  Guess who is youngest?  So we'll head out tomorrow at 5 am for our MRI.  I'm pretty sure Starbucks doesn't open till 5:30, so I'm pretty upset.

All of this has given me sufficient short-term annoyance to distract me from the stress of having my baby fully anesthetized, which is not entirely a bad thing. 

But I am still scared; any prayers for her safety and for accurate diagnosis of her problems will be greatly appreciated!!!!  Big hugs to all of you who keep her in your thoughts and prayers.

 

OH - AND THERE'S MORE!  I'm so distracted that I almost forgot to share...  Today, Samantha got up on her knees and elbows with tummy off the floor!  She even rocked back and forth a little like she was thinking of going somewhere.  It was awesome, and she did it a few times.  We may really have a mobile baby on our hands soon.

 

 

Aquarium Adventure

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We had a big adventure yesterday -- we spent the entire afternoon at the Houston Aquarium.  It's basically an entertainment complex run by Landry's, which is really quite fantastic for what it is.  Those who try to compare it with the Monterey Bay Aquarium find it lacking but... really, people, let's be realistic, this is not a major research institute, it's a Landry's.  And it's the most spectacular seafood restaurant I've ever visited.

There's an interesting aquarium with lots of tanks of big fish, a petting tank, a shark nursery, and even a section with some white tigers (which are not aquatic, but still interesting).  We posed for a few pictures at the equivalent of the Kodak Photo Spot.

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They have a neat seafood... er...aquatic carousel, which gave Samantha some cause for alarm.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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And, we end up on the bench again.  Not just for teenagers on dates anymore.

 

 

 

 

 

 

 

 

 

 

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The caption for this photo can only be "we waited in line 20 minutes for THIS?!?"

 

This is Samantha on the shark train, which winds through the complex and gives a delightfully air conditioned, if somewhat short, tour of the shark tank.

 

 

 

 

 

 

OK, Papa Cal, there's your update... complete with photos of the bangs.

First HAIRCUT

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OH NOOOOO!!!!  Baby Sam no longer has her baby look.  We basically just gave her bangs, because she couldn't see out without a ponytail, and she didn't like to have it just clipped back.  She loves it - keeps running her hands back and forth across her bangs and giggling.  Mommy, however, misses her baby girl already. 

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Some trepidation...

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Fourth of July

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Samantha's grandparents came to visit for the 4th of July and enjoyed spending some quality time with Samantha.  She really loved having them read to her.

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07 04 08 007.jpgOur little firecracker!

Happy Thoughts

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It's 10 pm on July 4.  Sam is upstairs sacked out.  Carl took my folks to see the fireworks, and Mom is enjoying some much needed peace and quiet.  Did I read a good book?  Watch a movie?  Call an old friend?  Put on some music and boogie?  No, I cleaned out a kitchen cabinet and updated the blog.  Sigh.  I used to be so much fun. 

I hear that you do, slowly, get your life back.  Or, maybe you just forget what it looked like and you cease to mind so much.

Not that we don't have any fun.  Carl's mom sent a few great pictures from last weekend's visit to her house up in Palmer, TX.  Helen and Larry built this thing nail-by-nail -- they planned every detail from scratch, and it is beautiful.  Especially the salt-water pool, where Samantha spent a good bit of her waking time.

She was nervous at first, but as you can see she got over that!

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It's a fairly big pool, but everyone gravitated to the baby.farmors-3.jpg

 

 

 

 

 

 

 

 

 

 

 

 

In the house, Samantha was drawn, as we all were, to a quirky musical in French called "La Fille du Regiment".  Here, she won't even look at the camera.  For Sam, this is big news.

 

 

 

 

 

 

 

 

 

Thanks, Larry and Helen, for being such wonderful hosts!  We had a blast!

An Update

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Thanks to everyone for your prayers, emails, and comments!  Here's the latest:

Most importantly, NO HOSPITAL STAY for us at this time.  Whatever else may be going on, her sodium levels, etc are not so far out of whack that they will put her in the hospital.

But, we really don't know what's up.  We are doing two things to follow up. 

  • First, we're going to get an appointment with a pediatric endocrinologist to check out what's up with her hormone levels.  It is apparently not entirely unexpected that a hydrocephalus baby might have some issues in this area.  Don't know yet when this can happen.  Late on the 3rd of July isn't a great day to get calls back.
  • Second, we're going to get an MRI (general anaesthesia, yuck, with contrast agent, double yuck) to make sure nothing new is happening in her brain.  This last bit seems unlikely, because her head circumference measures are remaining pretty steady.  This will happen at 2:30 PM on Friday, July 18.

The biggest potential offender at this point is something called diabetes insipidus 

Sam was a champ at the appointment and giggled in her car seat all the way home while I sulked and mulled over all the possibilities.  It's very hard to sulk with a baby yodeling and laughing out loud right behind you.

For the record, she's also a musical prodigy with a fantastic ear.  She was so good with Farmor's piano this past weekend, I bought her a little xylophone, which she just loves.  Perhaps we'll post more pictures from Farmor's if she can be kind enough to forward the ones she took (hint, hint!).

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Rough Morning

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Everybody send prayers and good thoughts to our baby Samantha, please.  She is such a little sweetie. 

She went to the pediatrician's office this morning due to some concern on my part about excessive fluid consumption.  Turns out, she weighs 1/2 lb less now than she did at her 12 month checkup.  She has some other indications of some hormones being out of whack.  And the fluid intake question is consistent with a form of diabetes which is also hormone related.  Given the location of her initial bleed, it is not inconsistent that she might have some significant issues in hormone regulation, which can cause all kinds of crazy problems.

Her neurologist is working her in tomorrow at noon, and the pediatrician's office was making noise about possible hospitalization. 

Please keep us in your thoughts today!

Thanks,

Mom