August 2008 Archives

Good News from the Barium Test

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Good news!  No big issues found in the barium swallow, other than the fact that we have a baby who doesn't want anything to do with a barium swallow.  I expect that's pretty normal.

Meanwhile, she's been given Prevacid, which Nanny Jamie thinks is a miracle drug.  The feeding drama has been massively reduced.  It's been 5 days since any of us needed a bath after feeding time.  Rock on.

In addition, she's doing pretty well with the new feeding program (which is really more of a drinking program, college prep already), so maybe we'll get her fattened up yet.

I'm just glad we don't have any more major medical tests or procedures scheduled for a while.

Lil' Scooter

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Not a GREAT video, but I finally got some footage of Samantha's primary mode of transportation - the tush push.  Only 11 seconds, look fast.

And a few fresh photos for those who don't have the connections for a 2 M video.

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Here's to Anticlimactic Doctor Visits

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We had the long awaited Neuro visit on Friday and we found out...  nothing.  Actually, it would be more accurate to say that there is "no news". 

Samantha still has severe hydrocephalus.  She still has enlargement in the 3rd ventricle, which could be creating pressure on the hyothalamus, which could in turn be causing her thirst and feeding issues.  Or not.  There was no material change from the MRI she had a year ago, so it seems odd that she would be suddenly developing new issues as a result of problems that appear constant. 

We choose to call this a positive visit.  Of course, we'd have loved to learn that the hydrocephalus had abated, but we are thrilled that there is no blockage, no increase in pressure, and no need for a shunt.

Meanwhile, the coughing, choking, and vomiting continues unchecked.  We went to Target yesterday and Samantha stole a crumb of granola bar, put it in her mouth, gagged, belched, and threw up all over Mom and the cereal aisle.  A young associate tried to clean it up and had to call for back-up from someonoe with children, who cleaned it without flinching as we swapped stories about "the worst place your kid has ever thrown up".  I invite all the mommies reading this to submit their stories, just to make me feel better.

On a happier note, Samantha has developed an endearing habit of telling people through sign language that she wants "more YOU".  Very sweet.  She still scoots all over the house on her bottom and gets into everything.  We are adding child latches to more cabinets every week.  Her little sibling will not have to wear hand-me-down pants.

Pix tomorrow!  Right now, we're off to throw Sam in the baby pool for a few minutes.

World's Fastest Update

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I want to prove to myself that it's ok to update the blog when I have, literally, 3 minutes.

And, of course, I promised my mom I'd let the grandparents know Sam's latest stats.

We had a weight check with the doc yesterday.  Sam has gained a whopping 2 oz since the 4th of July, but has grown 1/2 inch. 

30.5 in

20 lb 1 oz

We now are moving back to a diet that's focused on a highly concentrated formula with feeding more as occupational therapy to try to get her weight up.  This should make her happy, because she really hates to eat. 

Next Tuesday, she gets another barium swallow test to see if everything is developing properly in terms of how she takes in foods, because we've been having a LOT of drama around feeding time.  I really think the issues are behavioral, but Dr. Purcell thinks its important to be sure, because hydrocephalus kids have tone problems (as we know) which can even impact their digestion.

In other news, we had 5 therapy sessions in 6 days over the last week and I finally put my foot down and said "no more".  Sam and I were both stressed out about it.  So I'm re-working our go-forward schedule for a while to be a little less intense.  We weren't even able to practice what one person said before we met with the next.

We'll keep you posted on various progress.  Neurology tomorrow...

Drat, that took 7 minutes, and no pictures...  Need to keep working on this.

 

Miracle Baby!

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Given all the posts with Samantha sitting, scooting, and laughing, it may surprise you to hear that at 16 months old, Samantha has not been able to get into a sitting position on her own.

UNTIL TODAY!

Unfortunately, we don't know how it happened, but when Nanny Jamie went to get her up from her nap, she was sitting in her crib, as though it were the most natural thing in the world.  I cried, the nanny cried, and Carl said "of course". 

God continues to work miracles with this little one. 

We are having big advancements this week.  At Gymboree today, she enjoyed standing and playing with a toy.  Standing voluntarily is new too, especially in public.  Woot!

For those of you who are here for the cute baby pix, here are shots of Sam in her papa's pool over the weekend.  What a great visit - thanks, Cal!

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Do You Like Giggling Babies?

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If so, be sure to watch this video of Samantha having a blast in her baby pool.

Click here!

Oh... by the way...  Samantha's neurology appointment has been rescheduled to August 22. 

MRI Update - We have none.

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Thanks to everyone who has sent notes of support today...  Unfortunately, I have NO NEWS to share.  We were scheduled to be hit today by a hurricane/tropical storm (Eduardo), and the medical center, which is prone to flooding, closed.

I know this only because I called them and got their "please call back during normal business hours" recording several times, so no, I don't have a new appointment date, either.

Sigh.

Grandma's Birthday

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My parents came in town this weekend to celebrate my mom's birthday with Samantha.  Everyone had a great time!  Samantha always loves reading with Grandma and Grandpa.

 

 

 

 

 

 

 

 

We celebrated Grandma's birthday with dinner at a Brazilian steakhouse, where waiters bring by skewers of different meats and guests just feast... and feast.  Samantha did great, I think in part thanks to the novel venue that really provided some distraction.  Check out that hair.  100+ degrees and humid, and I didn't even take time to brush it after her nap.  Where DID she get those curls?

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Grandma, you didn't think you'd get away without a shot of the cake, did you?  At least I didn't include the one where you're blowing out the candles.  Those always make for great facial expressions! 

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Here are some bonus shots of a happy baby!

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