[tri-med] Smiles from Keren and med news

Hi all!

We've been keeping up on some of the news that flows through, but 
haven't had a chance to hop on again since the beginning of January.  
We're continually encouraged, though, by the spirit of the notes and 
all the helpful tips and information that flow through.  Nice to be 
living in the 21st Century!

Our little Keren (full T18) is now four months old and in most respects 
is doing very well.  We're putting it on record that her first official 
smile was January 5, and we've been seeing more and more since.  It's 
so exciting!!!  'Course, she still tends to just grin off into middle 
distance instead of directly in response to us, but hey, we'll take it 
:) ....  We've also been meeting with a PT now for a few weeks, and 
that's been a lot of fun.  There are so many little things we can work 
on with her, stimulating all the senses.  She's tracking things very 
well, and just yesterday got to use an activity mat for the first time. 
  We placed her in a boppy pillow within reach of the toys above her, 
and she's actually beginning to bat at them a little bit.  She's 
particularly entranced by a set of sparkly Mardi-Gras beads and has 
managed to get her hand tangled in them a few times.  It was 
interesting reading info about Rebecca's and Faren's development, and 
looking at how Keren might fit into the picture.  Is she progressing 
along the same lines?

Keren is definitely enjoying play time, but the bottle is still another 
story--not her most enjoyable subject.  Her food amounts have increased 
again since she's been on Zantac for her reflux and got over her cold, 
but she hasn't gone back up to where she was before all that came into 
play, and while she's still gaining weight, it's not like what we want 
to see (particularly knowing how well she did those first two months).  
She's now 9 lbs, 13 oz. (birth weight was 4 lbs. 10 oz.), but has only 
gained 4 oz. in the past two weeks, and 2 oz. in the two weeks 
previous.  Rough breathing through her nose has still been a pretty 
common trait which often gets in the way of effective eating, and 
sometimes sleeping.  We finally got to see a pediatric ENT Monday, and 
also had an upper GI study done (in connection with a pediatric 
surgeon).  The upper GI verified that Keren has reflux (duh!), but she 
couldn't drink enough of the barium for the techs to analyze how bad 
her reflux was.  Doesn't seem like there was aspiration, and there's no 
malrotation of stomach or intestines, so that's great.  The ENT was a 
great help--very straightforward, and knew what he was talking about.  
He verified that Keren's breathing issues stem from her tiny nasal 
passages (but that there doesn't seem to be any blockage), and 
irritation and swelling from the reflux (that would explain the 
congestion issues).  He's going to talk with the pediatric surgeon 
about what might be done about that (the two work together).  He also 
noted that her jaw is small (both that and the nasal passages being 
typical T18 characteristics), which puts her tongue farther back in her 
mouth where it sometimes falls back and blocks the airway and the ENT 
seems to feel this is a major cause of her breathing probs.  He is 
going to get us in to see the plastic surgeon he works with to look at 
the possibility of extending her jaw.  Fortunately, he's not 
dilly-dallying around about anything, 'cause as he put it, eating and 
breathing issues are things you just don't wait on.

But we do want to put the questions out there before we jump into any 
sort of surgery....  Have any of you had your child's jaw extended?  Is 
it a help (not just for eating, but in general)?  What are other ways 
to help with reflux?  Has Reglan been effective in your experience?  Is 
a fundo best?  These are issues we're considering before we go the 
direction of a stomach g-tube.

Thanks for putting up with a long email!!!


Loren (wife to Kraig, mom to Keren, T18, 4 mo. and counting! :) )

Loren (wife to Kraig, mom to Keren, T18, 3 mo. and counting! :) )

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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