Baby Janna Blog

A site dedicated to our daughter Janna

Recent Updates

October 2016
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Janna's new toy.

Why wait for Christmas!  Janna's taught me that it's just better not to wait for things.


We found this toy at Costco and I loved it the moment I saw it.  Perfect for her and she really seems to like it.   It made my day to see her actually PLAY with something!

We're also now trialing a CuddleBug (Convaid) and she seems to like that/tolerate it well - so things are looking up!   It's a good thing to with only 6 weeks until baby sister is due.

I'll have to post some pictures of Janna in that stroller before we have to give it up.   Hopefully we'll be able to get a permanent one fairly quickly!

That's it for now - it's Halloween evening and we've pretty good traffic, even past 7:30pm.


Janna's Two and will be getting a baby sister for Christmas

That's right, it's been ages again since I've posted but life  and time has had a way of slipping by quickly.

Janna is stable and doing well from a health standpoint, no seizures that we can identify, she's gaining weight well, her eyesight has improved, she's moving a little more than she used to but she's still very delayed.   No sitting up, rolling over, she's still floppy in her neck and trunk.

She is also learning to cry - yep no smiles but a discern-able cry is taking shape, with tears even!  I feel a bit bad about being happy about that, what normal parent in the world is happy about hearing their child cry?  Well we're not "normal" parents and we take joy in the strangest things around here.  We're still learning to make our peace with that and move on. 

Still no laughing yet - but Janna HATES it when she hears laughter, something about the sound seems to be quite grating to her, she tenses up, arches and sometimes makes her crying sound to accompany the laughing she hears.  I hope someday she'll be able to get past that, as she's gotten past jumping at every sharp or loud sound that happens around or near her.

So we're about to embark upon a second adventure, with a baby sister due in December.   I'm excited and frightened at the same time, under the circumstances I know that's to be expected but it doesn't make it any easier to deal with.

Time for some Janna pictures, they always make me feel better.



Making faces

Happily Janna's resolution for the New Year appears to be she's decided to sleep through the night on a more regular basis!  Of course after our Neurology appointment in January we upped her Nitrazepam by .2 mls so perhaps she was having some seizure activity waking her up?

Another new thing for the New Year is she's learning to make faces.  I'm not talking about her "poopy faces" or the "yuck I've got something in my mouth and I'm going to use my tongue to push it out" - face.   I'm talking about profoundly sad/upset faces for almost no apparent reason or expressed when the smallest thing happens.  (Like when mama blows hair out of her eyes, she seems not to like that at all.)

Of course this begs the question, when will we see happy emotive expressions?  We've yet to see that elusive big smile or hear a giggle.  It seems such a little thing, yet it really would be a huge milestone for us. 

Feeding is still 100% G-tube.  Though her gag reflex has eased up a bit so I can now clean the top front teeth, just past her lips, with her toothbrush without fear of making her lose her lunch.  

Developmental delays still abound, she's very good at extensor muscle movements - which needs to be curbed.  When upset her low tone can change to high extensor tone.  Not so good.   She is getting a little better with her head control and gaining a bit of tone in her neck and trunk.  Baby steps - and a reminder that this will be a long road.

On the whole, everything still seems to be moving along.  She's gaining weight well, her bowels move regularly (if with a bit of glycerin suppository help.)  She was tested for kidney reflux and we were fine there as well.  She doesn't have big gastro reflux as much as she used to.  We still get the odd puke per day but it isn't large and it's usually brought on by positioning changes and secretion management although "silent" reflux is still a possibility.

So on we trod up that mountain, we've got some shiny new equipment to help out along the way.  Some of it we need to stop and learn before it becomes part of the routine but I'm sure we'll eventually get there, wherever "there" ends up being.

15 months old now.

Yes I'm a bad bad mom.   I didn't do a Happy Birthday post for Janna (tsk tsk)   I've been back at work the past 3 months and we are blessed to have Grandma taking care of Janna full time.

Some of the good news lately has been:

  • her hips were given a pass by ortho
  • she still seems seizure free
  • she is developing slowly at her own pace, it's great to see the tiny improvements she's making.
  • we should have her specialized seating and stroller in the next month along with a specialized therapy wedge designed by our PT
  • we should be getting a stander for her within the next 4 months
  • all and all her quality of life is good, we even see a rare glimmer of a smile from time to time.
  • We've found a wonderful respite worker who Janna seems to respond well to.

I'm also thankful to have the flexibility to work from home and although I have needed to travel, so far we're all coping ok with the transition - if not for a little tiredness.  It would be great if Janna slept though the night but at the moment a full night sleep is few and far between for her.  

Overall she is doing well though.  Still not sitting, still not smiling a whole lot or laughing, still doesn't have the ability to grasp and pick up toys, still doesn't have head control and is hypotonic through her neck and trunk but we do see small improvements in her during tummy time and in her ability to lift and maintain a head up position for short periods of time when being cuddled.  We'll happily take that and keep encouraging, watching and hoping for more improvements as time wears on.


Happy "10 month old" day Janna!

Janna is 10 months old today!  And Mom was relentless with the PT therapy today.  (poor Janna!).   She finally seems healed enough from G-tube surgery to make more of a go at learning new ways to move so that's what we did today.

Our PT loaned us a very institutional looking chair.  When I first saw it I was a bit unsure but after seeing Janna in it, I love it!  We worked in the chair today and did some side to back rolling and some tummy time (which she hated)

Here is the video of our chair work.   Janna is really working hard to keep her head up!


So it was a good, busy day for her.  Hopefully she'll sleep through the night!