Baby Janna Blog

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.

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.

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!

Janna has made another inchstone this week.  She's now able to roll from her side to her back.  This is wonderful to see, we hope it progresses so she's able to do a full roll from her tummy to back.

She also really enjoys the outside, just like her parents, but isn't tolerating bumps and jostling too well right now so although we'd like to be doing more walks and exploring we're pretty much just hanging out in the backyard and deck with her right now.   Ah well, it gave me a good excuse to improve our backyard space :).

So now we're almost into June and I haven't updated at all.  Yeah I can be a procrastinator.

Janna had G-tube surgery in mid April and did as well as could be expected.  She had a bit of trouble tolerating her old NG rates so we had to start off pretty slow but she was tolerating bolus feeds - (although she needed to be held each feed in the beginning.)

Now she's doing a bit better, she's up to her old 90ml/hr NG rate, which is what she was at before surgery.  We've already experienced Granulation Tissue and some stoma leakage and discovered wonderful products like:

"The Bone" a cath securing device used to stabilize her long PEG tube without the use of tape.

Calmoseptine a wonderful barrier cream to help sooth irritation caused by stoma leakage and lessen granulation tissue and

Mepilex, so far my favourite absorbative/wicking dressing.

I've also managed to change her outer bumper to a 90degree "fixator" made by the good people at Corflo (UK) which has made stabilizing her tube that much easier and thus more comfortable for her.

One thing that is troubling is her gagging episodes.  She still has them, even without the NG tube so it's dawning on me that the NG wasn't causing them.  She'll cough and gag and gag until she vomits, sometimes it's just a gag out of nowhere.

I'm wondering if it's Neuro-related; if perhaps some of the muscles in her esophagus are floppy, working too slowly or not at all?  We'll be doing another swallow study in the next few months and hopefully that will shed some light on things.

Med weaning is going well.  It's nice to be finished with the Prednisolone.  The Amlodipine and Vigabatrin is slowly being weaned as well.  Soon, if all goes well; we'll only have 2 meds to deal with.  What a dream!

She's also shown some gains in her vision.  The improvements were drastic enough for our developmental pediatrician to agree that we must have quite good seizure control (Yay!).

Of course she's still pretty floppy, she has made some gains in head and trunk control but is still far behind her "peers" at almost 10 months old.  We've got a Physiotherapist that she's scheduled to see once every 2-3 weeks and we're hoping we can give her some opportunities to make the most of whatever mobility she'll be able to have.

So we trod on.  Some days are better than others.  We're still housebound the majority of the time because Janna doesn't tolerate moving around a lot.  Bumps, jostles and changes in position are difficult for her and will often bring on a gagging episode along with a vomit.  I hope that changes, it's difficult not to be able to go out and about with her, especially as the nicer weather is upon us.