Saturday, May 30, 2009

May 30th, 2009 AKA: 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!

Friday, May 29, 2009

May 29th, 2009. Janna Inchstone: rolling from Side laying to Back.

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.

(insert rolling video if I can find it.)

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 :).

Sunday, May 24, 2009

May 24th 2009. G-Tube Learning and Med Weaning

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.

Monday, May 11, 2009

November 5th, 2009. AKA 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.