Updates, updates (Part 1 of 2)

I just got a comment on Juniper's birthday post from almost a year ago from a fellow parent of a child with lymphedema.  The truly small world the internet creates is really amazing.  This parent reaching out to me reminded me of why I started the blog in the first place: to help someone else who may be in my shoes someday.  So, I've decided to try and revive the blog.

A lot has happened in the past year, we've continued to have lots of ups and downs with Juniper's treatment, with her condition, and her general transition to toddler-hood.

Over the summer we took Juniper up to Stanford to see a specialist in lymphedema.  We were really hopeful that we would get some answers, but really we didn't get a whole lot out of the visit other than a referral for a new physical therapist, which we were really excited about. We worked with the new therapist very intensely for the month of August, and we saw about a 9% reduction in the size of her leg.  However, we were really not happy with the new PT, with the methods this person employed, with the attitude this person had with Juniper, or with this person's expectations of us.  We left those appointments feeling highly criticized, like Juniper was being forced/cajoled into walking before she was ready, and just generally really frustrated and unhappy.  It was not a pleasant way to end our summer vacation.  Really, this experience is part of why I didn't start the blog back up in the fall.  I wanted to write about our experiences, but I didn't want to throw this person under the proverbial bus, but I also felt a responsibility to let other parents know that I did not feel that this therapist's method (LeDuc) was as good as the approach our old therapist used (Vodder).  Anyway, long story short,  find a Vodder trained, LANA certified therapist.  End of story.  Well, maybe not end of story.  I think the real issue (that comes up again and again and again) is that Primary Lymphedema, in my opinion and experience with my child, is a totally different beast than Secondary Lymphedema.  You just really don't know what's going on with the whole lymph system with primary, and I don't think everyone always takes this into account.  Okay, done now.

Juniper took her first true steps in October, and started walking for real in November, about a month later.  So she was just under 18 months old when she started walking.  I actually think she probably would have started walking a bit sooner if we hadn't had the semi-traumatic experience with the PT (guess I wasn't totally done yet, see why I couldn't write about it in September?) ahem.  It took her some time to find her balance, and to get a 'normal' gait.  Now though her gait is totally normal, and she runs, and is starting to do stairs by herself.  So, she's definitely behind on her gross motor development, but she's progressing, and doing great.  Sometimes I do feel like she gets tired, especially when she is chasing after other kids, and I worry that it is because of her leg.  But, she is the youngest of the toddlers at daycare, so it may just be that she is younger, and can't quite keep up yet.  When she tires, she gets clumsy and frustrated that she's clumsy.

I think I'll end there and come back later this week with a part 2 update to go over Juniper eczema and our appointment with the geneticist.

No comments:

Post a Comment