I realize that I haven't said much about Juniper's lymphedema in awhile.  I guess because not much has changed.  If I think about it too much I get discouraged.  Right now, in the moment it doesn't seem like a huge deal.  We've gotten used to what we need to do every day, and the future seems so distant for now.  Today we have things to deal with, like the drool issue seen above.  I think we've entered the 'pre-teething' stage, or at least I hope it's pre-teething and not for real teething yet, or I am in trouble.  

We took Juniper swimming for the first time over the weekend.  I've really been wanting to take her since she flaps around in her bath so much.  She didn't quite know what to think at first, and I think was a little confused about why her mom and dad were in this huge bathtub with her.  Once she got over her initial confusion, she had a great time and kicked up a storm.  

Swimming is supposed to be great for lymphedema, and after swimming, I think her leg looked a little better, but honestly I'm not sure.  Juniper will stand (assisted) for a few seconds now, and when she is standing you can really see the difference between her legs- or maybe it seems that way because I'm just not used to seeing her at that angle.  D and I are both a little worried because it does seem like she favors her right leg when she stands, but I guess it could be totally unrelated, or even if it is related, it might just feel weird to her to begin with.  She does put even pressure on both legs after  she gets her bearings.  Maybe it is kind of uncomfortable to put pressure on the fluid in the bottom of her foot at first?  So many things I wish she could tell us.  

We are still wrapping her leg at night.  It still looks good (okay? I guess not really good) in the morning, but I have to say I'm a little disappointed that we aren't seeing any real impact in the size of her leg overall. I'd hoped that after a couple of months of wrapping at night we'd start to see a difference, but I really don't.  I think that her diapers are actually causing some problems, because her thigh is bigger now than it used to be, and I think the fluid is kind of getting stuck in the space between where the wrap ends and her diaper starts.  Not much we can do about that really.  I'm glad that we are doing EC, because hopefully she will be out of diapers a little earlier and this will be an issue for a shorter amount of time.  She is dealing with the wrapping, it's just a part of her bedtime routine now.  The only thing that I think bothers her is when she is really tired and my wrapping her kind of keeps her awake- then she gets annoyed that I'm messing with her and she can't just go to sleep.  She has also gotten good at kicking the whole thing off in her sleep.  A few times I've found the wrap completely off her leg in the bottom of her sleep sack.  

We haven't had a therapy appointment in over a month.  Now that we've had that break, I'm realizing just how much time that took up, and how much her lymphedema totally consumed my summer.  I think we've gotten a little lazy, or maybe we're just getting used to all of it?  I'm not sure.  I still feel like if I did just a little more, then her leg would be better.  Our therapist went to a lymphedema conference at the beginning of the month, so I'm hoping that at our appointment next week she has something new to offer us- just something a little more concrete about what we should be doing, and what our timeline should be for getting Juniper into a stocking during the day.  Anything really would be nice.  

The other thing is that every day Juniper is more and more aware and engaged.  She isn't just this passive little being anymore, and this makes her lymphedema a smaller part of who she is.  It is definitely that way for me when we are at home, but when we are out I find myself doing things to hide her leg (dress her in leggings, drape the tail of the sling over it, put my arm over it, etc.).  I just don't want to explain it to people, and, honestly, I don't want strangers staring at me thinking I'm a bad mom in some way.  It's funny, because since I had Juniper, I am so much less self-conscious than I used to be, but not about this.  I need to get over it soon though, because I don't want Juniper to think in any way that she should hide her leg.  Man does being a parent make you own up to your issues.  

Coming up, a floor bed update!

No comments:

Post a Comment