Are we there yet?

Juniper only has two therapy appointments left.  A few weeks ago I was scared for it to end because I wasnt sure I'd know how to do it on my own.  Now I don't really know what I feel.  Actually that's not true, I feel discouraged. Juniper screamed through her whole appointment yesterday, and the one before that, and half of the one before that.  I'm not sure why.  I think she might be over driving an hour there and, now that she's older, I think she's less tolerant of sitting still-ish for an hour while a [relative] stranger messes with her.  Regardless, it really sucks for many reasons.  Mainly because I don't like to see her that unhappy, but also because the copay for our therapy sessions is expensive, and that with gas makes for a really expensive and stressful day.  

The day after she was born.  These kind of make me sad to look at since they're from when everything was bright and shiny and hopeful.  Not that things are so sad now, but it kills me that this was before.  Rewind, please
 At the beginning of the summer I was so hopeful because I felt that by the end of August we'd have made some progress, and I guess really I hoped that she would be better.  She's not.  She won't really ever be better, not really.  If I'm honest, I was still holding on to the possibility that we'd wake up one morning and it would just be gone, or at least drastically reduced.  Until probably mid-July, every time I changed her diaper in the middle of the night, and I'd take the legs of her pjs off, I'd hold my breath hoping that her legs would look the same (both like the small one, not both like the big one, that's a different kind of breath-holding thought).  I kept feeling like if we just do a little bit more, we'll start making some more progress, it won't be so noticeable, people won't ask me what's wrong and if she'll grow out of it.  Well, there's not really a little bit more that we can do right now: we are doing everything that we can for now, and I don't feel like it's making a huge difference.  I'll admit that I am looking forward to cooler weather when she can wear pants or leggings more.  Thinking that makes me feel discouraged because how can I think like that and set the precedent for her not to care what other people think? Oy.  I've heard from a lot of folks that they think I'm handling this all really well, I think that's just the Catholic in me effectively repressing.  
Hands in action
We've been wrapping her leg at night now, so she's wearing the bandages for about 12 hours straight and she is being such a champ about it- no fits or screaming (other than what has become her normal bedtime screaming, but that is another issue entirely).  She has totally adapted and lifts and kicks both legs the same now, even though the wrapping makes her big leg even heavier.  Her leg really does look good in the morning, but then it just fills up again in a few hours.  I know that this won't really be resolved until we can either a) get her into a compression stocking during the day or b) wrap her for more hours during the day as well.  Friends, option b is not happening, so we will have to wait I guess.  

Hello, have you met my friend wrappy?  My leg shrinks so much overnight that he just slides right off, then mom poses him creepily next to me right after I've woken up.  
Kind of a good before shot, although this was taken about a week ago.  You can see that the wrapping is really bringing her calf and foot down, everything kind of seems to get backed up in her thigh right now.  Got to work on that
Life carries on.  Juniper found her hands a few days ago, and they are the coolest thing ever to her.  She lays in bed in the dark and just turns them over and stares at them. She stares at us and smiles and laughs, she stares at the ceiling and laughs at her own little jokes.  

Can't wait for her to tell me what she's laughing at.  


  1. She is so beautiful!

  2. Ahhh, Marti is so freaking big now!! Cannot handle it. And thanks

  3. Everything has a purpose and all of your struggles and obstacles may become the blessings for future kids and families dealing with this illness. Whether you like it or not, you were chosen for this journey. We can't wait to see how much she's grown.