Asymptotes and Dropping Shoes

Just when I thought my frustration was at an all-time high,the other shoe drops.  I don’t even know how I came across the article.  Well, actually, that’s a lie, I do know how I came across the article, but it’s embarrassing.  I was searching for ‘lymphedema spontaneous recovery.’  A mother can dream, right?  Anyway, what I got was more to freak out over.  Awesome. 

So Juniper’s big toenail on her right foot (her good leg) has been looking a little funky for the past couple of months, and I’ve been worrying about it, and I was planning on mentioning it to her doctor at our next well baby visit. Hence, when the words ‘yellow' and 'nail’ popped up in my previously mentioned miracle-hunting search, I was intrigued.  

Turns out some things are best left undiscovered.  My research is full of holes I’m sure, but basically there is a very rare disease with the charming name of ‘Yellow Nail Syndrome’ that presents with the glorious triad of yellow nails, lymphedema, and lung problems. But wait, Juniper doesn’t have lung problems!  Oh yeah, all of the research I read said that you basically consider the patient to have yellow nail syndrome if only two of the symptoms present themselves, because, don’t worry, the third will eventually present itself in time.  See, the awesomeness just doesn’t stop.  
Like she’s not going to have enough going on with her leg, now we’ve got ugly nails and potential major lung and breathing issues to worry about?  Freaking out over here, I’m not going to lie. 

It was a rough week last week.  We’re not really noticing any improvements in swelling, and since Juniper is crawling now, it is getting really hard to do her massage, wrapping is a totally impossibility so we’ve been relying on her tiny tribute.  I was already feeling like I was at my breaking point, and this is tipping me closer to that edge.  It’s not really so much an edge as it is an asymptote- you’re always getting closer to that edge, but you can go on approaching it infinitely.   Someone please tell me that it’s all going to be okay, because it’s really starting tofeel like it isn’t. 

Yesterday we went out to dinner with Daniel’s family for his Nana’s birthday.  Daniel’s aunt and uncle gave us a christening gift for Juniper of a lovely crystal frame.  In the frame, they’d put a photo of Daniel, Juniper and me from when we visited them when Juniper was a little over two weeks old.  So, before everything happened.  Maybe it’s because there’s still the pregnancy weight in my face, but I swear I look ten years younger in the photo than I do now. It’s a great shot of us, we look so totally happy, and I’m so glad to have it, but it also makes me really, really sad. 

There’s good stuff happening over here too; like the crawling all around the house to come and find me, and the babbling, and the laughing.  I don’t want the crappy to outshine the amazingly good, because the good is so good, but I am frustrated, and angry, and sad, and I guess that’s just how it is.  
I promise next time I will have some sunshine to share, but for now friends, I'm feeling like the storm we're supposed to get: about to bring two feet of snow to the world around me.  

The Boot Update

So, remember when I posted about the boot/night garment that was going to change our lives?  Well we got it a few days after the holidays aaaannnnnnnnndddddddd...

Yeah, wop wop.  Didn't fit.  The front part was about an inch shorter than the back part.  Luckily, Solaris is a pretty great company and they just made us another one.  They even let us keep the not-so-great-fitting one to use in the meantime.  We got the second one last week aaaaaannnnnnnnnddddddd...

I have no photo!  I am terrible, I know, but since the boot goes on at bedtime, photos are not usually at the forefront of my mind, sorry. Here's another view of the old one.  If I get a good picture of the new one I will update.  But, it does fit, Huzzah!

See how the front and back aren't even? 

The new one once has a sparkly mermaid decal on it instead of the butterfly that was on the old one.  In a true example of men vs. women, Daniel wasn't so keen on the mermaid, but I liked it.  Then we took Juniper to PT last week and our therapist exclaimed how much cooler the mermaid was than the other one.  I guess it's a girl thing.

I will include random cuteness to make up for lack of new boot pics

It has been pretty life changing, because it really is so much easier to velcro the boot on her at night than it is to wrap her, especially because she wants to move pretty much all the time these days, which makes wrapping her a total PITA really difficult.  I was completely sold on the boot until 4am last night the other night.  Juniper has been teething, and last night the other night was particularly bad, but when I was lying there, not sleeping, as Juniper pinched my cheek, I realized that her sleep has been pretty bad since we started using the boot.  I'm really hoping it is just coincidence, and we get a good night of sleep in with the boot on soon, so I don't have to admit that maybe there is a connection.  I can't imagine that it is less comfortable, but maybe it is just a matter of getting used to something new.

Her Christmas wagon is finally assembled.

One of the benefits to using the tribute that Solaris talks about is that the swelling is improved because of the consistency of the garment.  For instance, when I wrap Juniper the foam layer doesn't end up in exactly the same place, the wrapping isn't always the same tension, it may end higher or lower on her leg, or different parts of her leg and foot end up with more or fewer layers; there's just a lot of variables.   Juniper's leg has always been the smallest when we are consistent with her wrapping and massage.  If she is sick, or goes to sleep before we can wrap her, or gets cellulitis and we don't wrap her for a few days, it usually takes a week for the swelling to kind of normalize again.  The idea with the tribute is that it takes the consistency to another level because not only are you wearing it every day, but the leg is getting the same level of compression, in the same places, every time.  Her ankle looks way better than I have ever gotten it to look with just wrapping, and the top of her foot is looking better too.

So there's the boot update.  Since I wrote this Juniper has had some better sleep in the boot, and some not great sleep with her leg wrapped, so I think it's a who really knows situation.  

A Few Things

I've been pretty terrible at the blogging lately.  It's just so hard to sit at my computer when there is this cuteness to distract me.  

We go on winter break tomorrow.  It's funny how in our pre-Juniper life our breaks were always about how fast we could get out of dodge after our last commitments on campus.  Things have changed.  It's funny, before you have kids you kind of think of the whole "things change when you have a baby" idea to be something negative.  Really though, it isn't.  The rhythm of life is always changing.  Staying stagnant and doing the same thing over and over doesn't cause any growth.  I don't think we can discover our true purpose in this world unless we are constantly growing, changing and adapting.  
So, this will be a quieter break for us.  We still have plans to do some camping and day trips around SoCal, but overall we will try and embrace just being home, not having to rush out the door with everything the three of us need for a day away from home and from each other. 

The other day I was at the market and a woman was there with her three-month-old baby.  I kid you not, I almost wept while I was standing in line.  This little baby had orchestra conductor hands, and the wide-eyed stare of a tiny human just beginning to see the world around him without really knowing what any of it means.  It hit me that my baby isn't a teeny tiny anymore, and I know this is just the beginning of those moment, man is it rough!  

On the lymphedema front: we had a physical therapy appointment last week, and we met with the sales rep from Solaris.  They make a night garment that is worn instead of wrapping.  It's a big convenience, with a big price tag.  However, Solaris  does something that is pretty awesome (and from their perspective probably guarantees them a customer for life) and they offer kids under four with lymphedema one free garment a year, and if you need to buy another in the year (which with a little you probably will need to do) you pay 25% of wholesale cost.  The rep brought a sample for us to check out, and they are actually really cute.  They look like little baby ugg boots, sans sheepskin lining, and they are really soft- the same cannot be said for the lining, foam and bandages involved in wrapping.  The only weird thing about our appointment was that the rep mentioned that they recommend getting one to put on the child's good leg so 'they don't feel a difference between the two legs.'  Now, I could be wrong as Juniper can't tell me yet, but I am pretty sure that she feels a difference in her legs inherently seeing as one is about 25% bigger than the other.  Needless to say, we will not be taking following that particular recommendation.   

We are hoping that we get ours by Christmas.  Please keep your fingers crossed that Juniper likes it, because if she does, friends it would change our lives.  No more struggling to keep her still while we wrap her, and she could wear it during nap time because it is so quick to put on, and (I cannnot believe that this was not my first thought) when she is a little older she will probably be able to put it on herself.  This last point I anticipate to be a pretty big deal. 

I think it will be a big deal because Little Miss already likes to do. things. herself.  When she is eating she wants to hold the spoon and put it in her own mouth.  This creates pretty much a disaster of whatever she is eating because she isn't so good at just grabbing for the spoon handle instead of the part of the spoon with the food on it, but she is actually pretty efficient (if messy) at getting the spoon in her mouth.  We're also sitting up over here, so lots of growing and adapting and changing.  

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!

Montessori Madness: The Floor Bed

One of the ideas I like most about the Montessori child's room is the floor bed.   I love that you give the child the opportunity to explore her environment freely and that the child gets the sense that she is capable and able to do things on her own.  Yes, cribs are convenient for parents duing certain stages, but it seems to me that they are problematic as well, i.e. you cant lie in them with your child, it's a back breaker to move your baby in and out of the crib, your child will eventually learn to climb out of one and then you've got to transition to a real bed, etc.  But, I don't know anyone in real life who has used a floor bed, so when I was pregnant, while I loved the idea in theory, I shied away from it thinking that I would later come to regret it and have to get a crib anyway.  So we got a crib and I set up the rest of her nursery as close as I could to the Montessori ideal.

The other night I was going back and forth yet again about Juniper sleeping in her crib versus our bed, and I couldn't really get to a happy place regarding either.  The next morning I had a head slapping moment when it occurred to me that what might solve some of our problems would be to switch to the floor bed.

Juniper has, mostly, been falling asleep while we massage and wrap her leg while she's lying in our bed.  This was both good and bad.  Good because it seemed like wrapping was starting to be a sleep cue for her, and bad because I couldn't see how this would ever work with her sleeping in a crib.  Floor bed to the rescue! This way we can do the routine in her bed on the floor.  I think it also may solve the night issues as well because I won't have to haul her out of her crib to change and feed her, I can just do that in her bed too.

Basically, I've given myself the excuse to try this (maybe crazy) Montessori idea that I love in theory for real.  I reserve the right to put this experiment into the major parenting flop pile in a few months as well.

We talked a little about buying a twin futon, but since the room is so small, and we already shelled out for an organic crib mattress, we decided to just use that, and before Juniper's morning nap we'd moved the crib out. 

So far, the only drawback is that Juniper seems to really like it, and today she napped a little less than normal as a result.  

I think as she settles in and it becomes the norm this will be less of a problem, but maybe not.  We're keeping the crib for the foreseeable future in case this turns into a major disaster, but I'm really hoping that it works out.

P.S. Juniper only naps with a blanket, this is because we are always around watching her.  At night she wears a wool sleep sack over her jammies.  Also, right next to the bed is not the permanent or normal home of her toy arch!

Festival

We went to the jazz festival up here over the weekend.  I was kind of nervous about how it would go with such long days all weekend, but Juniper was such a champ.  We went right after her morning nap, she hung out for about an hour and a half and then took a good nap in her peapod, hung out some more, took another good nap, hung out some more, and passed out in the car on the way home.  All was well until we tried to put her to bed and she had a minor meltdown which was stopped, oddly, by my wrapping her leg.  I thought, well she's freaking out anyway, might as well wrap her.  As soon as I got the first layer of cotton on, she totally calmed down and I was able to lay her down and finish wrapping, and she pretty much slept through for a solid five- ish hours.  Maybe the wrapping is actually becoming a sleepy cue for her? That would sure be nice. This scenario was not quite repeated on Sunday evening, but close. 

 Juniper wore her jazz festival outfit (dubbed that by Daniel when we got it in the mail back in June), which I neglected to get many pictures of.

The icing on the cake was coming home to (my first ever) pot roast made with the last bit of our grass fed cow, and late dinner on the deck. See? The cooking thing is happening for me again.  I think I missed it, but I'll let you know in a few months.

 Also, the mornings are cool here again and the light is changing into that early fall sort of light.  I love it, but I am a little sad that my happy summer nest is about to get shaken up in a few short days.  Sniffle.

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.  

Wrapping: Part Two, and Three Things

First, typing on a normal keyboard after using the iPad is weird.  My fingers are all clumsy.

Second, you know how I said that we were going to reevaluate the whole wrapping thing in a few months?  Well, I lied.  

When we went to therapy on Monday we talked to our OT about the plan and she pretty much convinced us to give it a try again.  Her reasoning was that Juniper would probably not be really stoked to wear the bandages at any time, and that it might be easier to introduce them now than in a few months when she is more mobile.  

In my gut I felt like we needed to be wrapping her, which is why we started so early in the first place.  I would just hate to look back in a few years and feel like we could have/should have done more when Juniper is younger.  I think I am going to have enough of those moments, and this I can at least act on right now.  So, we all agreed to give it another go with the original technique that Juniper responded to without screaming her face off.  We brought the bandages to therapy yesterday and gave it a go.  We managed to keep them on for about an hour, took them off, and all went okay.  

I realize this is probably not as helpful as a before/after or a shot with both feet

Yesterday afternoon I tried it on my own for the second time and did what I thought was a pretty bad job.  The bandages just weren't as firm as they should be, but J was happy with them on for almost two hours.  When we took them off her leg was the smallest and softest it's gotten yet, so I was pretty pleased with myself.  I couldn't repeat those results this morning, but she only stayed wrapped for an hour again, so I am thinking that length of time may be more important than the pressure of the bandages, but we'll see.  We're also trying this stuff called turbigrip to use in between wrapping, kind of as a really lightweight compression stocking.  
It's funny, it was really hard for me to see her wrapped the first time, but I think I am starting to get used to it.  I'm also starting to get used to explaining to people why her leg is swollen and that no, she won't grow out of it, without choking up.  Progress.

Third, naps are pretty much key, friends.  

Wrapping

We tried wrapping Juniper’s leg for the first time on Thursday morning at our therapy session.  I got kind of conflicting advice about when to start wrapping, and our therapist has never seen a baby as young as J, so we are sort of winging it (not the best feeling, for the record, when you're dealing with your small baby's health).  Some other parents said they started wrapping at 7 weeks, some at 4 months, others waited to start until 15 months.  Some staunchly advocate for starting as early as possible, others are just as adamant about waiting for awhile.  Confusing.  We decided that we’d try it for just a couple hours a day and see what happened. 

Once we started, I understood why our therapist was hesitant to start with Juniper so young: the wrapping is really intense.  First you put a stocking on to protect the skin, then you put foam on, then you use special bandages to wrap the leg.  

Foam

Bandages

The bandages aren’t supposed to be tight, rather it’s the layers of bandages that create the pressure to bring down the swelling.  All those layers on a tiny baby are pretty overwhelming. 

Juniper did really well on Thursday with the wrapping and we headed to the beach (that's normal, right?  Two-month-old baby, therapy sessions 3x per week involving tons of driving around southern California, lets go surfing!), where we took the bandages off.  Sand + baby + bandages seemed like a bad idea.  She had them on for about two hours and it really took the swelling down, especially around her ankle.  

Stretch!

After

We were really encouraged, so much so, that we went to Pizza Port to celebrate. 

Today we had therapy again, and wrapped J’s leg again at the end of the session, this time hoping to stretch it to her wearing the bandages for three or four hours.  J had other plans. 

J likes Pizza Port too

She started fussing as soon as our therapist was done wrapping her, but fell asleep pretty soon after so we thought we were good.  Yeah, not so much.  About 20 minutes later she started screaming while we were driving, like uncontrollable, inconsolable, throat-tearing screaming.  We stopped and I got in the back to start unwrapping her leg, by the time I was done my poor baby had burst a capillary in her eye from crying so hard.  It was pretty terrible.  Daniel and I pretty much decided that we didn’t want to go through that again anytime soon. 

A before shot 

Now we’re kind of at a stand still about how to proceed.  We don’t really know how big of a difference wrapping her now will make in the future, so maybe it’s not worth it.  But, what if wrapping her now will mean that her leg will look more ‘normal’ in a few years?  What if by not wrapping her now we are setting her up to have a harder road down the line? 

I think for now we are going to try again in a few days and see what happens.  If we have a meltdown again, we’ll hold off on wrapping and reevaluate at 6 months, and again at a year. 

I want Juniper to just be able to be a baby and to be happy.  It is so hard to do all this to her right now when she is too little to understand what is going on and why it’s all being done to her.  I worry that she won’t trust us as much anymore if we keep putting her through these kind of painful and stressful situations.  I wish there was someone who could just lay out the right path we need to take with her and know what the outcome in a few years would be. 

On a positive note, we had lunch with old friends today after the nuclear meltdown and they gave Juniper this sea otter.

  They’re good friends already.