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.  

The Great Outdoors?

While there was a lot that went through our minds when Juniper was first diagnosed, I think the thing that worried us the most was how her lymphedema would impact our lifestyle.  I guess that sounds kind of shallow, but it's true.  We were prepared for how a baby might impact our lives, but we definitely were not prepared for a baby who could get a severe infection from a bug bite or a scrape.  We just sort of assumed that baby would come on all of our adventures with us; that we'd just throw him or her in a carrier and we'd keep hiking and camping just like before.  When we found out that Juniper had lymphedema we were both really scared that all of that would end.

Pre-lymphedema, when J was just shy of 3 weeks old

At our first therapy session, we learned that we shouldn't bring Juniper to altitudes higher than where we live or take her on an airplane until she has compression garments to wear.  This was a huge blow as D and I have been going to the Sierras together every summer since we met 12 years ago.  We were also planning to fly to Denver for a friends wedding at the end of the summer.  If the lymphedema didn't feel real before that day, it was definitely starting to.  After that first session, we both went through a lot of ups and downs.  In some ways, we got a lot of perspective that the lymphedema wasn't really that big of a deal, but we also saw how much our lives would change in small ways to keep Juniper healthy.  

Maybe not the biggest lover of the outdoors

A few days ago, we were talking about going on a hike with Daniel's brother, and it occurred to me for the first time that we couldn't go on one of my favorite summertime hikes because the trail went to too high of an elevation.  For the first time in a couple weeks, I got really sad.  I know that there are lots of things that could have happened that would mean we wouldn't be able to go hiking together as a family;  Juniper could have hated to be in the carrier, she could have had colic and cried all the time, when she gets older she could just not like the outdoors in general, but that doesn't stop me from feeling really angry sometimes.  I know that as Juniper gets older, it will be a really fine line that we'll have to walk between making sure that she's as protected as she can be while still letting her enjoy being outside and doing the things that I think all kids should get to do, and that we really enjoy doing.  

At 10 weeks.  Note that you can actually see her head over the top of the Beco!

We did find a hike to go on.  It's a bit higher than where we live, so it's probably not ideal, but not quite as high as some of the other trails around us, so it's a compromise, and everything was fine.  Her leg didn't balloon up to twice it's (already increased) size,* and we managed to keep the bugs off of her.  

I hike with her in a Beco carrier and Daniel sherpas all of the extra crap we now need for her in his pack.  We have an awesome pop-up tent for her called a peapod that we bring, and we set it up wherever we stop to hang out for a bit.  

I really like it because it gives Juniper a chance to stretch out and have a break from being in the carrier and she's protected from bugs.  I put her in one-piece outfits that cover her arms and legs from Kicky-Pants.  They're made from bamboo and are super-thin, so they give her some sun/bug protection and I think are not as hot or clammy as a cotton outfit would be.  

This part of August is usually when we take our Sierras trip.  Someone on Facebook a couple days ago posted some pictures of the sunset over Tuolumne Meadows and it was hard to realize I won't get to see that this summer.  Honestly though, I am just now starting to feel like camping would be do-able, so in some ways I think that being forced not to go has saved my sanity a bit, and hopefully next summer we can make it happen.  

*The reason we can't take her on a plane or to higher altitude without compression garments is because the thinner air at higher elevations has lower pressure than the air at low elevations.  The result means less pressure on your body and skin which can make lymphedema affected limbs swell even more.  Most of us have experienced this on a long flight.  She needs the compression garments to maintain the pressure on her leg.  

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.    

Montessori Madness

I believe that all human beings are born with the capacity for focus and attention. We all know that feeling when we are happily absorbed in a task that is not too difficult, yet not too easy: we become relaxed, confident and feel purposeful.  I think human beings crave that feeling and crave those tasks which help us to feel that way, but I think in our society we get farther and farther away from a lifestyle which facilitates those tasks and behaviors in favor of tasks which do not fully require our attention and that do not make us feel purposeful.  It's the difference between the way I feel after a few hours of sewing versus a few hours of internet surfing.  Or the way I feel after reading a good book versus the way I feel after watching junk television (ahem, Jersey Shore).  


I went to Montessori school from preschool through sixth grade, and seeing as I turned out okay, I am a Montessori devotee.  There is a lot of confusion about Montessori philosophy out there, and for anyone interested I would highly recommend reading Montessori from the Start.  In my experience, I've found that people erroneously lump Montessori schools together with other 'alternative' schools, or with Waldorf schools.  Montessori philosophy, in its true form, is about helping the child to become an independent being.  It is not about forcing independence on the child before she is ready, nor is it an indulgent practice where the adult bends to every whim of the child, nor do children not learn reading and math in Montessori schools.  I'm not sure where these ideas about Montessori philosophy came from, but I hear them frequently, and they are untrue.  

Looking at Panda.  Montessori also advocates giving the child things to look at and interact with that represent the real world.  The panda card is an example of what to do, the quilt J is laying on is an example of what not to do.  

One of the things that continues to astound me about Maria Montessori's work is how her ideas just keep getting proven by modern science or reinvented as new ideas.  Montessori believed that the infant has capacity to maintain attention for long periods of time, and that the capacity for attention in humans is formed in infancy.  With the prevalence of ADHD in our society coupled with the prevalence of inane noisemaking, flashing, crinkling toys for infants and children I have to say that I think she was likely on to something.  The more recent book by Gabor Mate, Scattered, makes a similar case.  Montessori philosophy basically advocates for fostering attention in the infant.  There are many components of this, but the first step is through a series of specifically designed mobiles that are introduced to the infant at birth and are rotated through the first four months of life. 

 The first mobile presented to the infant is the Munari mobile (mentioned here).  I got all of my mobiles from etsy and they came with all of the components, but needed to be assembled.  Set aside your entire pregnancy at least a few hours to put them together because the directions for how all the pieces need to hang are very specific and they need to be bealanced.   The Munari consists of black and white geometric forms and a clear sphere.  Juniper started looking at the Munari mobile when she was just a few days old.  At first she was really just interested in the shadows the mobile cast on the wall, but as she got older she became fascinated with the mobile itself.  After two weeks, so when Juniper was three weeks old, I switched the mobiles and introduced the octahedron to Juniper.  

J at about 3 weeks old

At a little older

The octahedron mobile is made of three octahedrons made of blue, yellow, and red metallic paper. Juniper was not as interested in this mobile initially and spent a lot of time mostly looking at her black and white cards, so she only spent about a week with it before I went back to the Munari.  Then after another week or so we went back to the octahedron and she was much more into it. 

At 6 weeks

 At about eight weeks I reintroduced the Munari mobile.  The really cool thing was that she finally noticed the clear sphere in the mobile, and I could see in practice why you are supposed to rotate and reintroduce the mobiles about every two weeks: after some time away from a mobile, Juniper seems to notice new things when she sees it again.

Just last week I tried out the Gobbi mobile, which is five thread wrapped orbs that go in a gradual gradient from light to dark, and she was not into it at all.  Either it wasn't super interesting to her, or she couldn't see it very well, so I took it away for a few days.  I was floored when I tried again just three or four days later.  She loved it.  Like, I've not seen her so into something ever really.  For a solid 30 minutes she just stared at it, babbled at it, breathed excitedly at it, and when I thought she was kind of done and picked her up, she squawked at me until I put her down where she could see it again.  

10 weeks

The mirror that you see in the photos is a pretty key component as well because it enables Juniper to see the mobiles while she is on her belly in addition to allowing her to track her own movements.  

Obviously I have no way of knowing how much the mobiles have impacted her, and I won't ever know if they made a difference in her development, but I do know that she is really alert and will focus on our faces or on her mobiles for a pretty long time.  

In addition to encouraging focus and attention, the mobiles also expose the infant to geometric forms and to aesthetic ideas such as balance and color gradients.  I like that she is looking at things that are beautiful and well-designed as opposed to looking at plastic toys dangling from a play gym.