New and Emerging Treatments for Lymphedema: A Presentation by Stanley Rockson, MD

I had to share this presentation by Dr. Rockson from Stanford, who Juniper went to see this summer.  He confirms what I have long suspected: Juniper's severe eczema is probably a result of a, in my layman's terms, jacked up immune system caused by her lymphedema.

New and Emerging Treatments for Lymphedema: A Presentation by Stanley Rockson, MD

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.

Birthday and a Recipe

One year ago today I became a mama, and I am so thankful for my sweet girl who teaches me something new each day.  

The past year went much differently than I imagined it would one year ago.  Things weren’t as carefree as I would have hoped, and there was more sadness than there should have been. But.

There has been so much good, and while it’s true that being a parent stretches you in ways you didn’t think were possible, the good is so good. 

We had a fun party for J yesterday.  She had her first bite of cake, got great gifts, and got to see family from far away, and I think I managed to absorb the actual moments, and be present. 

Last night when I was putting her to bed, I told her how the next morning she would be one year old, and how happy I am to get to be her mama.  I think she understood, because she woke up in the middle of the night and would not go back to sleep anywhere other than lying on my chest.  As if to say, ‘it’s okay mama, don’t worry, I’m still your little baby for a while longer yet.’

Now for a little recipe...

I searched for literally months for the right first birthday cake for Juniper.  I went back and forth about whether to make it from coconut flour, or from soaked flour, and I had a really hard time finding something that didn't have nut flour, sugar, honey, or a bunch of semi-complicated steps.   A few weeks ago she had coconut flour pancakes and loved them.  That sealed the deal.  For her special day I thought including her old standby favorite, banana, would be a good call.  The recipe I used is technically a banana bread recipe, but, really, banana bread is just cake without frosting, so with a cream cheese frosting, sweetened with maple syrup, we had a cake that was enjoyed by all.  This is the lightest, most 'normal' flour tasting recipe I've had using coconut flour.  Sifting is a KEY step!

Paleo First Birthday Banana Cake
Adapted from mygutsy.com
I got one (thin) 6 inch cake and 9 cupcakes

Cake

3/4 c coconut flour, sifted

1/2 tsp baking soda
1/4 tsp sea salt

2 tsp cinnamon

4 pastured eggs

6 T melted butter (or coconut oil)

3 really ripe bananas

5 T grade B maple syrup

1 T vanilla

Preheat the oven to 300.  Line pans with parchment, -or- butter and flour your pans (using regular flour.  Obviously this is not paleo, but I don't think coconut flour would work to release the cake from the pans).  Sift flour. Whisk together dry ingredients.  Beat bananas until smooth, add butter until combined, add eggs, maple syrup, and vanilla and beat until well combined.  Stir in dry ingredients until just evenly moist.  Pour batter into pans.  This batter does not rise or even out during baking, so smooth the top of the batter as best you can.  Bake for about an hour, until edges are brown and coming away from the sides of the pan, and a toothpick inserted comes out clean.  Let cool in pans for at least 15 minutes, then allow to cool completely out of pans on a rack.  Refrigerating before frosting would probably be easiest.  

Frosting
12 oz organic, cultured, cream cheese, room temp
9 T butter, room temp
2 T organic raw sugar (or to taste)1/4- 1/3 grade B maple syrup
1 tsp no alcohol vanilla (I use TJs brand)

Combine all ingredients and beat until well combined and a little fluffy.  Check for sweetness and add more sugar or maple syrup if desired.  I like a tangy cream cheese frosting, but you might like it sweeter. You could probably do the maple syrup on its own, but I was worried about it thinning the frosting too much, and overall there is a very small amount of cane sugar in the recipe.

For this cake, I recommend doing a thin 'crumb layer' of frosting, refrigerating cake until cold, and then adding your final layer of frosting. 

Do what you love, love what you do

This day, one year ago, we went to our town earth fair and the stars aligned and I went into labor that night. I finally wrote Juniper's birth story, which I had planned to share today. We got some sad news in our little town, however, so for today I will just say: love what you do and hold those dear to you close, because you just never know.

Today

Today I will officially turn into one of 'those' mothers when I take my baby to the ER parking lot to feed her peanuts for the first time. I mean, we are already going to be at the medical complex area to get J measured for her first compression stocking, so it's not like we're making a special trip or anything. Totally not crazy at all.

Sea of Love

I know there’s been radio silence around here lately.  It’s not that things aren’t going on.  There are definitely t h i n g s happening.  Some of them not so great, but I haven’t really found a way to write them down or talk about them in a way that is productive.  But, since the whole point of this little blog is to try and help someone who might be in our shoes in the future, here goes. 

We had actually started seeing some progress in the reduction of swelling in Juniper’s leg using the Tribute.  I think I mentioned on here that I wasn’t really that impressed with it, but that changed and we are pretty much only using the Tribute now.  so.much.easier than wrapping.  Anyway.  For a couple of days in a row, things were looking great in the morning and I started getting excited, like light at the end of the tunnel excited.  Then one morning, we noticed that her left hand was a little swollen.  Now, in all honesty, her left hand had been slightly swollen a couple of times before, but it always went away so quickly so that I doubted what I saw.  This time, it didn’t go away.  The tunnel pretty much started closing in on me at this point.  My mind raced through all of the things she wouldn’t be able to do now if the lymphedema was in her hand.  Sew? Play piano? Pick up sticks and play in a sandbox?

You get a good idea of the swelling from this shot.  It is not too noticeable normally, but when she has both hands flat, you notice you can't see her little knuckle dimples in the left hand.  The swelling is really just limited to her hand.  Yes, both wrists are that deliciously plump.  Brain food, as the bouncer at the brewery told us last week.  

We went to the pediatrician, we went to our O.T., the answer was the same: we have no idea what is going on.  Though multiple extremity primary lymphedema seems to be fairly common from what I’ve heard from parents I am in touch with, it is out of the realm of ‘textbook.’  Fear, frustration, going over the myriad of what-ifs swirled around in my mind.  I felt like if I had been on the brink of a mental breakdown before, this would surely push me over the edge.  But, it didn’t.  I guess we always have the capacity to handle just a little bit more. 

Ultimately, it motivated me.  I had been tossing the idea of taking Juniper to the lymphatic disorders clinic at Stanford, but I’d always pushed it aside thinking I didn’t need to go across the whole state to have them tell me what I already know: massage, wrapping, skin care, that’s it.  Suddenly though, things were different, and I decided we needed to do more.  We needed to explore every possibility, every chance that there is something we are overlooking.  So now we are in the process of getting insurance approval to go see the specialist at Stanford.  We are also in the process of trying to get Juniper fit for a daytime compression stocking, which is proving to be much more challenging than I thought it would be. 

I am somewhat of an obsessive researcher, I think a lot of folks are now in the age of google.  I don’t look up one lasagna recipe, I look up five and overanalyze compare and contrast to see which one will be best.  I’ve tried to rein in this tendency with the lymphedema stuff because, I guess, it feels like I’m grasping at straws sometimes.  Everyone else seems so resigned that this is just how it is, that there is no rhyme or reason to it, it just happened, and there’s nothing I can do about it.  I realize there is nothing I can do to magically repair her lymph system, but I feel like there is more going on here, and I want to know as much about it as I can.  There were a couple of months where I just had to kind of ignore it for awhile.  We were in our routine, I think we had kind of come to terms with it, so I just let it be.  Then her hand started to swell, and I guess it was a game-changer.  I realized that no one else was going to do anything to help us, so we had to help ourselves. 

In other news, since we last spoke, Juniper started crawling, eating three meals (and a snack) a day, pulling up on everything, still eats dirt at every opportunity, and remains my angel straight from Heaven.

Holiday

HEEEEEYYYYYY YOUUUUUUU GUUUUUUYYYYYSSSSSS!!!!!!!!

(please read this in your best Goonies tone)

Did you know that today is Lymphedema Awareness Day?  

Yeah, I didn't either. I'm more interested in trying to eat all my floor friends that mom keeps trying to sweep away with this crazy thing she calls a 'broom.'  

To celebrate today, go check out this blog over here.  My dad and my Uncle Fuzzy are running real far (but not real fast) and trying to raise some money for the Lymphedema Treatment Act.  There's a button on this blog up near the top that tells you all about it.  Go read it and tell me how it is.  

9 Months and Cosmic Changes

Yesterday we went out to lunch.  As we were sitting there, Daniel and I started talking about how big Juniper seems all of a sudden.  Not so much size-wise, but more in the way she interacts with the world.  She is moving from just figuring out herself, to figuring out how she fits in the world around her.  When she was smaller, she would happily play independently for very long periods of time, regardless of where we were in the house.  Now, she wants to be near us, she wants to know where we are, and, usually, she wants to be right next to us.  She still plays independently, but for shorter periods of time, and she is more distracted by what is going on around her.  I think she now realizes how big the world is and how small she is.  She is more conscious of her need to feel safe and secure.  She understands that we provide security, and she notices when we aren't right there.  

I know this sounds a little out there, but I think (and I'm pretty sure Maria Montessori supports me on the this one) that she is going through a cosmic change.  She's now been out 9+months, longer than she was in.  Each passing minute, this world is more familiar to her than the one she knew when she was inside of me. The invisible thread that connects us is getting longer and finer as she moves into becoming a more independent being.  This is where separation anxiety comes in to play.  She is struggling with her new freedom and independence.  She understands more about the world around her, she can (sort of) crawl and move around where she wants to, she is discovering limits.  

All of this compounds to mean that my little baby isn't so little anymore.  She has always been alert, but she takes in everything more completely now.  She takes joy in new experiences, not just because they are novel, but because of the things that are happening.  The cold of snow on her face, the way the top of a hanger spins around, the air from the heating vents blowing her hair, the feel of snow melt dripping from the roof on her fingers. The world is so vast and scary, but at the same time full of marvels.  It's exciting.  It's exhausting.  It's pretty cosmic.  

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.  

LOve

This day, eight years ago, Daniel made me breakfast and proposed  (after not proposing to me when we went out for fancy French food the weekend before. Even when proposing he has to be a smart a*&).   This day, twelve years ago, Daniel and I had our first Valentine's Day date and he didn't make reservations, so we ended up eating Indian food, which was delicious.  This day, last year, Daniel was out of town, but he went home before he left and brought me up a weekend's worth of firewood and covered the counters in chocolate: in other words, pregnant lady heaven.  

Today, we have this little valentine whose sweetness knows no bounds.  No chocolate for her this year, but maybe we'll let her snack on some dust bunnies.  

Happy St. Valentine's Day, friends.  I hope your days are filled with love, good snacks, and not so much sugar that your stomach hurts, but just enough to be yummy.  

p.s.


The finches are back! Spring is on its way.

Tracking

Animal tracking is something I'd never really heard of before Daniel and his family introduced me to it. The Gray boys can get lost for hours staring at a small patch of dirt, deducing what animals came through, where they were going, and where they were coming from.  Sometimes I really enjoy tagging along, sometimes it's boring for me.  It all depends on the day I guess.  
Juniper hadn't logged too much outdoor ground time until recently.  This summer we were so worried about bugs and sun that we generally kept her in her peapod when we were all outside together.  Last weekend we had somewhat of an impromptu picnic in a grassy park.  It was only then that we realized Juniper had never really been able to explore grass before; our yard isn't grassy and really grass does not abound anywhere we usually spend time.  She thought it was pretty cool and made for a not-so-tasty snack.  Juniper has been really using her pincer grasp lately, so tiny blades of grass and pine needles are excellent toys.  

Yesterday afternoon, we loaded up to go tracking with Cobo (grandpa for the uninitiated).  I erroneously forgot the baby carrier at home so we just carried Juniper in our arms to the tracking destination just a few hundred yards off the road, and set her on a blanket.  She didn't stay put for too long because not only did the pine needles beckon to her, so did the dirt.  

Mmmmmmm, tasty, tasty dirt.  She basically dove face-first into the sandy dirt surrounding her and got a huge mouthful.  I wouldn't say that she liked it (she did let me wipe her mouth out with a damp bandana), but she didn't really complain, and seemed rather pleased with herself.  

okay, mama, I guess you can take these hunks of gravel out of my mouth

After some dirt sampling, she moved onto pine needle sampling.  I think she is maybe, sort of, starting to move out of the everything-goes-in-the-mouth phase (I realize that seems ridiculous to say given this post is about her dining on dirt, but there you go).  She did try out the pine needles, but she was definitely more interested in moving each one with her fingers, breaking them in half, and grabbing for new ones.  

So far, she doesn't seem worse for the wear.  There has been, um, evidence that she did in fact eat and swallow some dirt, but otherwise all is well. I guess she just needed some more minerals in her diet?

Photos by G Gray, 2013

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.  

Rhythm

I've been thinking a lot about the rhythm  of life lately.  Apparently this is a Waldorf thing.  As I'm not super-well versed in things Waldorfian, I didn't know that, but I've been getting more interested in Waldorf philosophy lately. I know this isn't original, as lots of other people seem to be getting interested in it as well.  There was recently an article about a Waldorf school in the Bay Area where lots of Google folk send their children.  Google folk sending their children to a school where computers aren't used seemed to be enough of a paradox to warrant a newspaper article.  

Is it really that surprising?

We are becoming less connected to real people and real things in our lives, yet I think as human beings we crave connectedness.  I love the internet, I love my iPad, but I also love birthday cake, and I know none of these things are really nourishing to my mind or my body.  I hope you don't feed your little one cake everyday, and I think computers and technology in general should fall under the same principle.  Waldorf folk seem to believe this to be true, so I am going to do some investigating.  

I love Montessori philosophy, and while I do agree that it is the task of the young child to figure out the world around them, I also know that as a child I created fantasy lands so intricate that I lost myself (and anyone tolerant enough follow my orders) in them for hours.  Children seem to want life to be magical, and I'm not sure it is such a terrible thing to allow them a little of that magic.

Anyway, rhythm.  In my last post, I talked about trying to do a better job of finding that sweet spot for myself in my work life.  I'm hoping to do this not only so I can be happier, but also so that my mornings at work flow nicely together with my afternoons and evenings at home.  I know it is important for Juniper that we start to develop a rhythm to our days, but it is also important for me. I need to know what happens when I get home from work in the afternoon: Do I do my cleaning chores?  Play with Juniper? Put her down for a nap right away or after 20 minutes? An hour?  If I don't know the order of things she certainly doesn't.  I'm not talking about getting all rigid with our schedule and having no flexibility ever, but I do think that as human beings we crave some sense of predictability in our lives.  I'd like to think that it allows us to appreciate the ebb and flow of our days.

I've never been one for resolutions at the start of the year, but I've been kind of liking the "theme" for a year idea that I've been hearing about lately.  So not a resolution really.  An intention, maybe?  We'll see.