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.

{pretty, happy, funny, real}

A blog I've read for awhile now does a Thursday linkup, and this week I thought I'd join in, mostly because I'd like to include the non-doctor related aspects of our life too.  Here goes:

{pretty}

We got a lot of gardening done last week, and then we've had a lot of rain (for us here) so my plants are  happy (and pretty).  I will not, however, show you the ones that the tiny fawn promptly snacked on the day after we planted them- those are decidedly not pretty.  I guess the baby didn't understand that spirea and sage are 'deer resistant.'

Kale and swiss chard seedlings.  I stupidly did not plant a vegetable garden this spring, so I'm hoping we can get a small fall harvest.  

{happy}

I started cooking again!  Daniel has taken on the majority of the chef-ing in our house since I had Juniper, and I have to say I really don't know how women with husbands who don't cook manage in those first few weeks.  But, it had gotten to the point where I was just out of my cooking groove and I really just needed to get over it.  My favorite tomato and basil salad that my grandad made every summer.  Last night I even made a full meal and the sky didn't fall!  Huzzah!

Sadly, these tomatoes are not from my garden, but were delicious heirlooms from the farmers' market.  Basil was , however, from our garden

{funny}

I got the bumbo potty seat this week, and it's a big hit.  I'm not a fan of the regular bumbo seats for babies, but for little EC babies this seat is awesome.  Daniel just laughs every time she's on it.  Photos do not do the hilarity justice.  

{real}

We found out after  our hour long drive and arriving at therapy that our appointment on Monday was cancelled.  

We improvised and did Juniper's massage on the table outside.  Waiting around for three hours until her next doctor's appointment wasn't super-fun, but we're done with 3 x weekly therapy appointments now so we got over it pretty quickly.  

This is actually a pretty good shot of me doing the massage on J's thigh right after we took her bandage off

So, that was pretty much our week.  I had a meeting on campus yesterday which was definitely a reality check that going back to work is coming up soon.  I should probably start prepping....

When shots are the least of my worries

Yesterday, Juniper had her two month well baby visit.  I'm not sure what I was expecting from the pediatrician since doctors really don't know much about lymphedema, but I ended up getting my feelings a little hurt bent out of shape.  

When Juniper was a newborn, I always had black and white Montessori cards in my diaper bag so that I could encourage her to 'practice her attention.'  Now all that's in my diaper bag is 15 pounds of cloth diapers and larabar wrappers, so there is not so much of the 'attention practicing' happening in the peach-walled office for 45 freaking minutes.  This is Juniper saying "Where is my Hello Animals book Mom? And why does Dad alway have that black box attached to his hand?  Hi Dad! Do you have my Hello Animals book?  Do you know why there aren't any pictures in here or anything that is remotely interesting for me to look at?  Why? Why?"

I should back up a little and explain that primary lymphedema is the result of a gene mutation, but there are a couple of ways that this mutation presents itself.  The first is called Milroy's disease, which is basically the name given to the gene mutation that causes just the lymphedema.  The second is called Noonan syndrome which is where the gene mutation causes lymphedema along with a host of other health and learning issues.  I know that every parent believes that her child is brilliant, and I am no exception to that rule, but I know in my heart that there is nothing seriously wrong with her beyond the lymphedema.  In reality, I know that Juniper may not be the smartest kid in her class, but kids that are affected by lymphedema, from what I have learned through some online parent groups, are "normal" in every other way.  Noonan syndrome is a whole other thing entirely because lymphedema is basically just one marker of the disorder which consists of many other problems.  
The fact that doctors don't know too much about lymphedema is, in my opinion, probably due to the western model of medicine not liking things that are not 100% scientifically reasoned.  I mean, a quarter of the treatment of lymphedema is massage; not exactly your standard western treatment of care.  Lymphedema doesn't fit in a neat little box that can be fixed the same way, each time, for each person.  It is different for everyone and can change based on the weather, on hormones, on altitude, and just because.  

At San Onofre.  Dad surfed, Mom didn't because a) I forgot my beach bag with my bathing suit at home (yes, I forgot my beach bag when the plan was for us to go to the beach) and b) there was actually some swell in the water and after about 11 months of not surfing I am a wuss.  

So when our pediatrician brought up Noonan syndrome, I prickled.  Then when she told us that Juniper's head was on the small side , and that she'd check and see if that was something related to the lymphedema, I worried. (Any of you that know Daniel know that he has what I affectionately refer to as a pinhead.  My whole pregnancy I hoped that baby would inherit D's tiny head to make my life easier.  Obviously, J has her Daddy's little head and I need to get mine on straight instead of worrying about baby growth charts.  Hindsight, friends.)  And when, at the end of the appointment, she said something along the lines of Juniper 'doing as much as she is able to do.' I got upset.  I didn't cry in the office or anything, but I let it get to me.  D says I need to get a thicker skin because people will probably say much worse about and to Juniper her whole life.  I know he's right, but man is that mama bear instinct strong, I just want to freak out on anyone who thinks that my baby isn't just like every other kid (or at anyone who thinks my baby is just like every other kid).  

This is what practicing attention looks like.  She's talking to her munari mobile

And I thought that her getting a shot would be the worst part of the visit.