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.

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.

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.  

Cellulitis

I’ve had a happy camping post planned for over two weeks now, and a Halloween one in my mind too.  I just haven’t gotten around to posting either of them yet, and now instead of a happy, life with baby post, I have something a little more raw to offer. 

I will, however, break up the not-so-happiness of this post with Halloween pictures

Without weekly therapy sessions to constantly remind me of Juniper’s lymphedema, and now especially that the weather is cooler, and with the wrapping and massage now being our normal, it’s kind of easy to forgot about it.  Maybe the forgetting about it made me lazy, or complacent, I’m not sure.  Last Friday afternoon, after Daniel packed up for a weekend trip with his dad and brother, I had to take Juniper to the ER because I suspected that she had cellulitis in her leg. 

I’d seen a little red dot on her thigh for a day or two, but I didn’t do anything about it.  I didn’t put Neosporin on it like you’re supposed to, I didn’t circle the area with a pen to see if it was getting bigger, I just ignored it like I would if I had something similar on my own body.  Well, my body and Juniper’s body don’t work the same way.  I can get cuts, scrapes, and bites without them turning into a major, rapidly spreading infection; Juniper can’t.  I am hardly a germophobe.  I get a little obsessive about hand washing when my students are sick, but beyond that I don’t really worry too much about dirt.  As with all aspects of parenting, Juniper is teaching me that I need to change my tune a little bit. Maybe the cellulitis would have happened even if I put some Neosporin on that little red dot, maybe it wouldn’t have.  I do know that because of my wanting to avoid putting antibiotic ointment on every little abrasion I now have a five-month old on a healthy dose of Kelfex for the next week.  Hindsight being 20-20 definitely makes me see that perhaps my apprehension over using Neosporin was a little misguided. 

We ended up at the ER after a series of events that would have perhaps been comic if they hadn’t been so un-funny.  Like I said, I noticed the red spot on Juniper’s thigh for a few days, but it didn’t change, so I thought all was fine.  On Friday when I picked her up from work and changed her diaper, I saw that there was no longer just one dot, but many dots, along with general redness and the area was hot.  I spent a few minutes wishing it away and telling myself it was no big deal before I faced the situation at hand:  I would be driving off the mountain to see a Dr. at our ped’s office, an urgent care, or the ER.  After one really unhelpful receptionist and one more helpful receptionist, we were on our way off the hill to a unknown destination.  Long story short: we ended up at the ER because of the time and insurance, where I got to pay my pretty expensive ER copay to tell the doctor what was wrong with my daughter so we could get a prescription for antibiotics. 

It’s not that the ER staff were unhelpful, they were helpful, but lymphedema is a rare thing to begin with, and pretty much unheard of in a baby. 

Being an advocate for a little person who can’t advocate for herself is hard work, and I’m not so good at it yet.  At our four-month well baby visit I spoke with our pediatrician about having antibiotics on hand in case of cellulitis, but I didn’t demand it, and we didn’t get the prescription.  It’s funny, because I was worried that I wouldn’t know what to look for if she did get cellulitis.  I think I don’t give myself enough credit, because on Friday it was obvious to me that cellulitis was beginning.  I did google it, and the images were pretty spot on for what Juniper’s leg looked like.  We have our six month(!) well-visit coming up this month and I am going to demand that we be given a prescription for antibiotics to have on file so that we do not have to repeat Friday’s events again.  We are so trained to be nice and polite all of the time, and it’s really hard to break those habits- especially with doctors who are supposed to be the experts.  I really like our pediatrician, and he is totally open to us, and knows that he doesn’t know everything about lymphedema, but it is still hard to be pushy.  So basically I failed my daughter in this case because I’m not clean or pushy enough. 

Juniper is doing fine, it was actually only after she'd been on antibiotics that I realized how un-fine she had been acting for a few days.  She is such a happy baby that her being fussy is very low on the fussy scale, and I kind of thought she was teething.  Looking back, I realize that something else (cellulitis) was going on, and she is obviously feeling much better now.  

Daniel ended up looking like a Jesus/Dumbledore hybrid, but I think Juniper's nest stroller made up for it.
Photo by B. McMenamin

She's off the antibiotics now, and I have to say that I am incredibly thankful for modern medicine, which I definitely have not always been.  I am having a hard time not rushing out to buy fish antibiotics to stockpile for the apocalypse, but that, friends, is another post for another time.  

Lymphedema Treatment Act

Okay everyone, now is when I ask for your help.  

It will not take very long, I promise.  If I could write I would do it myself, but I can't yet.

I think we’ve established that it is pretty sucky that Juniper has lymphedema, but I don’t really know that we’ve established that it is also very costly.  And not always covered by insurance.  Obviously, we have jobs and will manage, but I really don’t know how many people can afford the treatment, and specifically the super-expensive compression garments on their own.  We are panicking a little bit knowing that we will probably have to pay for Juniper’s compression garments out of pocket, or at the very least battle with our insurance company to cover a portion of the cost. What is really crazy is that compression garments are not covered by Medicare.  Seriously.  

I know, it's nuts, right?

So you have someone who has very little money and expect that they will be able to pay for a $700 garment (you'd think tiny garment=less expensive, but it's not the case since tiny garments are custom sewn) on their own?  Yeah, it is probably not going to happen.  Without compression garments and proper treatment, lymphedema can become a very scary thing.  Did you know that Medicare sets the bar for what is covered by insurance companies?  So, if Medicare doesn’t cover it, then insurance companies aren’t required to cover it either. 

Friends, I’m asking that you write to your state representatives to help get legislation passed that will make sure that lymphedema treatment is covered by Medicare.  This link takes you to a site that makes it very easy.  If you’re a writer or you are so inclined, please personalize the letter by saying that you know a super-cool baby who is impacted by this disease, and you’d like to help make sure that she always has the treatment she needs available to her. 

Juniper thanks you!!!

Go here for more info