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. 

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.  

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.  

To Wean or Not to Wean?

The subject of Montessori weaning is pretty hotly debated.  In its true form, Montessori weaning begins at 2-3 months with the introduction of fresh juices and continues on with the introduction of solids at 4 months.  My first thoughts on the matter were that that is way too early, and the whole juice thing doesn’t really fly with me, but lately I've been changing my tune a bit.  

At our four month well visit, without any prompting from me, our pediatrician told us that the AAP changed its recommendations about when to start solids and what to feed baby when you do start solids.  They've changed things from waiting on solids until 6 months and common allergenic foods even longer, to introducing solids at 4 months being okay and there are now no limitations on allergenic foods.  I knew we didn't want to do any rice cereal with Juniper, so I kind of thought we had to wait until six months when we could start with purees, but this got me thinking.  Hmmmm. 

There is so much debate about Montessori weaning, and on the introduction of solids in general, because of the whole ‘virgin gut’ idea.  Basically, the lining of a baby’s gut is permeable to allow the antibodies present in breastmilk through to the baby’s bloodstream.  It’s a perfect system except that the permeable gut also allows potential allergens through to the baby’s bloodstream, making it possible, in theory for food sensitivity to occur.  There is also a lot of talk about how it is natural to nurse an infant for two or three years, and how we introduce solid food too early now.  But. 

But, my baby is showing an increased interest in food now.  I know some people say that babies are interested in everything that you are doing and want to do it too, but I don’t feel that is what is going on with Juniper.  When she sits at meals with us, she tracks my spoon or fork from my bowl, to my mouth, and back again.  She has even opened her mouth a few times.  The girl wants to eat.  I’ve been hiding behind the virgin gut theory and saying that I will wait until at least six months to offer solids.  But, if I’d never read a study (like a primitive mama wouldn’t have) I probably would have offered her a bit of food already. So, I don’t know that I buy the whole babies weren’t intended to eat real food for a long time argument, because I'm pretty sure that if I wasn't over-educated on the topic Juniper would already be snacking on real food. 

For me?

So what’s stopping me?  Well, I guess that is a good question.  My own emotions and needs are stopping me, and it is very un-Montessorian of me.  What would be best for Juniper’s development, I think, would be to offer her some food.  For mama, though, it’s not that simple.  Being back at work has been really, really hard for me (like insanely hard, but that's another post for another day).  It’s not really getting any easier either.  Nursing is one thing that I can do that no one else can do for Juniper, and I like that.  I like that time together, I even like it in the middle of the night, and I am scared of losing that connection.  It might be that exclusively breastfeeding Juniper is meeting my needs more than hers now.  I’m not saying that we’ll stop nursing, just that it might be time to give some food in addition.  She might hate it, but I think that it’s up to her to find out. 

Montessori Madness: The Floor Bed

The other morning I walked into Juniper’s room to find this:

A true Montessori moment.  If you google for images of floor beds, you come across a lot of pictures like this, so I was expecting it, but it was a little weird.  Juniper has been rolling over in her sleep a lot lately.  Usually she cries, and I go in to find her playing superman on her belly, unable to turn back over to go to sleep.  I guess since she’s always slept on her back, and played on her tummy, she doesn’t realize that sleep can happen on her belly too.  Until two days ago. 

This wasn’t the first time I’ve found her in a strange place, but it was the first time that she’d still been asleep.  My first instinct was to go in and turn her back over (or at the very least re-position her so that all of her body was on the mattress), and probably if had been the middle of the night I would have.  But since it was 6am, and I knew she’d be up for the day in the next hour, I left her.  About a half hour later she started squirming around so I moved her back onto the bed on her back and she slept for a little longer that way. 

It probably seems a little weird to leave a baby in an awkward position, but I do think that is all part of using a floor bed.  You’re letting the child figure out how to move around, and also letting them feel that they have power over their own body.  She was sleeping peacefully in her awkward position, so why move her?  Once she wasn’t happy anymore, and she wasn’t able to get to a comfortable position on her own, I stepped in and helped her out.  As with all the Montessori works, it’s all about finding that fine balance between letting the child work independently (and possibly struggle) without letting her get too frustrated.  If frustration (as opposed to a little struggle to accomplish something) sets in, then learning stops. 

So, I guess you could say that the floor bed is working out for us.  Juniper seems to prefer it to her crib, and I prefer it to her crib (I can still lay down to nurse her in the night and pretend that I am still asleep).  Granted, she isn’t crawling yet, so that may throw a wrench in things, but we’ll see.  I’m actually looking forward to her being able to crawl to her sleep space when she is tired (this is the floor bed in practice ideal, but I realize that it may not happen).  We haven’t gotten rid the crib yet, it’s just in the basement in case we decide we need it in a few months, but for now I’m sold.  

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!