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.