Friday, May 29, 2015

Eleni, 3 months

Eleni, 3 months

Eleni, 3 months

It seems miss Eleni was rather uninspired by the prospect of a photo shoot this morning.  She fell right asleep, so I rolled her over and decided we could work with that.  Today's photographs are captured on a Vignette fabric by Laura Gunn for Michael Miller.  I love that saturated green!

For those just joining us, our baby suffered from oxygen deprivation prior to birth, with an MRI showing severe global brain damage.  She is disabled as she is unable to take food by mouth and has early signs of cerebral palsy.  Because of her birth trauma, her brain sends too many activating messages to her muscles, resulting in excess muscle flexing and tightness that discourage normal movements.  Her brain damage also manifests in difficulty breathing and using her eyes.  So many things rely on muscle control!

Sleep is not an unusual state for our sweet baby.  She's hardly ever awake and can even sleep through her feedings, since she's tube fed.  I'd love to see her more alert and interactive!  But at least Eleni is gaining well, weighing about 10.5 lbs at 3 months, up from her birth weight of 5 lbs, 11 oz.  We are pleased that her head growth is normal, which means her brain is at least growing.  Growth is good.  Here she is slumbering away during her bath this morning!




Ok, so today I want to tell you about something new we are pursuing for our baby, but first a little background about cerebral palsy (CP).  If you do even a little research about cerebral palsy, you will read again and again that it is not treatable.  It is also not "progressive" in the sense that the damage to the brain happens at one time and does not continue to get worse and worse.  However, the effects of the damage do get worse and worse, often causing deformities that physical therapy (especially stretching) may prevent.  There are 5 levels of CP, ranging from so slightly effected that it's mostly undetectable to severely effected with all four limbs unusable and difficulties with basically every bodily function.  It can be really, really bad.  The crazy-causing part is that no one can tell you how your child will be effected.  It's all wait and see.  Some babies with severe brain damage wind up doing very well and vice versa.

I'd like to take issue with the "not treatable" aspect of this tale.

In the last 15 or so years, neuroplasticity (the ability of the brain to change it's own structure and functioning, i.e. to reorganize or "heal" itself) has become a proven scientific phenomenon.  However, it seems that when dealing with CP the medical establishment has missed the memo.  Perhaps, because neuroplasticity is so new, treatments to induce brain reorganization and healing have not yet been proven.  As a result, healing therapies are never mentioned by neurologists (gah!) and certainly not covered by insurance.

Obviously, that won't stop parents.  A bit of searching the net yields a bunch of alternative therapies for CP.  While Eleni was still in NICU, a research-oriented friend gave me a copy of a book describing what is probably the most popular and/or promising treatment: Anat Baniel Method (ABM).  So, the short version is..

We're doing it!  And, it may be working.

ABM is a physical, movement therapy that aims to treat the brain.  The brain learns to move in infancy through a wide variety of random movements.  For a CP child with tight muscles, these movements don't happen and hence the child will struggle to learn to roll over, crawl, sit, etc.  Practitioners of the Anat Baniel Method touch and move the child in ways designed to provide the information the child's brain needs to learn how to move.  Results can be quite dramatic or more slow and minor.  But this is key - from what I can tell, most children do make progress learning how to MOVE parts of their body they could not previously move.  

Eleni, 3 months

Obviously I am afraid to be too optimistic, but I'm also darn sure going to try.  Eleni received her first session (6 clustered lessons) about a week ago.  Since her lesson she's done many new things, some just once or twice and some over and over again.  The most important change is that she is now able to hold her head in midline at times.  By that I mean she does not always turn her head completely to one side (maybe passing through midline, but never staying there).  She has found her "center" which is foundational to so much future learning and growth.  She does not always choose midline, but it is approaching 50% of the time.  That's HUGE!

Some other little improvements we noticed during and after the session are:  rolling from back to each side, sucking with cheek involvement, large left leg kicking, vocalizing a new sound and bringing her hands together low over her belly when lying on her back.

Honestly, I was very guarded, during and after the ABM sessions, against allowing myself to believe that change had occurred.  My mother, who traveled with me for this out-of-town therapy, was trying to tell me that Eleni was definitely turning her head and eyes to voices, especially mine.  I'll never forget what happened when we arrived home from our travels.  My mom and I were on opposite sides of Eleni, who was strapped in her carseat.  I spoke to Eleni and she turned her head from midline to look at me, with her eyes.  I stopped talking and my mother began calling to her.  Eleni turned all the way to my mom.  When mom stopped and I spoke to Eleni again, she turned right back to me.  Such a little thing, but so much!  So very, very much!

Since our session last week, Eleni has been using her eyes better, focusing on people and sometimes on toys several times each day.  Still, when she doesn't do her "new" things I so easily feel despair.  Did I imagine that?  Is this authentic progress?  Did she already forget how?  I know that change doesn't have to be constant to be real, but it's so hard to feel that truth when your child turns away, unresponsive again and again.

Of course, the only way to know if it was ABM that brought these changes would be to go back in time and not do the ABM treatments.  Just as with anything we do to help her, it's impossible to know with certainty what exactly is working.  But my instinct is that the changes we've seen are so clustered and so developmentally significant (here I mean the head at midline) that we must continue on.  We will do two more sessions (6 lessons each) in June and then evaluate this alternative treatment.

I hope beyond hope that by that time there is no question in our minds that our child's brain is reorganizing itself in a helpful, healing way!

Thanks again for taking this journey with me.

xo,

Rachel


Wednesday, May 27, 2015

Sunbonnet

Thank you all for your comments on my last post.  I am taking my time reading and absorbing each one.  I do so appreciate being held by the community here.

Sunbonnet a la the Purl Bee

So how about a sunbonnet?  How about a super sweet Liberty of London sunbonnet a la The Purl Bee?  Mmm.. yes, we can all appreciate that!

I've been anticipating making this project for I don't know how long.  How nice to have a practical need fulfilled in such an indulgent and doable way.  The project does take some not-so-quilty skills and tools, which I happened to have on hand.  The more you sew and try new things, the more you build up your skill set!  This one seemed to bring several things together...

Sunbonnet a la the Purl Bee

I hardly ever pull out a bias tape maker, but this one was just the right size.  Tip:  Use a pin to pull the fabric through when you're getting it started.  Iron the fabric right as it comes out, nicely folded on the thin tip of the tool.

Sunbonnet a la the Purl Bee

Don't let interfacing scare you.  Even if you don't quite follow the directions (oops), it can still turn out all right.  Just ask for the correct weight interfacing at your craft store.  This project uses "lightweight" fusible interfacing.  I also put to use my curved sewing skills and notching know-how.  Again, these things aren't actually hard, just intimidating.  You've only to dive in!  Remember, it's just fabric.  (Ok, don't practice on Liberty fabric!)

Sunbonnet a la the Purl Bee

And while not a must-have, this pressing ham was perfect for pressing those three-dimensional bonnet seams.  My mom picked this up for me at a yard sale and I almost turned it away.  Don't do that.  You want a pressing ham.  It's annoying to store, but you'll be so happy to have it someday!

Sunbonnet a la the Purl Bee

Ta da!  Two very sweet bonnets in size 0-3 months for my 10+ pound, 3-month baby girl.  I made the one in Liberty lawn (exact fabric still available at Jones & Vandermeer!) and the other in solid pink FreeSpirit voile.  Both are lined in that subtle taupe stripe that I recently restashed.  I resisted using the stripe here, but it was too perfect.   Hmm... probably an indication that I should have bought yards of that stripe...

Sunbonnet a la the Purl Bee

Sunbonnet a la the Purl Bee

They fit her beautifully and offer lots of protection.  I bet I'll be making the next size up before the sunshine wanes this year!


Monday, May 25, 2015

together Alone

So much has changed.  The things I used to do, I don't.  I don't have time to walk with friends, follow my favorite blogs, read that book for book club.  And yet there's much being accomplished around here.  For one, I'm making lots and lots of milk.  Out it goes by one tube and into baby by another - the most unnatural thing.  Also, our house is clean, the laundry done.  It's strange to accomplish these mundane things and with them the appearance of wellness and order, when at the core all seems most horribly undone. 

Sometimes I enjoy hanging a string of colorful cloth diapers on the line.  A little bit of sunlight and fresh air.  I've kept up with a little sewing and a little blogging, just enough - I hope - to keep my business afloat.  I'm mostly getting enough sleep, just not enough life.  Where are the happy anecdotes?  Or, even just smiles?  Where is the joy that babies should bring? 

Instead there is worry.  Am I doing enough for her?  What can I do for her?   Have I researched enough to find the best answers?  Have I passed by a time when she could have interacted, could have turned her head to my voice or moved her eyes to mine, could have let me stretch her tight muscles, could have been enticed to move in any way.  And what about doing for them - the other children, the husband.  And then for myself.  I wonder, am I OK?  Who am I now with so much changed?

There is worry enough for today, and mountains of worry for the years far ahead.  But that I won't look at, not today.  It is nothing, I say NOTHING like the worry you have for a presumably healthy child.  I envy those parents who worry about a difficult sleeper, a colicky infant, a late talker.  They are blessed to carry so many happy assumptions that would be, for me, just wild, unfounded, vulnerable hope.  And I do hope.  My hope feels like stepping out on thin ice.  I can't even see the shore.

I feel tricked by fate.  Trapped.  Alone, even though I am not.

I have friends who do anything they can to help.  Anything.  I have family who come to lighten my load several times a week.  I have children that pitch in when I ask.  I have a husband who has given me this day to catch up on some work.  I have monies gifted to cover some of Eleni's out-of-pocket therapies.  I have a beautiful, growing baby girl.

But when I pick her up, and she does not look at me...

When my milk nourishes her, but she does not know my breast...

When I smile and sing to her, but she has yet to smile back...

Then it does not matter.  We are together alone.



{Afterward}

Yes, I am aware of postpartum depression.  Yes, I have shared my heart with friends and family and am even able to contact someone who's gone through a similar tragedy.  Don't fear for me, but only allow me to express some of the pain I'm experiencing.  I will follow up later this week with an update on Eleni's progress, along with her 3-month photos.  I just could not go on to do that without acknowledging, for reality's sake, the heartbreak I also feel.  Life is smiles and tears.  I have struggled lately to know how or when to share the hard side.  Today this felt right.

Rachel


Nuanced Neon Winners!

Good morning, peeps!  I hope you've enjoyed your weekend or are still enjoying your weekend, for those of us in the U.S.  During Memorial Day weekend lots of fabric shops have special sales, so hop on over to my sponsors in the sidebar to take advantage of that, if you've had a purchase in mind. 


Nuanced Neon {a mosaic contest}
books, doors, crochet, flowers

Today let's congratulate the two winners of our Nuanced Neon mosaic contest.  I love that the winning mosaics have totally different color themes.  Different, but both fantastic!  You can find these mosaics as curated fabric bundles now at Mad About Patchwork, in very limited quantities.




Spring Promises by Katherine of Sew Me Something Good.

{Fabrics} 
Line 1Linen Mochi Dot Grass, Cotton + Steel Dottie Bluebird, Playful Bowling Allie Aqua
Line 2Biology Structure CitronNatural History Butterflies Green, The Sweet Life Dots Sappy Green
Line 3Oval Elements Peacock, Sun Prints Mercury Chartreuse, Mochi Sky



Neon Sunset





Neon Sunset by Marissa_R on Flickr.

{Fabrics} 
Line 1Cotton + Steel XOXO Plummy, Follie Striation Plum, Cotton + Steel XOXO Ghost
Line 2:   Cotton + Steel Dottie Gelato Gold, Moonlit: Arrows in Coral, Cotton + Steel Dottie Kerchief
Line 3Cotton + Steel XOXO Dandelion, Sun Print Mercury Sun Yellow, Cotton + Steel Netorious Kerchief






Congratulations to our winners who will receive their bundles in fresh, delicious cotton real soon!  A great big thanks to Mad About Patchwork for sponsoring our fun.

Thanks to all of you for participating with your mosaics and your votes.  Have a happy Monday!

Friday, May 22, 2015

::Voting:: Nuanced Neon Mosaics

It's time!  I hope you had fun choosing mosaic fabrics or just reading the prompt for our Nuanced Neon mosaic contest.  Thanks to everyone who participated and to Mad About Patchwork for sponsoring this contest.  I've narrowed it down to 10 finalists, choosing mosaics that felt cohesive and inspiring.  As always, it was a really tough job to select only 10!

Enjoy perusing these lovely mosaics!  I've presented them first at large size to help you find your very most favorite one, with the name of the artist under each mosaic.  Voting is below with smaller images for reference.  Vote now through noon (eastern U.S. time) on Monday the 25th.   The two winning mosaics with the most votes will be announced on Monday.

Good Luck Everyone!

Neon Sunset
Neon Sunset by Marissa_R

Clashy Classy Brights by Never Just Jennifer

Loud Kitty by Megan at A little bit of my life

Spring Promises by Katherine at Sew Me Something Good

Coral and Blue Nuanced Neons
Coral and Blue by Minn Rose

Happy Neon Brights
Happy Neon Brights by Emma

sun & sky
Sun & Sky by Annabelle Gardner

Buds of May by Katherine of Sew Me Something Good

Nuanced neon - mosaic for contest
Nuanced Neon by Julianna

Pink Lemonade Neons
Pink Lemonade by Shannon




Tuesday, May 19, 2015

Ice Parfait on the beach!

Last weekend was our annual camping excursion to Hunting Island State Park, South Carolina.  It's a gorgeous place to camp.  Bringing a baby with medical needs was super challenging, emotionally, intellectually and physically, but thanks to very helpful family and friends, Brandon and I did manage to enjoy ourselves.

Baby at the beach

And - bonus - I also got some quilt pictures!

Ice Parfait quilt finished!

Ice Parfait quilt finished!

Ice Parfait quilt finished!

Ice Parfait quilt finished!

I absolutely had to finish this quilt in time to photograph it at the beach because the setting is perfect for these colors, don't you think?  As you can see, the wind didn't entirely cooperate.  But, hey, that keeps the shots interesting.

In case you want to see what the front and back actually look like, here are some I took at home:

Ice Parfait quilt finished!

Ice Parfait quilt finished!

Freshly wrinkled.  Ha!

It's difficult to see in photos, but my straight-line quilting loosely echoes the abstract tree shape.  I started most sections by quilting up the tree "trunk" and then out from that center.  I'm always looking for low-stress ways to quilt because the quilting step still feels risky to me, like I might ruin everything.  With this design I didn't cross over previous lines, but just kept echoing quilting paths at random widths, which helps to avoid puckers.

quilting Ice Parfait

quilting Ice Parfait

In the negative space, I quilted a few dense patches over the Kona Ice Frappe.  Here I'm using a hera marker to mark my quilting paths.  It makes a nice, sharp crease and "applies" faster than pencil or pen.  As much as possible, I avoid marking lines.  This tool is my go-to when marking is key to accuracy.

Ice Parfait quilt finished!

The finished quilt measures 49 x 70.  I bound the edges in a crisp mint stripe interspersed with white and some other fabric scraps, since I didn't have quite enough to go round. 

Ice Parfait quilt finished!

I think this quilt is one of the most "modern" ones I've made.  The making felt completely natural, but I also know that my next few quilts will be much more traditional, as is my usual style.  I do enjoy working with a repeated block! 

I've listed Ice Parfait in my Etsy shop now.  I hope it finds a happy home with someone who loves peach and mint as much as I do!

Monday, May 18, 2015

Fabricworm Knit Challenge Victories

Hello + Happy Monday!  We're already sporting near 90 degree weather here in South Carolina, so I've begun to think seriously about summer wardrobe.  Top of the list is a sun hat for baby and some rompers or tees that accommodate her feeding tube.  But when those things fall into place, I'd also like to make myself something this year.  Maybe today's knit victories will actually get me moving!

Come see what our knit challengers made with their Birch knits from Fabricworm!  The original challenge prompted each to work with 2 yards of their choice.  They could add other fabric and trims as desired and they had a little over a week for the making.

Sometimes a deadline is just what we need! 

First up, Megan shared her project at A little bit of my life.  She made a tank dress, pulling together several free online tutorials and basing her pieces on a favorite tank top.  This was Megan's first time sewing with knits, yet she drafted and sewed this up in one day, contrast binding and all.  Wow!  Fabrics:  Jay-Cyn Serengeti and Birch Solid Grass.

Love it on you, Megan!


Amanda made a similar style knit skirt, using the crafterhours knit pencil skirt tutorial.  She says, "The fabric was a dream and the weight is just right for this project."  I think that drop waist seam is very flattering, don't you?  Nicely done, Amanda!  Fabric:  Birch Solid Dusk.



And can you believe that Dana at Waterpenny made THREE garments for the challenge?  She started with a pretty, swirly skirt (which she sports hiking, no less), added a funky tank and then couldn't resist a wee little dress for her baby girl.  Hop on over to her blog to see all three.  The tank's my favorite!  Fabric:  Charley Harper Barn Swallow




To round out our challenge, Jennifer glows in her beautiful new knit dress!  Don't you just want to be her?  My goodness!  Visit in the Baumgarten for lots of tips on how she sewed up the Moneta dress pattern without a serger.  Her detail shots and newbie tips are just what I'd need to get up the gumption!  Fabric:  Charley Harper Feathers


A great big thanks to all challengers for inspiring us with your knit-tackling courage!   And, of course, thanks to Fabricworm for providing the Birch knits for our event!  I believe there are more knits in my future.  What about you?

Friday, May 15, 2015

Nuanced Neon {a mosaic contest}

source












Slow down a minute, my friend, and ponder with me in color...





Neon is bright.  It's bold.  It's s.a.t.u.r.a.t.e.d.  Almost, but not quite, too much.

Nuanced Neon {a mosaic contest}
hearts, flowers, room


Full of pluck and personality, neon waves, "Hi!"  It dances and sings, bright lights, center stage.  Without trying, neon feels young.  It's just what we need to push those chins up, smile and move on. To be hoping and expecting the best of tomorrow, today.

Nuanced Neon {a mosaic contest}
table, pastels

With a bit of nuance, neon grows up.  Warm amber, soft ivory and dignified chocolate brown - neutrals temper neon's flame.  I see a vibrant summer wedding.  A soft, silky work of art.  Neutrals are a natural way to slow down neon's ways.

Nuanced Neon {a mosaic contest}
books, doors, crochet, flowers

More tricky, more subtle, is neon with soft.  Butter yellow interrupts neon's parade; soft sky blue blankets her march.  More light, more white washes neon almost pastel.  Eyes open wide to sparkling, joyful shades.

Nuanced Neon {a mosaic contest}
roll cart, pillows


Or try baby pink, a little soft spring green.  Smooth neon's rough edges with colors so gentle they all but disappear.  See if, as by magic, neon becomes some quiet pretty thing!

I invite you to join us for a Fabric Mosaic contest sponsored by Mad About Patchwork.

Carefully craft your mosaic of 9 fabrics from among the offerings at Mad About Patchwork. Choose fabrics to express your interpretation of Nuanced Neon.  Your collection of fabrics can be playfully bright neon or more nuanced with neutrals or soft shades.  Just make sure to include a few very bright colors.

Once you have your fabrics, the free Mosaic Maker tool makes it a snap to create a mosaic.  Copy and paste image url's from Mad About Patchwork.  To find url's first go to the item page, then right click on the image you want and choose "copy image URL".

To enter the contest, add your mosaic image to our collection here.  If it suits you, link to a blog post explaining your choices - that helps us spread the word about our contest.  But no blog post is required (you can put your image url in the url space).  Anyone can enter, anywhere in the world.

***Important Tip*** If possible, share your mosaic so that when it's loaded to the link up and you click on your mosaic, it takes viewers to see a larger version. This makes it so much easier for me to see your mosaic and consider it as a finalist!  Hosting your mosaic in a public place (such as Flickr or a blog) and linking the URL works beautifully!

Add your mosaic by midnight May 20th.  You can make up to 2 mosaics!  On Friday the 22nd, I'll open voting.   We'll have two winners!  The 2 Top Mosaics will earn a complete fat quarter set of their mosaic fabrics!!!  Winners announced May 25th.  Enjoy!


Wednesday, May 13, 2015

slouchy Mexico bag

So, that was a lot of itty bitty pieces...

slouchy Mexico bag

But the pay off is pretty sweet!  I'm crushing on Jolene's Mexico patchwork pattern big time.  A throw quilt definitely needs to happen before I can move on!  The throw uses larger pieces, so it won't take much more time than this did.

slouchy Mexico bag

I decided to turn my patchwork into a slouchy bag again.  Here's how I work with the pattern pieces from this free bag tutorial.  First I make patchwork, just exactly as my heart desires.  Next, I frame the patchwork with Essex Linen for a neutral surround that's wide enough for the pattern pieces.  Below you can see how I've cut the pattern apart so that I can use it for bags of various lengths.  Once I have cut my first purse-shape, I cut the rest to match.  From there, just follow the tutorial.  I promise it's easy!

slouchy Mexico bag

This time I followed the bottom edge curve of the pattern.  I'm liking the subtle shape it created.  And I'm also glad I added Essex at the bottom this time.  All together... it's a hit!

slouchy Mexico bag

And with a happy, summery lining in an Anna Maria Horner, Pretty Potent print!

slouchy Mexico bag

slouchy Mexico bag

Gah, I'll be sad to see this one go!  But, I trust it will be well-loved by a fellow patchwork fiend.  And there's always the next bag...


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