"I should not talk so much about myself if there were any body else whom I knew as well."
-Henry David Thoreau

Monday, June 26, 2017

Weekend


JR brought Eleanor flowers this weekend.  She was smitten and carried them around all evening.  






 Post church and post Sunday afternoon nap. 



Friday, June 23, 2017

Eleanor

Eleanor is turning into a little girl and each day there's somehow a bit less of the baby left.  I keep making inappropriate jokes to Drew about how he should get me another baby.  He feigns chest pains every time I bring it up.
But really.  You guys.  My girl is beautiful and full of personality.  I can't get enough.



 

There's still some baby in those fingers.  Sweet, dimpled little fingers. 




Fun with my camera and the new flowers. 
  
We reached a new milestone today.  Eleanor played in the yard by herself while I read an entire chapter in a book.  It was a short chapter, but it was a chapter.  She played by herself!!!  When Drew got off work he had to mow, but Eleanor & I were able to relax on the deck while he worked.  Back porch sitting, a Minnie Mouse sippy cup, Sonic tea that I've refilled from home at least twice today, a lunchable for dinner, and a good book.  Summer is awesome. 
 
Side Note: I recently read The Glass Castle by Jeanette Walls and loved it. It's a memoir of her childhood living in poverty with parents who were wanderers.  I would highly recommend it.  I loved her writing style so much that I'm reading her other two books.  I'm currently into Half Broke Horses, a true life novel written about her grandmother's life.   I'm not sure that I ever elaborated on another book I recently read... Hope Heals by Jay & Katherine Wolfe.  It's a true story of severe health issues and very much a testimony of faith & God's healing.  I liked it, but mainly because it hit on some feelings that I felt on our journey with Alex & Emma.  It's hopeful (duh), but it's pretty heavy.  Not a beach read, that's for sure.  I'm a sucker for a good memoir.  If you guys have anything to recommend, let me know! 

Go Outside

I've been dramatic when it comes to telling you all about swim lessons this week, but I have to say that we wrapped week 1 on a good note.  Thursday morning's lesson involved no screaming or crying, so I consider that a win.  Also, sucker.  Winner, winner. 
 We spent yesterday evening in the backyard while Drew added steps and a planter to our new deck.  Eleanor drew on the studs for the steps before he assembled everything. 
 It was HOT and humid, but we had such fun. 
video

video


 This morning we went to Lowe's for soil & flowers.  Unnecessarily long pit stop at the slightly scary Mickey Mouse fountain.  Nobody tell her it's for sale.  Please. 
 Just us girls driving the truck today... and taking selfies while they load up our soil. 
 I'm a fan of my big, unruly, curly, frizzy mane.  It's wild & happy and it makes me feel like me :)
 Home with our loot...
Before flowers...
 I had a very specific method for planning this flower bed.  Step one: pick flowers I like.  Step two: try to pick perennials so they'll come back next year.  That's about it, y'all.  I know there are people who spend years in college learning to design landscapes and flower beds, but I'm not that gal.  I just really like pretty flowers and getting my hands dirty.  I'm so super pleased with this modest little planter because it feels like me... wild, unruly, imperfect, and happy (hence the reason for the selfie above). 



 We spent tons of time in the back yard before the deck, but we're enjoying it in a new way now.  I'll have to take a picture this evening, since everything is beautiful at dusk. 

Wednesday, June 21, 2017

Swimming?

I'm not sure Eleanor is going to win any awards from swim lessons this summer.  Perfect attendance, maybe.  It's not quite the idyllic memory maker that I had dreamed up in my head. We're making memories, that's for sure, but they include how cute she is in her Minnie Mouse swim suit and how she HAS to stop and sit on the bench on our way into the aquatic center. 
The memories include her perky little pony tail that keeps her bangs out of her eyes (you know, for when she refuses to put her face in the water to blow bubbles). 
 The memories include excitement over her very first lollipop. 
 Memories?  Yep, we're making them.  I'll remember how she's very loud and clear about how uninterested she is in doing anything on demand.  These girls (and I say girls because they can't be more than 18 years old) that are leading the class are timid & unclear and we aren't really getting much done.  They say, "Okay, now we're going to blow bubbles" and then they walk around the circle for the next 10 minutes as parents blow bubbles in the water and kids alternate between crying or staring blankly.  When they get to Eleanor and ask, "Can I see you blow bubbles in the water?" she screams, "NO!!!" and swats them away.  Those gals don't know what to do.  Gonna work with my toddler?  You'll need to be tougher than that.  Today, after yelling "NO!" and refusing to blow bubbles, the girl told her she could have a pool noodle if she blew bubbles.  Eleanor actually held her arms out for her and the girl didn't know what to do.  She reluctantly took her, but she missed the opportunity to teach Eleanor something in the process.  They're young.  I get that, but I think that next year I will do more research and get her in to a different place.  I hear great things from a friend whose little one is taking lessons at the Jones Center, so maybe we'll look in to that.  Two year olds in that class are learning how to come back up for air when they go under water.  They are learning to hold on to the side of the pool and how to climb out on their own.  We're blowing bubbles and  chasing pool noodles. 
I'm reminded of when Alex (and eventually Emma) first started physical therapy.  The therapists were asking them to do things that weren't easy or comfortable for them and there was resistance.  While part of my momma heart wanted a therapist that was gentle and comforting, the biggest part of me wanted them to have a therapist that was firm, encouraging, and willing to push them just far enough to reach their own potential.  Love on them.  Yes, please.  Love on them, but be firm and effective.  Cheryl.  I wanted Cheryl.  She wasn't (and still isn't!) a softie that was agreeable to doing the bare minimum and letting kiddos get away with not even trying.  Hey Cheryl, if you ever tire of pediatric physical therapy, please come be Eleanor's swim instructor!
Though this class isn't all I hoped it would be, I don't think it's a total waste.  I mean, she really did enjoy the sucker they gave her after today's class :-)
 Other stuff... my garden is growing like crazy.  I discovered cucumber beetles a couple of weeks ago and I'm afraid they have already done too much damage to the cucumber plant.  My understanding is that their real damage comes from bacteria that they introduce to the plant that results in this...
I discovered squash bugs (nasty, mean looking things) this past weekend, so I acted quickly and decided to use Sevin.  Hey, I'm all in favor of less pesticides and chemicals in/on our food, but my tiny little garden has helped me understand how super difficult that is.  I think I've knocked the squash bugs for now, the plants are growing like crazy, and I picked my first zucchini today! 

The tomato plants are doing fairly well.  I have some small fruit growing, but nothing ripe just yet.  (I had to buy tomatoes at the store on Monday and it hurt to give them money for something I know I'll have an abundance of very soon.)  They aren't growing quite a big as they were by this time last year, but I rotated beds this year and they are in the bed that doesn't get quite as much sun.  They are still growing and I think that the shade will help them last longer as the summer heat really takes hold. 

 Weight Watchers.  Apparently you have to do more than pay the membership fee if you want to lose weight.  Rip off, right?  I should have read the fine print.  Ha!  Yeah, I only stuck with it for a week or two and then we sunk back to our old habits.  We're all just doing the best that we can and right now my best is falling off the Weight Watchers wagon.  Know what I've learned from Eleanor's swim lessons?  My daughter doesn't care that I'm not the skinniest or most muscled momma in the pool.  She cares that I'm in the pool.  I'm in the pool, y'all, and that much makes me happy. 

Monday, June 19, 2017

Crushed It

When Eleanor & I were gone last week, Drew & John worked on our new back yard deck.  Eleanor & I came home to this! 
 On Friday Eleanor got a surprise package from Big Pam with these super fun popsicle holders.  Now she wants popsicles ALL THE TIME.  Are we outside?  Why aren't we eating a popsicle? 
 It didn't take much convincing to get Drew to take an afternoon popsicle break. 
 No matter the mood or the weather... this girl wants to be swinging. 
 Whew, it was hot last week.  Impromptu kiddie pool play with her clothes on. 
 Remember Kyle & Misty's leaky pipe the weekend they kept Eleanor for us?  Well it ruined the hardwood floors and it's all finally getting replaced this week.  Whose idea was it to remove the old floors?  (cough, cough, Kyle) 
 Yesterday was Father's Day and we had a nice, relaxing, rainy day at home.  When the rain stopped, we enjoyed a lovely evening on the back deck.  I'm not done decorating and arranging yet, but we sure are enjoying the extra space. 
 John came over to enjoy the fruits of his labor (hot dogs on the deck) for Father's Day. 


Pool noodle sword fight with daddy. 
 Today was our first day of parent/tot swim lessons at the Rogers Aquatics Center.  My intention in signing up for these lessons was to hopefully teach her skills to keep herself safe in the water and to learn some respect for the pool (since she's so comfortable at Kyle & Misty's and that's not always a good thing).
Eleanor was pumped up and loudly impatient about getting in the water.  Quietly wait your turn?  Yeah, Eleanor didn't get that memo.  We're working on it. 
Guess what?  We are spoiled by Aunt Misty & Uncle Kyle's heated pool.  The aquatic center pools were freezing and Eleanor wasn't pleased.  Really, though, this may be the coolest day of the summer so far.  It was barely 70 degrees outside and it rained quite a bit yesterday, so the water was quite cold.  Know what else?  In Aunt Misty's pool there are grown ups and big kids that gently push you around in a float and cater to your every whim.  In the toddler swimming class there are 10 other toddlers with varying degrees of pool savvy.  When we first entered the water Eleanor was 100% unwilling to do anything.  She clung to me like a baby monkey and screamed "No!" at every suggestion by the teachers.  Good thing they sent out a pre-lesson email to warn parents that this is expected and not to give up easily.  It took a little while, but she adjusted and by the end of our 30 minute session she had loosened up a bit and even agreed to give the swim instructor a fist bump.  Nothing she did today was anything new.  Yes, she gets to hang out in a baby float at Misty's, but she also gets held to practice kicking & splashing & blowing bubbles.  None of that was new, but the new part was having to do it in a "structured" situation with other little ones who also weren't so sure.  If nothing else, it's worth the 2 weeks & $70 just for that.  She'll get more comfortable in a new environment and with other kiddos and, fingers crossed, she'll start learning the basics and be swimming like a fish at a young age.
She squealed "Bye water!" when we went into the locker room to dry off.  She cried like I was torturing her as I peeled off her wet suit & put on a dry diaper and dress.  She freaked out when a lady in the locker room turned on the loud hand dryer.  Then she busted out the front gates and danced around with joy like she had totally crushed that swim lesson.
 We'll see how excited she is tomorrow morning when we go back.  Since it's so nice out, we went for a walk down to the playground when we got home.  This girl loves to swing and it's never long enough. 
One more thing, and it's a big one.  Two years ago I got an email from my contact at the NBIA organization.  NBIA is Neurodegeneration with Brain Iron Accumulation.  It's the broad term for what Alex & Emma had.  Their specific form of NBIA was PKAN (Pantothenate Kinase Associated Neurodegeneration).  We signed forms and provided all information & medical records from the girls' lives to this organization for the sake of research for a cure.  When Emma died (more than 5 years ago) we donated her brain to this organization for research.  We got an initial report a few months later, just letting us know that they did find iron accumulations in her brain and her diagnosis was fitting with PKAN (which we knew, but it was good to know they were studying it further) and that they would continue to use her brain for future research.
 This is the email I received from their organization in the spring of 2015:

... I want to personally thank you and your husband and
> let you know more about the research that has been possible only through
> your extraordinary donation. Your family¹s courage and commitment enabled
> us to make strides in our understanding of how the brain is damaged in
> PKAN. We now know that the tiniest blood vessels that carry essential
> nutrients and oxygen are progressively damaged, leading to a slow
> starvation of certain nerve cells in the central part of the brain. This
> breakthrough gives us a window into how brain cells die in PKAN and how we
> might circumvent this nutrient starvation to effect a therapy.
>
> Our research program spans from the laboratory to the clinic, always with
> an eye to improving the lives of children and families affected by PKAN.
> We come to work everyday to cure PKAN; that is our singular goal. We are
> interested in science, but we are intent on curing this disease. Your
> family is helping.
>
> I wanted your family to know that Emma is teaching us important lessons
> about PKAN. She is leading us to answers that will help families, and she
> will teach us long into the future. Thank you for your wisdom and courage
> in making this work possible. The whole PKAN community is grateful.

I'm telling you all of this for a really BIG AWESOME reason.  Last week the NBIA Cure organization made a huge announcement that could be life changing for current and future PKAN families.  Y'all... this could be HUGE.  It's not a done deal and there's much left to be done, but they've made huge strides and there's a very real possibility that they have found a new compound that erases all signs of disease in brains with PKAN.   I don't know that her brain led them to this specific discovery, but  at the very least we know that they learned from her and that she was part of the process to get to this point. You guys.  I cried and cried when I read this.  It's too late for my girls, but it's not too late for many others.  I'm praying for this discovery and the scientists & doctors involved.  I'm praying for the continuing process in the laboratory, with the FDA, for ample funding, and for the children & families that are hoping it all comes in time.  Read the article HERE and please pray with us.