Rare Disease Day 2014

Switching gears from NEDAwareness Week. . .
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Today, February 28th, is Rare Disease Day!

What is a rare disease?

A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.

80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.

50% of rare diseases touch children.

source 

Cohen Syndrome has only 1,000 documented cases. Globally, we only have data on 160 cases. Clara is one of 1,000. Rare, indeed.

I will never forget the day we learned of Clara's Cohens and the geneticist looked me in the face and said verbatim "You really don't understand how rare this diagnosis is."

source 

Let's raise and join hands together in support of not only Clara, but for many others living with a rare disease.

Thank you for taking the time to love these kids, these people, these families, and those who work so very hard, everyday, to create the best scenarios and outcomes possible for those diagnosed.

Thank you for your support. 

It truly means more than you know. 

NEDAwareness Week 2014. . . a few midweek resources

To continue highlighting NEDAwareness Week, I thought I'd link up to a few resources I have seen around the web/social media/tv the last few days. Enjoy!

On Monday, the TODAY Show kicked off a "Love Your Selfie" Campaign that is running all week. The nine perky hosts of the TODAY show told viewers about their physical insecurities and appeared on live TV without makeup as part of their “Love Your Selfie” campaign Monday. But for all they criticized about themselves, they sure love taking selfies. All nine hosts snapped pictures of themselves as part of the campaign to spread awareness about self-image. Source. Read more: Today Show Hosts Love Selfies, Hate Selves | TIME.com http://healthland.time.com/2014/02/25/today-show-no-makeup-selfies/#ixzz2uQY8DWzE

Dad's letter to daughter: Forget makeup; your beauty is inside

I am worthy - By Katie Clemons via The Art of Simple

I Had No Idea - Allison (short clip speaking to Eating Disorders and Infertility)

source 

NEDAwareness Week 2014

This week is National Eating Disorder Awareness Week. 

February 23 - March 1, 2014

What is NEDAwareness Week?

NEDAwareness Week is a collective effort of volunteers, including eating disorder professionals, health care providers, students, educators, social workers, organizations and individuals committed to raising awareness of eating disorders.  The impact of increased outreach efforts leads to a greater chance of people seeking out resources and help for an eating disorder, which ultimately saves lives.

What are the Key Messages of NEDAwareness Week?

This year the National Eating Disorders Association is stressing the need to address eating disorder misconceptions - as many individuals, families, and communities are not aware of the often devastating mental and physical consequences - and highlights available resources for treatment and support. We urge you to talk about the pressures, attitudes and behaviors that shape these disorders with your family, friends, colleagues and community by doing just one thing during NEDAwareness Week. Learn more about the key messages for 2014 NEDAwareness Week and share with others so they can get in the know! source

Theme this year: "I had no idea"

source 

Click here to find an event in your community and to learn how you can get involved this week!

Or click here for a few FAQ.  

Also, Notorious ED blogger, Carrie Arnold, will be posting a little series this week on her blog, and I encourage you to check it out. 

I hope you will take the time to attend an event in your home town, or if nothing else, take a few seconds to read up on relevant ED information. There is always more to learn. And the more we learn, the more impact we will have, and the more impact we have, the better chance we have of ridding someone of this awful disease. Or better yet. . . preventing it. 

Weekend Links 2/21/14

Life
Talking about kids on date night, and other marriage rules I break - The Happiest Home
When motherhood doesn't go as planned - Inspired to Action podcast w/ Kathryn Jackson
When answers still don't come - True Worth

Eating Disorder/Mental Health/Self Esteem
Staying Positive - Surviving Anorexia

I'm adding a section on weekend links specifically for information surrounding children and special needs. I am learning new & fascinating information all the time regarding Clara's Cohen Syndrome, sensory issues, and other various special needs topics and while it might not apply or be interesting to the vast majority of you, I figure for a few it might be beneficial. So. . .when I find something worthwhile, I will post it here on Fridays. 

Special Needs & like info 
Making Sense out of Sensory Integration - The Sensory Spectrum (great post explaining the different types of SPD. Clara has Sensory Overresponsivity which basically means she has significantly more than typical noticing of sensory input - all her senses are heightened making sounds, tastes, smells, movement, etc more dramatic to her). 
Sensory Processing Disorder: Ambiguous but Real - UVA Health System Blog (gives similar explanations as the link above)

Such a good daddy. . . loves his girls and his girls love him!

Happy Friday!

Meltdown city

So. . . this has been my reality the past few days. Many days actually. Yes, I took a video of my children crying. That is probably making some of you cringe (no lectures needed) because why in the world would I not be trying to calm at least one of them every second of every day? Well, because sometimes you just have to take a few seconds and laugh at yourself. And the situation. And the insane amount of noise taking place in your (very small) living room. Or else one might have a nervous breakdown, no?

Thoughts on this. . .

If anyone knows how to run coffee via an IV all day long, please let me know.

If anyone knows how to grow another two arms, please let me know.

If anyone would like to pray, or laugh with me, please just go ahead, you don't have to let me know.

Two kids under two. . . bring it Wednesday!

Camille 1 month

Our littlest love turned one month on Valentines Day!

She is growing so fast!

9 pounds 12 oz

Size 1 diapers

Size 0-3 clothes

Eating: Every 3 hours during the day. She nurses well & also takes a bottle like a champ. 

Sleeping: She pretty much follows the eat-play-sleep routine on her own during the day, so she gets lots of daytime naps still. She can stay up to eat & play for about 1-1.5 hours then takes a 1.5 hr nap. She is doing well at night usually taking a late night feed around 10pm or so, then wakes 1x at night to eat, then wakes for the morning around 6am (this is all give or take an hour). I'll take it! Some nights are worse of course, but overall she is doing well!

Development: Baby girl is strong! Lifts her head high and turns it from side to side while on tummy time. She makes great eye contact & grasps my fingers tightly while eating. She is also tracking objects well for her age.

Misc: She started on a generic reflux med, which we feel is helping with some of her pain/fussiness when eating. Some days it seems to help control the spit up, some days not. 

Oh the spit up. So. Much. Spit. Up. She developed a pretty bad rash on her face, neck, upper arms, chest & back (can't see it in this pic). Dr thinks its a mix of baby acne and excema. We are thankful it isn't anything worse. Girlfriend gets doused in lotion several times a day! Camille stays busy daily, as she tags along to big sisters weekly therapy & medical appts. Such a trooper. Guess second babies kind of have to be, no?

Until next month. . . 

Weekend Links 2/14/14

Happy Valentine's Day! Our anniversary is on the 10th, which we always celebrate, so by default we never really do anything extra for Valentines. If our anniversary wasn't the same week, we would probably make Valentines more of an event or celebration I suppose. Do you guys go out for Valentines? Or make it a big deal in your house? I always love hearing what other people do & which holidays they choose to celebrate & why. . .

Some weekend link ups for ya. . .

Life
Why Exercising Your Gifts is Super Good for You - Holley Gerth via (in)courage
10 Things I said My Children Would Never Do - Scary Mommy (HILARIOUS AND TRUE)
Square Pegs, Round Holes and the Infinite Possibilities of Loving Your Child - Enjoying The Small Things (A post and perspective I needed to read/hear this week)
How much does our culture influence our values? - RATM

And if you need a good laugh on this day - please, please just read this. . . Why is my kid crying? Best ever. And so true. We are not quite fully emmersed in this stage just yet, but I am sure it is in our future. I should probably start praying now.

And some random pics of Clara . . . just because I think she is the cutest ever. . .

Enjoy the weekend!

On two kids under two. . . aka the comedy that is getting out the door by 7:45am

So last week was the first week totally, 100% on my own with both girls. Yes, Camille was three weeks old and I do understand how fortunate I am/was to have had so much help those past three weeks. Until then, I was not allowed to drive or lift Clara at all, due to restrictions associated with the c section.  So up until that point, Clara was spending the night at my parents a lot (b/c Brandon leaves early for work and I wouldn't have been able to lift her out of bed in the morning, lift her to her high chair, etc) and then they would bring her over every day so I could get some time with her. Or, she would sleep at our house & I would have help come first thing in the morning. On the weekends she would be home with us, since Brandon would be around to help with Clara's care.

Remember. . . she is aproximately 23 pounds and doesn't yet walk. :)

That said. . . So last Thursday. I was a little very nervous going into last Thursday. Clara has speech therapy at 8am, which meant we have to be in the car by 7:45am. 7:45AM. It is truly crazy how long it can take to get out the door with a toddler and a newborn. I am sure I will get the hang of it over time. Please just tell me this is so. But for now. . .  hello nursing, feeding, pumping, cleaning up massive amounts of Camille's spit up, changing approximately 500 diapers, cleaning more spit up, packing a bag the size of my house,  cleaning more spit up. . . I think you get the idea.

Oh and not to mention I still hadn't quite figured out how to operate our double stroller (aka a stroller the size of Texas) so I was toying around with just how I was going to unload two babies and get them up to Clara's appointment. . . on the 3rd floor of Texas Children's therapy bldg.

Do I put Camille in the Bjorn/sling and Clara in the umbrella stroller?

Leave Camille in the single stroller in her infant seat, push it with one hand, and carry Clara on my hip?

Suck it up and figure out how to use and haul the double stroller? Nope. . . we got no time for that this morning. 

Carry both babies simultaneously? Jk. Kind of.

Decisions. Decisions. Fueling this decision was four hours of sleep the night prior. Four hrs total. Less you think I meant consecutively. You're funny. Eight hours total in, what was then, the past 48 hours. Not complaining. I'm really not. Just giving the facts. Because the facts are important to understand my frame of mind at that moment. And yep, I pretty much looked like this woman right here. No shame. 

source

Anyways, I loaded us up (let's not mention I had not showered in 5 days, for real, oh my goodness. Those that know me well know that I certainly do not shower everyday but really, FIVE DAYS ARE YOU KIDDING ME???) and we headed out!

In the rain. . .

Because of course in the rain. . . and of course I didn't think to stash an umbrella in my car. How would I carry an umbrella anyways when carrying a toddler on my hip and pushing a stroller with my other free hand (yep - went with that option)? So really. . . I didn't feel too bad about not having an umbrella. 

And Clara lost a shoe on the way from car to the bldg. . .

And Camille was crying the entire time. . .

Which made Clara cry the entire time. . .

Which made me get all anxious and sweaty and nervous (which is not good when you haven't showered in five days) because both my girls were crying and people were looking at me like "Seriously lady can you not calm your crying children???". . .

But alas, we made it there, only 6 minutes late, crying and all.

So I had considered this a win.

Until both girls managed to spit up all over the therapy play mat. As in, the therapist had to clear all the toys, wad up the mat, and go get another fresh one. I am pretty sure Clara hasn't spit up in like, oh, 12 months, but of course on this morning. Because of course.

So for this week. . . I will learn how to use the double stroller. And pack an umbrella. And make sure my daughters shoes are securely attached before leaving our vehicle. And do whatever I can to help minimize the spit up.

Oh, and take a shower. You're welcome.

This would be me in the pic below. . . except I don't own a dog. And I won't be wearing a dress anytime soon. . .

source 

Weekend Links 2/7/14

This was the first week that I tag teamed the girls totally solo. My oh my. There should be an entire post dedicated to the craziness that is getting a newborn and toddler out the door for an 8am speech therapy appointment. More on that next week. . .

But for now, some weekend link love for ya. . .

Life
My word for the year is NO - RATM
In the nick of time - True Worth (Cannot imagine the emotions this mom is experiencing. Will you please read her words and join in prayer for this family?)
What you can do when life's storms hit - Dawn Camp via (in)courage
Don't grow weary mamas - Liz Griffin via Inspired To Action

Eating Disorder/Mental Health/Self Esteem
Recovery is every day, every moment - Surviving Anorexia
How to respond to rude or inappropriate remarks - The Sensory Spectrum
The sky is (not) falling: Setting the record straight on the so called eating disorder epidemic - ED Bites

And a pic from our little blogger meet up last night. Erika and Matt are in town, so of course a Mexican food get together was in order! And yes, I braved an evening out with both girls! A few other bloggers were there, including Amanda, but we didn't think to snap a pic until right before the last of us were leaving. So fun!

And because I can't leave without sharing a few pics of my littlest babe. . .

Don't let her calm and collected look deceive you. . . girlfriend hates herself a bath

Tummy time which quickly turned into nap time. . . totally conked on her own after a few minutes

Happy Friday!