The Pantry is Closed!!!

Do you have one of these on your pantry door???

I highly recommend installing one if you have children like mine. 

Children who could graze all day long if allowed. 

Independent little children who like to help themselves. 

Carb loving little children like my four year old. 

Children who have hungry little friends over every day after school.


If you answered yes to any of the above, I highly suggest you get a flip lock for your pantry. It does not exactly keep out seven year olds, but does make them think twice before unlocking the door.


Aside from J's eating aversions, I think I've done a pretty good job of educating my children about healthy food and treats. Treats are anything with sugar! I've given up trying to keep sugary treats out of my pantry because of J's eating issues (I'll blog about that another day). So they are in there and there isn't anything I can do about it right now! Those sugary little cereals and granola bars are just tempting my little ones to no end. 


So I made this...

A sign placed at a child's eye level with pictures of healthy snacks. We have pictures of a plate of fruit, vegetables (carrot), yogurt, cheese, crackers, sandwich or sugar free gum. So I informed my children when they are hungry and I say, "Healthy snack, please", they can choose a snack from this sign. I get kind of tired of the same old questions..."what can I have for snack?" And then I have to name the exact same types of healthy foods several times a day.


I'm hoping this will also help guide J to better eating choices and encourage her to try a new food. Although she still needs that sugary cereal. Crazy, isn't it?!?!  That one would NEED sugary cereal. But I'll blog about that tomorrow.

Oh, how I missed you...

Oregon is a nice enough place. It's mountainous in central regions, coastal in others. It's green! (Visitors to our lovely state always mention that...."it's green". Yes, lots of trees.) But the one reason I love this state is because every year I get to experience an Oregon January. During this month, just as we all lose faith in the cycle of our seasons feeling as if Winter will never end, the sun arrives for just a few days in January and brings us some beautiful 60 degree weather. Sixty degree weather!! While much of the rest of the country, particularly the East Coast right now, is covered in snow. 

Light sweater weather in January. It's fabulous. This weather always reminds me of how much I've missed my dear friend, the sun. I'm tired of getting my Vitamin D from a bottle and I just want to sit outside and enjoy it. These blue skies are enough to bring anyone out of their seasonal depression. And remind us all that Winter will cease, flowers will bloom and in just a few months, we'll all be swimming at the local pool and eating fresh produce from the garden. Ahhh...just the thought of it makes me smile. Maybe I should move to Arizona.

So why am I typing on my computer when I'd love to be outside sipping an iced tea and watching the kids play? Yes, it's not working out so well for me at the moment. J didn't get a nap and so we are taking a break from bike riding and hiking while we regroup and she gets a second wind. Hopefully, before sunset! So my Vitamin D will have to come in tablet form for today. But it was wonderful being outside in the fresh air. 

Even sitting at my computer, I have the back door open to keep from feeling stiffled in here. And just the sound of the neighbors basketball hitting the pavement is a wonderful reminder of what is to come. Sun! 

My hydrangea plant is sprouting.

And my blueberry bush.

A history lesson...

from CNN. I love CNN and could watch it 24/7. I love news, weather and politics. Throw a little Anderson Cooper in there, and I could just sit in my lazy boy all afternoon.


This week we have a real lesson playing in real time and with real lives. Egypt is in turmoil. Citizens are protesting the activities of the current government under President Mubarak. They want change and more importantly, a voice. So I let E watch some of the protesting with me. Nothing too violent as the majority of the images shown were of protesters marching and yelling. She was shocked that this was actually happening. And even more shocked when I informed her that our country wasn't always "free" and many people had to fight for the right to certain freedoms like speech. I told her that in many countries people are regularly arrested for speaking out against the government or military. I asked her if she could imagine what that would be like to live in a place where you couldn't say what was on your mind without the fear of persecution.


Then we stumbled on an American Girl movie "Felicity" which takes place during the beginning years of our country prior to the American Revolution. A character in the movie longs to be a soldier and "fight against the King". He longs for freedom just like the protesters in Egypt. What a great lesson! I love it when a plan comes together. 


I think it's important to show E that basically....she has it good! That is simplifying it, but I want her to know there are people in the world who are suffering and need help. I want her understand her freedoms and luxuries. Maybe someday she'll understand this further and be driven to help others less fortunate. 


It's important to know when you have it good...especially when you're seven!

Once upon a time...

J came home from school the other day and was so excited to tell me something wonderful. With a big smile on her face, she started to form the words to tell me about the obviously joyous event. 

Maybe she saw a fire truck on her bus ride to school.

Maybe she had a fun time playing in the gym or with the parachute.

Maybe someone had a birthday and they celebrated with cupcakes. 

It is complicated to tell a story and she paused for a moment to think this through. And then...gave up. Her shoulders slumped, she frowned and said, "No can say."

I hate those words. And I hate that I wasn't able to help her. I tried to ask her a few questions, but frustration overwhelmed her and she just wanted to leave things unsaid.

Storytelling is a very complicated process of organizing thoughts into events and a timeline. The most difficult part for J being the actual speaking. I can tell she has thoughts in that little head of hers, but getting them into spoken form is not easy. For a child with a pretty significant speech delay, storytelling is empowering. So we have been playing this game....

This is the "Tell Me A Story" card game. We have both the Circus Animal Adventures and Fairy Tale Mix Up games. There are so many creative ways to use these cards. 


Sometimes we like to shuffle the cards and take turns drawing one card. Whatever is on that card we have to incorporate into our story. Not as easy as it sounds.

Other times we like to arrange the cards along the floor and make a story board of our own choosing. 


This game just never gets boring! Always a new way to tell a story and the illustrations are beautiful and imaginative.


J is doing very well. She starts out with "Once upon a time"...points out a few animals on the cards or actions that interest her....then quickly ends with "The End". She'll get there!

How rare is rare?

I recently submitted a story to the National Organization of Rare Diseases. They are asking for written submissions from anyone affected by one of the many thousands of rare diseases. This is all in preparation for their annual Rare Disease Day, held this year on February 28th. They raise awareness and funds to support research for rare diseases. What I submitted to them was a brief summary of how rare disease affects our family.

My second daughter was born without complication. Being this was our second child, we had a certain amount of satisfaction knowing that this time we had experience caring for a newborn. This would be a breeze! At one of her early visits to our pediatrician, he mentioned that her head looked "odd". Dr Eddie said, "You are going to think I'm crazy. I like to research rare genetic disorders in my spare time and I think she has something called Klippel Feil Syndrome." 


At about 6 weeks of age, she was sent for a cervical spine xray. Diagnosing KFS is as easy as looking to see if any of her cervical or neck vertebrae are fused. Or it should have been easy. Our local "small town" radiologist confirmed Dr Eddie's proposed diagnosis. But because of the rarity of the syndrome, a pediatric bone specialist was called in to give his expertise on the matter and to verify what the radiologist believed he was seeing. This specialist informed all involved that J did not have KFS. It was just a simple case of torticollis that will resolve with some physical therapy. Great news! We signed up for physical therapy and after a grueling 6-7 months of manipulation of my poor girls' congenitally fused neck, we were sent to another specialist...who sent us to another specialist. We ended up at Shriners and on our first appointment it was confirmed. She had KFS which opened up a whole Pandora's box of associated conditions leading to a kidney ultrasound, echocardiogram, urinary function evaluation, more xrays, MRI's and a few audiology tests. She ended up with a diagnosis of KFS with a Sprengel's Deformity and tethered spinal cord. And later add to it a swallowing reflex delay and speech delay and we've got J turned inside and out. But at least we now had a direction. 

I imagined going home that day of the diagnosis at Shriners, to google Klippel Feil, finding all sorts of detailed information. Definitely more than the small bit I received at our appointment. I imagined whole websites dedicated to the condition. Information was what we needed. To make a long story short...there was nothing. Nothing! So how do we help this girl? How do I know what to do and most importantly, what to expect? Nothing. No clinical trials available, no known etiology, unknown incidence in the population. Nothing. 


So here we are four years later and we have put together more information than most pediatricians have. I have been in contact with numerous parents of children with KFS and read their blogs and facebook posts. I watch and learn. I guess since there isn't any research being done on KFS, I'm trying to put the puzzle together myself. 

There are over 7000 rare diseases affecting adults and children. An estimated ten million people are suffering from a rare disease and they have no where to turn. My family is lucky! J's prognosis is good, but there are many people suffering from rare diseases that aren't as fortunate.

It is true that if we knew more about KFS, we may have been able to diagnose J earlier. She wouldn't have had to cry and scream through hours of physical therapy to correct a condition that can not be corrected. I sat and watched this happen. It is also true if we knew more about the associated conditions, we would have been prepared for her swallowing delay and not just assumed that she liked to breastfeed. J has been through a lot! She has taught us a lot. Dr Eddie likes to say to J, "Again, you have taught me something new." 


It would have been nice to help her earlier. Instead, she is the one who teaches and helps us understand. Hopefully, so we can share our knowledge with others.