Monday, January 31, 2011

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.

Sunday, January 30, 2011

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.




Saturday, January 29, 2011

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!

Friday, January 28, 2011

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!



Thursday, January 27, 2011

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.

Wednesday, January 26, 2011

Late Night Activities

My seven year old goes to bed around 8:15pm. That's the time she gets into bed and we bid her a good night. After the light goes out is when her evening really begins. She has a book light and flashlight given to her to allow her to continue to "wind down". The rules are she must stay in bed and keep the light off, but she is free to read, write and play until she turns her small lights off and gives in to sleep. 


She is unique! I truly believe that E's brain needs to unleash math equations, spelling words, and creative stories until it quiets for the night. One last hurrah before sleep.


My favorite thing about this situation is going into E's room after she has walked out the door to school. I love to see what that little mind was busy with the night before.  Here are three things from last night.


A letter to the tooth fairy...



I found this to be interesting. I'm guessing the number of minutes she thought she'd read, or maybe she was counting Barbies. Who knows!



Then my favorite...




Although, I thinking she broke the rules and got out of bed to write this one.

Tuesday, January 25, 2011

My baby is 4!!!

My baby is four....thank goodness for small miracles. At times I didn't think I would make it through the baby stage. But the strollers are gone, highchairs have been sold long ago, as well as special bath tubs, cribs and the horrid Diaper Genie. 


Onto the next chapter in her life....




She's such a big girl!!!

Monday, January 24, 2011

Eye lift anyone???

I'm not really signing up to go under the knife, but as my eye lids get sleepier and sleepier needing to go to rest so close to my eyelashes, I wonder.  I don't think I could ever have plastic surgery. Just the expense is enough of a deterrent, not to mention the pain and risk involved. But seriously...I'd love to tack those things back up in their rightful place. Maybe then you could see my eye shadow. 


I could just walk around with a surprised look on my face. That is what I have to do every morning to apply my eye makeup. 


Are there exercises? So I googled it and what do you know, there are! 


Hello, You Tube!!!




And because I'm just sitting here drinking my coffee...kids are in school, I think I'll make this my own personal challenge. I'm going to take a before picture and compare it to an after picture somewhere down the line. Here is the before...




And I'm off to "exercise" my eye lids.

Sunday, January 23, 2011

Recycling Project

We need an industrial sized recycling can. I can't fit everything into one can so today we're making recycling art with the overflow.


We start with my this pile of "garbage".




I have cleaned everything that needs to be cleaned. No other preparation needed.


E starts planning. She loves this project.




Glue gun is out and she's ready to go. I've taught her how to use the glue gun. She feels very independent knowing how to refill the gun and keep her little fingers away from the metal tip.





She's going to be working on this for days so no picture of her final product. And who cares about the result. It kept us all busy, was creative and fun! Successful crafting afternoon.

Friday, January 21, 2011

An Underground Mom

My daughter gets herself to the bus stop and back. She's seven.


I let my baby ride the bus to her preschool. I just fasten her seatbelt, wave goodbye and she magically returns home around noon every single day. She is three...almost four.






I gave a flower bed to my daughter to use for her garden. It was a serious mess of strawberries, herbs, annuals and weeds with a unique lattice display right smack dab in the middle. It looked like crap for about six months of the year, but E thought it was beautiful.


I let my kids listen to my music and they know all the words. We like to have Glee dancing parties in the living room.


My kids use knives, scissors and hold sparklers on the Fourth of July.


They are allowed to play in the rain without an umbrella or a rain slicker.




And can you tell from this picture, I let them dress themselves?


Slumber parties are fun!


I tell my children, men can marry men and women can marry women. 


We eat meat and love animals. Maybe it doesn't make sense, but it works for us.


I feed my kids white bread when they ask for it.



My youngest is having a dinosaur-themed birthday party. She's a girl. It makes people laugh, but she just loves dinosaurs...and trucks, Barbies and baby dolls.

She's allowed to take her dinosaurs into fancy restaurants.




My kids watch Spongebob. They also love to read!


No video games in our house! Not because I'm against it. It just happens that my kids would rather be doing something different.


Sometimes my kids take the lead because I think it encourages them to think. Thinking is good.


My three year old (four next week) is not potty trained. She isn't interested. Raising a child with special needs makes you realize that trying to meet all the developmental milestones can be stifling and unrealistic. Diapers are much more convenient for me so I'm in no rush.


My word is not always the last word. I've raised my children to be good negotiators. This skill will come in handy someday.


And who doesn't love to climb trees!



Thursday, January 20, 2011

Iron and Chocolate

I've become a bit of an expert on that fabulously important mineral, Iron. My daughter has a severe Iron deficiency complicated by a feeding delay. It becomes a bit of a crisis when her Iron levels are low and there is no chance she'll consume anything containing Iron. Ferrous Sulfate is sold in a liquid form as a supplement, but tastes terrible and can stain teeth. So what to do? Anemia can cause many very harmful and lasting effects if left untreated. 

Fatigue
Dizziness
Cognitive Deficits
Irritability

My poor girl has all four of these symptoms...and some! She is almost four and still takes a three hour nap every day only to wake up cranky and irritable until she can retreat to her bed a few hours later. She is tired most of the day and is delayed in other areas. 

For a child who is anemic, taking a multivitamin like Flintstones with Iron can help maintain good levels, but isn't necessarily going to rescue her levels from the deep cavern where they currently remain. She has decided Flintstones tastes okay and she is consuming one daily with breakfast. That's 85% of her daily recommended dose of Iron. As stated, this is great, but not going to cure her of a severe deficiency.


Ferrous Sulfate drops would be an obvious fix. Unfortunately, she has medical, as well as psychological issues with eating. Forcing her to take rancid tasting drops several times a day would definitely set her back and further delay her eating a balanced diet which is the real goal. Luckily, her pediatrician understands this. So we have the drops, but the plan...don't let her know we have the drops. I'm now going to find ways to hide them in her food. 

This morning, we headed to Starbucks. I slipped a dropper full into her hot chocolate. Success!

This afternoon, half a dropper into some chocolate flavored pediasure. More success!

Tonight, dropper full into her regular milk. No go! (My husband's idea. I knew it wouldn't work, but you know...got to let him have his try at it.)

Tomorrow morning, I'll be mixing a little with her peanut butter before I spread it on toast. 

And we'll just do this step by step...and with lots of chocolate!


Wednesday, January 19, 2011

Be afraid!!

My seven year old is a ticking time bomb. She could go off at any minute. I definitely find myself flinching when I approach her in the morning or try to help her with homework in the hour after school. She can get mad...very mad! She doesn't want help, questions about school and sometimes she doesn't want to see my face. I stay out of her way whenever possible.


E has good qualities too. She is very passionate, highly intelligent and driven. But those qualities contribute to her explosive personality. E is very well behaved and ahead in many subjects in school. Her teachers in the last two years have done an amazing job at trying to keep her challenged, but I know there is more I can do at home. Lately, she has been focused on spelling words correctly so I would like to teach her some specific spelling rules. I'm really entering forbidden territory, here. So instead of a face-to-face lesson, I'm going to chicken out. I will be giving her a spelling lesson when we are on two entirely separate floors. She'll be upstairs in her room and I'll be safely on the ground floor with many stairs to separate us and most importantly, protect me from any potential rage. 


I wrote this on her white board today.




That's it! Lesson is over. It may not seem like much, but she's a sponge. In her own obsessive-compulsive way, she'll love this lesson. She'll probably gather her dolls and teach this spelling lesson to them before dinner tonight. And she'll never forget that these words require a "ph". Although I think I'll miss seeing her write "elefant". 

Tuesday, January 18, 2011

Food Face

Here is yet another attempt to get J to try some foods. Or touch or smell them. You may laugh, but one touch or smell might get her closer to putting something in her little mouth. Her therapist loves to get her to just touch the food and then kiss it. 


"Don't eat it, just kiss it." 


My mom found these plates awhile back. They are so cute and I love arranging food on them. 




Dinner is served! Yummy grilled shrimp, rice and green beans. 




It didn't work, but fun for me.  


Monday, January 17, 2011

Music

Driving on I-5 today with E, I had my Ipod set to "shuffle songs". Always a gamble  when I have so many of my kid's music downloaded. You never know what you'll be singing to and wouldn't you know we stumbled upon a song E and I used to sing when she was just a tiny toddling thing. It opened the flood gates and pretty soon we were both taking turns making requests from the "good ole' days". Some of our favorite artists were Charlotte Diamond, Rachel from Signing Times, and Jack Johnson. Well, I still like Jack!


These were songs and artists I hadn't thought about in literally two years or more! We sang to Diamonds appropriately titled, "Why did I have to have a sister?" We remembered all the words and even some signs to E's favorite Signing Times tune, "Silly Pizza Song". Fantastic music for little ones and easily tolerable for parents. Which made me ponder why in the world I now allow my three year old to sing the lyrics to "Bad Romance". Why did I give up on these simple, yet appropriate lyrics and melodies? Did it just get to be too much? 


I am going to blame it on Kidz Bop. As soon as I heard the 1980's hit, "I want Candy" recorded by a bunch of five year olds, I guess I thought it was now okay to listen to the original tunes. Because we all know that song wasn't written about M&M's and licorice. Then it snowballed. Now I have a huge Glee fan. Even though E has never actually seen an episode of the TV hit, she is obsessed with the music. 


It has made life easier. We don't fight over music in the car because we basically all listen to the same songs. On the other hand, it has the potential for serious embarrassment when your three year old is walking through Old Navy singing along with their overhead music. 


"Walk Walk Fashion Baby
Work it move that thing, crazy."

Sunday, January 16, 2011

I made pancakes this morning...half whole wheat flour and half white flour. Hoping no one would notice, I thought I'd try to slip in some of that healthy flour by making them in the shape of Mickey Mouse. It's an easy shape to make and actually the only shape I can make without the help of a pancake mold. 




So maybe my family would be so enamoured of my Mickey pancakes they wouldn't notice they were semi-healthy. And let me just mention, we used to be a 100% whole wheat family. Our bread, pancakes, tortillas and hamburger buns were all healthy all the time! I got tired of everyone complaining. And not only that, but E eats more fruits and vegetables than anyone I know so I'm not worried about her and a little white flour. And J ....she just needs to eat! Her doctor told me don't pay attention to cholesterol, fat or anything else...get her to eat new foods and lots of them. So that's how we got to this place. And now I'm hiding wheat flour in pancakes. Doesn't seem quite right. 

So I handed a pancake to J and she ate the whole thing. She loved my Mickey Mouse creation. Then my husband grabbed a couple, took a bite and said, "Are these healthy?" 


Saturday, January 15, 2011

YUM!!

I made a Moroccan stew for dinner tonight. It was a perfect mix of cinnamon, cumin and paprika. The aroma and flavor made me want to pack my bags and head to the North African country. Instead, I think I'll head to the library and pick up another cookbook. That's my life! 

Fundraising Tip

Medical bills pile up so quickly, don't they?!?! Parenting a child with severe disabilities or a life threatening disease is expensive. I wouldn't consider J's syndrome severe or life threatening...we feel very fortunate. Even with her mild to moderate medical issues, I cringe when the bills start rolling in. When a parent has to pay for feeding tubes and wheelchairs, cardiac surgeries and multi-week hospitalizations, there never seems to be a bank account large enough to cover it all. When a parent is caring for a medically fragile child, the last things they want to worry about are collection agencies and foreclosures. 


That's when friends, family, church groups and schools need to step in to assist with fundraising efforts. Mason, E's classmate, has cancer. We are helping their family raise money by selling "I heart Mason" bracelets. They arrived today.


Reminder Bands



Local businesses will be selling them and I can proudly report that we've already run out of 500 of the child sized bands! We buy them for 17 cents and turn around and sell them for $3.00. Awesome for Mason's fam!


These wrist bands are a fun way to earn money for a medical cause. 


And I'd love to report they are so comfortable and easy to wear!  I'm pretty sensitive to comfort issues so I had to mention that.  :) 

Friday, January 14, 2011

Sorting

Trying to put together dinner the other night...sometimes easier said than done. J knows where the step stool is and she likes to stir. 


As I made a yummy Chicken Tortilla Soup, I handed cans to J to sort. A sort of distraction to keep her out of my business, but also a great opportunity to talk about height and size concepts.


Big
Small
Tall
Short


I asked her to put the small ones together.


J stacked them like blocks.


I asked her to tell me which one was the biggest.


More ignoring and more stacking.





Twenty minutes later, can after can had fallen to the floor, and as I had my back turned, she sorted them by size like I asked. Good girl!



But never when asked!  Always when she is good and ready. 

Thursday, January 13, 2011

My Brave Girl

Maybe it's her experience...






Maybe it's her comedic personality...








Whatever it is, I want some of what makes her so courageous. Today J had a smile on her face for her labs at the hospital. And I mean through the needle poke, the blood draw, and the band aids. She smiled at the sweet ladies helping to hold her down. They had the easiest job in the hospital because J didn't struggle, move or make a sound. She just sat quietly, smiling.... and told them she was going to get a hot chocolate after she was done. What a girl!


J is 3 years old (almost 4) and I'm finding that medical procedures and hospital visits are really a piece of cake. We, her parents, are so used to the IV's, surgery prep, xrays, anesthesia, and the hospital waiting game. One thing that hasn't gotten easier over the years is how we prepare J for what is going to happen. As she gets older, I have to explain what is going to happen in terms she will understand. I long for the days as an infant, I could just nurse her when she was stressed or in pain or confused (and every moment in between...she loved to nurse!!!) Before she was verbal, no explanation was needed about where we were headed. We would strap her in her car seat and she would enjoy some pleasant dream-filled sleep before waking at Shriner's. She would happily walk, skip and jump from the car down corridors filled with other patients, medical equipment and scary people in scrubs. Frightening for most adults! Ignorance was bliss!


Our conversations now are limited to what she is able to understand. But unlike during her infancy, we are forced to have an actual conversation. A young child isn't going to understand much about future events so I wait until the day of to inform her of a procedure or office visit. No need to tell her the day before and ruin a nice slumber. Sometime before we are ready to get into the car, I start to talk about what will happen. 


"We are going to the doctors soon." 


"They need to make sure you are okay."


This is the kind of thing I told J before her blood draw. It wasn't until we were sitting outside of the lab, that I explained the rest.


"The doctor is going to need to see your arm. It will be very quick and then you'll leave with a band aid."


There was a worried look on her face when she realized a band aid meant owie so I followed it up with the all important bribe...


"And then I'll get you a hot chocolate and I have a new toy for you in the car. Would you like hot chocolate?"


OHSU and Doernbecher Children's Hospital have very good guidelines for preparing a child for a hospitalization or medical procedure. 


Preparing Your Child

I will definitely use this guide the next time J heads to the hospital. This list of books may be all a parent needs to provide that preparation.





Going to the Hospital, Anne Civardi and Stephen Cartwright
A Visit to the Sesame Street Hospital, Random House/Children's Television Workshop
Pooh Plays Doctor, K.W. Zoehfeld
One Bear in the Hospital, C. Bucknall
Going to the Hospital, Fred Rodgers
Franklin Goes to the Hospital, Sharon Jennings
Corduroy Goes to the Doctor, L. McCue



Wednesday, January 12, 2011

Helping Game

J doesn't share any of her things. She's at that age! She loves to say that E is not her friend and not even her sister if you are keeping track. 


Here is a game for improving coordination and balance as well as teaching about helping others.


Beanbag Balance Game


Each child has a beanbag and for 30 seconds runs around as fast as they can with the beanbag balancing on a hand. Playing fast music for that 30 seconds is a fun way to keep the kids moving. If they drop the beanbag, they have to freeze until another child comes to their rescue and replaces the beanbag for him/her. That player must try to "help" the other child all while continuing to balance their beanbag. 





The game gets progressively more difficult as the beanbag is then placed on an arm, 




shoulder,


and then E's favorite, on the top of her head.






E's class "performed" this game in front of the entire school during Monday Morning Gathering. As predicted, E spent days practicing and during the performance only dropped her beanbag once. 

Tuesday, January 11, 2011

Roller Eating

Dr Eddie is J's pediatrician. We think he walks on water! He was the doctor to first diagnose J's KFS at about 4 weeks of age. When most pediatricians mispronounce Klippel Feil, Dr Eddie was not only able to properly speak about KFS, but was able to make the diagnosis by just looking at Baby J. He's amazing! He told me in his free time he researches rare pediatric disorders. No wonder! 


He called today to check on J's feeding progress and her iron levels. I told him the only iron she ingests is from our Super Brownie's filled with spinach. He is going to check her iron levels this week, but is thinking a trip to the dietician may be in order. Dr Eddie is still very much hesitant about iron drops. Forcing a child with already pretty severe feeding issues to take drops of any kind could really hurt her psychologically and further prevent progress with her eating new foods. 


I'm excited to see a dietician, but I can only imagine the questions he/she will ask. 


DIETICIAN: "What does J eat?"


ME: "Peanut Butter, Milk, Super Brownies, Cupcakes, Whipped Cream, Macaroni and Cheese....yep, that about covers it!  She is even right now refusing bread and she just scrapes the peanut butter right off it."


DIETICIAN:  "Other than specific foods, what are her current eating habits?"


ME:  "She eats at the kitchen table for breakfast, lunch and dinner and she does get a few snacks during the day.


Oh and maybe I should mention, she doesn't actually sit at the table. She prefers to eat standing next to the table wearing roller skates."






Maybe I should leave that last part out.

Monday, January 10, 2011

Rare Disease Research

I visit Klippel Feil Syndrome websites and online groups quite often. I like to stay abreast of any new research as well as connect with other parents who have children with KFS. On every website dealing with KFS, there is one name we, as parents, are all familiar with. One lone researcher living in Australia studying KFS and possible chromosome involvement. Dr Raymond H. Clarke was able to identify a gene that may be responsible for the syndrome in some patients. Dr Clarke was our only hope of discovering more about this syndrome and apparently he has moved on. Breast cancer research. A very important topic of research, but where does that leave my child?

Studying rare diseases doesn't just help the small population directly affected, but any research and any knowledge gained about our medical health can and will directly benefit the population at large. Take KFS as an example. KFS is a rare congenital disorder affecting approximately 0.2 cases to 0.7 cases per 1000 people (Gjorup & Gjorup, 1964). True incidence is not known because of the lack of cross sectional studies of the general population. The incidence could be greater than we think knowing that many people have a very mild form of the syndrome and aren't diagnosed until adulthood and entirely by accident not experiencing any symptoms whatsoever. It's probable, many people escape diagnosis completely. 

KFS is defined by a congenital fusion of the cervical vertebrae. Leaving out the other associated conditions, KFS deals with the spine, vertebrae and brain. It's quite possible and probable that researching KFS will lead to more information that could benefit people with other congenital spine disorders or people who have traumatic injuries to the spine and vertebrae. When you look at the list of associated conditions, this research could also lead to more information about deafness and kidney disease. 

We also have a moral obligation to children and their families. The truth is that I probably know more about KFS than most pediatricians or WebMD. Having a child in the house with KFS and speaking to other parents of children affected, I know there are more associated conditions than listed on any website or orthopedic pediatric textbook. Parents of these children, could write a wonderful addendum to the tiny KFS section of any medical textbook.  

Luckily, there is a nonprofit organization raising money for rare disease research. The National Organization for Rare Diseases raises funds to support rare disease research. 


Raising money and raising awareness by celebrating Rare Disease Awareness Day, February 28th, 2011. In addition, the Global Genes Project is asking people to wear jeans on February 28th. Because it's in the genes!  :)

Here is an older video by the Global Genes Project that I really love.  




Sunday, January 9, 2011

Man's Best Friend

We were a petless household for a few years. Two reasons...Owen and Stormin' Norman. 


Let's begin with Owen. I brought Owen home from the humane society when he was about 6 years old and I was living the single apartment life. He was a big baby, gave love bites and was the size of a bulldog. Occasionally, he would leave me little vomit presents around my apartment, but I didn't have children so wasn't bothered by the extra work. And he was so cute! I seriously loved my senior cat. Then E came along. Little nighttime presents he sometimes left right smack dab in the middle of the hallway. So nighttime feedings for my human baby at times included stepping in the little presents. He is lucky he lasted as long as he did. After scratching one of the kids, he was sent away. 


Stormin Norman was a tiny yorkshire terrier. No more explanation needed! Terriers are horrible to house train and incredibly stubborn in every other area. He loved himself and was very much disappointed in his family. We just weren't trainable. He required such a high standard of life and he was also sent away after biting one of the kids. 


Wonder why both our animals wanted to hurt our children???




They do look like they are guilty of something!


So after about a year of E begging for a pet, we gave in. I did a little research and decided on a guinea pig. I'm not really into rodents of any kind, but all the "pet experts" love guinea pigs for their hardiness and ease of care. Great pet for small children! We got to the pet store and went straight to the Small Animal section. The guinea pigs were on sale....$38.00 each. Are you kidding me? The rats were $7, gerbils were $5 and hamsters were on sale for $4.50. We could buy a hamster and a cage for the price of one guinea pig. Plus guinea pigs live to be 8 years old and you are assured much less of a commitment with other small rodents. That's a negative for the guinea pig! I'm kind of partial to a more disposable pet, but after some conversation, we decided to take the plunge. 


Now three months later, we have adorable little "Snow". Her full name is Snowflake Sarah. She started out in a hall closet and we would just walk by and give her attention. Maybe hold her occasionally. She is now officially part of the family and we keep her mostly in our great room area...okay, she's in the kitchen. We do move her when we have guests. But otherwise, she is right in the middle of the craziness that is our household. 


It did take some time to tame her, but she is now very attached to her humans. During her floor time in our living room, she will run right up to any of us for a little love...even J! That's amazing that a little tiny animal would run up to a scary toddling girl! Maybe she isn't that smart, but we love it. 


Here are some reasons guinea pigs are THE best pet.



  • Take up a small space
  • Affectionate and social with their humans
  • They play
  • They aren't tiny and one fall from a toddlers arms wouldn't hurt them badly (although we won't test this idea)
  • Cheap to feed
  • Easy to clean up after
  • And she's a little garbage pail...if you have ever bought a bunch of parsley or cilantro only needing a tablespoon or two, Snow will eat the rest over the next week. She eats the bad end of a carrot or celery and kale stems. Wonderful!



Here is little Snow!  Man's best friend...





Yes, her eyes are red. That's not just my camera flash. You get used to it!



Saturday, January 8, 2011

Pop the Pig

This is such a fun game. It was a gift from Aunt Julie.



We like it because it's silly! But it also helps J with color sorting and beginning to recognize written numbers. Aren't games one of the best learning tools?!?!

This is the game and J can't play until she sorts colors. It's what she does best.


E was home sick and played with us. She helps J with the counting.



Each hamburger is color coded and has a number on the back. One roll of the dice and you choose a hamburger, put the little hamburger into the pig's mouth and push the pig's head the number of times written on the back of each hamburger. 



The pig fills with air every time his hat is pushed until...POP!  The pig gets so fat he explodes. What kid doesn't just love an exploding pig???