God's Promises

God never promised a life without pain,
Laughter without tears or sun without rain.
But He did promise strength for the day,
Comfort for the tears and a light for the way.
And for all who believe in His Heaven above
He rewards their faith with His everlasting love.

Author Unknown

When You Wish

A great rendition of a sweet song with some of the best lyrics ever....

Designer Genes

In the US alone, nearly 30 million Americans suffer from one of 7000 rare diseases, that's 1 out of every 10. Multiply that by each of their family members and friends, that's a lot of people affected by a rare disease. The names are hard to pronounce, the symptoms difficult to deal with, yet none of that matters. Every day parents watch their children struggle just to live and in many cases they die waiting for an answer. Personally, I know of far too many Angels.

Now imagine this is your child and you are one of those people. Wouldn't you be begging for help too?



Speaking from personal experience, having (a child with) a rare diagnosis is a difficult road to travel alone. It makes support and more importantly, information vital. Sometimes worse than being 'undiagnosed' is having a rare disease diagnosis because there aren't many resources available to help newly diagnosed families. You are in a haze of doctors and opinions with often no one to turn to.

Our own genetic journey has spanned over twenty-seven years and today we are no closer to an answer than we were the day we started. But we are hopeful that someday researchers will crack the code and we will have our answer. In the meantime, we will continue to treat the symptoms and conditions that our desiger genes carry.

Since I have started blogging I have "met" a handful of families that are also diagnosed with Branchiootorenal Syndrome, that's five more families than I knew nine months ago. I know we are not alone, but we need your help.

"The rare disease patient is the orphan of health systems, often without diagnosis, without treatment, without research, therefore without reason to hope." ~ Rare Disease Day 2010 website




There's a movement, you can be a part of it. All you have to do is wear your favorite jeans on Sunday, February 28, 2010. That's it. Skinny jeans, Bootcut, Designer, Acid wash, I don't care...as long as you support hope.

Some causes get a ribbon, we get an entire article of clothing that's how important we are!!



The Global Genes Project and Children's Rare Disease Network are teaming up with International, National, Parent organizations and bloggers from across the world to promote World Rare Disease Day, it's a grassroots awareness effort.


Discovery Health will air the World Premiere of Disease Detectives, based on real-life cases from the NIH Undiagnosed Diseases Program, on February 28, 2010 at 8PM, check your local listings.

If I Had My Life to Live Over

by Erma Bombeck

I would have talked less and listened more.

I would have invited friends over to dinner even if the carpet was stained and the sofa faded.

I would have eaten the popcorn in the 'good' living room and worried much less about the dirt when someone wanted to light a fire in the fireplace.

I would have taken the time to listen to my grandfather ramble about his youth.

I would never have insisted the car windows be rolled up on a summer day because my hair had just been teased and sprayed.

I would have burned the pink candle sculpted like a rose before it melted in storage.

I would have sat on the lawn with my children and not worried about grass stains.

I would have cried and laughed less while watching television and more while watching life.

I would have shared more of the responsibility carried by my husband. I I would have gone to bed when I was sick instead of pretending the earth would go into a holding pattern if I weren't there for the day.

I would never have bought anything just because it was practical, wouldn't show soil or was guaranteed to last a lifetime.

Instead of wishing away nine months of pregnancy, I'd have cherished every moment and realized that the wonderment growing inside me was the only chance in life to assist God in a miracle.

When my kids kissed me impetuously, I would never have said, "Later. Now go get washed up for dinner."

There would have been more "I love yous". more "I'm sorrys"... but mostly, given another shot at life, I would seize every minute...look at it and really see it... live it...and never give it back.

World Down Syndrome Day

Down Syndrome International (DSI) has officially earmarked 21 March as World Down Syndrome Day (WDSD). The date was chosen to signify the uniqueness of Down syndrome in the triplication (trisomy) of the 21st chromosome and is used synonymously with Down syndrome.


For ideas on how to celebrate WDSD, head to Down Syndrome NSW.

Step By Step

by Nicole of Reaching the Stars Step By Step

A few months before getting pregnant with my youngest..I had this feeling something would "go wrong" with this baby.I kept telling myself it's a lie and never spoke of it to people..I thought it was just fear...During my pregnancy with him, that thought would creep in every now and again. When it did I just prayed and let it go as nothing more then Satan trying to provoke fear in me.

My sweet baby was born May 24th 2009 at 2:50 p.m. He was 7 lbs, 10 oz, 22 in long.. Perfect in every way! After being cleaned and checked he was handed to me to feed. We took pictures and many started to come in to visit him. About 30 min after birth he was very very shaky and had low blood sugar ...He was taken from my arms and sent to the NICU. My husband left with him leaving me alone with my thoughts...Let me tell you all those fears came flooding in like a dam that just broke. At this point I had never told anyone of that nagging fear that seemed to linger around.I felt as if Satan was dancing around me with joy. My bf came up there after getting the text and wheeled me down to the NICU to see my baby boy..He seemed fine to me minus the shaking. After about 5 hours he was sent back to my room and all was said to be ok....

That first night he was a fussy lil one and seemed to either be hiccuping or sneezing all the time. But being my third I wasn't over concerned "just tired". We went home that next day.

At day 8 is when things just started going crazy..He woke at 1 am with crying and by 2 that afternoon I called the doctor saying he was shaking and crying uncontrollably. His doctor advised me to take him to the er since he had a low blood sugar history. The hospital admitted him being so young and how bad he was crying..We stayed there two days in which he cried and never slept, THE DOCTOR WAS BAFFLED, his fin diagnose was he had allergies to my breast milk.. So I went home and stopped eating everything to no relief in sight!

It wasn't till he was 3weeks that I was at the ER again, it was 1 in the morning and I was alone..His "doc" walked in and my world came to a screaming stop.. I think I may have quit breathing for a moment. He said, "you may want to get him checked for brain hypoxia." Me not having a clue what that was asked and that's when I first heard the words Cerebral Palsy.

So we made an appointment with a specialist, and the first visit she said he was fine, he just had an immature nervous system..We left and the ladies that came there with me were so happy and I also wanted to be, but as his mom I just knew there was something more.I had no clue what but it was I just knew can't explain it kinda feeling!

Well we went back every two weeks for a few visits, the Dr. wanted to keep an eye on him she ran tons of test and all came back good. He wasn't improving though how she thought he would. She then gave him the title of Dystonia and the mild Cerebral Palsy but was confused on the CP because he has some really good days in between the bad!

We made an appt. to St. Joes Neurologist department when Carter was 8 weeks old,he is now 9 months and we have two weeks left!

I was telling my mother in law that I am expecting the office to have streets of gold with how long it takes to get seen there! They are ranked one of the top neuro places in America!! I am hoping for answers but after so many times it seems he is always doing "good" when at the Dr. We shall see! Say a pray for us that the Lord will show us what needs to be seen!

Try This Tuesday: Medical Badge

Today's post comes to us from Candace and Faith. Be sure to stop by their blog, Living With Faith, and learn more about this sweet little girl and her family.

Faith has this love affair with those little clips that nurses put their badges on. You know, the ones with zip cords that can be pulled out.
She loves to beg these off of our nurses...wherever we go. They always give it and let her play with them.

So when we went for her one month follow up, at Shriner's last week, one of her nurses had bought her this fancy one with her initial on it!
It was so cute and diva~ish
So I got to thinking that I needed to do something creative and meaningful with it.

It also got me thinking about how people see Faith and sometimes ask me about her, like she isn't there or she doesn't understand them. They often talk "over" her. I have developed a way to combat that by saying things like.."Faith tell them how old you are.." or "Tell them hello" so they have to refocus their attention and then realize that she is able to understand them, most of the time. So I decided to put my mind making Faith her own id badge. This is what I came up with....



I found these self sealing laminating tags from my favorite place on earth, BIG LOTS for a dollar. (Two to a pack)



Then I cut two pieces of scrapbook paper and a picture of her and pasted them together....



Then I used leftover scrapbooking sticker to write on the front of the card...



I hung the tag on her wheelchair right where people can see it. She actually met a young man at a local church on Sunday, thru her badge. He came up and wanted to know about her name and how she got it. He was very kind and very friendly!
SUCCESS!
Now my next goal is to teach her how to pull on it and hand it to people when she meets them!

I also use these pouches to list emergency info for her on her car seat, wheelchair and bags. I usually list phone numbers, identifying info about her, info about her conditions and medication lists.








Thank you Candace and Faith for sharing this great idea with us

"Different... Not Less"

Temple Grandin: an HBO Movie.

Louder Than Words

The award-winning 'Talk' portrays a society in which non-disabled people are a pitied minority and disabled people lead full and active lives. Jonathan Kerrigan plays a business executive whose negative preconceptions of disability are dramatically shattered. This is definitely worth your time if you haven't seen it already....

What Faith Can Do

Everybody falls sometimes
Gotta find the strength to rise
From the ashes and make a new beginning
Anyone can feel the ache
You think it’s more than you can take
But you are stronger, stronger than you know
Don’t you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

It doesn’t matter what you’ve heard
Impossible is not a word
It’s just a reason for someone not to try
Everybody’s scared to death
When they decide to take that step
Out on the water
It’ll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

Overcome the odds
You don't have a chance
(That’s what faith can do)
When the world says you can’t
It’ll tell you that you can!

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do
That's what faith can do!
Even if you fall sometimes
You will have the strength to rise

Stand

Here's a picture of Chloe standing in her stander....


She works SO HARD to stand. She truly finds out what she's made of every time she stands. And she teaches me that we're all capable of so much more than we realize, if we're willing to work hard.

Olympic Bingo

Head to Classroom Jr to get FREE printable Olympic Bingo cards!

We Are All Angels

Many people think angels are no longer here,
Like in the scriptures of old when they'd always appear.
Our angels today don't have halo's or wings,
They just go through their lives doing natural things.
They may take out the trash, and work long, hard hours,
But they listen with care or cheer others with flowers.
They may love to eat chocolate and sit down to relax,
But always help ease the burden on many weak backs.
They may like to play games and have fun with friends,
But are the type of a person on whom many depend.
We are all angels without halo's or wings
And we must realize we're capable of miraculous things.

Author unknown

Gold

Published February 15, 2010 by:

Tina Molly Lang of Associated Content

Canadian Alexandre Bilodeau dedicated his Olympic gold medal to his brother, Frederic, who has cerebral palsy.



Alexandre Bilodeau won with a score of 26.75 on the men's mogul, narrowly edging out defending champion Dale Begg-Smith (26.58). American Bryon Wilson earned a surprise bronze medal with a score of 26.08 (as reported by Washington Post).

Alexandre Bilodeau has won the first Olympic gold medal on home territory. On Saturday, Canadian Jenn Heil had just missed the gold medal after being edged out by American Hannah Kearney in the women's mogul.

And figure skating enthusiasts likely remember the 1988 Olympics in Calgary where American Brian Boitano narrowly won the men's gold medal over Canadian Brian Orser. After the close calls with Heil and Orser, the home crowd was finally able to witness an Olympic gold medal performance.

Dale Begg-Smith had a tight and clean performance, though Bilodeau and Wilson had more difficult elements in their runs. Had Begg-Smith won the gold instead of Bilodeau, it would likely have been a slap in the face to the partisan home crowd. Dale Begg-Smith is a Vancouver native. However, he has dual citizenship and was representing Australia at the Olympics.

After his run, Alexandre Bilodeau kept talking about how he won this for Frederic, his brother. He credits his brother's influence for contributing to his success in the men's mogul.

As Bilodeau told the Toronto Star, "I'm pretty sure I wouldn't have the same perseverance if I didn't grow up with him. I'm someone who never quits, even in training. I'm going to fight until the last moment, until I crash really bad."

Whenever Alexandre struggled with the ins and outs of competition, he would ask himself what his brother would have done in the same situation. Having a brother in a wheelchair must have given him a sense of perspective. Even in the most rigorous moments of training and practice, he could always remind himself that his brother would never have even had the opportunity to do what he was doing.

MedLine Plus defines cerebral palsy as a "condition, sometimes thought of as a group of disorders that can involve brain and nervous system functions such as movement, learning, hearing, seeing, and thinking."

According to CerebralPalsy.Org, an estimated 800,000 Americans have cerebral palsy. And about 10,000 babies in the US will develop cerebral palsy every year.

Yet while Frederic may have limitations, it doesn't affect his ability to be a big brother to Alexandre. As his coach told Toronto Star, "He's smart. He's just slowed down. But he's been pushing Alex and keeps him also on the ground. I really believe that the calm we're seeing in Alex, a bit of the serenity comes from that."

Try This Tuesday: Clothing Options for G-Tube Access

Something that is frequently on my mind is Chloe's nutrition. One very real possibility is getting a g-tube in the future to ensure she gets the proper intake that she needs to thrive and succeed. I've been thinking about that possibility and how it will affect.... her fashion, of course! I came across these items, though, that bring peace to my mind. If we do need to get a g-tube, Chloe can still be fashionable!

Tummy Tunnels

These are iron-on patches that go over shirts or onesies....



Bundie Medical Onesies

The front panel is equipped with two special pockets. A smaller front pocket on the left stores gastrostomy tubing. It is designed to hold a standard nursing pad as well to absorb leaks....



For more ideas on adaptive clothing, head to adaptations4kidz. Heidi always has great ideas!

Brave in the Attempt

Let me win.
But if I cannot win,
let me be brave in the attempt.
Special Olympics athlete oath

Answered Prayers

"Our prayers are answered not when we are given what we ask but when we are challenged to be what we can be."
~Rabbi Morris Adler

Video Game for Children with Autism

EASe Offroad is an exciting driving game that takes the player through a lush landscape in search of glowing 100 and 500-point targets, while EASe music plays automatically in the background. In their buggy of choice, the player will explore two large-scale levels: an exotic desert island, and a hilly meadow bordered by towering red rock canyons. EASe Offroad features a realistic terrain, complete with flowers and tall grass, so watch out for boulders and trees! While playing EASe Offroad, the player will experience vestibular challenges, as their buggy bounces and leaps across hilly terrain. Visual challenges are also inherent in the pursuit of targets from a distance, and in foliage flying by. EASe Offroad’s buggy is controlled by the mouse, and is selectable in multiple colors and two speeds: a slower speed for beginners, and a faster buggy for more adventurous players.

We have had a very positive experience with EASe Off-Road. From the start Zach was curious about the game and liked playing it. I thought we were going to have an issue when he drove his buggy into some water. He hates crashes. He started to melt down, then realized that his buggy didnt crash into the water, that he was able to drive through it and back out onto the terrain. He continued to play and began enjoying it more.

We have had the game for few weeks...and I have to admit, Zach plays it everyday. How can I refuse to let him play a game that he personally asks for every single day. He hums along to the music and has his own name for the game, asking to play "cars". I love that he is enjoying it so much.

At first I wasnt sure if he was getting anything more than enjoyment out of it, but the other day I saw a positive effect from the game. Zachary still has problems toilet training and we were in the bathroom cleaning up. Zach was not listening to me much and was not cooperating well. I was getting frustrated and started to yell at him. I myself should know better than to yell, because typically this just upsets him more and he will bang his head into the wall very hard. This particular time as I yelled, instead of banging his head, he started humming one of the songs from the game, and then started to cooperate!!! I couldnt believe it. He found a new coping mechanism, and a much more productive, positive one at that!

The EASe Cd series has been used effectively since 1996 by many tens of thousands of parents, therapists, schools and organizations the world over to help children on the autism spectrum learn to cope with noise and balance issues.

The purpose of all Electronic Auditory Stimulation effect (EASe) products is to stimulate, challenge, and promote sensory processing in children on the autism spectrum and others experiencing difficulty with sensory processing and organization.

The EASe audio CDs are the original disc-based auditory stimulation program. As it is difficult for many children to just sit and listen to music, children were allowed to play with toys or video games while listening to their EASe audio CDs. Now with the EASe computer games, children can listen to the audio, while enjoying stimulating, fun and nonviolent driving and flying video games.

I received this game for free to review on my site. You can visit The princess and the monkey to see the full review and for a giveaway of EASe Funhouse Treasure Hunt game.

Family Tree

In every conceivable manner, the family is a link to our past, a bridge to our future. ~Alex Haley

I think this family tree idea from Stories by Me is a fun (and decorative!) way to teach your children about their ancestors, and to truly remember and celebrate your heritage every day....



It reminds me of this song, so I just had to share it!....

Credenda

I'm pretty sure I've shared this on kidz before, but it has recently touched me, and I wanted to share it (again!)....


Credenda
by Og Mandino


Turn away from the crowd and its fruitless pursuit of fame and gold. Never look back as you close your door to the sorry tumult of greed and ambition. Wipe away your tears of failure and misfortune. Lay aside your heavy load and rest until your heart is still.


Be at Peace. Already it is later than you think, for your earthly life, at best, is only the blink of any eye between two eternities.


Be Unafraid. Nothing here can harm you except yourself. Do that which you dread, and cherish those victories with pride. Concentrate your energy. To be everywhere is to be nowhere. Be jealous of your time, since it is your greatest treasure.


Reconsider your goals. Before you set your heart too much on anything, examine how happy they are who already possess what you desire.


Love your family and count your blessings. Reflect on how eagerly they would be sought if you did not have them.


Put aside your impossible dreams and complete the tasks at hand. No matter how distasteful. All great achievements came from working and waiting.


Be Patient. God's delays are never God's denials. Hold on. Hold Fast. Know that your paymaster is always near. What you sow, good or evil, that you will reap.


Never blame your conditions on others. You are what you are through your choice alone.


Learn to live with honest poverty, if you must, and turn to more important matters than transporting gold to your grave.


Never meet trouble halfway. Anxiety is the rust of life. When you add tomorrow's burden to today, their weight becomes unbearable.


Avoid the mourner's bench and give thanks instead, for your defeats, you would not receive them if you did not need them.


Always learn from others. He who teaches himself has a fool for a master.


Be careful. Do not overload your conscience.


Conduct your life as if it were spent in an arena of talents. Avoid boasting. If you see anything that puffs you with pride, look closer and you will find more than enough to make you humble.


Be wise. Realize that all men are not created equal for there is no equality in nature. Yet no man was ever born whose work was not born with him. Work everyday as if it were your first, yet tenderly treat the lives you touch as if they will end at midnight.


Love everyone, even those who deny you, for hate is a luxury you can't afford. Seek out those in need.


Learn that he who delivers with one head will always gather in two.


Be of good cheer.


Above all, remember that very little is needed to make a happy life.


Look up, reach out. Cling simply to God and journey quietly on our pathway to forever with charity and a smile.


When you depart it will be said by all that your legacy was a better world than the one you found.

Hope For Little Hearts

Hi we are the Sabins. We live in Orting, Washington. We have 4 Children Logan 7, Brody 5, Rafe 3, and Cammie-Jean 1. (Mom Melissa and Dad Jacob) Brody was diagnosed in July of 2007 with Left Ventricular Noncompaction (a form of Hypertrophic Cardiomyopathy)

*Just a warning these statistics may seem dreary, but there is hope in every situation, and please keep in mind that of course we hope for the miracle. Which is why we named our foundation Hope For Little Hearts.



I remember being pregnant with Brody. I remember how excited I was. I had a miscarriage before him, and was so excited to be pregnant again so soon. I had low amniotic fluid while I was pregnant with Brody. I remember not being afraid, I was monitored every week for it. (Little did I know that was just the beginning of the doc appointments.) Well fast forward to August 5th, I was eating my cereal and yep my water broke. 6 weeks early!!! So off to the hospital we went. They took me down for a ultrasound, and sure enough all the amniotic fluid was gone. So 1hr later I was having a c section. I remember the first moment I saw him!!! I only got to see him for a second and then he was whisked away to the NICU. He spent a week in the NICU which isn’t bad for being so early. His doctor was concerned with his growth from the beginning. They tested all sorts of things. We started with cystic Fibrosis, then a swallowing study, then off to endocrine, then endocrine sent us to GI and finally GI to genetics. I kept asking them to test his heart. But they kept telling me I was wrong. So I figured they were the doc. Then I ordered all of his medical records and started doing research myself. Upon reading through the records I saw things like “mother refuses to follow diet plan” mind you their diet plan to bulk him up was to sit him at his high chair with a cube of butter. Lets just say good thing I didn’t. The thing that caught my eye was that his chest medical records showed peri-bronchial cuffing in his chest which is a sign of heart failure. So I called a cardiologist that day. I decided to quit messing around. His appointment was 7/24/2007 and he was diagnosed with Dialated Cardiomyopathy. But I didn’t feel comfortable with it. Something still seemed off. So we went to Seattle Childrens and he was diagnosed with Left Ventricular Noncompaction (another form of pediatric cardiomyopathy, it actually falls under the Hypertrophic Cardiomyopathy.) So if there is one thing I have learned is it parents listen to your gut!!! You are with them 24 hours a day 7 days a week. It is called practicing medicine for a reason!!! Yes they have the education behind them, but nobody knows your child like you!!!

I was sooo relieved to finally have a diagnosis. So was Jake. Although it was relieving to finally have a diagnosis the more research we did, the more we realized this was not a run of the mill heart problem.

Here is a little info on Cardiomyopathy taken from www.childrenscardiomyopathy.org

Hypertrophic CardioMyopathy affects up to 500,000 people in the U.S. with children under 12 accounting for less than 10% of all cases. According to the Pediatric Cardiomyopathy Registry, HCM occurs at a rate of 5 per million children. The cause of HCM is largely unknown but most cases appear to be genetic in origin.

Unfortunately, there is no current cure or treatment that can return the heart to normal or guarantee long term survival. Although occasionally children with certain types of cardiomyopathy do improve, the vast majority do not show any recovery in heart function.
For the child with left ventricular non-compaction cardiomyopathy (LVCM) that has symptoms of heart failure, medical treatment with diuretics, ACE inhibitors, and possibly beta-blockers may be used to alleviate symptoms and potentially help the heart muscle structure to normalize. If the patient shows signs of significant arrhythmia, antiarrhythmic medications such as amiodarone or sotalol, have been used for prevention of sudden death. In patients felt to be at risk for clot formation, anticoagulants such as aspirin are used. Patients with associated metabolic disorders may be given a mitochondrial metabolic disorder cocktail of Q10, thiamine, ribloflavin, and carnitine. Once LVCM is diagnosed, a neurological evaluation should be considered because of the high risk of associated neuromuscular disorders.

Cardiomyopathy is the leading reason for heart transplantation in children. Roughly 20% of infants and children with symptomatic cardiomyopathy require a transplant within the first year of diagnosis. While a donor heart can cure all the symptoms of heart failure and greatly improve survival, it is considered a major operation with considerable risks. Once a transplant is done, there are other possible issues to deal with such as infection, organ rejection, coronary artery diseases and side effects to the heart medications that treat these risks.

For a physician, the most difficult decision is determining when a patient should be listed for a transplant. Since donor hearts for infants or young children are scarce, there may be a long wait for a donor heart that matches the required weight and blood type of the child. Cardiologists generally do not want to list too early when there is still a possibility that the heart function may improve or stabilize. It is also not advisable to wait until there is severe heart failure and the child's overall health deteriorates. The child may then be too weak to survive a transplant operation or a suitable donor heart may not become available in time.

Extremely sick patients may require placement on an artificial heart-lung machine called ECMO to sustain them until they are able to receive a suitable organ. However, ECMO is only a short-term bridge to transplant option with neurological consequences to consider. For older children over 50 kilograms, a circulatory support device called the "Heart Mate Left Ventricular Assist System" by Thoratec may be used to "buy time" for end stage heart failure patients while they wait for a donor heart. It has been successful in extending a patients life by 3 to 12 months while providing a better quality of life during the waiting process.

They put him on Carvedilol when we found out what he had. We watched his athletic abilities (which weren’t much to begin with) decline before our eyes. It turns out that for some cardiomyoapthy patients that Carvedilol can actually worsen the symptoms instead of help. Of course Brody fell under that realm. We found that out in October of 2009. Luckily we figured that out, and slowly weaned him off of the medication, and we thought he was doing better, but at his doctor appointment last week the doctor explained to us that his Left Ventricle is filling later then last time. He has gone from mild heart failure, to mild/moderate heart failure. So we are going to try a new medication as soon as we see any signs of exercise induced breathlessness. He is also at high risk for sudden cardiac failure, which can be hard for some to understand since he looks healthy. We often get asked the question of well can’t he just get a heart transplant? So many factors go into that decision. The doctor is the only one that can put him on the list, and then the average wait for a heart is 280 days. A heart transplant is last resort, and unfortunately the only true “cure” as of right now.

We are still searching for a genetic cause, as you read most cases are genetically linked. We have tested all of the major ones, and have not found a genetic reason for Brody’s disease thus far. Jake and I are still trying to get him diagnosed as far as developmental delays are concerned, we see them and know they are there.



A little about Brody: He is a happy boy, with a smile that will melt you. He loves horses. He loves to be outside. He loves to help. He wants to learn, and tries very hard. He now says he wants to be a doctor when he grows up. He loves his doctor so much!!

A big help to anyone who is diagnosed with pediatric cardiomyopathy is www.childrenscardiomyopathy.org . Join the forum there!!! It has been so helpful to be able to ask a question to other parents who are going through the same thing. We also started a foundation as a family that we could raise funds to help further pediatric heart research. It is www.hopeforlittlehearts.org . It has been a great source of comfort to be able to feel like we are doing something to help. Probably the most helpful thing for us though is our understanding of the afterlife and knowing that our family is sealed, and we will be together forever (I.e. my favorite hymn Families Can Be Together Forever) is a great source of comfort. (If you want to know more you can check out www.lds.org) Knowing that our Heavenly Fathers plan is perfect, and He knows what is in ours and Brodys future. He knows exactly what Brody needs and when he needs it, gives us a great source of comfort.

Homeschool Resources

100 Excellent Online Resources for Christian Homeschoolers

Make Your Day Monday: Ironman

I know you've heard the Rick & Dick Hoyt story before, but this is a new video that's worth your time (and it will make your day!)....

If We But Believe

If we put our problems in God's hand, There is nothing we need understand. It is enough to just believe That what we need we will receive.
~Helen Steiner Rice

Crazy Ride

Goodnight big moon
Sweet dreams baby
If I could have one wish tonight
It would be
You always keep
Keep the starlight in your eyes
One day you'll grow up
One day you'll walk in
In this big world on your own.
There'll be days when
Your heart'll break and
You'll swear that all your strength is gone.

But then you'll find a way to carry on

Heaven knows that it's a crazy ride
It's never perfect all the time
(It'll pull you down and send you flyin'?)
So baby hold on tight
On this crazy ride

So don't be scared when
You're in the darkness
(The sun is smilin' back at you?)
Your faith is gone
But it's hangin' on
It's just on the other side of town.

Even when it's lost, it can be found

Heaven knows that it's a crazy ride
It's never perfect all the time
(It'll pull you down and send you flyin'?)
So baby hold on tight
On this crazy ride.

Heaven knows that it's a crazy ride
It's never perfect all the time
You know it's just a crazy ride
It's never perfect all the time
(It'll pull you down and send you flyin'?)
So baby hold on tight
On this crazy ride.

Goodnight big moon,
Sweet dreams, baby.

Painting!

Here are some fun painting ideas, all from Heidi at Adaptations4kidz. She has so many fun things on her blog, you've gotta check it out if you haven't already!

Bubble Wrap Painting:

We all love popping bubble wrap but around here we like to paint with it too.
All you need for this art project is some bubble wrap, paints, paper, brushes(or fingers).
With Junior I start with a piece of bubble wrap. He likes to play with it first and we pop some of the bubbles. Then we paint on the bubble wrap using a brush or fingers. Then lay a piece of paper over the bubble wrap and press down. Pull the paper off and see what print you have....


Sensory Painting:

We just call it sensory painting for lack of a better term. All you need is some paper, paints, and a shallow tub....

You also need a bunch of various textured balls(a trip to the dollar store gave us lots of neat ones). Junior's favorite balls are the ones in the very front of the picture that have little spiders all over them....

Put the paper into the tub then put a few dots of paint around the edges and start dropping the balls into the tub. Sometimes we do one type ball at a time and other times Junior likes to put in a bunch at once. Then rock the tub around in all directions and you will get some very cool patterns. For a little extra sensory fun and a huge mess help your child use their hands to roll the balls around in the paint.

Here is one of Junior's sensory paintings, he loves to add stickers once the paint is dry....


Swatting Flies:

This is messy but oh so much fun.
All you need is paper, paints, and a flyswatter. A shallow tub will cut down on the mess but is not necessary....



This art project is best done outside if possible because the paint splatters.
Place several dots of different colored paint all over the paper. Grab the fly swatter, start swatting those paint flies and see what cool patterns you end up with!....

Trapped

Photo: First day of preschool, August 2008

Journaling: September 2008

Your journey into preschool has opened our eyes in such a shocking way. With us, you experience everything possible—there are no limits to what you can do. But out in the world, people see your brain as incapable and slow just because your body doesn’t work. It is this revelation that has forced me into my “mama bear” mode, essentially screaming out with my words and actions to anyone who will listen—he is a normal five year old living inside a body that won’t work! And there’s only one word for it: TRAPPED. My little boy is trapped inside his body, and trapped in a system that only reluctantly makes modifications. But no matter . . . we will carry on like we always have, ignoring the boxes that people try to fit you in. Daddy and I will always bend over backwards to give you all the opportunities imaginable!!!!!

Meet Nathan

by Annissa of My Unique Flowers.
You can also meet her son, Noah, by reading his story here.


Imagine, you have 9 and 3 year old sons, one is just easing back from a roller coaster of medical issues, weekly doctors visits, knowing that any of his major and minor organs could be riddled with his rare genetic disorder, much like his skin. (Noah's skin biopsy reveled that about 30% of his skin cells were effected with the extra chromosome... and it was not in his blood at all, the placenta had been 100% Trisomy 16) ... the fact that his kidney issues continue, makes mommy feel like it's at LEAST in his kidneys. You can only hope for a happy "normal" life, but realize it may not be a reality. You are divorced now, a single mom, you have put yourself out there dating, it's fun and you aren't taking it seriously really. You never did it before you got married, and now you figure no one will want to take on a used woman with 2 kids, one who has medical issues and you'd never marry anyone who didn't understand what they were getting into. Marriage, isn't in the future... Their 10th and 4th birthdays passed us and before I knew it, the divorce was finalized...

But then I met HIM ... and my world changed. We met on the internet, and the boys would see me talking to him on webcam, hear me talking to him on the phone, but my mom was in town, and when she flew back home, she was taking the boys for the summer. I had the chance to date him, without the kids getting involved. He ended up moving back to Wisconsin to be with me and I had to fly out to WA to get the Cal and Noah. So I did... and while I was there, with them, I told them that they were going to come home and have a great new man in their lives. Dennis and Mommy were planning on getting married the following year. No one else really knew, but we had decided to haphazardly try for a baby together too. We figured we'd give it a couple months, and then take a break, because I didn't want to be pregnant for the wedding. We were away from each other for 2 weeks, and when I got home with the boys, we spend a lot of time in each other's arms {wink, wink} ... so September we were going to start trying and I was just waiting for the cycle for August to end. I was temping (charting) already to get into the habit, and getting really frustrated because the start of my cycle wasn't coming. I knew I wasn't pregnant, I had all my ovulation symptoms my last day at my mom's. Finally, Jenna got on my case, and yelled at me to take a test. I had already taken one, it had been negative, but just to shut her up, I took one. As I was walking up the stairs, I glanced down, and OMGosh....... THERE WERE TWO LINES......(Tuesday AM was my neg test, Thrus PM was the first one I got 2 lines on)

And the lines got darker!


I called the DR's office, at that point, I had suffered 12 miscarriages (the 13th came on our 1st Anniversary, a couple weeks before Kaedyn was conceived), and my OB and I determined that I'd need to go on progesterone as soon as I got a positive result. A beta was set up to keep an eye on my hCG numbers, and my prescription was filled for both the prog & prenatals.

Soon it was time for the first ultrasound, the earlier, "let's make sure this pregnancy is viable" ultrasound and we saw his little blob and his flickering heart. Sure enough, there he was. I ended up having another one between then, and the 12 week, because I was cramping and spotting pretty bad, but everything was fine. Then came the 12 week ultrasound and yet again, I was watching my due dates travel south. I was due on Mother's Day, (May 13) and by then I think my ultrasound based the due date, from the size of the baby, already in June. I was scared.........

......... was it happening AGAIN?

Discussions with the OB, at 16 weeks I had the amino done, just to make sure. Two weeks later, we found out we were having another boy, and he looked 100% genetically healthy!

........ YAY, huge victory!!!

We found out just in time for our wedding, because we decided to get married now, legally, for the sake of the baby - we had been planning on it anyway! We still plan on having a big wedding someday, but we decided we needed to focus on our family. I was 18 weeks pregnant for our wedding...

The day after Christmas, we went in for our 20 week ultrasound. And just as we were ready to welcome in the New Year ... we got the phone call that would, yet again, change our lives.

"This is so-and-so from Dr. B's office, we have the ultrasound results and we need to speak with you about it." Oh GREAT. "First of all you have a very large fibroid tumor in your uterus with the baby, but everything should be okay there. The baby has severe Intrauterine Growth Restriction," which we already knew, "He has a two vessel cord," there are three main vessels to an umbilical cord, "and we found a cyst in his brain." WHAT?? A CYST in his BRAIN?? OOOOMGosh what does that mean??? "It seems to be stable right now, we just need to keep an eye on it." She couldn't give me any other information, really. I think she mentioned it was called {Dandy Walker} but I don't recall if she had told me or if I can found out at my next OB appt. Pity was on the phone that day, I could hear it in her voice as she tried to keep ME calm. Please don't freak out with me on the phone, I feel bad enough telling you all this after all you've already been through. She hung up with me as quickly as she possibly could, she didn't want to be responsible for giving me information and dropping the heavy box of worry upon my head. I wonder if the nurses and assistants all drew straws to see who got the short one, to make the call, because it was someone I had never talked to before.

A cyst in his brain........ I was terrified. Something WAS wrong, because he wasn't growing. As soon as I had found out it was called {Dandy Walker} I hit the internet for hope and inspiration, much like I had with Noah. Only this time, I didn't find any. All I found were words like {DEATH} and {HYDROCEPHALUS} and {MAJOR DELAYS}

...... OMGosh, it was happening all over again.......

{IT WAS HAPPENING AGAIN}

When I went back into my OB I broke down with my worries and he assured me that based on what they had seen, the baby's (he was still semi-nameless at that time, we called him Lil D because Dennis wanted to name him after himself, and I was going to let him have his way, although I didn't like it... who wanted to cause their little boy to have the nickname DENNIS THE MENCE hanging over their head....) was stable and they'd keep a good eye on it. I was having ultrasounds every 2 weeks from then on. I had hypertension and was being monitored and watched for Pre-eclampsia, and I was having contractions so I was on moderate bedrest.

It had gotten to the point where they were thinking, based on my blood pressure, I'd have to be delivered soon, it was sky high, but the protein was still stable. But I was ordered the shots for the lungs, just incase. They gave me one at one appointment, where the Perinatologist gave it to me, and then gave me the vile of meds to bring home, and go into to the OB office for the second dose.


But Junior and I hung on there ... and soon enough, about a month before he was born, his name got changed to Nathan Patrick, and that one stuck.


I had been told various things through the pregnancy, we want you delivered by 33 weeks, 35 weeks, 37 weeks... it was fine it got pushed back, it meant that Nathan was doing better then they expected, but at 36 weeks, we knew it was time.

Noah had been running a fever, he'd vomit a little, but the fever was so very bad. He was complaining about a pain in his right side, he was not himself. The fever was getting lower and going back up and dancing around. We took him into the ER. They did no testing. He's afraid of the DRs and he will act as normal as he possibly could, and he was demanding me to read to him because he was scared, and the Physicians Assistant that saw him, said that he just had a virus without even really doing anything. When we mentioned appendicitis, we were told he was to young. What gets me, is he gave them a urine sample, but it was never run.

We went home, Monday he seemed better, but Tuesday, the day I had another ultrasound an appt 2 hours away, possibly looking at being delivered that day, Noah woke up with a 104 fever and vomiting, he was lethargic, and I spent about an hour struggling with a choice. Did I leave him home with my mom and have her try to get him in, or did I take him with me and have him see where we were going, which happened to be the hospital he was born at, 2 hours from home. I kept thinking, if he gets admitted, at least we'll be in the same hospital. Since Nathan had many issues, and was so small, we planned on delivering at the hospital with the NICU where Noah had been born. I didn't want complications to arise and then have our hospital end up transferring him there anyway, and be in a separate hospital from him.

So Dennis and I packed up, packed Noah up, and Mom was going to follow with Calahan later. It was April 17th. I went through my ultrasound and appointment and it was determined that I would deliver on Thursday, April 19th. Then we took Noah to the Ped's department where the Urgent Care kids are sent. So we got him in, and ended up waiting in the office for an hour. By then, his fever was back, and the little bit of energy he showed during my appointments was gone, he cried, he slept, he struggled and he was not his normal self. The DR, when she finally came in, took one look at him... and knew something was wrong. She ordered an IV, labs, x-rays, ultrasounds, and then said to come back down and she would probably end up admitting him. When I mentioned appendicitis to her, and what the DR at home had said, she was appalled and said he wasn't "to young" ... and promised me she'd figure out what was wrong. We ended up finding out that Noah's kidney's were failing and they were running all sorts of cultures on him. He ended up, we found out after he was admitted, that he had C-Diff, which is a bad bacteria we all have in our bellies, but when we are on normal antibiotics, it doesn't kill the C-diff because it's to strong, normally, it stays dormant, but sometimes, when you are on meds (and Noah had been for an ear infection) .. it runs rampaged, and in Noah's case, it almost killed him.


Pity walked into the room, again, with pretty much every nurse and confused DRs. Knowing his history, seeing me 9 months pregnant... it was hard not to look at us like that, especially when I was shoving my 9 month pregnant behind on a sleeping bench under Noah's window and wouldn't leave. I didn't leave until I had to go down to L&D at 8am on Thursday morning to give birth to Noah's little brother. That was one of the hardest days of my life, leaving one baby in the hospital, going down the hall, down a floor, to have another...

Pity was there then too. Only by now, I had let all my anxiety I had been fighting off take over. I was breaking out in tears, I was a mess. Emotional because I knew that Noah was wanting me, and I needed to be there for him, but I couldn't.... he was in good hands, my Mom and his big brother Cal, but I wanted to be there. But obviously, I had to get Nathan out. It was time for him to be born and I was scared. Scared about everything.

Things weren't so much a whirl-wind this time as they had been with Noah's emergency c-section, it was a little more calm. Word had spread that my other son was up in PEDs but everyone tried to focus on now. There were questions though. "Why is he there" "What's going on?" ... I was shaved, shoved with a catheter and wheeled back into the OR. It took them 20 minutes to place my spinal this time. I was shaking to death and really upset by the time they did, but I was so glad when they finally did ... I had a massive bruise on my back, though, from all the attempts.

That's when pity entered the room... and brought along some luggage. She planned to stay for awhile.

Things went okay, Dennis finally came in and thought I had to be knocked out. He hadn't been in the delivery room for his Daughter's birth because his ex-girlfriend had to be put completely under. So this would be the first birth of one of his children, that he'd witness. And he was all eyes. I told Dennis, I didn't care about me, I wanted him to stay with the baby. Where ever the baby went, he went. And to take pictures. Don't let the baby be alone. So he did.

Nathan Patrick was born at 11:07am on April 19th, he was 3lbs 4oz and 15 3/4 inches. He came out SCREAMING ..... and I cried. I cried with joy to hear his little voice, to hear his lungs working ... to have what I wasn't given with Noah. They brought him by me, for a quick look-see and a picture... and then Dennis went with him to that room, behind the door, which was left open this time, where they had taken Noah. Nathan's experience was the same one I had needed with Noah, but never got.


Then Pity started doing her dance. For 36 1/2 weeks, he was extremely tiny. Pity pity ...

I was taken back to my room, various DRs would come in, tell me this was wrong, or that was wrong... I heard things like "cleft palate" and "heart issues" and various other things. Genetics was called, surely SOMETHING had to be wrong genetically, with all his issues.


What are the odds of one person having two such dramatically different children with such widely spread health issues... with two different Dad's, no less...

He was in the NICU, funny enough, in the same pod, in the same bed spot, that Noah had been. (Noah btw, had been released that day from the hospital, feeling better but not 100%, and he got to visit his baby in the NICU after he was born) All the nurses knew me, remembering me from when Noah was in there. I had kept in touch with a few of them. I was told, I knew what to do, and they pretty much let me run Nathan's show as much as I could. I'd reach in there, check his diaper, fix his leads, what whatever I could, that I knew, needed to be done. I knew when to leave him alone, and I knew when I could reach in there and hold his hand. Dennis, though, was another story. This was his first NICU baby, and although he accepted Noah for all he was, he hadn't been there. It scared him, just like it does every parent walking into it for the first time. I taught him a lot of what to do. How to change his diaper in the incubator. How to kangaroo, how to tube feed him, how to burp a tiny tiny baby. He was a pro, though. He was showed it once, and that was all he needed.




Nathan was in the NICU for a couple weeks, he ended up coming home the Wednesday before his Mother's Day due date.


Pity stuck around, hiding. I'd catch looks form some of the nurses, every time a new diagnosis came down the line. I would catch it from some family members... Especially when they saw him with the NG Tube (which he came home with because he was having a hard time nipple feeding, because of his cleft palate)


His tiny hands, and tiny feet amazed me ...

But he did slowly grow........ he averaged about an ounce a week in weight gain. That's it... just an ounce. Sometimes less, sometimes more...



Pity especially came out, after we brought Nathan home and in public. After he got a little older and the questions would come. "Oh how old is he?" and I'd tell them... "Really? He doesn't look that old!" Well he is. My favorite reaction I would get when telling people Noah's age before Nathan was born, and Nathan's age was ... "SERIOUSLY?" ... you could hear their heads scream "What is WRONG with him/them?" but be to polite to ask. I would feel the need to explain that Noah was a 1lb 12oz preemie and Nathan was 3lbs 4oz when he was born, and that Noah has a rare genetic disorder, and Nathan has a cyst in his brain. Then I get the "can it be fixed?" um, no, he has to live with it like that forever. It could get bigger, it could cause problems, but right now it's stable and we are thankful. Pity is in all of their eyes when they look at Nathan, but Nathan will usually turn around the situation and do something goofy, because that's who he is, and make them laugh.




Once Kaedyn was born, and started to get to be around the same size - which didn't take long - I would be asked "Are they twins?" Especially when out in our Cadillac of a stroller...

And I'd have to say "no, they aren't... there is 16 months between them." To which I would often get the rubber necking between looking at them, and they would guess who was older. Usually picking Nathan, because he had more teeth. Then they want to know what's wrong with Nathan. Pity comes back, and Nathan now ignores them. Kaedyn is a ham bone and soaks up the attention, and sometimes, when Noah is with us, he doesn't understand why HE doesn't get attention like HE use to. Nathan has gotten to be very stand offish to people... they are okay, as long as they are at a distance. Please don't get to close.. he doesn't like that much.


Nathan is in 12 month clothes for length (sometimes 18 months but the width swims on him, he COULD fit in a 9 month outfit if it weren't for how tall he was) ... He's in size 4 diapers, but I can still touch the tabs together. Kaedyn is in 18 month to 24 month/2T clothes. He's in a size 6 diaper and we're going to have to start potty training him soon because there is no where else to go after that... Nathan's feet are in size 5 because they are LONG and Kaedyn's because he has Hobbit feet...

Now that Kaedyn is BIGGER then Nathan, it's hard. Nathan, you can tell, is noticing. He'll be 3 years old in a few months, and he's only 18lbs, and 31 inches, Kaedyn is about 26 lbs. He still hasn't been officially diagnosised with Russell-Silver Syndrome .. but it fits him so well. It's a type of Primordial Dwarfism. We have watched Kenadie's story on TLC. She reminds us so much of Nathan, only Nathan is a little bigger.

Pity is going to follow us for a long time, Noah's issues are easy to hide, but Nathan's aren't. It's hard, because it seems like each year, the list of Nathan's issues grow with each year. And grow...... and grow. and grow... but we'll take whatever steps we need to in order to help Nathan have a strong will, a happy life, and as healthy as can be!

Try This Tuesday: Weighted Blanket

A few years ago I made Junior a couple weighted blankets and they quickly became something we use daily. Sometimes for positioning and safety(to keep him from sliding or rolling), other times for spasticity. When he is dealing with seizure activity or spasticity it really helps to wrap his weighted blanket around him. In fact it usually calms him right down within seconds.
Here is a picture of Junior snuggled up in his weighted blanket, this one is made with fleece material and weighs 6 lbs.



To make this weighted blanket I used 2 yards of fleece and 6 lbs of polly pellets. I have heard of people using dry beans or rice but I prefer the polly pellets because the blanket can then be washed.

Fold the 2 yards of fleece(or other material) in half so you have two layers. Put a seam on 3 sides and leave the top open. Then put a seam about every 4 inches so you have "tunnels" in your blanket. I then measured the length so I would know how many squares I would have(once you add the pellets you will be seaming across so you will have 4X4 in squares). Figure out how much of the polly pellets will need to be added to each square(you want the same amount in each square). I used a little scale to do this but I doubt you really need to be that exact. Pour the amount for one square into each tunnel, shake it down to the end, then sew a seam across. Be careful this can be very hard on that sewing machine needle if it hits a polly pellet. Repeat until you get to the top of the blanket and then put a seam across the top.

Here is Junior's "summer" weighted blanket. It is just made out of lightweight cotton material.



Find more ideas to try on my blog Adaptations 4 Kidz.