Winter Wonderland

It was like 20 degrees outside to day, The husband got home from work early and the girl were home all day with me & Cameron. School started out 2 hours late but 7:30 school was cancelled. It must have been icky & blowing out in the country beccause it wasn't bad here in town.
 So until this afternoon I tried ny hardest to keep all three kids occupied, they actually did pretty good, the girls watched Sesame Street & Chuggington with Cameron this morning. Desiree & Megan ate their favorite breakfast (coco Puffs & Orange Juice) From two rooms away I could hear Megan Shout "I'M Cookoo for my Coco Puffs) She is my goofball that's for sure!
The deal was with Desiree & Megan that if they behaved & listened to me, that went their dad got home from work they could go outside with him when he went out to clean off the sidewalks.
 So I'm cleaning up the kitchen and feeding Cameron his Spagetti & smashed banana, I hear the girl's snowmobile outside.. Yup  it was the perfect day to be out enjoying the beatiful light snow coming down and the not so bad temp.
 I figured it was a perfect oppertunity to take lil man outside, I finished feeding him, changed his diaper and put on his snowpants, jacket, mittens and hat and his new winter boots.
He was so excited to be outside with the big kids... Right away Daddy grabbed him and took him on the snowmobile for a few laps around the backyard. Cameron had a blast!
Desiree & Megan even took him down their sliding hill that's in our backyard.
 Of course I captured a few moments when all three kiddos got along long enough for a few sweet pictures.

City of Le Sueur Mn CHD Proclamation

City of Le Sueur MN Graciously accepted my request to sign a CHD Awareness Week Proclamation.
  The mayor of the City sent me the proclamation, and a special note for Cameron.

He also let me know that The signed proclamation will be in the Le Sueur newspaper.

Challange & Accomplishments of Cameron Eating

It has always been a challange to get Cameron to accept different textured foods, We were told early on that Eating will be a struggle and to take things slow with Cameron and to follow his lead.
 We always made sure that Cameron got enough calories thru his bottle, but when it came to baby food, well take it nice & slow...don't push the subject. Introduce Cameron to stage One foods, and see how it goes. He didn't like them...he just wasn't interested. So we just kept going with his fortified bottles. Eventually it just wasn't enough, so we tried stage Two foods, he tolorated them better as long as we whipped them up in a bowl and made sure they were at a silky smooth consistency. Once we did that for him he chowed them down like there was no tomorrow!
Some days of course were better then others, somedays he would gag on the littlest thing, which would end up a big mess, he would gag so bad that he would throw up.

Do you give up after a gag/throw up session? we didn't, we would clean Cameron up and and calm him down and start all over. You can push the subject, but you can't give up either!
My dad would always say, "if you fall off your bike, are you just gonna walk away and never ride it again?"  Maybe the best advice my dad ever gave me growing up.
                  You can't give up..you just gotta TRY TRY TRY Again!
So we went grocery shopping one friday night, they didn't have any high calorie stage Two foods, I paniced, what should I do I asked my husband. He says "I don't know, But we gotta find some high calorie stage two foods". Well we didn't so I just grabbed some beach nut stage Three foods.. I figured I could just whip them really well and try that.
Cameron LOVED the stage Three foods, different flavors, different textures, and still high calories. It was a win win situation!
Over the next couple weeks I would whip up his food, making it smooth. He did great, so then I thought well lets try not mixing the food to make it smooth. At first Cameron wasn't to sure about it. Now he absolutely LOVES it. His favorite breakfast is Rolled Oatmeal & pairs, Favorite fruit is mixed fruit and his favorite lunch/supper is Chicken, Veggies mixed with tiny stars. He cant't get enough of it.
on a normal day Cameron will have about 1,000-1,400 calories (that is six 7 ounce bottles & 7 jars of food) and somedays he wants more.

Recently we decided to mash up who;e bananas and try feeding them to Cameron, we are so thrilled to see how well he has taken to "real" food.
 I can't feed it to him fast enough..he sits in his highchair with his mouth wide open. I love that Cameron is really taken to adult kind of food, bananas, white cheddar mashed potatoes, cottage cheese & Orange Cream yogurt.
We are finally moving forward with Cameron on food, we just keep trying and not being to pushy..he lets us know when he is ready!.

Cameron's mashed up Bananas & chicken with Stars jarred food

No Cameron your firetruck cannot drive thru your bananas

Look mom--I'm trying to be a big boy!

Messy face ;-)

attempting to eat his banana

um, What am I suppose to do with this?



Cameron ate his chicken & stars-- this is his smashed bananas



Retelling our Story

In October of 2009, I gave birth to Cameron Chase, he was born with a severe congenital heart defect. Cameron was missing part of his precious heart. My son was born with Hypoplastic Left Heart Syndrome.
Cameron Chase is now 16 months old, he was a handsome little baby, A head full of Dark hair (which at the time we thought it was gonna stay dark and be curly). I couldn't believe that after almost 6 long years of wiating and praying I finally got to be mommy to this special little baby. God had answered our prayers.. so we also knew that if we prayed hard to him again that just maybe he would answer our prayers again and help Cameron overcome the challanges of having hlhs.
  
I guess before I get to far ahead of myself, I should say that we found out about Cameron's special heart at my 21 week level II ultrasound. We are one of the lucky ones who knew ahead of time, but believe me it didn't make knowing easier... It gave me 18 weeks to think non stop about my son and his broken heart, to cry myself asleep as I thought about Cameron's chances of surviving such a severe CHD, to watch HLHS youtube videos and cry my eyes out because I was overwhelmed and terrified of the unknown future! It gave me more time to figure out the "best" way possible to tell my then 10 & 6 year old daughters about their sick baby brother.
     It was never easier knowing, however it gave us time to get some details & plans in order.
We had pretty much all the details & plans done by the time I had Cameron.
Girls would live at their Aunt Tammy's and spend the weekends at the hospital with us & Cameron. Virgil would be off work until things would look "up" and then when he would go back to work I would have his sister Shelly keep me company at the hospital and keep me calm.
 We would weather thru this massive storm, we would TRY to stay strong even though we knew it wasn't gonna be easy.
So October 15th Cameron had his first open heart surgery, he qualified for the hybrid instead of having the traditional norwood. He sailed through that surgery with no major complications, In no time Cameron would be moved from the picu to the stepdown unit, that's where we we had our stuggles. Eating, Cameron wasn't to sure about the suck swallow breathe pattern,
It took Him three weeks to get the pattern down, but when he got it, boy you better have been ready with a bottle!
I will never forget the day when they told us Cameron was ready to go home, I broke down in tears. tears of happiness, tears of being overwhelmed again and tears of relief. Finally at five weeks old, my little bundle of joy would be coming home to me, to Virgil and to his two big sisters Desiree & Megan, and to all the people who cared about him! it was a dream come true!
 For the Novemeber of 09 to April of 10 We went to weekly cardiology appointments in Burnsville one week and the next we would travel an hour or so to the U of MN Amplatz. Cameron would have weight, o2, blood pressure and length checks, followed by his echo and  a visit from Dr Dan Gruinstein.
from November of 09 till April of 2010 Cameron has had 6 heart caths, one of those didn't go well and a couple of those he coded on us as I was holding his little hand or talking to him tell him how much we were proud of him & how much we love him. Thankfully they brought him back to us each time,.
Cameron has had a blood clot & aneursym in the same groin, he has had to be on heprin treatments for that, thankfully the aneursym shrunk down after having numerous clotting treatments, he still has the blood  clot in his groin, but we deal with it. We do a daily baby asprin treatment.
  April of 2010 Cameron returned to the U of MN Amplatz for his bi-directional glenn surgery.
That was scary, the day of his surgery we get called back to a room to talk to Dr Saint Louis, when they went to crack open Cameron's chest they tore Cameron's heart, not their fault at all, Seems Cameron's heart grew attached to his sternum bone so when they went to open him up, his heart tore.
So they stitched up his torn heart and closed up his chest, and took him back to his room to recover.
The next day they went ahead with his surgery, he did good during the surgery, but after was a little touchy, When they went to move him into his hospital crib they bumped the line they had in his neck which pierced something which cause some bleeding, so Dr Saint Louis had toopen him up again wash out his chest, fix what was punctured and then he was ok. Of couse the night Dr Dan stopped in to check on him he coded right in front of him. So Dr Dan did compressions and after that it was smooth sailing. We spent a total of seven long days in the hospital.
 We had some awesome visitors from family & from Other heart families and some friends dropped off special gifts for Cameron. It took my breath away to see how many people really care about Cameron and love him!

Well now Cameronis about to celebrate his 16 month birthday, WOW, where has the time gone?
 Cameron is thriving and progressing nicely.
Last echo appointment he was about 20 lbs, he's finally getting longer, his o2 was around 86% and his blood pressure was ok, not hte best it's been but not the worst either.
 We talked to Dr Dan after his echo, he now has narrowing in his aortic arch which is why he is having problems with his tricuspid valve leaking (which will be getting replaced sooner then later we were told)
So Cameron has another echo appointment in April, that willbe the echo appointment when we find out when Cameron will be going into the cath lab, to get his aortic arch ballooned open.
 We take Cameron to a GI doctor for his constipation issues, he has been struggling with this since he turned one in October. Right now Cameron's GI Doctor has us giving him one full cap of Miralax in his first bottle of the day, everyday. Somedays it works and other days not so much.
We will be going in to the clinic for somemore tests to see what is causing this painful and daily constipation issue.

Starting Feb 1st Cameron & I will be going to our very first Toddler togetherness class. I hope that Cameron will love interacting with the other kids, right now the only kids he sees are his two older sisters and some of his way older cousins. I think this will be a great experience for him as it will be for me too.
I  usually don't do much without the husband or without my mom..I just feel so lost & overwhelmed right away, and I count down the minutes that we can go home. so i'm praying I do okay on my own.

A Mother's poem

I am the little engine that did. When on my journey in life, my tracks led me to a mountain - a diagnosis for my newborn son of (Hypoplastic Left Heart Syndrome ...) - I looked at it with defeat - thinking there was no way I could climb over it. I then pondered the obstacle before me, and I then said to myself over and over, "I think I can, I think I can...," then I slowly started climbing the mountain
saying to myself over and over, "I know I can, I know I can,...." and then I made it over that ominous diagnosis and continued my journey. I am the little engine that did.

I am more devoted than Noah's wife. I sometimes feel overwhelmed in my "houseboat" -- 365 days and 365 nights a year, constantly working with and teaching my child. But when the storms of isolation and monotony become most
unbearable, I do not jump ship. Instead I wait for the rainbow that is promised to come.

I am Xena. Real life warrior goddess of congenital heart defects . With my steel plated armor I can battle anyone who gets in the way of progress for my child. I can overcome the stares and ignorance of those without a disability in their
lives - and educate them as to why my child is the way he is, and why he does the things he does. With my sword of persistence, I can battle the schools to have them properly educate my child. Yes, I am Xena - and I am prepared for any battle that might come my way......

I am beautiful. I have hairy legs because I get no time alone in the bathroom, and bags under my eyes from staying up all night with my child.
The only exercise I get is the sprint from my house to my car - to take my child to therapy. Dressed up to me is, well - just that I had a moment to get dressed! They say that beauty is in the eye of the beholder - and so even on the days when I don't feel very beautiful - I will know that I am........ because God is my beholder.

I am the Bionic Woman. With my bionic vision - I can see through the disability my child has, and see the beauty in his soul, the intelligence in his eyes --- when others can't. I have bionic hearing - I can look at my child when he smiles at me, and hear his voice say, "I Love You Mommy," ---
even though he can't talk. Yes, I am thankful to be Bionic.

I am Mary. A not so well known mother of a Special Needs child who was brought here to touch the souls of those around him, in a way that will forever change them. And it started with me. By teaching me things I would
never have known, by bringing me friendships I never would have had, and by opening my eyes as to what really matters in life. Things like the Joy of just living in the moment, the Peace of knowing that God is in control,
never losing Hope, and knowing an unconditional Love that words cannot express. Yes, I too am blessed by a special child, just like Mary.

I am Superwoman. I am able to leap over tall loads of laundry in a single bound, and run faster than a speeding bullet, to rescue my child from danger. Oh yes, without a doubt, I am Superwoman.

I am Moses. I was chosen to be the mother of a Special Needs Child. I may at times question whether I am the right "man" for the job ---but God will give me the Faith I need to lead my child to be the best he can be. And like Moses, God will give me the small Miracles here and there, needed to
accomplish my mission.

I am Stretch Armstrong - a mom that can be stretched beyond belief and still somehow return to normal. I can stretch limited funds to cover every treatment and therapy that insurance won't. I can stretch my patience as I
bounce from doctor to doctor in a quest to treat my child. I can stretch what time I have, and share it with my husband, my children, my church, and still have some leftover to help my friends. Yes, my name is Stretch. And I have the stretch-marks to prove it!

I am Rosa Parks. I refuse to move or waiver in what I believe is right for my child --simply because my view is the minority, not the majority. I refuse to believe "What can one mother do?" But instead, I will write, call, and rally to the government if I have to, and do whatever it takes to
prevent discrimination against my child and ensure that he gets the services he needs.

I am Hercules. The Greek god known for strength and courage. The heavy loads I must carry would make others crumble to the ground. The weight of Sorrow,
Fear at uncertainty of the future, Injustice at having no answers, and the Tears of despair, would alone possibly be too much, --- even for Hercules.
But then the Joy, Laughter, Smiles, and Pride, - at my child's
accomplishments, - balance the load to make it easy to bear.

I am touched by an Angel. An Angel who lives in a world of his own. And it's true. He lives in a world of innocence and purity. A world without hatred or deceit. A world where everyone is beautiful and where no-one is ugly. A
world where there is always enough time. A world where he goes to bed with no worries of tomorrow and wakes up with no regrets of the past. Yes, I most certainly am touched by an Angel, and in some ways, his world is better....

I am a true "Survivor" - the mom of a child, who has faced, is facing, and will face, --some of the most difficult challenges life has to offer. I am ready for the challenge and have God given endurance to last until the end, -- along with a sense of humor to cope with all the twists, turns, and
surprises along the way. Oh yes, I am a TRUE "Survivor" - and I don't need to win a million dollars to prove it!!!

I am a mom of a special needs child, all the above, and so much more.
Someday's I will want to be none of the above - and just be a typical mom with a typical child, doing typical things. On those days I will know it's okay to be angry, and to cry, and to lean on my family, friends, for support. Because after all, ---the most important thing I am, ..... is human.


~ author unknown ~

Chd Awareness Week 2011

Congenital Heart Defect Awareness week is just around the corner, Feb 7th-14th 2011.
 We recieved our CHD Awareness brochures and stickers, 300 of them to be exact. Desiree plans on taking them to school with her and the LSH staff agreed that it would be great to help get the word out about congenital heart defect awareness out there!
We are also gonna be leaving some brochures at the local Henderson clinic, so that whoever sees them at the clinic can grab one and read all about it!

Also Desiree is working on a project which she is in charge of for her service learning class  at school, She decided that her class should do a blanket drive for the kids who are stuck in the hospital, The blankets will be delivered to the kids at the University Of Minnesota Amplatz, in Minneapolis Mn.

They have also decided to take request for blankets from heart families that we/i've gotten to know thru facebook.
So currently Desiree & her class are working on the cozy tie blankets for the kids at the U of MN Amplatz and for our special friend Charity, who is due in March with a hlhs baby boy.
And Desiree just doesn't stop there, she is working with her sister Megan and making care packages for the heart families who are or will be in the hospital with their heart child or baby.
I am VERY proud of Desiree & Megan for taking charge on making blankies for the heart kiddos and care packages for the families.


If you would kike to donate fleece blanket material for Desiree & her service learning Class in school,
 feel free to message me on facebook or you can send to
heart blankets
c/o Desiree M Rannow\
P O Box 352
Henderson Mn, 56044
      ♥♥♥♥♥♥  ♥♥♥♥♥♥  ♥♥♥♥♥♥  ♥♥♥♥♥♥  ♥♥♥♥♥♥  ♥♥♥♥♥♥   
Also I just recieved some great news thru email, The city of Belle Plaine & Le Sueur Minnesota's mayors emailed me back, they both responded back to the letters I sent them about signing proclamations for the CHD Awareness week, They both responded by saying they would be honored to do this for our family and for the other families who have chd kids and for those who have lost kids to congenital heart defects.
We will be going to the city meetings the first part of Feb for the signings and they have asked us to say a few words in regards to the proclamation and to to introduce Cameron to them.
. They also let us know that the local town newspaper will be there to take pictures and to do an article about CHD AWARENESS WEEK 2011.