March 28, 2012 =BUSY DAY!

Busy day, but started out awesome with having lunch with Elicia Madetzke Kortus and her niece, JJ.

Thomas' back appointment was first and they said...SEE YOU IN 2 YEARS...can you believe that?!?! HOW AWESOME!!! His surgery from 7 years ago is holding up amazingly!

Jonathan's update...appt went long since they did an esophagram & swallow...all looked good. We meet with GI in July to set up scope. They will do a biopsy at this time as well, as they want to figure out why he isn't having acid reflux...I SAY LET SLEEPING DOGS LIE :) lol They said it could be silent reflux, so we are going to just have peace of mind. Also, he is high risk for cancer, so we just have to monitor that.
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I don't know...the boys are beyond text book material when it comes to their hearts...Thomas is kicking his back's butt (he's not paralyzed and he plays baseball and basketball), so I think J isn't text book material for his esophagus either. WOOT WOOT!

Samuel was excited to see us when we picked him up from school. We decided to go to mall and let him pick out supper (Arby's it was) and get a book at Barnes and Noble. We hate having him miss out in anything. I'm sure he's fine with having to miss the doctors, but still...WE ARE A TEAM!!!

Remember, heart walk in Mankato on May 5 (http://events.r20.constantcontact.com/register/event?oeidk=a07e5lomj6h40762cda&llr=zyzzw7eab) and heart walk in sioux city on June 2 (www.siouxlandheartwalk.org)...JOIN US!!!

CHD Awareness February 7-14 EACH AND EVERY YEAR!

Why do I talk about Congenital Heart Defect Awareness so much? BECAUSE I HAVE SEEN HOW MUCH MY LITTLE MEN HAVE FOUGHT TO SURVIVE!

At just 21 years old, I was a young mother, and I had to watch my 8 month old, Thomas, go through drug withdrawls after having open heart surgery, because of all the medications he was on. I have left behind my baby Samuel for 2 months, before he was even a year old, to sit by Jonathan's bedside in the hospital for 2 months fighting to survive an...d being told he's a 9.5 out of 10 on rarity, complexity to to PREPARE!!! I sat by Jonathan's bedside, with his chest open and a piece of plastic over top of his chest, while I watched his heart beat, because it was far too swollen to close his chest. I have had my children in PICU's over the common cold. I have put my healthy heart child, Samuel, through echocardiograms, EKG's, pulse ox's, etc, as I was so scared I missed something or the doctor's missed something, as he was my ONLY healthy heart child.

THIS MAMA HAS SEEN FAR TOO MUCH IN HER SHORT 30 YEARS, yet 99% of it has been seen in the last 9 years. THIS IS WHY I FIGHT FOR ALL CHILDREN, NOT ONLY MY CHILDREN, TO RAISE AWARENESS FOR CHD (CONGENITAL HEART DEFECTS) AS I HAVE SEEN THE GOOD, THE BAD AND THE UGLY OF THIS AND I WOULD GIVE ANYTHING FOR NO ONE ELSE TO HAVE TO SUFFER. Sadly, I have the good stories, the hopeful stories, too many of my friends are grieving because of this disease. IT'S NOT FAIR FOR A PARENT TO HAVE TO SAY GOOD-BYE TO THEIR CHILD. I have to be aware my children look healthy now, but will NEVER be cured; I have to know the risks, however, I will NEVER be prepared!

Awareness=Research=SAVED LIVES

 

PRAISE REPORT

I CANNOT BELIEVE IT'S BEEN SO LONG SINCE I BLOGGED...IT MEANS THINGS HAVE BEEN REALLY GOOD!!!

HAD TO SHARE MY HUGE PRAISE REPORT FROM MY BOYS' CARDIOLOGY APPT TODAY...I'VE BEEN ON A HIGH OF ADRENALINE ALL DAY BECAUSE OF IT <3




Well, cardiology appointment went...AMAZING!!!! The new cardiologist is so great and kind and so full of wisdom. One thing he said was when he read their records, he was not expecting them to look and act so great and that their hearts are ...AMAZING. He said we are very blessed, as we had amazing surgeons.



He stated 9 years ago when Thomas (TOF) had his surgery, they did a surgery on him that MANY SURGEONS were not doing (CANNOT REMEMBER THE NAME OF IT, AS I HAD NEVER HEARD OF IT BEFORE)...the surgery they performed on him is something that just started happening recently and that is why he is doing so amazing today. All the narrowing and leakage is MILD...love that word MILD.



Jonathan (TGA/DORV/PA) he is blown away with. He said he was expecting his right ventricle to be enlarged, for there to be leaking around his caortic, and that the conduit from 2 years ago would not be functioning this well...ALL POSITIVE SIGNS THINGS ARE GOING SPLENDID.



He stated for how sick the boys were...we are beyond blessed and it's a miracle how well they are doing today and he says that is because we had amazing surgeons for our men. I told him we were told that Jonathan was a 9.5 out of 10 on complexity and rarity of his heart and we were to be prepared...he said they were wrong...he was a 9.9. WOW!!! The Lord has had his arms wrapped around my little family so much.



Last thing he said...LET THEM LOOSE...he wants to boys running, jumping, playing sports and having fun. This is one thing we try so hard to make sure we allow and we will continue to do so.



I AM ON AN ADRENALINE HIGH OF EMOTIONS AND I'M BEYOND HAPPY RIGHT NOW!!!



LASTLY...THANK YOU EVERYONE...BECAUSE OF YOUR LOVE AND FRIENDSHIP AND EVERYTHING IS WHY WE AS A FAMILY WERE ABLE TO GET THROUGH EVERYTHING WITH OUR BOYS...AND I TRUELY BELIEVE PRAYER HAS HELPED HEAL THEM AND KEEP THEM SAFE :)

May 21, 2011

IT WAS BABY J'S 3RD BIRTHDAY. Yes, it's taking me a bit to write about it, but we are a busy busy family. Jonathan, as always, wanted his first present and then through a fit the rest of time, not wanting to open the rest, until he realized there were toys and goodies to open :) We got him a lovely Buzz Lightyear cake too. He, and his brothers, will have a big birthday bash on July 9. Mommy's planning something special...at least I hope it all turns out. Can you say, cupcakes that look like cheeseburgers? LOL...yes, trying to be crafty.

Well, the day of Jonathan's birthday, we went to Mankato, Minnesota and joined Lasting Imprints in doing a heart walk. IT WAS AMAZING! We met so many wonderful heart families. We shed some tears with some angel families, and smiled and all the warriors running around crazy and giving their parents a run for their money :) Thomas was one of the older CHD Warriors there, another lady born in 1989 (I think I got that correct), was the only one older than him. Poor Baby J got a tad ill during the middle of it, but he still perked up once he got cake at the pool :) Before the Community Has Heart Heart Walk, Drew donated blood at the Red Cross blood drive and was in and out like a champ. I, Naomi, did the same, after the walk, and I thought I was a champ, until the bitter end when I almost passed out. Yeah, I'm a wimp, I guess. Regardless, they perked me up within a few minutes and I was on my way to getting mocked by my husband, who thinks he's SOOOOO funny...LOL. Regardless, we both did it. We gave back just a small portion for all the many people who have donated through the years and have saved our boys. We counted how many blood transfussions that Thomas and Jonathan have had, and it's close to 12-15 blood transfusions. IT'S ABOUT TIME WE GAVE BACK. Drew's done it before, but this was my first time.

(Photo by I.D. Photography)

Well, I must say it was a blessed day. All morning long, before the Heart Walk began, it rained and poured. Grandma Pauly, Daddy, Mommy and the boys stayed in the car a bit to keep the boys dry and warm. As we got ready for the walk, and had the umbrellas just right, and were ready to start, the clouds parted and sunlight came out and the rain was gone. I swear there were some wonderful angels watching over us. IT WAS AMAZING. The kids did ran a Dash, called Dashing for David in memory of a CHD Angel who was born on May 21, 2010. Jonathan and David will have a special connection with their birthdays. We were blessed to meet his family, and what an amazing family they are. There were so many together for support for one another.
Well, for now, I'll finish by saying, WE HAVE A 4TH GRADER...Thomas passed 3rd grade with all A's and B's. We also have a preschooler. I cannot believe Samuel will be going to school with Thomas Tuesday through Wednesday next year...eek. Dr. Brenner, the boys' pediatrician, thinks Jonathan would be ready for preschool too, but MOMMY IS NOT! LOL Thank you all for always being there for us. Thank you mom, Grandma Pauly, for joining us at our heart walk, and my sister, Aunty Amy, for meeting us in Mankato. Thank you EVERYONE for always being there with a hello, a gentle smile and a consoling hug through the years. We will continue to say Thank you for all the years to come. We are here and blessed because so many helped us to care for our children and make sure they continued to fight all the years...AND THEY STILL DO! God Bless you all!

Boys with their Beads of Courage...Counts every surgery, blood draw, echocardiogram, blood transfusion, clinic visit...EVERYTHING. Samuel got some beads for being the best brother ever also and always being such a good boy and very supportive as well.

Boys and daddy by their poster that they made for the Heart walk.

Proof that I gave blood

AND I CAN'T BELIEVE THE BEST PART OF THE LAST COUPLE OF WEEKS. I'M AN AUNTY AGAIN...TWICE.

DESTYN SEAN

ABIGAIL MARIE


I THINK MY BROTHER AND KAYLA **AND** MY SISTER AND LUKE DID A PRETTY GOOD JOB. CONGRATULATIONS!


WARRIOR BROTHERS

Thomas' Orthopedic Appointment

Well, Thomas and Mommy went to Sanford Orthopedic and Spine Center in Sioux Falls, South Dakota today, because we had Thomas' orthopedic appointment today & got the results that we were waiting for. NO CHANGE! This is good news. His scoliosis is basically gone! Woot Woot!. His Kyphosis is still a 45 degree curve, but Dr. Haft said that's okay, because it's been that way for 5+ years, since his back surgery, where they fused 3 vertebrate together for his congenital scoliosis/hemi-vertebrate. No paralysis in the future is indicated & a normal life is expected. The doctor wants him to keep kicking butt in basketball & baseball ♥ Love our little man! ♥

March 18, 2011 Updates

Well, we are finally home. The Anderson Boys, and daddy and mommy, took a trip to Sanford Children's in Sioux Falls, South Dakota today for Thomas and Jonathan's cardiology appointments, and Jonathan's general pediatric surgery appointment.

First, Thomas, HE'S DOING AMAZING! He is now 52 lb and healthy as can be. His echo/ekg all look the same, which NO change is GOOD change in the cardiology world of a repaired heart. He still has some leakage, but it's not gotten any worse, ...and it's still very minor. I still remember the day, 5 years ago, we went to our Alpha Church group in Vegas asking for prayers for Thomas. There was worry that within a year he'd need another surgery because of the leakage. Our dear friend, who now lives with Jesus, Maurice, came to us, prayed with us, and after that, Drew and I put our hands on Thomas while he was sleeping and prayed for a miracle, yet again, after all the miracles the Lord had shown us...and well, guess what...it's been 5 years later since that scare and now the doctors say there is HOPE of no more surgeries for Thomas.
Today, and for the next 24 hours, he'll be wearing a halter monitor, which we'll send back to Sanford, but he's doing great. This is just to check for any hidden arythmia's and such.

Now, Jonathan...as we have always known, his heart complexity and rarity have always made things a little more sketchy and worrisome. Today, all we got was Praise Report after Praise Report. He is doing the same as Thomas, AMAZING! Everything that has been repaired is still holding up. The arch is still open, his conduit (artificial valve) is still wide, and some great HOPEFUL news, if that conduit does need to be replaced, due to calcium buildup, rejection, or other things that could happen, Jonathan is a candidate for a cath procedure of putting in a stent...if we can hold this off long enough, possibly adulthood (HOW GREAT IS THAT), then, he has a chance of no more open heart surgeries...and who knows what technology will do in the next coming years...WE HAVE HOPE!!! THAT'S ALL WE CARE FOR.

Second, with Jonathan, he met with his pediatric surgeon who fixed his undescended testy about 1 1/2 year ago. IT LOOKS GREAT. He listened to his esophagus and stomach and read over previous tests and reports from last year and the previous years and he's doing great. He's actually shocked Jonathan isn't showing symptoms of reflux. Next year, just to be on the safe side, he wants Jonathan to see one of the GI doctors. With his esophagus condition (reminder, he had esophagus surgery to attach it to his stomach at one day old), he is at higher risk for esophagus cancer, so they must monitor it. Same thing goes for his testy, because it didn't drop, he's at higher risk for prostate cancer. IT'S NOTHING TO GET WORRIED OVER NOW. The risk of it happening is still rare, just more common than if he was born healthy. Regardless, NOW, he's doing great...THEY BOTH ARE DOING GREAT.

Samuel felt a little left out today :( So a nurse let him get weighed at least :) And we all went to Fudruckers for lunch and met Elicia there :) YAY!!! The boys were so good today, that we treated them to some yummy Strawberry Shakes. Needless to say, they did NOT share, and they drank them ALL down. LOL.

God Bless you all who have been there for us, from day one, or just even yesterday or today with a call, message or text. I, mommy, have been quite the basketcase this last week, and you've all kept me smiling. I knew in my heart that they looked great and wonderful, but was just worried I was missing a sign or symptom. Today was reassurance that I hadn't, and that my boys continue to be strong and show mommy and everyone what true miracles they are and the HOPE they can give others...especially their mommy :)

God Bless you all ALWAYS!

Happy New Years

Out with the old (2010) and in with the new (2011). For the Anderson men, we had a wonderful and blessed year, however, we felt the pain of our family and friends. So this year, we send many well wishes, blessings, and happy thoughts to you all. God Bless our family and friends who continue to be there for us. March and April come the month of all the specialist appointments. The boys are doing so great though, BRING THEM ON!

We also want to send extra special blessings and prayers to everyone expecting. I swear, 2011 is going to be a baby boom kind of month. As always, think about having echocardiograms done, around 20 weeks the doctors can see the heart clearly to see if there are 4 chambers and to see if there are any concerns for follow up...PLUS...it's a great time to find out the gender of the baby...so I can go shopping for something cute :) Yellow, green and purple don't work for me :) LOL. Lastly, once you deliver, and I am hearing most hospitals are now implimenting this, please ask for a pulse ox (oximetry test) on your new little bundle of joy, before taking him or her home from the hospital. One more way to help prevent damage to a heart that could (hopefully not) be possibly a little more fragile than some.

With that being said, we are proud to announce that February 7, the city of Sioux City, Iowa and it's Mayor and City Council will be presenting a proclamation to our men for February 7-14 and declaring it Congenital Heart Defect Awareness Month. This is the second year our great city has done that.

God Bless you all. We love and care about each of you so much