Just amazing !

IAmazing! The words that Dr. Rosenthal at LPCH  described Brody as! Just amazing! Each cardiologist Brody has is surprised that Brody has Hypoplastic leftheart and  a mechanical tricuspid valve... Those two are not in the same  category! God has a plan that's all I know! A year ago I was beating myself up thinking maybe I did  not make the right decision for Brody... But it's all in the plan. Everything happens for a reason... Brody had a very rough road but he has shown everyone is strength, determination and Attitude!

We will head back to Stanford in 3 months for another checkup! As long as Brody continues to do well Dr. Rosenthal thinks we should leave Brody be! Meaning not going to do a heart cath! Meaning we don't have to go to CHOP! It's inevitable that we need another intervention soon but not right now! One day at a time... We are more than thrilled we don't have to put Brody through that trauma again. His cardiologist said " he is still recouperating" he has only been out of the hospital 7 months... His mind body and soul are healing, and we need to let him keep healing! Music to our ears!

We have had an eventful summer! Our family spent a whole week in Vegas for National dance Competition with Star Systems! Our local Balletos Leap of Faith Dance school placed nationally! Was a great experience... We are now (kinda) broke into the dance family thing! Every family that joined Balletos were amazing! It was like our own huge dance family in Vegas!

After Vegas is when we headed to Cali to wait for Brody's Appt at Sanford! While we waited we wasted no time and made sure every day was full of adventure! We went all over Tahoe and San Fran! Each day was a blessing. Plus it was cool! Not 110 everyday!

It was an amazing summer and we spent it together! That's what counts... Wherever we are... We have fun!

These two caught tlfish in Tahoe! They were more than proud! Brody took a whole 15 minutes to real one in... I  just let him be:)

Charli and Brody became even closer this summer, with Brody being a bit older and Charli being very patient they were little buddies, now that we're home Brody has a hard time when she leaves! 

Melts my heart! We will see how he does when school starts. I'm still debating about pre-school for Brody??? 

Wishing everyone  health and happiness! God is good everyday! Kiss the ones you love

One year later!!!'

One year ago I handed my beautiful baby boy over to Dr. Spray.... One year ago today was the beginning of the toughest journey our family would go on... And one year later here we are!!!!

The last year to say the least has been full of up's and down's! Our life has changed tremendously but we have prevailed!! God is good everyday!

Every day we need to find something to celebrate! Life stressors will always be there try and enjoy everyday!

Our family is the most important thing... Sometimes you need to tweek your life, your everyday routine to make the most important thing family .. Be the most important thing! Since my last update we celebrated two beautiful birthdays! You can imagine birthdays in our house are a huge deal! Huge milestones! For Brody and for Charli! We celebrated the whole month of May! Was perfect! Brody was loving the happy birthday song! I think we sang and lit candles about 20 times! Little things count!! Brody loves to say "it's for my birthday".. Even though it's June!

Our family is going to be busy the next two months before school starts again in the fall for Charli.  We leave this weekend for Vegas for Charli's national

Dance competition!

Then, in a few weeks we head to Stanford again for heart failure/transplant evaluation.  Hoping to not be listed again. Depending on that outcome we will then head to Philly CHOP for another procedure for Brody's heart to hopefully help control the PLE.. Protein loosing enteropathy. That's the plan as of today...i pray and put my faith in god that all will work out as it should! I find myself thinking about the future and getting upset. That is when I take a deep breath and remember to focus on today! Focus on the great of today !!! God is good! Kiss the ones you love!

Whirlwind!

Where to begin? The last couple weeks have crazy busy hectic to say the least!!! First we got married! We're all Ringenbach's!❤️❤️❤️  Seth and I got away for a whole week thanks to my mom Di! She was amazing and kept them while we vacationed! A much needed vacation. No sooner did we return and just like that we're back to reality ! Brody had a busy week... Two cardiology visits, one ambulance ride.. Two Emergency rooms all in a few days. Brody is ok... Just being Brody I guess?? His little body has been through so much... He takes so many medications and still he's happy!

Basically Brody is being diagnosed with something called PLE, protein loosing enteropathy. It's complicated, 5% of Fontan patients get PLE... 5%... That's our boy! So where do we go from here? There's one specialist for PLE in the whole country. Dr. Jack Rychick and guess where he is? Yup! Philadelphia, CHOP is always the answer. Brody has such a team working on him. Stanford, Phoenix and CHOP are all in collaboration to make sure we're doing everything we can to maximize Brody's health. 

I have been trying everything in my power to help our boy! When you have PLE you loose to much protein... Protein is what keeps your fluids inside your vascular system. When you don't have enough protein fluid leaks out of your vascular system into tissue causing swelling.

You also loose valuable nutrition your body needs to survive. I think I may have spent a fortune these last weeks buying protein powders, vitamins and minerals to try and replace what he's loosing.  Only problem is Brody is so picky. He won't drink any of the 11 powders I bought... I mix it, freeze it, shake it, pretend it's ice cream, sneak just a tiny bit into his milk... NOTHING.  Brody proceeds to tell me this milk is yucky get me fresh milk. I follow him around trying to get him to eat all day! We even eat in the bath tub and in bed! 

Deep breaths, one day at a time. We have started new medications and the medications  seem to be helping. We will draw blood again next week in hopes that his albumin ( protein)  is higher.  If it's not we will be heading to CHOP for another heart Cath to possibly open his fenestration ( tingly hole that releases pressure) in his heart. Sometimes doing this helps with PLE, takes some of the pressure off, in return takes some pressure off of his liver which is the producer of lymphatics. Confusing I know... Basically you have a vascular system ( blood) and a lymphatic system ( lymphs) both completely seperate. Brody's lymphatic system has been damaged multiple times because of all his surgeries. You have millions of lymphs all over you body, you can imagine opening his chest 4 times, 12 caths to his heart... Central lines, art lines... Damaged his lymphatic system. So this is what we're dealing with. More meds

PLE is associated with such a higher mortality rate than what we were already dealing with. Pray for guidance for his team, he really has people all over the country working on him.  In the meantime I spend my days on the phone, conference calling back and forth, trying to feed Brody, stuff meds down him and of course don't forget about Charli! She's a full time job to! She's a full time dancer which keeps me busy on top of already being busy! I love them... They make me happy

God is good everyday! Everyone has their own battles... This is our story. Spend your days happy! Tell your people you love them! I tell my babies every day I love you so much! Brody always hugs me and says I love you so much mama... All that matters! Kiss the ones you love❤️❤️❤️

Brody❤️❤️❤️

We're a few weeks out from when we returned from Stanford. There's always a decompression phase I've come to find out after any appointment, especially  this last one.  Sitting in a room for 10 hours with so much transplant  information thrown at you is to say the least overwhelming. At this juncture Brody is not being listed for a heart! Advantages outweighs risk at this point, when it reverses and risks outweigh benefits then he will be listed.

The new team at Stanford was amazing! Seth and I loved his cardiologist Dr. Rosenthal, amazing caring man. I've always thought I was a pretty good judge of character... You can tell a lot about a person within the first 15 seconds you meet them... I loved him...as did Seth. I could feel his compassion, he was honest and that's what I need. He doesn't know when we will have to list Brody, but he says he will keep a very close on Brody. With that said we go back in 3 months for another complete work up.

Brody  has little to no idea about what's going on, it is his norm ... This appt was the first one he ever layed still for his echo

Maybe because he was exhausted from screaming from the hour long blood draw... But regardless it was nice! Echo's in the past have been difficult tiring stressful and just not fun.. This was a good change of pace:). Once the day was over we were all exhausted. The next day Seth took us for some fresh air to Half Moon Bay... Was wonderful 

The last few weeks have been a bit hectic... But when is it not? Brody has developed some signs of something called PLE.. Protein loosing enteropathy. Where your intestines don't absorb the protein in your food. Brody does not want to eat... To much.. He still eats but not as good as he use to. He has been swollen and just making me worried. So in we went... New meds added to help with swelling... Lasix is doing the trick!

Everyday is something new! But we're still having fun

Charli is such a little dancer! Brody of course does everything she does so he loves to dance to!makes him

So happy

Just for extra fun Brody has croup again... We spent the night at PCH, gave him steroids to decrease the inflammation in his vocal cords... We will go back in today for another shot... Then again tomorrow! Whew! Boy keeps me busy! 

God is good everyday!! One day at a time! Imogene! One day at a time! Kiss the ones you love❤️❤️❤️❤️

Stanford

Life is good, busy but good! Besides a few sniffles, fevers, and croup Brody is doing wonderful! Keeping us all on our toes, again Brody and Coumadin are not the best pair. This little boy has motorcycle, monster truck, backflipS and going fast in his blood. Regardless of always being on edge we are enjoying our crazy busy hectic life!

Charli is keeping me more than busy with her dance schedule. She's been in 2 competions, performed at the Mesa community college men's basketball game, this weekend will be the ASU gymnastics meet... Busy busy busy! Last weekend I braved the whole weekend alone with Brody and competition all weekend.... I was so happy when Sunday came! Was exciting but would have been easier minus a crazy 2 year old!

Brody's next big step is meeting the heart transplant team at Stanford. We go this week up to Palo Alto for his evaluation. It will be two full days of testing, heart transplant education, social work nutritionists, echo's,blood work and EKG's...all to familiar.

Feels like we just got home... So now we have this! I feel in my heart that Brody is doing amazing... He is doing amazing but we still need the evaluation and we need Brody to be on their radar. If something does happen we will be ready. 

Brody has also been evaluated for early preschool this comming fall... I can't believe it! Charli and Brody will both be attending Boulder Creek elementary this fall.... Time flies when your having fun! Brody loves people and some kids his own age will definitely be beneficial for him. He has a hard time sharing, unless it's with his sissy and his Emmy (Emily) this little boy has a heart of gold for the ones he loves... Even complete strangers, he will go up and say hi, give a high five then walk off... He's a special little man who has my whole heart! 

So here we go to Stanford! Power of positive thinking!! Everything is going to be good, a new team, a new city a new beginning! 

God is good everyday! We're ready to take this next step... I have faith that all will be good! Brody is amazing and we're enjoying his spunky little attitude!

Kiss the ones you love! Tomorrow is not promised. 

Happy 2015!!!!

Hoping everyone had a safe Christmas and a Happy Happy New year! I'm ready for a new year! A fresh start.. 2014 wasn't the best year... But it wasn't the worst either! I've been so blessed and feel that there is only good to come. Power of positive remember!!! We celebrated with fireworks and family! Was perfect! Happy new year! Brody says it perfectly!

We made it through the holidays with only a "few" minor bumps in the road. Honestly there is never a dull moment... Never! Charli had her dance recital in December and we made it home just in time. Thank goodness. She did amazing, watching her dance and grow into a little lady is such a perk of being a parent! This picture is perfect... Charli is the flyer in the back right and cousin Emily is the center flyer!  This is her Acro Team!

Brody loved the show! He sat through the whole show and applauded enthusiastically at the end of each dance! 

What else.. Where do I start? Brody has kept us busy... To say the least:) a great busy. Once we were home Brody had a few setbacks but we managed to stay out of the hospital!  First we were home and just playing on the trampoline which we do all the time... Brody fell off... So off to urgent care we went... All was ok but a small fall can mean big problems:) He was telling everyone he back flipped off the trampoline like his monster truck! I'm in trouble with this kid... He really is a rambunctious little man.

The next day after our trip to urgent care we dropped Charli at dance like we always do, went to Corrie's to visit and parked the car.. Got out to get Brody and the doors were locked! Brody still strapped in and perfectly fine! I panicked... My keys were in my hands but would not unlock my door! I have an automatic key but it wasn't being automatic at that particular moment! My phone was in the car! Corrie was not home... It was a mess...luckily there was a landline I had to call 911 to get B out! By this time he was screaming...I kept trying to play peek a boo.. But that got old quick.... The Gilbert Fire came and unlocked the car... It was a whole scene... Brody recouped after catching his breath from screaming for 15 minutes... And even picked a pink hat from the firefighters!

The week was busy... Like I said never a dull moment! I will spare the details of the croup the double ear infections the 2nd trip to urgent care for another fall... I think you can kind of see the picture right? Regardless we're here now and all that's over.. 

Brody continues to thrive... We have a cardio appointment this Monday to check

His heart function again. When we were in Philly ( the 2nd) time they decreased some of his heart meds... This ECHO will show us if he needs more meds or if he's holding strong! Holding strong is my guess! He has a healthy appetite, still loves his Pad Tai noodles! Plays non stop and just looks wonderful! I feel this appointment will be a good one!!

What else.. Christmas was wonderful we were all together and that's all we hoped for! Brody got entirely way to many monster trucks, even a home made one from dad!

He loves it... Sleeps with them! It's almost like his security blanket! Needless to say there are monster trucks everywhere! And girly stuff too!!!! If you look close at some of the pics Brody is holding a monster truck with blue nails! I have a perfect balance of all girl and all boy in our home:) makes me giggle:)

Wishing everyone a blessed year! Take each day with love... Where there is love there's life!! I truly believe this... My heart  is so full of love... I'm blessed and have everything I need! Much love to all! Kiss the ones you love!❤️❤️❤️❤️