Another Thanks :)

I get questions from people every once in a while that remind me how lucky I am.

"How's your little girl doing?"  or "How's Robyn? Is she still on medication?" or "How's her heart?"

I sometimes forget that I almost lost my baby girl (4 years ago today) to a heart problem. Crazy.  Especially when she is so full of energy, life, spunk. She is probably the most spunky, feisty, dominating little girl I have met. And I think her Pre-School teacher would have agreed with me! :)

Yesterday at school registration, DarTanion's first grade teacher asked me how Robyn was doing with all of her "heart stuff"?  What she didn't realize is that Robyn was the little girl running around the gym, spinning and getting the other little kids to follow her lead.  Jeremiah and I both laughed and said that she was doing great - no issues at all anymore. No more medication. Heck, no more doctor's appointments. Robyn is healthy.

Since today is the anniversary of that day, I am full again. Full of thanks and gratitude. Full of love. Full of peace.  People were amazing to our family when she got sick. People are still amazing. To think about our family. To think about our little ball of fire and wonder how she is doing. To think about our family.

Thank you again to everyone. Thank you for everything. :)

 

Because she's awesome....

Robyn, 1st day of Preschool

I tend to forget to post sometimes because, well, she's basically just awesome! :)

We had a follow up doctors appointment @ the end of September to check out everything since Robyn's been off her meds since April. After an Echo and meeting with the doctor, Robyn is, like we knew she would be, just perfect!

Her doctor came in and checked her out again after looking at the Echo Results and just said that she is what she would call "Recovered". Robyn's heart looks completely normal. She looks and acts like a completely normal, healthy, crazy almost 4 year old girl.

Her doctor said no further testing or meds were necessary and that she'd just like to see her again in 3 years, just to still make sure that her heart is growing / acting normal.

CUZ SHE'S A ROCKSTAR!!!

So, this blog is basically on the back burner unless our little girl gets a sick again or starts acting calm... Both of which I hope never happen. :)

Love you all! Thanks for your continued love and support of our little family. :)

2 Year Anniversary :)

Because today is a day that will probably always be a "scary" day in my mind, I thought I would do a post...

2 years ago, I took little 20-months-old Robynson in for what I thought was a cold or flu or possibly (worst case) pneumonia. And I was wrong. That wasn't the worst case... Heart Failure and 'oh, we're life-flighting her because she's so sick she might actually DIE if we take her by ambulance' is a lot worse...

(with the portable heart monitor on)

Today, Robyn is a hyper active (more so than most, actually) little go-getter. If she wants something, you better look out - she is going to get it. She has a spunk that rivals any kid I've ever met. She has a smile that charms both of her Grandpa's (and even her Dad, but he won't admit it). Somedays she acts like a girl, but most days she acts like her brothers.


Robyn went off all of her heart medicines in April 2011 and she hasn't needed them since. At her last appointment, the doctor was "thrilled" with her progress... We don't have another appointment until the end of September this year... And, I'm happy to report, I believe we have almost completely paid off all of her medical bills!!!

Robyn is very active and healthy. She hasn't been slowed down one bit by any of this. She jumps on the trampoline or swims in the pool or plays in the dirt, right along side her brothers and friends. She dances and sings at the top of her lungs. Such a joy to us all.


We are, as always, very humbled and thankful to all of the support we have gotten from our friends, neighbors, family and church. We don't know how we would have gotten through that first while without you.

OH, any Primary Children's Hospital Staff --
WE LOVE YOU!!!

Love,

Robynson and Family

Heart Update!!!

Robyn sporting her new shorter hair...
that she started to cut herself.

Remember how long, long ago (well, maybe not too long ago) the doctors told us that Robyn could be in one of the 30% groups or the evil 10 percent? Let me refresh you -

KIDS WITH HER HEART CONDITION:
30% get better and won't even need meds
30% will probably need meds but can still live a basically normal life
30% will need a heart transplant
10% die

SO, we've been in the 2nd 30% group and we've been totally fine with that because, well, she's okay and lives a basically normal life. BUT, guess what???

We're going off the meds!!!
YAY!!!!

Because Robyn's been growing and her heart looks completely 100% normal for someone her age / size, we have been given the go-ahead to start weaning her off her remaining medicines! SO, in about 8 weeks, we should no longer have a need for twice a day medication. And if she seems fine still at her next heart appointment (in another 6 months), we are in the clear! We'll only have to check back once a year (if that!) So here's to positive thinking, relying on the Lord and extra prayers (and medicine!)

LOTS of love and thanks to you all!

Pictures from this morning

My little monkey woke up this morning and wanted to put on her Dora panties with her new 'stickers' that she gets to wear. :) I thought I would take that opportunity to show you all the portable heart monitor. Not to mention her curly bed head hair and her cute Dora panties! :)

Much love. :)

She's a Rockstar :)

I was having quite the emotional day (and did an emotional post) on Saturday (7/31) because it was exactly one year to the date of when they took my baby by life flight and I couldn't go with her. I just watched her leave - not knowing what was going to happen. After a super scary week in the PICU (Pediatric Intensive Care Unit), a couple of freak-out breakdowns by me, lots of prayers and lots of loving care - she came home. My little girl will now be known as a person with a 'heart condition'. But you wouldn't know it by watching her, looking at her, knowing her.


Robyn is a super active, very smart, great talking, spunky little 2 year old girl. She likes ants and bugs, Mickey Mouse, Dora the Explorer, her Daddy, her brothers, swimming, running, jumping, chasing and hitting. She's a boy in a little girl's body. :) Though, sometimes, you see that she's a girl. She'll carry around a baby, a purse and talk baby talk to & want to hold babies. We are SO truly blessed to have this strong little angel in our lives.

So today was Robyn's "Official One-Year-Later Checkup" with her Pediatric Cardiologist. She started her appointment with a limited echo cardiogram. The guy who did it couldn't have been any nicer to her / us. He was being silly with her and talking like Blue from Blues Clues while she watched the movie. I kept watching the screen and her little heart beat. I was a little freaked out by the blue and the red with the occasional yellow/green colors on the screen. But it was also kind of cool to see the little flaps opening and closing - moving SO quickly. Soon that was over - before Blues Clues was, even - and we headed to our Clinic room to meet with her doctor.

Dr. Everett was looking at her charts and the new notes. She said that Robyn is a total little Rockstar and that she looks completely healthy. So much so that if you didn't know her history, you would think that she was a totally healthy, completely normal little girl. Her heart looks how it should for her age. :) Robyn is healthy. Robyn is normal. :)

We will keep her on her current meds for now. And that's okay. They also wanted to do another portable heart monitor for 24 hours - just to make sure everything looks okay during the day / night when she's NOT on the table in the Echo room. I'm not worried. We've done that before and everything was fine - as I'm sure it will be this time. Robyn doesn't have to see the doctor again for another 6 months. I can do that. I'm totally okay with no doctors visits til after she is 3 years old. My daughter is a Rockstar. And she is healthy and normal. :)

I have to say it again, and I hope you know how absolutely genuine it is every time I say it, but I am SO grateful for all of you. For all of your prayers. For all of your encouragement. For all of you love. Without it, we'd be lost. Thank you and we love you all VERY much!

Quick Update, with nothing really to update...

Well, I called today to set up Robyn's next appointment (which is supposed to be 6 months after her last one). Six months would mean the end of August. When I called, the 'soonest' available appointment they have available with her doctor is November 5th. You know, 2 1/2 months AFTER when she is supposed to see the doctor. She is doing great. You'd never really know that she was a heart condition child. She acts completely healthy. So I'm not too worried, but we're less than one week out from the 'anniversary' of her heart problem being discovered. So I'm getting anxious. But she's fine. Here are a few pictures for you to enjoy, since I won't have any real updates, it seems, for a few months.

***UPDATE*** 07/27/10

So the Doctor got my message about trying to schedule an appointment sometime in August instead of NOVEMBER... And she told the scheduler to call me and get me in this coming Monday. SO, I should have an update next week... Again, I'm sure she's just fine.