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.

Getting better!!!

YAY! Today was another one of Robynson's heart doctor appointments and it was all good news. :) Here are the key points:

Mandy (me) had a panic attack or flu bug attack and couldn't be there in the appointment - again. Dang it! BUT Jeremiah was there and to Robyn, nothing is better than some one on one time with Dad. :)

Robyn was good for the Echo on her heart, the blood pressure checks and for all of the other checks by the doctor. She even got a little truck and a color book for being so good. :)

She was taken off 2 of her meds - Digoxin and her Furosemide. Now it's just 2 meds in the morning and the same 2 meds at night!

Robyn gained a little weight so her 2 major medicine doses were increase a little. The meds that were increased are the ones that help her heart function how it's supposed to. :)

Her EF is at 66%! :) (Nod your head - it's a good thing!)

We're so excited and happy for her improvements. :) The person doing the Echo explained everything to Jeremiah in detail - and he just LOVES that stuff. The doctor was great to explain to Jeremiah the ins and outs of her heart. But in essence - the more she improves, the less likely it is that she will have to have a heart transplant later in life. :)

Thank you all for your love for our family! :)

She's still doing great! :)

Sorry I didn't post this earlier - life just gets busy!

Robynson had labs drawn in January to check her Carnitine levels (just nod your head, too confusing to explain). The blood work was sent to her Pediatric Cardiologist at Primary Children's for analysis. Long story short, she's just fine!

We are able to keep her off of the Levocarnitine med (most expensive, biggest dose twice daily med) and the baby aspirin for now! :) She still has 4 meds in the morning, with 2 of them repeated at night time. Generally she will take them without much of a fuss, but every once in a while she will flat out refuse or tease us with them.

Also, we heard back from Medicaid (finally!) Not great news - we were denied for her claims back when everything happened. But we are able to qualify for a Spend Down (which is when you make too much money so you have to pay to be on Medicaid). So for just over $11,400 - Robynson will be covered for the time she spent in Primary Children's. Much better than the $70+ thousand that it was originally, but it still sucks. Needless to say, we don't have the money and I don't see us having the money in the near future. We are trying to get ahold of our Medicaid case worker (which is rediculous) to find out if we can be on some sort of 10 year payment program. Yeah. We're sort of broke right now with Jeremiah being laid off and me not having a job. Luckily, that means we ARE on Medicaid right now!

Anyway, Robynson seems really healthy and happy. I'm starting to be more brave about taking her into public type places (she's gone to church like 3 times since getting out of the hospital). I'm allowing friends to come over even if their kids have a cold. Baby steps, people. Baby steps. Robyn has gone to the Insta-Care down here twice in the last few months because I'm not taking any chances when she gets sick.

Once again, I can not thank people enough for the showing of love and support and just everything from those around us. :) It's wonderful to know that people out there really do care and want to help. Robynson's next appointment isn't until the end of this month (25th) so I will post again then.

Much Love! :)