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! :)