The State of Grace

It's been nearly four months since Grace's heart surgery, and it's been awhile since we gave you a status update on her health. So let's pull out the Graceland Operation game and check out her parts.

Ears: Her post-op follow up was good and thankfully her tubes haven't fallen out yet! Grace has been responding so much better to all sounds since getting her tubes in. We're quickly learning to tiptoe a bit more during nap time. And the doorbell is the enemy.

Neurology: She hasn't shown any more signs of seizure-like activity. She had a follow up last month and she's been officially released from future neurology appointments unless new symptoms show up. We'll take fewer doc appointments when we can get them!

Eyes: Grace saw the ophthalmologist last week and her vision continues to look good. She still has a leaky right eye, but they think that's more to do with the shape of her eyelid rather than a blocked tear duct. Her right lower lid is a little too big for her so it doesn't hug the eye as it should, but there's no real concern about that at this time. She still sleeps with her eyes partially open, and crossed, which is also not a concern except when passerby's on the street stop take a closer look at the sleeping beauty, and keep walking without comment.

Early Intervention therapies: Grace has just added occupational therapy and speech/feeding therapy to her weekly routine, bringing her total therapy appointments to 6/week. She is managing the extra work well so far, and we will certainly be posting on her progress as we get settled into this new routine.

Here's the real exciting news:

Heart: We had a cardiology follow up appointment today. Her heart looks fantastic - the valves look even better than her last appointment and are leaking minimally. Dr. Geiger was very impressed with her plumpiness (16 lbs!) and was happy overall with the heart function. In fact, her heart was looking so good that she took her off of her lasix and captopril. So to review, when we came home from the hospital, this was Grace's medicine regime:

And now, this is Grace's medicine regime:

Pretty great!

There was some slightly bad news in this appointment. Grace has mild pulmonary hypertension, which apparently is quite common in kids with Down syndrome. This is the second echo that has shown this, so she thinks Grace might benefit from some medicine. In order for insurance to approve this medicine, however, we need to have more accurate measurements, which means Grace will be heading back to the hospital for a catheritization and a likely overnight stay. This is a minor procedure, but does involve general anesthesia and intubation, and of course we would prefer no procedure. If the catheritization confirms the hypertension, Grace will be put on medication to manage this, and doing so at such a young age is good for her longterm outlook. Oddly, the medicine for this is Viagra. We'll be sending Darren to the pharmacy for that one! :)

All in all, our girl is doing great, with huge thanks to all of your support and prayers. What a great Christmas gift!