Awesome news from clinic day! (1 year post transplant appt)

Today was Emma's monthly transplant clinic day. It started of with a blood draw, which is always hard. But today they needed a lot more blood than normal...20mls to be exact. It made Mickey and I nervous that they'd draw that much blood at once from our baby girl, especially since it's normally around 7-10 mls for her bigger blood draws. But they made sure not to surpass the maximum allowable amount for her weight. The first poke didn't go well at all. Her tiny little vein jumped like it normally does and wiggled out of the way from the needle. Meanwhile Emma screamed and tried to thrash around. It feels like it's getting harder on her, and harder to watch the older she gets. I think since she's starting to understand more and is getting bigger and stronger she's trying to fight them a lot more. But they did manage to get all 20 mls with the second poke, so we are thankful for that! 

Unfortunately the blood draw sets the stage for the echo, ekg, blood pressure, and everything else that follows. But labs just have to be done first because some of them are timed blood draws.

Anyways we managed to get all of the other tests and vitals done, and pretty soon Emma was back to playing and pretty content as long as no one touched her. 

The transplant doctor we saw today hadn't actually seen Emma since last December after discharge, so she was really amazed to see how good she looks! The doctor said that Emma looks fantastic, her echo looked good, her labs all looked good (including BNP which had been elevated and a cause for concern last time!). So she didn't have any concerns for us. What an answer to prayer! Also, because Emma is a year out from transplant now, she doesn't have to take Bactrim anymore, so that's one more med down! It also means we are down to a one page med list!! 

The doctor didn't notice any negative effects on echo from going off sildenafil last month. They will be able to evaluate that better during her cath in January. That brings me to the most surprising and amazing news! Apparently Emma is doing so well, that they canceled her next two transplant clinic appointments and she doesn't have to come back until her cath in JANUARY!!! 3 months from now!! We had no idea a big change like this was coming! We are still in amazement and praising God for this excellent report! 

We still have one other appointment in Seattle next month, and the blood draws every few weeks. But it's just amazing that Emma is so stable that she doesn't need echoes and ekgs every month. She's never gone more than a month without a cardiology appointment, so it makes us a little nervous, but we'll get used to it I'm sure. ;) 

Thank you for your continued prayers! Praise God that Emma is getting to experience Fall outside the hospital this year and her story can be such an encouragement to so many. She's our little miracle. ❤️