First, we have to apologize for not updating Hannah’s site for so long. It’s amazing how life just comes at you from every direction sometimes. As you’ve probably noticed, Hannah has a new website! I’ve been working on it for quite some time, and it’s still not finished. All the prior guestbook entries still need to be migrated over, as well as some pictures. I will try to get those (and new pictures) uploaded to the site soon.
Hannah has had a very eventful summer. Her doctors decided to wean her from all medication in the middle of May to see if she had outgrown her arrhythmia. You never know until you try, right? A few weeks after she was completely weaned, she started having trouble. She woke up one day and walked from room to room, lying down wherever she went. That was definitely not normal, so we brought her to the doctor for an EKG. Her heart rate was 258…not good. We were told to go straight to PICU where they would get it under control. We knew this was a very real possibility, so we were prepared and knew what signs to look for.
As soon as we walked into the PICU, Hannah was given an IV, and the doctors began trying to convert her rhythm back to normal. After unsuccessful attempts with a bag of ice on the face and adenosine, she was given amiodarone through the IV which finally brought it under control that first night. We stayed one more night so they could monitor her, and we were sent home. So we’re back on oral amiodarone and propranolol for the foreseeable future.
A few weeks later we had a checkup with her cardiologist. An ECHO showed that this episode did not negatively impact her ventricular function — she bounced right back and is still doing great! Praise God!!! We are so blessed to have such an incredible team of doctors and nurses that care for her. I cannot begin to describe how awesome these people are. They still cannot believe this is the same heart that looked so bad a year and a half ago.
Episodes like this always help us refocus our attention on God and His plan for us. Through it all, we know that He is in control. Statistically speaking, 30-35% of pediatric patients outgrow AET and need no maintenance medication. Hannah has not outgrown it yet, but we know that in God’s perfect timing she will be completely off medication. We will not stop praying or believing that God will completely restore her. Until that glorious day comes, we will praise God for bringing us so far and for entrusting us with this precious angel.
Thank you so much for continuing to pray for Hannah. We know that we’re not out of the woods yet, but the light sure does get brighter and brighter every day.
Speaking of bright… Hannah just amazes us every day with how much she knows. She communicates with us very well, and normally uses words fairly fluently to tell us what she wants (although she does get a little whiny at times). She knows her ABC’s and has been reciting them for months. Her newest thing is saying them backwards! If she’s looking at the letters, she can go all the way from Z to A with no problem, and even if she’s not looking she can go from Z to Q! She counts EVERYTHING, reciting numbers all the way up to 13 or 14 by now. The cutest thing in the world is hearing her say new words. We read to her all the time, so she has picked up quite a big vocabulary. My favorite is “ketchup” — she says “chep-up”!!! A few of her books she will actually sit down and read out loud. Of course, much of it is her native “gremlin” tongue, but she definitely says key words about what is going on in the page. She is just such a delightful child; every day with her is such a blessing.