Tuesday, November 10, 2015

15 Months Old!

Aberdeen is 15 months old today!!! That's right, today - look at me being all on time and stuff. She has gained all sorts of skills in the last month: giving kisses, making kissy noises, brushing her hair, and standing while hanging onto things for brief periods (without my help!). She loves waving at everyone and showing them how big she is. She is now just under 20lbs and is cutting a few teeth - oof. 

Things have been going really well in all of her therapies! We've taken a new approach with feeding therapy: everything is on her terms. She isn't actually eating anything by mouth yet, but she is playing with the food and occasionally even bringing it to her mouth, which is a huge step forward. Us trying to feed her was always a disaster, so if we can get her to a place where she is actually interested in the food, maybe we'll have a chance at making some progress. We aren't sure of how effectively she is swallowing these days, but we'll get to that in time. OT and PT are happy with all of the strides she's making as well!

The following pictures somewhat capture how active she is nowadays: much more interested in grabbing the camera than cooperating, haha.

We got to celebrate Halloween at home this year! Yay! She was teething and had a cold, but we still had fun getting her dressed up and walking to a couple of neighbors' houses (since it was still quite warm out. Oh, Texas). We had a chance to go to a pumpkin patch earlier in the month, and have been generally trying to do all of the things we couldn't last year while she was in the hospital. It was a blast.

On a less stellar note: things with Abby's heart are not going well. We had hoped that her obstruction would at least level out after the jump we saw in her gradient at her echo last month. Instead, however, it increased at an even faster rate, and is now in the 170s (it was 140 last month). We've been told that if her gradient were to reach 200, she would almost definitely be showing signs of heart failure. We are getting scarily close to that number now, and nobody is happy about it. We are so thankful that she's been asymptomatic up to this point, but we're now worried that with how significant her obstruction has become, if she were to start showing symptoms of heart failure, things could deteriorate quickly. Our local cardiologist called Texas Children's to update them on her echo findings, and they are working on getting us scheduled for a surgical consult. We really aren't sure what they're going to say. We're hoping that they'll be amenable to the idea of the myectomy (removing some of the thickened muscle), though last month they felt that she was still too small, and she really hasn't grown much since then. If this is still not an option, we may talk transplant, or they may tell us that we just have to wait and hope that by the time she becomes symptomatic she'll have grown to a more favorable size. We do not like the idea of rolling the dice and keeping our fingers crossed (option 3). When Abby does things she doesn't mess around. With the increasing obstruction, there also becomes an increased risk for an arrhythmia, and our local cardiologist doesn't know if we'd get a second chance if she went into ventricular tachycardia (such fun conversations we get to have).

wish I could say that we are holding up great under the circumstances, but I have to admit, we're really stressed out and nervous about what comes next. We're really, really hoping TCH will have a proactive option.



  1. We are following you and Abby, of course, and love watching her progress. News like this from TCH does cause concern, however. Please know that there many, many positive thoughts and prayers coming from all over! As well as lots of love.

    Muz and Chuck

  2. The story of you and your little bird continues to amaze and inspire! I love the pictures of her being "SOOO big" - so cute!!! Lots of prayers and wishes for a joyous holiday.