Hi Everyone - We are long overdue in updating this website, and that is because all has been going great! Tarynn hit double digits in February and she is full of fun. She loves jigsaw puzzles, reading, animals, and she enjoys playing piano, altar serving, playing tennis, and Girl Scouts.
We now have two teenagers in our house - Aoife turned 13 at the end of February! Aoife loves being with her friends, playing tennis, playing the clarinet and she is also in drama club and Girl Scouts.
Aemilia turned 16 in the middle of February, and she got her driving permit on her birthday! She is in 10th grade and she also is involved with Girl Scouts, the TV news studio at her school, tennis, and singing groups both at school and at our church.
Brian and I are also doing great. This semester, Brian is on sabbatical, and he is happy about having time to pursue research projects. I love my students and I have great co-workers at school. I have also found a wonderful home and many kind-hearted friends in the parish we joined nearly two years ago.
Aoife continues to do very well cardiac-wise. She is on a schedule of yearly appointments, which is awesome, and at her visit in the fall her heart function looked excellent. Her echo readings and pressures are virtually unchanged from last year. Aoife's rheumatoid arthritis is also under control. We give her a shot of methotrexate once a week, and it seems to be doing the trick. In January, the doctor recommended that we try weaning her off of the medication. However, with the lower dose, Aoife's symptoms returned. So, she will stay on the meds and hopefully they will keep the pain and stiffness at bay.
Tarynn is monitored more closely by her cardiologist. At her last appointment, she had a treadmill test in addition to the usual battery of tests (ekg, echo, etc...). The good news is that her heart function is fine. In fact, the words her cardiologist used to describe her function were that she is totally “rock solid”. Her right ventricular pressure is mildly to moderately high, but the more significant issue is the valve regurgitation. The pulmonary valve that is inside of the artificial pulmonary artery (conduit) that was installed during Tarynn's 2nd open heart surgery back when she was 18 months old is not really functioning at all. The valve regurgitation can lead to right ventricular dilation, which is moderate right now but does not seem to be affecting Tarynn's heart function at this time. The danger comes when the heart is in this condition for too long, and to get the most accurate data, Tarynn must have an MRI.
Tarynn will be having her MRI in Boston tomorrow (3/11/19). If the RV volume or pressure is too high, then valve/conduit replacement will be considered. Tarynn's last cardiac catheterization was nearly two years ago. At that time, we were told that there is not really anything else they can do for her by cath, and the next step would be open heart surgery to replace the valve and conduit. We'll see what the MRI results show tomorrow. It may be that the echo pressure readings were more elevated than the actual pressures that will be measured in the MRI, and that Tarynn can wait awhile longer before any interventions are needed, or not.... Of course, we are hoping that all will be fine and that we are told "See you in a year!".
Thank you for checking in and thanks to all of you who keep our girls in your prayers and send us positive thoughts. We appreciate all of the care and concern from our friends & family! We hope you all are well, and we'll update again after Tarynn's MRI tomorrow.