Addy had a cardiology appointment today and overall it went well. Addys aortic root dilation is holding stable. It will never shrink but it hasn’t grown since February!!! We are so relieved. While we realize at the next appointment things could change…. For now we are happy! Her ascending aorta is slightly enlarged, however cardioContinue reading “Cardiac update”
Category Archives: Uncategorized
Weekend recap
Weekend recap:Left Friday morning…stopped in orange CT to. Toured the pez factory. It’s small but was neat, something different. Arrived in Boston Friday evening. Ate at Texas Roadhouse, at that one they still dance during certain songs and give our peanuts so the kids were excited. Took ethen to Barnes and noble because he readContinue reading “Weekend recap”
Just another update
Here we are with another update. My Gallstone is still there and still causing pain. I have two surgical consults coming up. Hope to have a plan forward pretty soon regarding all that craziness. There is only one stone, but it’s a large stone. Who knew one stone could cause so much havoc. Addyson hadContinue reading “Just another update”
Good weekend
After Friday winning against me (see Fridays post). We rebounded and had a great weekend. Saturday was super busy. We were all in different directions. We had softball practice, then ethen had a hockey game and I had a friends baby shower to go to and addyson had a friends birthday party. Thanks Jenna andContinue reading “Good weekend”
APRIL is coming in full force
So March is going out w/ a bang and April is coming in full force. April is stressing me out and it’s still march. Below are the upcoming appts. I’m just stressing looking at them and on top of it all I had to add a few for myself, due to getting diagnosed with gallContinue reading “APRIL is coming in full force”
Addyson chronicles (March 10th)
Welcome to our craziness. Let’s just start by saying that. I feel like we live in a state of craziness lately. So back in OCTOBER I booked today’s follow up with addysons sleep neurologist. There was nothing on the calendar year, so today looked like the perfect day. Plus it was a 930am appt… GoodContinue reading “Addyson chronicles (March 10th)”
Rare disease day
Today is rare disease day. It’s a day that we raise awareness for addy’s rare disease and all the other rare diseases. we now know multiple families who are fighting rare diseases. These families are remarkable, strong, amazing, fierce. We are also tired of fighting the Insurance, the Drs, the schools. Tired of searching forContinue reading “Rare disease day”
Sleep deprived EEG
We did it…. We made the sleep deprived EEG work. Thanks to our family and friends. Sleep deprived EEGs are tough because she has to stay up all night and then stay awake till she gets all connected. With everyone’s help we did it! She was soo tired. Sandra who came over in the middleContinue reading “Sleep deprived EEG”
Genetics: Dr. Chapman @ Children’s National
Today we saw Dr. Chapman. I really liked her. She took time to answer all of my questions and just discuss Addy’s Case. She said that we have truly had the best of the best genetic testing done. She only thought of two extra tests we could consider, one of which we went ahead withContinue reading “Genetics: Dr. Chapman @ Children’s National”
Cardiology follow up and qsart testing
Long day. Let me start by saying we didn’t get the news we had hoped for, however we still are hopeful that we can stop this aortic root dialation. Her echo showed. 3 growth in her aortic root dialation which is not what we wanted. We wanted it to stay steady (with no growth) CardiologyContinue reading “Cardiology follow up and qsart testing”
Beaming with hope 