Did you know that 1 in 100 babies in the U.S. are born with a congenital heart defect? CHD's are the leading cause of infant death, and the #1 birth defect of live infants. The cause of most congenital heart defects are unknown, yet funding for research vastly lags behind childhood cancer and other genetic diseases.

Has your child been diagnosed with l-tga? I would love to talk with you. Please enjoy my blog and email me if you would like to join a network of parents of children with l-tga and other CHD's.




























Friday, March 30, 2018

BOSTON


We left home on Thursday morning and after a long day of flying, we landed in Boston, MA.  We left Sacramento, laid over in Phoenix with just enough time to practically run through the airport before catching our connecting flight, and got to Boston at about 8:45 local time. We had a lot of turbulence on the last portion of our journey across the country, but we made it safe and sound. 

We got in pretty late and made it to our hotel, ordered a pizza, and went to bed. We woke up pretty early this morning and were ready for our hospital orientation when they called and told us to come an hour and a half later.  So much for a few extra zzzzz's. So we killed some time looking at maps of things to do and got to the hospital at around 12:30 local time. They took us to all the locations where we have appointments scheduled. We will be there most of the day on Monday and should know what the recommendation is going to be, based on the data they will collect...

Nicholas has had very congested sinuses and he's been saying his ears hurt.  He's had yellow snot for about 3 days now.  He hasn't had a fever.  I thought his ears might be hurting because of the pressure inside the plane, but even as I write this, he has said his sinuses and ears feel kind of funny. I told Suemei, our orientation guide who works with Dr. del Nido, that he has the runny nose and she asked if he is on antibiotics or is taking ibuprofen.  I told her no, and she said they will check him out on Monday.  I'm hoping that he is feeling better by then and that they will still be able to see him for the testing. We also told her that we will not consent to surgery without seeing the MRI report first.  She said we should have all the data and will be able to talk to Dr. del Nido after all is said and done. 

It was raining off and on all day and after we got back to our hotel we were able to ride the trolley to Fenway Park.  We got to take a tour of the stadium and see the oldest MLB field in baseball!  It was really a highlight so far, getting to see something so historic and meaningful to Nicholas.  

So now here we are, at the hotel, and Lorenzo and Nicholas are downstairs playing a game of jenga with pieces so big the start of the game is almost as tall as Nick.  

I am having a hard time getting photos to upload, but I wanted to write an update nonetheless.  I will have a little more time this weekend to go into some specifics.

Bye from Boston!