31 for 21, day 3

Today was a Dr. visit day.

I think it's pretty amazing that all of Brenna's cardiologist appointments are lining up with this month of posting 31 for 21.

Our day began by driving to the clinic for the cardiologist to listen to Brenna's heart.

Brenna has a heart condition called Tetrology of Fallot. Don't worry. You are not the first person to look at that and say, "huh?" Here is a link to a fairly simple explanation.

Brenna's first open heart surgery was when she was 9 months old. 

We expect to have her go through another surgery, but we just don't know when. We thought by now she would have had another, or possibly 2. So far, so good.

Can I just say I hate waiting rooms?

Brenna doesn't mind, they usually have a good movie on. Today was "Oliver", as in the animated cartoon about the cat, and Billy Joel is the dog's voice. I like that one. It was better than Pinocchio where we first checked in. I'm pretty much banging my head on the wall with those movies by the time we are called back to the room.

Yeah. I was bugging her.

When she was little, she would either sit and watch the movie or watch the other babies. Babies fascinate Brenna. She adores them.

Over the years we have developed quite the list of doctors. Some kids with Down Syndrome have very little in the way of health problems. Some, well, some of us hit the jack pot. We have spent long hours in offices of her G.I. , endocrinologist, eye, dermatologist, pediatrician, ENT, Orthopaedics, cardiologist....I think that covers everyone. I love each one of these doctors. We have been so fortunate. They are kind, caring physicians who treat Brenna with great respect.

But, like I said, today was Cardiology. It's not my favorite, because it's the scariest for me. The doctor is very thorough and takes his time to explain what they are watching. (When I asked if we could take pictures and explained why he did look at me in great surprise, but shook it off. Brenna was in charge of photos at this point.)

As best as I can explain, if you are looking directly at the drawing here, on the left (bottom of the photo) side is the ventricle where Miss B. has problems. The blood flow leaks significantly into this ventricle and is not carried back up. This enlarges the side of her heart, which is not what we want. The other side also leaks, but not as significantly.

The doctor listens to B's heart and today said there was no significant change from last year, and in 2-3 weeks we will do another echocardiogram. We used to have to sedate her for these. It was a nightmare. She has ultra sensitive skin and the EKG leads would stick to her skin for days and by the time I could get them off with her screaming and crying, they would leave large bruises. Brenna wouldn't wear band-aides the first 10 years of her life. Thank goodness for technology, as the material they use for the leads now comes right off and they don't stick!

The doctor asks all the usual questions:

Does she turn blue?

Does she sweat when not exercising?

Fainting?

Short of Breath?

Chest pain?

Heart racing?

Thank God we answer no to each question, which usually makes the doctor do a double take, considering how her blood flow in her heart sounds like a water fall.

Our favorite game while waiting in the rooms used to be tearing the paper cover into small pieces, wadding them up and then playing basketball. Or, coloring all over the paper. Or playing with the blood pressure cuff and the light they use to look in your ear. Or blowing up gloves. Or answering "are we done yet?" a hundred thousand times. Now we play on the iphone. Have I mentioned I love technology?

While waiting for the nurse I found myself in a familiar position-snuggled into Brenna while she sat on the table, my face buried into her back and neck. I breathe deeply as if to imprint her smell on my brain and run it through my very pores. I close my eyes and pray a big thank you that there was nothing significant heard on the examination today, and try not to think about the upcoming echo. It is very quiet for a few minutes and for a fleeting moment I wonder what life would be like without this amazing gift we have been given.

Then it's time to go and Brenna is more than ready to get back to school and I am thrown into real time and we gather up our belongings, thankful that there isn't time to dwell on the what-ifs and head out the door to meet the day.

to read more stories, please visit

Tricia

at unringing the bell.

xoxo

lynn