Thursday, May 27, 2010

Cardio appt. news and UofL game benefiting Team Brave Hearts pics

We had our monthly cardio appt. yesterday and unfortunately the pressure in Evan's left pulmonary artery has gone over the mark - requiring intervention. We should be getting a call today with a heart cath. date. Following the heart cath. Evan will be presented to the heart board the following Monday and we should have a date for surgery the next day. Our hopes are this can be done in time that Evan is given enough of a recovery period to return to school with all the other kiddos in August. Evan of course understands all of this and had a good talk with is beloved cardio. His main concern was that he didn't want versed before the cath. Our cardio agreed that Evan would do fine without it so he and his Dr. made a plan to walk together into the cath lab and Evan will put the mask on himself. This made Evan feel much better. We told him the mask has a sleepy gas and he will fall asleep and Dr. M will take a tiny camera (I held up the post of the earring I was taking out and said - this size) and use a remote to guide it up to his heart to take pictures and then take the camera out and take the mask off and you will wake up and we will go home. Of course his response is... and then they will show the pictures to Dr. Austin and then I'll have to have surgery. I told him that, that is a possibility but reminded him of how awesome he did before. We talked for an hour at least... questions... answers... questions... answers... His need for security and stability are always so strong and he was only comforted when we were side by side talking or just being together. He slept well and the first words out of his mouth this morning were, "so it's just a cath right?" I'm praying he is having a good routine day at school. Teacher says he is doing fine.
A couple of weeks ago our support group, Team Brave Hearts, held a fundraising event at a UofL baseball event. It was an awesome day. Our Brave Heart kids got to come out on the field and our oldest Brave Heart read our mission statement. Evan got to throw the first pitch! After the 4th inning we had our Brave Hearts stand on top of the dug out holding signs that read THANK YOU while our oldest Brave Heart read a piece about our beloved surgeon, cardios and staff as they were brought on the field. It was a wonderful way for us to say thank you. UofL donated all food and drink monies that day to Team Brave Hearts - Thank you UofL for your awesome support. We have recently joined forces with Kosair Childrens Hospital Foundation and have an agreement to raise $100,000 to help build a Heart Patient only ICU. We are excited at the door opening to Kosair and our plans to help other families traveling the same path as ours. Enjoy the pictures of this awesome day.

Team Brave Hearts take the field

First Pitch

Receiving Baseballs (which Evan asked his surgeon to sign - how sweet)

Holding Thank You sign for the surgeon and cardiac team to see as they were entering the field to be recognized

Our Beloved Surgeon

Evan's favorite cardio nurses

Surgeon and a few of our Brave Heart kids (isn't it sweet that Evan & Alex are holding hands?)

Monday, May 24, 2010

Kindergarten Graduation Program

Evan's teacher and her assistant did a wonderful Kindergarten end of year program with lots of songs and poems and reciting. Evan was so proud to show off all he had learned with his friends to us and Mamaw and Papaw. Each kid got to go out into the crowd and pick someone to come up and do a song with them - A Tootie Tah Tah. Evan loved having me up there - especially the part "bottoms up, tongue out."

Bottoms out...

Awesome teachers! What a wonderful year!

Proud Mamaw and Papaw

Proud Parents!

Wednesday, May 19, 2010

Photo Shoot AHA & UofL Coach Strong

I feel so lucky and blessed to have such a strong network of heart friends locally and online. When myself and the other 2 first families met and started talking about making a support group called Team Brave Hearts I had no idea where it would take us and how much we would be able to accomplish together. When we met we wanted something to do... a way to connect and raise awareness. We started walking every year in our local American Heart Association Heart Walk and we grew and grew. Those walks definately have filled my heart with pride - walking with so many people wearing our shirts and everyone asking - who is Team Brave Hearts??? Our kids have been chosen (for the 2nd time) to be a part of the posters AHA puts around town promoting the walk. They are with the Univeristy of Louisville's new football coach - Coach Strong. The posters are suppose to say something like - The Strong family stands Strong for Kids with Heart Defects. It was such a neat experience and Evan just LOVED the coach. See below some of the pictures I took from the side lines.

Thursday, May 13, 2010

UofL Baseball Game

This invite has gone out to friends and family but I wanted to post it here as well. I'm so excited about this event!

I wanted to invite all of my friends and family to a FREE UofL baseball game, featuring our very own Brave Hearts. One of the kids are going to throw out the first pitch and we are going to recognize our surgeon and cardiologists. We also receive proceeds from food and drink sales and most importantly we are getting the word out about Congenital Heart Defects. We have recently redirected our fundraising efforts to concentrate on Kosair Children's Hospital. Specifically, we are raising money to help support heart families and to build a separate ICU for heart patients.

Come out and support Kosair Children's Hospital, U of L baseball, Team Brave Hearts and the many devoted pediatric heart specialists.

Thursday, May 06, 2010

C stands for Cath and not Cancer

I'm tired... I feel like I say that all the time but really, I am tired. I love my life - being a Mommy, working, running to Tae Kwon Do and baseball games. GO CUBS!

I've been sick pretty much since I started taking the full dose of Avonex a little over a month ago but, not as bad as I was warned so, I feel lucky. I had a horrible case of strep throat and then as soon as I quit the meds I came down with it again. I went to the Dr. and the strep was positive they also sent me for an xray as they were concerened with pnuemonia. The xray came back showing I did have it so I started antibiotics for it as well. It was recommened for a follow up xray in 10 days so I went for that. That was on the same day as Evan's cardio appt. It was decided there that we would have a cath. as soon at baseball season is over and surgery to follow unless a miracle happens in the cath lab. So looking at cath. in mid June and surgery in July. Sigh... I hate it. But he is my amazing little boy and I am the luckiest person to get to be his Mommy. By the way - he rides his bike now with no help whatsoever without training wheels & has his hair cut really really short (nickname chick magnet at school). So... we go to the baseball game and I cry with my best heart mama friends about the plans for cath and surgery. The next morning I'm up getting lunches and everything ready for the day and my phone rings. It was my Dr. and they want me to come in right now if I'm able to do a CT Scan. If you know me at all you know that isn't good enough for me so I begin to ask questions. What did they see? They saw no change so it must not be pneumonia with all the antibiotics you've been on. What are they checking for? For what it is. What do they think it could be? Oh.... umm.... it could be a subacute infection, or this or that or... cancer. I hungup and sat down in our spare bedroom on the other side of the house in fear I would wake Evan up and cried and cried and cried. This is the 2nd time since Christmas that my lymph nodes and other reasons have pointed Dr.'s to check for cancer. I was scared. I want to be okay, I have to be okay. But... who has cancer that didn't want to be okay? I was a mess that day. It was the latest I've ever dropped Evan off at school as I didn't want to wake him and him question my tear streaked face. He had enough to deal with just hearing he was having a cath the day before. My appointment was that afternoon and my parents were at my Dad's heart dr. appointment so between calling Eric, talking for a long time on the phone with my brother and a friend meeting me at Kohl's for some therapy shopping, I made it to time for my appointment. God put an angel in my path at the CT Scan. Like I said, I was a mess. The tech also had MS and was so comforting during the scan. It was a Friday and the scan wouldn't be read until Monday and she calmed me to be okay with that. However, that night my Dr. did call and it had been read. She said there were lymph nodes in my lungs that were calcified and that they were setting me up with a lung specialist - first thing Mon. morning. Again... I want to know what they are checking for and she said that it could be histoplasmosis, sarcoidosis, or something else and that they could not rule out cancer at that point. I went to the lung specialist and looking at the xrays and CT Scan he said he did not see any signs that lead him to believe it was cancer or sarcoidosis and that it looked like a classic histoplasmosis case - which by the way will go away on its own. I am following up in 6 months to make sure that things have stayed the same and no new places or the ones that are there haven't grown. I was relieved that he felt so confident but... my anxious self is still dealing with letting it go and not worrying. I have a problem... I admit that. I'm filled with anxiety and I'm constantly praying - talking myself down from a breakdown - giving it to God over and over again. For some reason I keep taking it back on myself but, again it is a constant battle raging within me. My MS is acting up - I'm not sleeping, I'm tired, my muscles ache. I'm sure it's stress.
So... that is the reason for my abscense. Oh... and work. The last year has been very rough on our group - unlike ever before. We thought things had calmed down but of all weeks, this week things are starting up again. Big changes. I fear more to come than we already know. That's just my anxious self talking again though. (I hate that I'm usually right!)

I'll leave you with a picture of Evan in our creek. We had a tremendous amount of rain last weekend and Evan (once the creek had gone down the next day) begged to put his boots on and fish for bull sharks!

Oh and another of his eyelashes when he fell asleep leaning against me. Aren't they beautiful?

Evan & Munc celebrating Munc's birthday.