CHOP Visit Results

Memorial Day is a time of observance of those who lost their lives serving this country and fighting for our freedoms. Our neighbor rode in the Rolling Thunder parade, the flags are out and its a nice day for patriotism. Its hot as heck out so while we are dressed in red white and blue, we are inside...I've been using today as a time of reflection of Liam's time in the hospital and saying a prayer for those little ones who fought a great fight as well. He is a survivor yet there are little ones who aren't that I know other heart families remember.

Last week, we had a cardiologist follow up and immunology visit. Our cardiologist said Liam's heart looked great, both in echo, EKG, and was really amazed at how well he is doing post op. She even said he was looking better developmentally than most other post op kids, with or without chromosonal concerns. Liam and I were on our own with Alex still in training so we celebrated by jumping on our king sized hotel room bed, eating rice cereal and ordering room service. It was just a nice feeling to truly feel good going to and from CHOP. It is hard though to see some of the same children who were there in January when we arrived. I was able to see a few parents and catch up with them, although I also don't want to be in their face at the same time. While Liam had his time there and faced his own struggles, it was hard sitting next to his crib watching healthy babies in strollers and I just didn't want to make others feel that way. Its a bittersweet feeling going there, both good and bad memories. The best news when we left was no follow up for 6 months!

The next day we went to the immunology visit. This one was a little bit trying..got there at 10am. We weren't seen until noon. Then sent to get bloodwork and it took almost 2 hours for that. Liam and I didn't get on the road back to DC until 2:09pm and I cringed because of the well known DC traffic. (4.5 hour drive alone with a 6 month old..not fun) The good news leaving this visit was they thought his immune issues had nothing to do with anything other than his chest drainage and chylothorax. Also, a lot of DS kids have a lower immune system as it is, so he kind of got a double whammy. A week later, this past Friday, we just got his results- everything has improved! He still has one antibody that is pretty low and a particular white blood cell as well. They will recheck levels in September again. But we can be less vigilant and enjoy fresh air, errands, other kids within reason. Definitely more reason to celebrate.

So on Liam's health front, we are continuing to get stronger every day. It has been almost 3 months since we have left and we are officially down to ZERO medicines. Life with him gets more fun each day. He is quite the mover and shaker. Liam so badly wants to sit up alone, crawl, run, you name it- he is ready to move at all times. Sigh, if only I could get a nap from him once in a while....oh well, must be making up for lost time!

Prayers

Sometimes life is just not fair and this is one of those times: another heart mom lost her 4 year old daughter Chrissie. Please include them in your prayers as they celebrate their princess and grieve.

http://allarepreciousinhissight.blogspot.com/

Its times like this that I am definitely going to let little man snuggle in bed all night. Kiss your babies tonight.

6 Months and Reflections

At 11:50 pm, on November 11th, through tears and smiles, we welcomed our little beautiful boy into this world. We had no idea what was coming or the strength he would give back to us. Through all of the ups and downs, he is a happy, strong, handsome little man. I can't believe its been 6 months. Everything he went through feels like a bad, distant dream. We still have a fight with this immune issue but he has done well so far, we feel he really will push through and be 100% healthy.

On Mother's Day 'eve', my parents came down to visit while Alex is gone on a business trip. Everyone had gone to bed and Liam woke up, talking to himself around 11pm and I decided to indulge his need for attention. We got into my bed, put on SNL and watched Betty White kill it, as he and I babbled together. The clock hit midnight and I looked down and there he was, sleeping peacefully against my chest, holding onto me tightly with one arm. There is no better Mother's Day gift than the health of your child and looking at his pink cheeks, golden hair, and sweet sleepy smile, I thanked God, Alex, my family, all of you, our friends, prayer warriors, for just thinking of us.

All of the changes we have been through has also changed my personal path and that has been a lot for me to embrace as well. I was on a great career path in political and business management. I have been in DC since I graduated college with intentions to push through to executive level at a young age, make a name for myself and embrace all the nation's capitol had to throw at me. In some ways, I am sad to leave-friends, coworkers, fundraisers, Eastern Market on Saturday mornings, favorite restaurants and politician spotting, even football on fall Sunday mornings with the Potomac River and the White House as a back drop- its a beautiful city. I never had planned to leave but when you marry someone, its not about you alone anymore. You make decisions based on what is best for both of you. That was a big change, I am kind of stubborn as some know. But then, you have a child and everything just hits the fan. He will always be first, healthy or not, and his needs will outweigh mine by a million tons. But moving home does so much- Alex will be in a job that he is overjoyed about and will take him down a career path he has dreamnt of; Liam will be close to his specialists at CHOP and more importantly, know his family as he grows up near everyone. And then there's me..I get to go to family parties more, watch the cousins grow up and maybe reengage with some friends from home, past a Facebook comment here and there.

I have had an amazing decade in DC, I have met some amazing public figures from President Bush to President Musharaff of Pakistan, travelled around the world, been exposed to the best business leaders who coincidentally are also some of the most compassionate people I have also met, and frankly, I accomplished what my original goals were. We might be back one day, one never knows where our paths will take us or the federal government or Army it seems.

I will miss being on the inside edge, hearing about the news before CNN breaks it and the opportunities abound here. But, if I'm honest with myself, the motherhood path has given me more in 6 months and has taught me more about myself than the last 30 years. I know who I am, the core of my being has been tried and I am seeing what my future holds. Its going to be a little scary, the unknown for me always has been, but a clean slate and a new chapter is pretty exciting.

I'm packing slowly each day, a room or cabinet here and there, and while some of its sad, I am finding my biggest smiles are finding the random pacifier or a photograph from our wedding day or a memory, like when Alex and I painted our bedroom here, our first home. My foot was teal for a week and I learned an invaluble lesson to always wear socks when painting. Memories are living proof of this life I've created and made, and DC brought me some of the fondest of them all.

Horse drawn carriage ride through the city at midnight and Alex proposing to me at the Jefferson memorial

Walking down Independence Avenue as NJ's Cherry Blossom in 2002

Trying to find my uncle John on Pennsylvania Ave 9/11 after watching the Pentagon burst into flames out of my boss's window and not being able to get a hold of my family- I went out and got a cell phone that weekend

Meeting President Bush and VP Cheney, more than once but being in awe each time of how lucky I was

John Thune's victory party in 2004

Too many margaritas at El Paso Cafe and queso with some of the best friends a person can have

And the list goes on. Thanks to all who have helped me live my life and teaching me so much about myself.