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.

Spring is here!

Its been a while since we posted- life has been certainly busy. Alex was offered a wonderful opportunity and is being relocated to NYC. So, we have put our house on the market and spent some time just getting it ready, moving things into storage, beginning to pack. Exhausting! We have been up to NJ to look at houses and found one in particular we love, so we are hoping to sell quickly so we can make an offer.

In the meantime, Liam has been doing wonderfully. We are being seen basically once a week either by a pediatrician, cardiologist, home health nurse, etc. Last week, our local cardiologist said his heart is healthy and while they will keep an eye on it, it shouldn't hold him back from playing sports, developing or just being an active little man. We will see CHOP's cardiac team next month and then again in July. After that, it sounds like twice a year we will be seen.

We were at CHOP just this week and saw the endocrinology team. While he was in the hospital and going through the tougher times, Liam couldn't regulate his temperature and there was concern that his thyroid was sick. He has been on medicine since and we had labs drawn to check the levels. Good news- his thyroid is healthy and no more medicine for that one! He will get his levels drawn again next month during our visit.

For now, the biggest concern for him is still the immune system. We had those labs drawn as well on Tuesday but they take a while to come back for those particular tests. He takes antibiotics to prevent any infections called Bactrim and it might be some time on this drug. We will meet with the immunology team next month as well and hopefully will see some improvements through the bloodwork.

In the meantime, Liam and I are enjoying the nicer weather with daily walks, rocking in the hammock every night right before Daddy gets home and hitting milestones. His therapist is positive about his improvements between each visit. Our biggest challenge is rolling over. He loves to sit up but gets stubborn with the tummy time into rolling!

Hope everyone is enjoying their springs- I can't believe he will be 6 months old on May 11. 6 months ago, we weren't even sure he would live this long. We can say that 3 months ago too. And now, we are looking at a clean bill of health, 13 lbs, 2 oz, of a very happy and smiley little guy. No tubes, no wires, no equipment. Just some rice cereal, right Grandma?

Thank You All

Alex and I recently made a video to share with our family and friends about Liam's experience and we wanted to share this, if you haven't seen it. Our family and friends have been amazing, getting supportive comments on here and in our inboxes have been so uplifting. As we told our family--You kept our spirits up, gave us hope and made us feel somewhat normal in a very crazy situation.

This may be tough to watch because some pictures we have never shared before
and there were also a few days where we just couldn't take pictures, it was
too hard.

http://www.onetruemedia.com/shared?p=aa1305a5d16fc704bdb08f&skin_id=701

Every year, we plan to become very involved and do charitable
work that will benefit Ronald McDonald Charities, Children's Hospital of
Philadelphia patients and Little Hearts Foundation in honor of Liam and all
of the other children who go through this. This fall as we get closer to
Liam's 1st birthday, we will do a wish list drive- CHOP kids have wish
lists of toys and items needed for the patients. Over the winter, we will
mark his surgery dates by hosting and serving dinner at the Philadelphia
Ronald McDonald House. We plan to be active in Little Hearts and work on
fundraisers with local companies and restaurants once we settle in to our
new home, wherever that may be. We hope we can steal some of time of your
time to help some other little warriors along the way.

Thank you again for being a huge part of this success.

Somebunny loves you!

He fell asleep right before meeting the big bunny but gave him a once over before passing out in his arms.

There's No Place Like Home

Picture is of Liam after his bath tonight- he weighed in today at 11 lbs, 9 oz and is back to the 50% growth percentile!

We have been home three weeks and its been a whirlwind. My little brother Ryan met me at CHOP and drove home with Liam and I- he was officially on Gloworm duty for the ride..poor Uncle Ryan. Alex and I were definitely overwhelmed the first few days- there were 15 doses of medicine a day plus 2 shots we had to give him. And the medicines couldn't be given together so our first few days we gave medicine from 8am-noon, then 6pm to 2am. Yawn. It sucked for Liam, we had to wake him up in the middle of the night, give him a direutic and then the little guy would be upset with a wet diaper an hour or two later. No one was sleeping well, including Ike our dog, who has become very protective of his little brother.

After we settled in, things became more bearable. We spent most of the first day home at the doctor's office and then the hospital getting bloodwork drawn. Later, we saw our cardiologist locally. The last few weeks have had ups and downs- medicines have been stopped and started again; one ER visit at 2am on a Monday morning almost became a huge setback and ended up being nothing. Mostly, its been a lot of time in a doctor's office (3-4 times a week) or having a home health nurse visiting to listen to his lungs. The biggest concern for his recovery is making sure no fluid comes back to his lungs. So far, he has done great in that area.

On March 19, we went back to Children's Hospital for his follow up with cardiology and a few other specialities which will follow him. We got another all clear and were able to spend some time seeing the friends we made while we were there. Everyone's kids seem to be doing well which was great to hear. One family was hitting a lot of complications and I would ask all reading this to say a quick prayer for Luke. He and Liam shared a pod area when Liam began going through his major set backs, and his parents were supportive shoulders for us to cry on.

It was a great trip, especially because his doctors who saw him were surprised by how good he looked. We were able to visit and meet new family members that weekend at my Mom's house, Sean and Tommy, Julie and the boys, and Aunt Joan, Uncle Harvey, Carol Ann and John and then at Jeanette's baby shower, we met Cara, Aunt Joan, Craig, Jeanette, Rachel and Nani. Great trip to NJ.

While it was great for him to meet everyone, we stll have to be very careful with him. During his drainage issues, his thymus gland was effected. This gland produces specific cells which fights infections- opportunistic infections (rare ones we all fight but because his defense is down, a common cold would become pneumonia in a short amount of time) So, he is now considered a low immune deficient child. Until those levels get higher, he is on a preventive medicine to fight infections. If he happens to have a fever, we need to rush him to the ER so they can make sure that it isn't anything serious. Luckily, he has shown no signs of this so far but we are also still keeping him very much a bubble boy. If we do go out, he stays in his stroller or only held by us or a close family member after using hand sanitizer. Its just the smart thing to do, especially since its still flu season.

We are finally able to breathe a little bit and enjoy the small things- I took him to his first Gymboree class this week and he did great the first 30 minutes, laughing and playing. His therapist has been by a few times and he is doing pretty well despite having laid on his back for 6 weeks and unable to move. Liam is beginning to hold his neck up for longer periods of time and starting to roll a little bit. In fact, he is pretty strong compared to where he should be.

I'm looking forward to a quick and hand sanitizer filled trip to the Easter Bunny in the next week. We will post that picture soon. I am working on a Liam hospital online photo journal and will share that when its done. There were quite a few days where we didn't post, pictures or updates, and that was simply because we thought we were going to lose him. Looking at the pictures, its amazing we didn't. He is resilient and joins a ton of other babies who fought back. And we couldn't be prouder.