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.