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!
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