Sea Isle City, NJ Pics

From our very much needed week away with my family. Liam loves the water and the beach was no different. This was the last week of July.

9 month checkup!

Liam had a great 9 month check up on August 13th. He was 18 lbs, 12 oz and 27 1/2 inches, which puts him at 25% for height and weight on the typical chart and a shocking 80% on the DS weight and 60% on the height scale. To say Liam likes food is an understatement! We were at CHOP on Tuesday for bloodwork to check his immune levels again, thyroid and hemoglobin- this is a new concern. At his check up, they drew blood and this level came back abnormally high. The doctor said he might have been a little dehydrated because he hadn't had a bottle since the night before (we were there at 7:30am). Hoping the re-test results show a more normal reading. Our therapist said at our last session that there is a normal curve for DS and a lower curve underneath that for kids who have had open heart surgeries and Liam is well above both, which made us happy. He refuses to crawl, only holding himself up for a few seconds. It may be his chestbone healing still or that he just has a weakened strength there because of his hospital stay, but the goal is crawling over the next few months. In the meantime, he sits, rolls and is trying to sit up on his own. We are working on the core strength still so his arms and legs can get stronger for the crawling and standing. When he stands now, he is curious about his feet and puts his head down to watch, and begins to fall forward! Its cute but not getting us closer to hitting that milestone.


And our ltitle man has made his Dad very happy because his first word of course is DA DA. He says it all day long...to me, MA MA, which I am patiently waiting for. Sigh! It is adorable to hear his voice past typical babbling.

This was created by another CHD Mom who is a graphic designer- thought I'd share my little hero's CHD tag!

Its Officially Summer..and way too hot!

We've had an exciting two weeks- after Liam's baptism, he began hitting a few milestones pretty quickly. He now likes to roll from back to stomach and on his own, this was a big one for us! And when he is in the sitting position, he can hold himself up with his hands on the ground. Its a great milestone and the therapist was really excited for us. We are practicing everyday and he continues to get stronger with his coordination. Liam does get very frustrated though when he cannot move, he tries to crawl, climb, move...we have gotten to the point of not being able to turn our back.

Liam is also now eating-his favorite so far is sweet potatoes! And occasionally he will hold his bottle and feed himself which is a great help for me when trying to multi task. Of course, all this eating has helped him gain some weight, he is now 16 lbs, 1 oz. In the 70% percentile on the DS chart..its hard to remember the 5 lb baby we were so scared to hold!

We haven't sold the house yet but are hopeful its coming soon- if you know of anyone looking to move around northern Virginia outside of DC, let us know! Living apart has been pretty hard for us, more lonely for me. We are alternating weekends and driving up and down 95 is getting old, especially as I start seeing the turtles on top of SUVs and families together heading to the beach.

In some great news, one of Liam's CHOP friends, Makenna had her open heart surgery last week and is doing great. She went home last night- another success at CHOP! We hope to reunite the little ones this summer at the Jersey shore and let their romance blossom :o)

Baptism!!

We had Liam's baptism yesterday- it was a fun service and an even more fun party afterwards with our family! Here are some pictures!

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.