And the living has been relatively easy. We took Liam on our first family vacation to Sebago Lake, ME, over the July 4th holiday. Alex spent his summers there where his Grandma had a house. Its really beautiful, peaceful and undeveloped, which meant a true escape. And the house we rented had a helipad nearby so God forbid we needed it, we had it. I know, what a way to think on vacation but driving 6 hours north east away from life is scary too!
Two days before we left, Liam decided to take his first steps unassisted! Huge news. Our therapists think by the end of this month, he will be doing this more often, standing for 10-15 seconds at a time, take 2-3 steps, versus crawling full time. He cruises on everything, climbs, jumps, falls..without fear, so if he could start the steps soon, it would be pretty amazing. We recently started speech therapy and are already seeing little changes. He always has been a talker but he is making decisions, picking up the right flash card when asking for the dog for example, and trying to repeat everything we say- no more trucker Mom. I need to clean it up.
We have a CHOP day coming up in August with his immunology team. Its my hope that the bloodwork from this visit has improved since the last. We want to enroll Liam in a two mornings a week class and need the ok for him to be around the other kids. This class is unique- its called Stepping Stones and Liam and I made some good friends at a once a week playgroup it runs for kids his age with Down Syndrome. The two year old class meets for 2 hours twice a week where Liam will be receiving four extra hours a week of therapy, learn how to act in a classroom setting, and become more independent. During the class, unlike the group we were attending, I can't be there- that will be the hardest part! But there is a parent support group that meets at the same time which will be good for me too. Its a great way to learn from other wonderful parents and make friends.
Because his immune system is so low, we need to first ask the school if any other kids haven't had vaccines. If they haven't been updated, we either need to give Liam more meds to protect him or say no, which would frankly suck. We have to depend on the general public to protect our son and with the Jenny McCarthy followers (seriously, this is your Dr. Spock?), our son has a higher risk of being exposed to something that could be fatal for him. If his bloodwork looks good, maybe we can even start getting vaccinated. While its scary because its a risk, it would be a relief too.
Other than that, we are enjoying the cooler days (too hot\humid is on the no-no list because of the heart), yesterday we walked to the post office and ran a few errands rather than drive, which was great for me. Lots of time at the playground, baby pool, gardening. All with lots and lots of 100 SPF on for the two pasty white blonde kids we are :o)
