July 1, 2015 by kruckr
This is the first post I’ve made in quite sometime. I think the fact that Henry started sleeping through the night (meaning I get to sleep through the night) means that I’m no longer awake during the wee hours of the morning with nothing to focus on but the thoughts rolling around inside my head. Originally, this blog was meant to be both a digital baby book for Henry and a resource for other parents who may be struggling with some of the same issues we face. I know that I will have to find time to write in order to achieve that goal.
Today, my inspiration for writing is the fact that it is Henry’s 2nd birthday! This time last year, Henry actually had his 1-year well baby appointment as well as an appointment with Dr. Persyck, his geneticist. I look back through pictures from last year and remember his chubby little face and the fact that I could still rock him in my arms. Now, he’s grown so much longer, he actually has a neck and when I hold him close, his arms and legs go well past the width of my body.
1 year old butter ball
This past year was also far less dramatic than the year before. I believe we’ve only had at most two hospitalizations in the past 12 months, and none so far in 2015. We did visit the ER once in January, but we were never admitted. Since then, his seizures have slowed down to the point where he’s gone up to 10 weeks without having one. My theory is that his seizures are mostly triggered by growth spurts. This explains why they were so frequent when he was a younger baby and why they are slowing down now.
From the cleft world, we recently met with his plastic surgeon and he does not think Henry needs any additional lip surgeries for the time being. We will continue to follow up with dental and will most likely be looking at maxillofacial surgery at some point. He has made huge leaps with speech therapy. This year he went from only taking a bottle to being able to hold his bottle, to now only using (and holding) a soft-spout sippy cup. This was a big win, because he gets most of his nutrition from smoothies and they need to be on the thicker side to keep him full. He’s also started chewing soft solid food and putting food in his mouth with assistance. This year, he also finally got to have his first birthday cake. It seemed like we stalled in the speech therapy world for so long, so these achievements are a big win!
I think he’s a cake fan!
Additionally, he’s made improvements with physical and occupational therapies. He can sit up on his own now for short periods of time and he’s gotten better at grasping, grabbing and changing things from one hand to another. Right now he’s still motivated to put everything in his mouth, so in the next year we will encourage him to explore the world a little more. During a recent trip to the beach he seemed to really enjoy playing in the sand so we’re going to purchase a sandbox with his birthday money. Also, he seemed to enjoy outdoor swings at the park in Minnesota, so we’re thinking of buying a toddler swing and hanging it from the tree in the back yard.
Hey! Look what I can do!
Overall, I feel more in sync with myself and with him. Year one was full of scary moments and uncertainty and while no one’s future is guaranteed, I’m so happy with the progress Henry has made and the person he is. I can’t wait to continue to watch him grow and learn. He has taught me how to be a better person and no matter what obstacles we face, I’m so grateful to God everyday he allows me to be on this earth with him.
Love my family!
P.S. Dan and I feel we are ready to begin adding to the Kruck clan so we ask for prayers for a new baby brother or sister for Henry in the near future:)