11 months


June 1, 2014 by kruckr


I can’t believe my baby boy is almost a year old. Nor can I believe how quickly this year has passed. I think time measurement somehow changes when you become a parent.  Seconds, minutes and hours are replaced by diaper changes, feedings and naps. Henry has grown so much this year. He’s now about 26 inches long and 21 pounds. He’s smiling,  babbling and rolling on his side. He’s also sitting supoorted. Still working on rolling to his tummy, grasping toys and unsupported sitting. He’s has stopped wanting the spoon, so we’re back to nursing and formula for now.

This has been one of the scarier months so far. Not quite as scary as the heart surgery, but pretty close.

Henry began to have apneic seizures again. These occur shortly after he’s fallen asleep. He’ll open his eyes, stare and stop breathing fit 30-90 seconds. Sometimes he’ll move around a little, but there’s no shaking like with more common seizures.


After two ambulance rides, two EEGs and an MRI, we’ve determined that his seizures are caused by an abnormal frontal lobe. This is the area of the brain that controls more complex thinking and decision making. His cerebellum and most other areas are normal. The cerebellum controls motor function so there is hope that he’ll walk one day. The doctors wanted us to know that because of his abnormalities, he’ll need care the rest of his life. While it’s easy to get discouraged by that news I’m kind of like … a) we already knew that and b) what do you know?

Both Dan and I have accepted that Henry is following his own growth and development track. I don’t get upset when strangers ask me if he’s walking yet. Nor do I feel the need to educate them on his conditon unless they ask. At the end of the day, like any parent, we just want him to be happy and healthy.

On another note, Henry is officially moved into his room. His doctor ordered him an apnea monitor to wear at night. That and the video monitor basically eliminate the need for him to sleep right next to me. He even had a few nights where he slept all the way through the night. That, unfortunately, didn’t last too long:/

Henry has become a pool junkie this month … just in time for summer break. He really seems to enjoy being in the water.He still kind of fusses in the beginning,  but once he’s half submerged he gets really smily and peaceful. We ordered him an inflatable neck collar.  It’s kind of strange looking, but I watched a video a few months back of an older boy with cereal palsy using one. He was finally able to move his arms and legs freely and he looked so happy.  We’ll see what Henry thinks.


We’re looking forward to his first birthday party. I decided to abandon ship with the sail boats and instead am going all aboard with a pirate theme (insert eye roll here). Will post pics soon!


5 thoughts on “11 months

  1. Stephen says:

    What a beautiful child and, clearly, loving and attentive parents. I especially enjoyed the comment about how the only thing that matters is your child being happy… Thank you for sharing this story. Other parents with such children can relate, maybe it even helps them in the way it touches them, but typical families and individuals benefit too as they gain insight into the many ways different families out there live and love. Anything shared that touches our hearts, whether up close or through words, is a beautiful addition to our journey.

  2. jrkinley says:

    He looks so happy in the water. I hope he likes the neck bubble thing for the pool, so he can move his arms and legs. Is that a tooth I see in the picture???

  3. Genevieve says:

    Zoe (my 7yo daughter with 1p36) has a neck ring float and LOVES it. It gives her complete freedom in the water- she is always trying to swim away from us! I am very sorry to hear about the seizures. Zoe continues to struggle with seizures and we have been to the emergency room with prolonged seizures many times now. One advantage to our kids being so unique is that staff tend to remember our children which makes the next time a little easier. Hopefully you will have a next time any time soon. Carter looks fantastic- very happy and healthy looking. Happy Birthday!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: