Walking Up that Hill: A Baby with Hemiplegia and Hydrocephalus after In-utero Stroke Tackles Walking

20 Months Old June 19, 2012

Today, Lily turns 20 months old! And she is doing so many wonderful things! She can say many new words such as "that's daddy," "all gone," "good girl," and "cup." She truly is a miracle and her ability to finally communicate with us and tell us what she wants is refreshing. We continue to work with her on her language development and especially her fine and gross motor skills. Walking is still a challenge, but she is oh so close...

I can stand with my push walker!

Instead of fighting us when we encourage her to walk, Lily is now taking off on her own! She grabs her dinosaur-shaped push walker and does laps around the kitchen and living room. She is able to pull herself to a standing position and take off. And some of the issues she was having before now seem to be resolving themselves. For example, Lily's left foot, which is on her hemiplegia side, turned in quite a bit when we began walking exercises. The Physical Therapist was quite concerned and the Developmental Therapist recommended a brace for the left foot. The PT did not want to add a brace because the brace limits the ankle's ability to flex and extend. And since our goal was to get her walking, the PT said the brace may cause more problems by limiting her range of motion in the that foot and ankle. But as Lily continues to use the push walker, her left foot has slowly turned straight. It no longer turns in when she walks. I did bring this to the attention of the PT and they said that often times the foot will turn in on the hemiplegia side in an effort to compensate for the weakness. Now, as her left side becomes stronger, she will not over compensate by turning her foot inward.

Nothing can stop me now!

How wonderfully amazing is the brain of child! When no pathway exists, the brain creates new ones, repairs damage, and changes to overcome obstacles.  Sometimes I am reminded of how much work we still have to do.

Doing laps in the house.

Another concern we have is Lily's size. She is incredibly small for her age. At her 18 month check-up, she only weighed 20 pounds. Her weight is not even registering on the standard growth chart; it is below it, off of the growth curves. In fact, Lily had lost weight since her 15 month appointment! As well, her height is only on the 10th percentile curve. Her head size is stable at the 20th percentile curve. These numbers were quite concerning for our pediatrician and he asked if she ate well. Lily Pad eats everything in sight! She loves to eat so this is not her problem. I did talk to other parents of children with stroke, hydrocephalus, and hemiplegia who all confirmed that their children were tiny as well. One  parent reminded me that, unlike a normal child's brain, our children's brains have suffered a good bit of damage where tissue was destroyed, blood flow compromised, and CSF restricted. Not only will these present developmental and cognitive delays, but also delays regarding glands in the brain. The pituitary gland, located in the brain, is responsible for growth and therefore may not function as well because of damage.

Also, it takes Lily and other hemiplegic children twice the effort to do normal motor functions as it would take a child with no muscular or sensory problems. Lily will burn twice the calories reaching for a toy, pulling to a standing position, cruising the furniture, walking while holding hands, and crawling on the floor. It will also take her twice as long to accomplish these tasks which in turn burns more calories. It is no wonder she eats often and a lot. She burns the calories as quickly as she can consume them.

I am a happy baby!

One afternoon I was watching Lily play. She was playing with her baby swing, pulling up on it and trying to connect the buckles in the seat. She lifted her left foot and put it on the ground while the right knee reminded on the ground. Lily tried to push up with her left foot and knee to a standing position. Sweetest little Lily Pad tried so hard to push up with her left side and could not do it. She struggled with it for a few minutes before finally giving up and switched to her right foot. It very much hurt my heart to see her struggle and to see how weak that side is. We still have lots of work to do, but Lily is trying to use her hemiplegia side and that is a huge improvement!