The Eye: Gateway to the Brain

Last week I took Lily Pad to the eye doctor to check on a persistent problem she has had since birth. As a result of the strokes, Lily’s eyes lack muscle control. Both eyes turn in and out periodically when she is tired or when she is looking at objects from the point of view of an odd angle. In addition, her eyes turn in and out when they focus for an extended period of time however the problem is more prevalent on her left hemiplegia side. To correct the problem, the doctor prescribed a patch for the right eye in order to strengthen the muscles on the left. But patching the eye of an infant is not easy or extremely successful.

Lily learned very quickly how to remove the patch. So, we switched to adhesive patches, but these eventually caused irritation to the skin around the eye. Finally, we found the perfect combination! By patching her eye during mealtimes, we were able to redirect her focus on eating rather than the annoyance of wearing the patch. Using this technique we were able to fit in the hours of needed patch time.

And Lily’s eyes have made huge improvements due mostly to her physical therapy. As the physical therapist focuses on the left side, Lily’s eyes slowly begin to improve. The more strength and coordination she gains on the left side, the more strength and coordination she gains with the left eye. I was not expecting these results, but this does make quite a bit of sense. As she uses her hemiplegia side, she slowly builds hand/eye coordination, which in turn benefits the eye muscles.

Lily’s eye doctor has been seeing her every three months since her birth to monitor the progress or regression of the eye muscles. The eyes, I have learned, are the gateway to the brain. If there is a problem within the brain, the first area to be affected will be the eye. Also, the doctor is able to see if there has been any damage to the optic nerve because of pressure or bleeding. Lily’s optometrist has not observed any damage, which is excellent news! It indicates that the shunt is working properly and that the strokes have not decreased the size and function of the optic nerve.

The eye doctor is so impressed by Lily’s eye function that we are now released from patches and three-month optometrist’s visits. We are now on the every six-month plan!!! Yay! Not only does this reduce our doctor’s visits, but it also shows how far sweetest Lily Pad has come and the bounty of God's blessing in her life.

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!

Lily Pad's Place: Research & News

Lily Pad's Place: Research & News

Pediatric Stroke Awareness Montage 2012

Children's Hemiplegia and Stroke: Faces of Hope

My baby daughter Lily had a stroke in utero. She has partial hemiplegia on the left side, hydrocephalus, and a shunt because of her stroke. She is a living miracle of God's grace! Educate your self and others on childhood stroke and read Lily's story of hope.

Sweetest baby Lily, nicknamed "Lily Pad"