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"

Nothing Else to Lose

Me, just one week before Lily's arrival.

Prenatal Diagnosis of Fetal Stroke

The next step in our journey involved a trip to Wilmington, North Carolina to see a specialist where we would get a more detailed sonogram and blood testing.  I had a bad feeling about this place from the moment I stepped in the door. First, they do not allow children in their office AT ALL. Then, there was soft, soothing music being played in the waiting room which was dimly lit and smelled of lavender and disinfectant. The two women already in the waiting room were obviously pregnant with multiples. I have never seen such huge baby bumps! Once you are called back, you get your own private nurse and your own private waiting room. And every room was equipped with a box of tissues as if crying fits would ensue at any moment. It was just creepy.

After seeing the sonogram technician we were whisked into our waiting room. And we could hear NOTHING! No footsteps down the hall, no quiet chatting in the next room, no flushing toilet, no overly soothing music, nada. It was unsettling because we were anxious to hear about Lily Pad. 

Finally, our nurse took us to a conference room in the very rear of the building. This should have given us a clue as to what we were about to hear, but it never registered with us until months later.  We were joined by a Genetics Counselor and Obstetrician, both whom we barely knew, and one of those boxes of sandpaper Kleenexes was unceremoniously placed in front of us. Another clue unregistered. What came out of their mouths next would haunt us for months to come.

They told us that Lily had several bleeds, strokes, in her brain and the sonogram revealed her brain ventricles were filled with blood. They did not know why this had happened or how to help her.  In addition, to the bleeding, Lily was also missing part of her brain, she had a cleft palate, and had a heart malformation.  It was theorized she had Dandy Walker Syndrome. In short, Lily would not live. On the slim chance she did live, she would probably be a vegetable. They suggested we have an abortion. Unfortunately, this would not be the last time abortion would be recommended to us. The doctors told us they could send us to another specialist to see if they could help us, but the Wilmington doctors could offer us no other assistance. They recommended The Children's Hospital of Philadelphia, Houston Children's Hospital, and Duke University.

My husband and I literally felt we had been hit by a Mack truck. I absolutely could not believe what I was hearing. This is the kind of thing you watch on Discovery Health or some other medical show.  Things like this did not happen to our family! What emotions were we experiencing at the time? Anger, frustration, disbelief, grief, sorrow, fear, desperation, depression, hopelessness.

Abortion: when faced with this option it actually seemed a feasible possibility given Lily's prognosis. Perhaps the greatest test of my Christianity came at this moment. Would God want me to carry a child to term only to watch it die anyway? Would God want Lily to suffer? Would God want me to suffer? Surely the Lord would condone such a heinous act as abortion when unavoidable suffering was involved? It seemed like the "right" thing to do and I was tempted.

Sweet Lily Pad is just a few weeks old.

But God loves us from the womb. We are fearfully and wonderfully made. And life begins the moment sperm and egg are joined. I knew this, have always known it and so I said no to abortion. Whatever suffering was ahead of our family, I had to let go and trust that it was indeed part of God's plan for Lily.

So, we asked to be referred to Duke University to see if their doctors could help us. But before leaving they sent us home with literature about the abortion option and a book to read to Lorelei and Lucas in the event Lily died. This was a completely sobering moment and it nauseated us to the core. We were then whisked out the back door of the medical office for fear our tears would upset those in the front waiting room. This is the only time I have ever been asked to leave by the back door of a doctor's office.

Bo and I said nothing the entire hour trip back to Jacksonville. Our friends and neighbors were waiting for us when we got home and we broke the news to them. They prayed for us and for Lily. After the prayer, Bo and I threw away the literature given to us by the doctors because we did not want to focus on man's prognosis for Lily, but God's. Even though it seemed absolutely hopeless, we held on to our faith and God's promises to give us a hope and a future. After all, we had nothing else to lose...

Divine Appointment

"The first time I saw your face..."

It started as Hydrocephalus

In the "Our Story" section of the blog, I sort of glazed over a lot of details about our prenatal visits and I would like to give an account of our experiences mainly because so many parents get such dire prognoses that it is hard to find hope in the middle of such bad news.  Many doctors have poor bedside manners and others take the time to explain difficult medical technology.  I just want others who are going through this to know they are not alone in their experiences so, I will be chronicling a few of the appointments and experiences.

It is by divine appointment that we found out about Lily's condition. I went to the doctor for a normal check-up at around 28 weeks of pregnancy and as I waited to see the doctor my friend (who is also the sonogram technician at my doctor's office) stopped in the waiting room to see how I was doing.  She asked if I had had my 3D sonogram yet and I told her no, that I thought it would be scheduled for much later on in the pregnancy.  She then checked her appointment calendar and discovered that she could do the 3D right then! So, I called my husband and he rushed over to the doctor's office with our two other children. 

Sweetest baby feet!

We all crowded around the monitor as my friend scanned pictures of Lily and pointed out her features.  We watched her suck her thumb and grab her feet.  Lorelei and Lucas were extremely excited to see their baby sister!  I did notice that during scans of the head that my friend took sometime to measure dark spots in the head area, but she never let on that anything was out of the ordinary.  In talking to her later, she said she saw the enlarged ventricles, but tried her absolute best not to become alarmed or attempt to scare us.  She was holding out hope that what she saw and measured was a mistake.  What incredible courage she had to treat the situation with dignity and professionalism!  She calmly printed pictures of the concerning areas and escorted us to the exam room so we could meet with the doctor.  The whole time she remained positive and did not cry, although she later expressed her desire to come into the room with us and hold my hand. 

In the exam room, our doctor explained that something concerning showed up on the scans and that he felt we should go see a specialist to get more information on the images.  He readily admitted that he did not have enough knowledge about enlarged ventricles to make a diagnosis, prognosis, and treatment plan.  He encouraged us not to worry and that we would find more answers at the specialist's office. 

Both of these medical professionals explained the situation with courtesy and concern, making sure not to worry us.  I felt they truly cared about our situation and encouraged us to call them if we had anymore questions.  My friend told me everything would be fine and that worrying would not be good for me or the baby.  She said many times poor image quality was often to blame for misdiagnosis. They both said they would be praying for good news and a continued healthy pregnancy. 

What is even more amazing to me about the whole experience is the divine intervention of it all.   If not for His intervention,  we might never have known anything was wrong and been unable to help her and prepare for her arrival.  Lily certainly would have had cerebral palsy if she had been delivered vaginally and if she had not been taken to the NICU shortly after birth she might have died. The Lord purposefully placed me in that doctor's office on the day my friend was working.  He skillfully arranged for her to conveniently walk past the waiting room, notice me, and sit down for a short conversation.  He slyly cleared her normally packed schedule to allow for the sonogram.  And He predestined my husband to be home from work on that very day.  The Lord had this planned for my life and knew what my husband and I would need to accept his will - a good friend and an excellent physician with Christ-centered, compassionate hearts.  What others see as coincidence, we see as divine appointment.

It Takes a Village

Splish splash in the tub!

Physical Therapy for a Child with Disabilites

This week, Lily has started wearing "Big Girl Shoes". And while her progress is slow, it is still so very exciting! There are so many things she can do now and her personality is blossoming.  She has quite a temper and doesn't mind letting you know when she is unhappy.  Not only will she tell you "no", but she will also tell you to "stop".  And her favorite people to boss around are her physical therapists.

Twice a week Lily has physical therapy.  Her therapist works with her at the day care facility she attends and in our home. This can be quite a scheduling mess as my husband and I try to fit in the activities of our other two children, church, work, doctor appointments, community responsibilities, and time for ourselves.  But our physical therapist is wonderful about working with us and accommodating our extremely hectic schedule.  And with this many visits, it is easy to see how Lily is able to easily recognize the face and voice of her therapist.  Sometimes Lily reacts to her with excitement and playfulness, while other times she reacts with anger and frustration.  Unfortunately, the physical therapist is used to these reactions from all her patients because she is tasked with the responsibility of forcing the children to do what is not natural or comfortable for them.  And Lily is no different.  Because of muscle weakness, Lily has an extremely hard time using her lower body and left hand.  She is easily tired and frustrated, often crying out in anger and pain.  But her physical therapist continues to push Lily and us.  She encourages us to continue to fight the weakness and the exhaustion and the frustration.  Lily not only needs her loving family in her corner, cheering her on, but she also needs the therapist, challenging her abilities.  The physical therapist has shown me the intricate, tender art of tough-love for the special needs child.

Lily playing with her Daddy!

In addition to a physical therapist, Miss Lily Pad also requires a developmental therapist.  While the physical therapist works on Lily's muscular movement, strength, and endurance, the developmental therapist works on Lily's developmental milestones such as verbal skills, fine motor skills, language recognition, and cognitive learning.  The developmental therapist visits us once a week.  Again, this is in addition to the physical therapist and other doctor appointments Lily requires.  This, of course, adds to our busy weekly agenda, but the developmental therapist is excellent about working with our family and remaining flexible in scheduling.  And Lily recognizes the face and voice of this therapist as well, however Lily does a lot less crying during these therapy sessions.  During this time, we get to focus on the therapeutic benefits of creative play.  My husband, myself, Lily, the therapist, and sometimes our other two children get in the floor together and just play, laugh, and be silly while teaching Lily Pad.  The developmental therapist has taught me that a special needs child needs LOTS of silliness and play.

In any given week, Lily may have from one to three doctor appointments.  There are weeks when we have none, which is nice because it used to be a weekly event.  She is currently being seen by an optometrist, a pediatrician, a neurologist, a dentist, and a physical therapy evaluator.  Recently, we have dropped the hematologist from the cast because Lily has not had another stroke.  All of these physicians work in concert to provide Lily with the attention and care she requires.  And it is comforting to have loving, knowledgeable, and understanding doctors looking out for Lily.  These physicians have taught me how individual professionals can harmonize with others to bring total care for the special needs child.

During the day, Lily attends a daycare that advocates for the special needs child.  Lily is still in the infant room at her daycare because she cannot walk and because of her other physical needs.  And the daycare providers have never pressured me into advancing Lily to an older class for which she was not yet prepared.  They have been more than accommodating in allowing the physical therapist and other supporting staff to visit Lily at the daycare.  The caretakers in Lily's class have also undergone training by the physical therapist in handling, teaching, supporting, and challenging Lily.   In addition, they have helped to alleviate some of the financial burden that comes with raising a special needs child by never charging us a higher fee for her specialized care and even giving us fee forgiveness when Lily was hospitalized and recovering from her shunt surgeries.  This group even raised money to help our family.  They love Lily and spoil her and treat her the way I would treat her.  These caretakers have taught me about mercy and kindness, both which are greatly needed by the special needs child.

I guess what I am mainly reflecting on this evening is how one child can bring together an array of individuals from various backgrounds, education levels, and talents.  Each individual has a detailed role in Lily's development while also playing an integral role in the team effort approach to her care.  Raising a special needs child not only requires loving parents but it also requires a village of professionals to nurture the growth of our sweet Lily Pad.