It Ain't Right!

The prescribed AFOs were not given and these ain't right!

It has been a loooong time since my last blog post and I greatly apologize. From the last time I posted up until about a week ago we have waited for Lily’s AFOs. And she has not walked, has had no desire to walk, until about a week ago. J But the minute we put the AFOs on her, she stood up and attempted walking. What a change in her we have seen! She seems to be getting the hang of this walking thing, but our experience with the brace and limb company have tested my patience and Christian attitude.

I am MAD because my AFOs just ain't right!

My husband and I recently used a local brace and limb company for Lily’s AFOs. The company came highly recommended by our physical therapist. She not only specifically requested we use a specific orthotist, but also prepared us for a custom fitting appointment in which our daughter would have to be casted and measured for her lower leg braces.

When we arrived at the office, the orthotist welcomed us and began to measure Lily’s foot. As he measured, we talked about the prescription physical therapist had sent over. I became concerned because he did not mention the “hinged AFO” phrase or the de-rotation straps my husband and I had discussed with the physical therapist. I immediately tried to call our PT to get clarification. While I waited for the physical therapist to call me back, I was bothered that the orthotist did not make a cast of Lily’s legs and feet nor did he measure her leg length as the PT had said. In fact, the whole office visit took about 5 minutes. The orthotist gave us little details about how the AFOs would look or function.  I wondered how he could give our daughter Lily custom fit and function AFOs with only a foot measurement. However, I did not question him as I considered him the professional. In the meantime, the PT called the orthotist directly and discussed with him that Lily’s braces were to have hinges, be custom fit for her, and include de-rotation adaptation.

Three weeks after Lily’s fitting, her AFOs were finally ready. When I reviewed them, they did not have hinges, de-rotation strap capabilities, and were not custom fit for her. The AFOs were much too long for her feet, missing a top Velcro strap, and ill-fitting around her ankles. My husband was told by the orthotist that the strap was left off so that the unhinged AFO would allow for a motion similar to what the hinged version would have provided. Upset, I called our PT and requested she review the AFOs the next day.

Upon assessment, the PT and myself felt that the orthotist had done a very poor job of meeting the needs of our daughter Lily. Instead of what was written on the prescription and discussed with the PT, Lily received “stock” AFOs that could have been ordered online by my husband and I. While I am certain the orthotist is a consummate professional, he failed to give our family the time and effort because of the age of our child, our inexperience, and the underestimated intelligence of our physical therapist to know the difference between custom-fit AFOs and “stock” AFOs.

Unfortunately, we are forced to use the AFOs because our insurance will not pay for another set of AFOs so soon after the delivery of the current ones. Overall, our experience with this orthotist and company has been unsatisfactory. This is disappointing as I am certain Lily will continue to need AFOs and we will eventually have to get the current ones replaced with ones that follow the therapists orders and prescription.

This situation is upsetting mostly because I feel like we had the wool pulled over our eyes. And the AFOs we have received are ok for the job, but they lack the capabilities the prescribed ones could have provided. Because our insurance won’t pay for a replacement so soon and because of how expensive they are, Lily will have to use these for now and she seems to be adapting well. Unfortunately we cannot fix her in-toeing problem right now because her AFOs do not have the de-rotation strap capability. Instead, we will have to use a special tape used by athletes and have to wait until the weather cools down a great deal as the tape is sticky and painful in the late summer heat.

Who would have thought that a company whose purpose is to help the disabled would take advantage of such a tiny patient needing their help? Today’s lesson parents: If your gut says it ain’t right, IT AIN’T RIGHT!

A New Hope: Hinged AFOs

I know it has been awhile since our last post, but it is summer time and we have been on vacation! Myself and my kids Lorelei, Lucas, and Lily went to Birmingham, Alabama to visit family. We had a wonderful time celebrating my mother’s birthday and my sister’s birthday on July 4^th and 5^th. The kids took a trip to Desoto Caverns, Zimora Park swimming pool, The Summit shopping center, and Vulcan State Park with their grandparents. We all came back tired, suntanned, supplied for school, and filled with the love of family!

After two weeks off, Lily had lots of physical therapy to make up. So we have been doing two to three therapy sessions a week since the second week of July.  The PT has been working on her heal-toe technique with the left foot and stretching her interior leg muscles to improve her hip turn-out. The muscles on the top her legs are not strong or coordinated enough to lift her toes. As a result, she drags her left foot and toes. To compensate for this weakness, she lifts her legs at the hips by rotating them inward. This improper rotation and lifting is hindering her ability to walk correctly.

Butterfly kisses from Daddy.

After three months of working on these issues and providing opportunities for her to walk and stand, we have seen no improvement in her strength and coordination. Lily has plateaued in her motor skills development before, but never for such an extended period of time. So, this week the PT and I decided it was time for Lily to get hinged leg braces and hip derotation straps.  I am so ready for Lily to walk, and ideally I would like to see her do this on her own without any assistive devices, but I am willing to do what it takes to get her walking.

While she seems to have stopped improving in motor skills, her language skills continue to spring forward. I know I have said this several times before, but she really does repeat everything we say! Her newest words are cracker, cup, brother, sister, banana, and all gone.  And she even does hand motions with her words and pretends to brush her teeth, rock a baby doll, and answer a telephone. Lily has completely caught up with her age group in areas of cognition and language development. What a wonderful blessing!!

As I was telling friends and family about Lily Pad’s upcoming braces and straps, I had an individual say to me, “So does this mean you are giving up on Lily being able to walk?” Absolutely not!!! The braces and straps are designed to build Lily’s walking muscles, not as replacements for the skill.  This person’s question shows me that change and situation is all about perspective. If you perceive something as negative, it will be. But I see Lily’s new devices as an opportunity to give her the confidence to take her first steps. God is providing us with the resources to help Lily and he is blessing me with a positive outlook and a new hope.

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...