Dear Stroke...

I wanted to take a moment and thank you. I know this is not the response you usually get, especially from a mom whose child you have so greatly affected. But you see, we now have a different view of life because of you.

Even though I thank you for changing our life outlook, I still hate you. My hate began the day you reeked havoc on little Lily Pad's brain, running rampant in her head, exploding and consuming her thoughts, motor skills, and language capacity. I am sure you thought yourself quite successful at blocking her CSF fluid with a myriad of blood clots and enlarging her brain ventricles. What a big pat on the back you must have given yourself as the doctors told us she would never live or, if she did, she would not have much quality of life.

Perhaps you chuckled at her two shunt surgeries as she endured having her head shaved each time, her scalp opened up, and a tube placed inside her brain. And that curve ball of a shunt infection? That was quite the cheap shot on your part. My hate truly reached a high point then as I watched her lay motionless in a bed for two weeks with a tube running out of her head. That tube deposited her brain fluid into a bag at her bedside. Did you know that, Stroke? I truly thought she would die then. I've never seen her that close to death and it was awful. So awful I had a mental breakdown in the waiting room.


In the months that followed, my hate grew as I watched her struggle to hold her head up, push herself up with her arms, and roll over. And it took Lily until she was 14 months old to crawl. TO CRAWL! At an age when most children are climbing on the furniture, my child could just barely maneuver. And that battle was not easily won either. Her father and I had listen to her scream and cry and fight with the physical therapists and us. But she beat you then and her fight was not over!

And while we celebrated Lily Pad's second birthday with cake and balloons and friends, my hate boiled. She still could not walk on her second birthday. But everyday we got up and we helped her fight you with developmental therapy and AFOs and physical therapy and kinesio tape and stretches and workouts. It took five therapy sessions a week for nine months, but she won and you lost. What was considered a victory for Stroke would soon become a triumph for Lily Pad when she walked just one short month after that birthday party.

Do you remember all that brain matter you consumed? It has grown back and flourished and rewired itself, healed itself, and dissolved your blood clots. All the destruction has been undone. Her ventricles are normal and her shunt works great. She walks. She talks. She dances. She runs. She loves. She won.

I realize I started saying thank you Stroke and much of my letter to you has been rather negative, but of all the things you have done to us, the most influential impact is how we see life. Because of you I KNOW that my God performs miracles. Each day Lily Pad wakes up is a blessing and I cherish each moment I have with her. The milestones that most moms get to celebrate with their children are extra valuable to us because ours are hard-fought and hard-won, after months of therapy and determination.

Sure, you still affect us. Lily Pad could start having seizures at any time with no warning. She may always be limited in her motor skills. She may be learning disabled. And, God forbid, she may have more of you, Stroke, in her future. We are promised nothing, but this lack of certainty has only made us more humble and appreciative of the little victories.

And we are not worried about the obstacles we still face or the ones we have yet to encounter because as history has proven, Stroke, you will NOT be victorious. Lily Pad will beat you every time and we will NOT give up!

Tape and Shoes and Rings, Oh My!

Holes worn into her right shoe from dragging her foot.

It's time for new leg braces for sweet Lily Pad!! We are so excited for her to be moving a little bit forward by having one of her calf-length AFOs reduced to ankle length. Her left leg and foot is doing so much better and finally getting a good heel strike with the foot. Her knee on the left leg is also positioned nice and straight. Now we get to work on perfecting her movements in that leg. And from the looks of her old shoes, she has really been dragging her more tensed, and weaker, right leg and foot. Just look at the hole she has worn into the outer toe area of the right shoe! Looks like an excuse to go shopping! :)

Sweet Lily Pad, full mischief!

Her right leg and foot are requiring a bit more coaxing. Our physical therapists are now using a technique called Pediatric Kineso Taping. Instead of using bulky and uncomfortable derotation straps to force proper right leg rotation, a special kind of tape is used. This tape, which is super stretchy and sticky, is more commonly used by athletes to prevent and treat injuries. I had no idea it could be used on Lily Pad. And the great thing about the tape is it stays on for 3 to 4 days at a time, stretching and moving her hip joint and tendons even while she sleeps. We have seen such a change in her right leg just in the month we have used this technique! Instead of her knee pointing almost directly at her left knee, it points straight ahead, which in turn causes a more parallel foot placement when she walks. Of course, this does not help her lack of heel strike on the right foot, but at least her leg is straight now. After the tape remains off for a day or so, her leg immediately starts to rotate in again. But this will slowly change over time as we continue using the Kineso tape.

Another new technique the physical therapist is trying is the use of electrodes on the right calf muscle to help strengthen that muscle and stimulate muscle contractions. Lily is NOT fond of this new technique! I don't think it hurts her in any way, but I do think it bugs her. But I can't say I blame her. I am pretty sure it would bug me too. So the electrodes, along with the Kineso tape, will be used in combination with the calf-length AFO to help strengthen her lower leg muscles, encourage a heel strike on the right foot, and promote flexibility in the right hip.

Ankle length AFOs 

The physical therapist is allowing us to use a borrowed set of ankle length AFOs until hers are finished. Lily Pad seems to like these new ones because the minute she gets them on she runs around the house. Silly girl! And with her new mobility comes new mischief...

It seems as though Lily Pad has become quite the typical two year old by getting into my wedding rings and then promptly practicing her new trick of throwing things away. Yep. Lily threw my wedding rings away and they were long gone before my husband and I realized it. It is mostly my fault because I have a hard time remembering that she can now get into EVERYTHING no matter how high I place something or how far out of her reach. Her problem-solving techniques are very well developed I must say and therefore no amount of precaution on my part deters her.

My mother's wedding band now has a second life.

But all is not lost! Since we obviously can't afford new wedding rings, I have now given my mother's old wedding ring a new life. It is very special and sentimental that I have both her's and my dad's wedding rings and now I get to wear hers as my own. Thank you mom!




And in response to my previous post on February 2, 2013,  my husband has yet to hear back about the job in Connecticut. But in the mean time, he has sent out ten more resumes. And so the waiting continues....

Get Reactive and Proactive!

FREE AFOs for Infant Stroke Survivor!

We have good news! Lily will get a new set of leg braces for FREE! How? Because I got reactive and angry and sent a complaint letter to the owner of the company. The brace and limb company that failed to give Lily the prescribed AFOs responded almost immediately to my letter of complaint. I mailed the letter last Monday and they were calling our physical therapist and us by Tuesday. The owner was extremely apologetic for the lack of attention given to our daughter and her needs. The owner wanted to make the situation right and scheduled Lily to be refitted the very next day! Her father took her to the appointment and Lily was casted and measured thoroughly. She will get a new set of articulating braces with derotation straps. Unfortunately we have to wait for another three weeks for them to be delivered, but it will be worth it. Lily will finally get what she needs.

There are a couple of lessons I learned through this experience with the help of a dear friend who also has a child with special needs. When my friend read my last blog post, she became concerned and gave me a call. Her call was exactly what the Lord knew I needed. It can be lonely being the parent of a child with special needs. Finding someone within your own community who is dealing with similar issues is rare, but fortunately God has placed someone in my life who “gets it”.

We discussed the quality of care my daughter receives through a free government program as well as the difference between such programs and privately contracted services. Currently Lily receives physical therapy through a government early-intervention service provided within our county of residence. Because of government regulations, the physical therapist is only allowed to work with Lily a certain number of hours within a week. And Lily does not qualify for occupation therapy under this agency’s regulations because of her age. In addition, I learned through my conversation with my friend that at the age of three, the early-intervention program is “done” with Lily. She will then transition to the school setting and will attend pre-school through the same agency. However, she will only get physical therapy if Lily qualifies for speech therapy. As I have already discussed in previous posts, Lily certainly has no trouble with verbal communication, so I doubt she will qualify. So what happens to Lily after the age of three? This will be our family’s responsibility.

My friend advised me to get Lily an evaluation by a private therapy provider. The private provider will give Lily the physical therapy and occupational therapy she NEEDS and not what she qualifies for under strict government regulations. It is also important that our family begin a long-term relationship with these therapists as it is likely she will need their help for years to come. While the government services are free, which is a plus, they are extremely limited and only temporary. Lily needs something consistent, proactive, complete, and enduring.

Our family is preparing for the additional cost of private therapy as it will be a financial commitment. We do have medical insurance, but there will be co-pays of around $60. While that might not sound like a lot to some, it is an additional monthly medical expense. However, we are certain our money will be well invested.

I am extremely grateful for my friend who is guiding me through this process of being a parent to a child with special needs. I am always surprised at how much I do not know about the ins and outs of therapy, insurance, and referrals. Everything is complicated, but I do know that Lily has no greater advocate and fan than her mother!

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.