Baby Stig

Emma Lee developed plagiocephaly, also known as an asymmetrical distortion of the skull, after her shunt surgery when she was two days old. Once the pound and a half of excess cerebral-spinal fluid was no longer in her head, both her over-stretched skin and the plates of her skull overlapped in several places. She had several flat areas; particularly on the back side of her head. She also had significant towering around the occipital fontanel (the soft spot on top of the back of her head). This towering made the occipital fontanel much greater than normal – surpassing the size of the anterior fontanel that is typically larger. For most children, the occipital fontanel usually closes in two to three months; at 19 months, Emma's is still open. However, it has been shrinking in size thanks to her STARband treatment from STAR Cranial Center.

Emma was first referred to STAR by her neurosurgeon on March 24th of 2011. At her consultation appointment on April 8th, they took a three dimensional scan of her head using the STARscanner to see if she qualified for treatment. According to health insurance policy: unless the distortion in shape is at or above a certain level (and different carriers may have different levels), it would be deemed cosmetic and not covered. Thankfully, Emma qualified. Her number (which is calculated by taking the difference between the diagonals of her head from a bird's eye view) was about 1.75 times the level that insurance required. Given the costs of the three separate helmets she has required, we wouldn't have been able to afford the STARband treatment that Emma has received if it had not been covered by insurance.

 

Emma at two and a half months old before treatment.

Children must be at least three months old before they can begin this treatment. There is always hope that repositioning can eliminate and correct any issues with the shape of a child's head, but in Emma's case, it wasn't enough. So on May 10th, she was rescanned and the new information was sent off to have her first helmet made - all white - just like the Stig from Top Gear. Much to my surprise, the lady that was going to be her Cranial Remolding Specialist was a friend I went to school with growing up. We had lost touch, as it often happens, after leaving for college, but she was always so kind and had such a good heart that I knew Emma would be well cared for. On May 23rd, she went in for her initial fitting to begin treatment with her first helmet.

First pink elephant in the herd.

The challenge we were faced with, that most patients aren't concerned about during this treatment, would be to watch her shunt and make sure there was never any pressure put on it from the helmet. This required frequent removal of her helmet to look at her skin for pink and red marks resulting from the helmet impacting the shunt. Most children wear their helmets twenty-three hours a day without any need to remove it for spot checks. But due to the fact that Emma's shunt was so crucial to her health, it had to be monitored to make sure that the treatment never restricted the abilities of the shunt or compromised its integrity.

The first helmet was a bit of a challenge for everyone involved as her head was shifting so much that she was constantly having to come in for adjustments. There were a few times that red spots were found on her shunt, which caused us to discontinue use of the helmet until we could come in for adjustments (usually the next day). For almost five months, she had weekly adjustments to keep everything working properly. Even with all of the adjustments, and some ingenuity on behalf of her Cranial Remolding Specialist, the first helmet was not going to fit her long enough for her to complete the treatment. So, after a scan was submitted to insurance still showing that Emma qualified, she continued treatment in her second helmet beginning on September 15th. This helmet was white with pale blue and pink hearts on it. I decided to have something a little different (and more "girly"), because I wanted to be able to tell the difference between helmets when looking back on her pictures.



Reaching for her giraffe, trying to make new friends.

Once she got to the point that the second helmet was reaching its limits, STAR recommended a third helmet based on her special circumstances. Emma was close to being within the normal range, but due to her developmental challenges (not sitting on her own and struggling with head control), she would still be spending significant time laying down which could cause her to have new flat spots. After all the work we had put in to correct her head shape, I agreed with their recommendation and we submitted documentation to her neurosurgeon to approve her for a third helmet. At first, his response was that her head shape was close enough to normal that he didn't see the need for her to continue treatment. This would be the first time my skills as Emma's advocate would be tested. I simply asked the doctor why he didn't agree with STAR’s assessment since it made so much sense to me. He then stated that he didn't anticipate her getting much more correction from a third helmet, but inevitably agreed to approve the request. During the time it took to get the third helmet approved and processed through insurance, Emma outgrew her second helmet and was out of treatment for a few weeks. During those weeks, the scans showed her regression and the development of some new flat spots; assuring me that we were correct to push for the third helmet. Emma got her third helmet on January 30th of this year and it is solid purple. It lasted the longest of the three simply because her head wasn't growing as quickly as it was when she was younger. This also allowed us to keep her in it until September 20th so that she wouldn't develop any more flat spots this year.


First time in her ExerSaucer - not quite sure what to do.



After completing her treatment, it amazes me, looking back, how far she has come. When I see pictures of what she looked like right after surgery up until she began treatment at three months old, I can't help but be thankful that such technology exists and that we were lucky enough to be able to have it for Emma. Not only does her head look better, but more importantly, the treatment also made sure that the alignment of things inside her head developed correctly as well. At her final appointment, we received the best news about her head shape - it was within normal range. Then, at her 18 month check up with her pediatrician, her head size was finally about to hit the top of the normal growth curve. By the time she is two, she should be in the normal range on both size and shape for her head! Now that she is helmet-free, it is time for her to feel the wind in her beautiful hair!

Beads of Courage

Cupcake

For Emma's first birthday, I wanted to get her something special that she would have for the rest of her life. I didn't want something that she could wear and outgrow or even a stuffed animal that she would love until she outgrew that as well. I wanted something unique that would show her how proud of her I was, but also be special for her first birthday.

I had already decided on the theme of her birthday party - cupcake! I made several dozen cupcakes in normal and mini sizes for the guests. But the centerpiece was Emma's birthday cake - a massive cupcake that took over an hour to bake!

That cake could have fed more than twice the number of guests at her party.

 

The guest of honor in her ridiculous cupcake outfit that I couldn't resist.

 

She did not like the cake, but she was a good sport about trying it.

But even though I had her party all planned out, I still hadn't come up with that special gift. So I started looking through the Facebook page of Children's Medical Center for inspiration. And then I found just what I was looking for... Beads of Courage!

What are Beads of Courage?

Beads of Courage are ways for children to own their stories. Each bead that they have is related to a time that they had to summon up the courage to overcome a medical challenge they had to face. They are symbols of the stages in their lives that they faced and have been able to conquer.

Now I had a mission: to find a cupcake bead. I went to the Beads of Courage website and found they had an online gallery where you could purchase the beautiful beads. I began to look through the ornate, hand-made beads hoping that there was a cupcake out there. As luck would have it, there was one!!! It was listed at $15 with an option to have it turned into a pendant for an additional $6. I couldn't believe it!!! I had the perfect gift for my little cupcake.



Emma's first Bead of Courage.

This bead would represent the surgery she had when she was just two days old that saved her life. I ordered it on January 17th and couldn't wait to get it! Her birthday (February 7th) came and went with still no bead. I contacted them inquiring if they knew where the little cupcake was. In a crazy mix up, her bead accidentally shipped to the wrong address, but the recipient was kind enough to return it so it could be sent to me. After much anticipation, it arrived on March 15th. I didn't get to give it to her on her actual birthday, but I'm sure, in the years to come, she will enjoy the story of how her special bead had to travel great distances to get to her.

The next time Emma needs surgery for her shunt, she will be getting another bead from her Mama. I know it is not a matter of "if", but "when" she has to have another surgery because shunts have a extremely high failure rate - approximately 50% fail in two years. I am currently on the lookout for a blue elephant bead to buy and have on hand to give her after her next surgery. Her room is blue and full of elephants so I think that would be the next best bead for my little miracle.

What can you do?

The Beads of Courage is currently hosting their Inaugural National Bead Challenge Event on September 15th from 10am-4pm. There are eight participating studios in eight different cities. The company I work for has sponsored an hour of the event in honor of Emma. If you want to donate to the cause, you can find more information here.

I have not forgotten.

September 11, 2001

Eleven years ago today, I woke up in my college dorm room and began to get ready for class. Then, at 7:46 AM, the world stopped. Each year on this day, I remember that the freedom I have is not free and that others have fallen to ensure I can continue. I am grateful to those that have lost their lives and respect those that continue to fight. Now that I'm a parent, their efforts mean so much more to me.

Being the eternal optimist that I am, I tend to focus on the positive in most situations. Today, I focus on things that inspire me. A family member sent this story to me - it is a prime example of what I feel is important to think about today. This story is of a bald eagle that was injured by the hands of one person and healed by the hands of another. It is wonderful to see, on this day, the mascot of our country teaching us this important lesson: to rebuild, start by fixing things that others have broken, one piece at a time.

http://vimeo.com/15184546

Being a single Mom

In the beginning...

First, let me start by saying this wasn't my plan. I never thought I would ever get so close to what I always wanted, a family of my own, only to watch it fall apart before my very eyes. I got married on April 29, 2006 to the man I thought I would stand beside for the rest of my days. I fought infertility for almost three years before finding my first success with in vitro fertilization (IVF). I say "I fought", and not "we fought", because I felt truly alone in this battle. The man I married chastised me for worrying too much and for trying to go to a specialist to find out if anything was wrong.



Then, throughout my pregnancy with Emma, I was constantly trying to get my husband involved; telling him what was going on with Emma that week and what next milestone we had to look forward to next. I always thought I'd marry one of those guys that would caress my belly, feeling for the slightest movement from the miracle growing inside me. As it turned out, he never did - unless I asked him to. I even made him a PDF document with weekly updates of what was happening so he could read it on his iPad between the blogs that he followed. He never seemed to find the time; although he did manage to find time to keep up with his blogs. I was hurt that we weren't a priority, but I was afraid to speak up. I was always afraid to speak up to him - hard to believe for those that know me, I'm sure. But when we found out about Emma's medical condition he shut me out completely. He wouldn't openly talk to me about any of the risks Emma and I both faced, or about the fears that loomed over my every waking moment. The doctors painted a dire picture for Emma, and they pointed out that carrying her to term, if she made it that long, could jeopardize my chances to ever sustain another pregnancy - if I made it through it all. None of this concerned my husband.

When the going gets tough...

Then the unthinkable happened - he told me that he was thinking about leaving me. I figured it was just him struggling to accept what we had just learned about our daughter. For the next month and a half I walked on egg shells; trying to hold together the threads of a marriage that was unraveling before my eyes. I wanted to believe I was superglue and could hold together the family I thought I had. But to him, we were "not compatible." I couldn't understand how we could go from being compatible to being incompatible so suddenly.

On December 1st of 2010, he told me he wanted a divorce. My husband told me he was in love with someone else; someone younger who was already engaged to marry another man. He told me he wouldn't consider counseling, as he had tried to make our marriage work. I was shocked and amazed that I had found myself in a place of so little love and support, and worse, that I had been willing to accept it as though that was all I deserved.

He was right; we were not compatible, but looking back I don't think we ever really were. I loved my family, despite any of their faults, and wanted to share my life with them. He wasn't close to his, and made little effort to be until I began facilitating it. I wanted to travel and see the world. He didn't want to plan the trip, pack, fly, or leave the familiar behind - so I did all of it for him for the few trips we did take. I loved people and enjoyed spending time with friends. He said he didn't like people but admired my social skills, so I tried to help him make connections with others. I supported him when he went back to school full time, and in return I gained far less love and support than I gave. I was always trying to help him be happy and put my own happiness on the back burner - except when it came to having a child. I pushed to have kids, and he always told me he was on board. Now, I wonder if he wasn't ready.

The tough gets going...

It took me several months and some counseling to reach the point where I began to ask myself, "Why was I holding on so strongly to something that wasn't holding me back?" At one point, shortly after he told me he was leaving, he asked me why I wasn't yelling at him. He said he felt he deserved it and would understand if I did, but I simply said "I'm not mad, I'm disappointed. I shouldn't have to convince my husband to stay."

I was afraid of failure. Despite what he thought, I wasn't afraid of losing him or getting divorced. I was afraid of looking back and feeling I failed at something that I didn't try hard enough at. I was afraid of failing myself. He felt I was afraid of being a statistic, because most parents that go through what we went through don't come out on the other side smiling and happy to be together. If they remain together, it is a long hard road; mending things that were broken along the way. But both parents have to want to put in that effort. That's when I realized that I was the only one that would be willing to put that effort into our relationship. So I began to focus on my future relationship - the one that would be with me the rest of my life - the one that would mean more to me than any other - the relationship I would have with my daughter.

Christmas that year was hard, but luckily I have wonderful relatives that helped me focus on the baby that was constantly kicking me, as if to say, "I'm coming to see you just as soon as I'm strong enough." I had to focus on the great things to come, because I didn't have the luxury of grieving the loss of the family I thought I would have. I was on full bed rest with a high risk pregnancy, and to keep Emma safe I had to shelve my need to grieve until a later date. I did that for eight long and painful weeks. I was having painful contractions and dependent on my husband to come by and take care of my three dogs. I didn't want to see him, but I was afraid if I didn't allow him to help that he wouldn't stick around for our daughter. I didn't want to be the reason he wasn't there for her.

And this mom is tough and will keep going...

After Emma was born, I went to the NICU to see her every day from around eight or nine in the morning until five or six in the evening. I hated leaving her, but I still had three dogs at home that needed to be cared for as well. It was extremely rare for her father to spend time with her if I was there. He would see her only in the evenings for a couple hours on the nights he did visit. On occasion, he gave me a ride to the hospital on the weekend, but didn't even come up to see her. Once she came home, it was 5 days before he came to visit Emma. He came by for other reasons but wouldn't spend time with her. I even invited him to stay and care for her overnight. It wasn't until he had a lawyer for our divorce that he started visiting on a regular basis and took me up on the offer.

During the divorce, I kept trying to make sure Emma's father would be involved with her care by attending her doctors' appointments and therapy sessions. My lawyer told me I couldn't force him to be a responsible father or even a good one, and he was right - her father still makes little effort to attend appointments or therapies. All I could do was focus on making sure I was a responsible parent.

After almost seventeen months, my divorce finalized in court. Two months later, he signed the decree. I continue to focus my attention on Emma, but now I can live my life again as well. I won't allow myself to keep quiet because I want to be heard. I want to be loved and respected; admired and adored; supported and challenged. And this time, I won't settle.