Shoes and such

Last night I took my littlest ray of sunshine shoe shopping, which is usually so much fun for me; trying all of the cutesy little shoes and sandals on a 22 month old who could care less about having anything on her feet turns into a game followed by lots of giggles. It is usually a simple process that takes 10 minutes tops on my own, and 15-20 if she is in-tow. This time was a little different. We had to find ordinary tennis shoes to fit over an AFO (ankle-foot-orthotic) for her left foot. Our fun little outing became a challenge with an ever growing stack of shoe boxes (pile of left shoes for Aisllyn to play with sitting next to it). 

I'm a little ahead of myself... 

Aisllyn Grace was born September 2012, and in a hurry! She is the youngest of 3 wonderful girls, who make my life complete. They are a blessing and have taught me so much about myself and about life. She came about a week and a half early, which was wonderful! Being 9 months pregnant toward the end of summer (that doesn't really end in South Carolina until November?) was close to misery. The delivery was perfectly normal except for the fact that a) I was hunched over a pillow, in the middle of receiving an epidural that never made its way past the dispenser, b) I delivered her laying the wrong way on the bed because adjusting position was not an option to Aisllyn!, and c) the nurse delivered her because the doctor was not making it back in time for the show. In a hurry... I'm sure I left out quite a few details, but looking back, it was quite a hilarious moment for us! From day one, Aisllyn has been THE BEST baby, and I'm not exaggerating, or partial. From the first unintentional smiles and giggles to lighting up the room for her sisters, daddy, or myself, she has been the happiest baby! Everything was wonderful, perfect, and all the positive things that come along with a newborn; you know, sleep deprivation, hours of pumping out any left-over milk so there was enough stashed in the deep freezer for my eventual return back to work, loads diapers and laundry... I enjoyed every moment of it!

3 1/2 months ago, in March 2014, we were shocked with results from an MRI that our little girl has a neuronal migration disorder. Basically, very early on in my pregnancy, when her neurons were migrating outward, forming her brain, they decided to take some abnormal path, leaving her brain with severe underdevelopment. The radiologist's write up described the underdevelopment using descriptive terms such as pachygyria and polymicrogyria, affecting the entire right side of her frontal and parietal lobes, and an area called the Sylvian fissure. It also affects a small portion of her left frontal lobe. Before filling in all the medical terminology (that can quickly and easily be obtained by a little googling) and diagnosis, I want to share the path we traveled getting to this point.

So, a little over a year before the diagnosis, when Aisllyn was almost 4 months old, I noticed that she wasn't grabbing and reaching with her left hand the way she was with her right. I addressed this concern with her pediatrician at her 4 month checkup. I was told that it was a premature concern because she was still so young; too young to tell if there was an issue. So we went along our way. 

Fast-forward a bit as we approached her 6 month checkup...

She was still not using her left hand with the same ferocity as her right that went after everything in sight! And she wasn't sitting up on her own. Both points I brought up to her pediatrician at the 6 month visit. Again, I was met with the response that it was still too early to tell, and 'look… she will use her left hand if you inhibit her from using her right'... in short: everything is ok, and sitting up by 6 months isn't a milestone that we should have been concerned about. The answers didn't feel right. I wasn't a new mom, and my older daughters had reached their milestones in most cases early... but as I was told, and from what I had read through my own research, every child develops differently. So we got another round of shots and life continued.

Aisllyn finally sat up on her own around 8 months. Very uncoordinated and wobbly, but she did it!! We were excited! But I continued to have a nagging in the back of my mind... when would she start crawling? A concern I brought up at her 9 month visit with her pediatrician, along with the left hand issue. Something wasn't right... I knew it, but was met again with: 'Maybe she is strongly right handed.' That should have been a red flag right there, even though the previous instances didn't set off massive fireworks and ringing bells... Hindsight… yea, we have heard that saying before, so I won't go into what it is... I knew and had known before Aisllyn that hand preference is not something that comes until later. At this age, she should be mostly ambidextrous. But it was like the 6 years between my middle daughter and Aisllyn's arrival had served me up a big helping of stupid when it came to raising an infant. Rather than bucking, we left (no shots at this visit!!). 

I called my mom to update her on this visit the way I had after each previous one, and we were both in agreement that it just didn't sound right. But I didn't know what to do. I was being told by someone I trust, a medical professional, that everything was ok. Was I really just being paranoid and worrisome? Over the next few months before the big 1, Thomas (my fiance, and Aisllyn's wonderful father) and I talked off and on about why she wasn't using her left hand. And we came to the realization, that in addition to keeping her left hand in a fist, she also kept her left toes curled up. Off and on over the next couple months, I had thought back to her grand entrance into the world. I recalled looking up at the nurse holding Aisllyn by her left arm and left leg, and wondered if that could have had anything to do with it... Once Thomas mentioned her foot, I brought up that instance of when she was born, and we both agreed, in a couple weeks at her 12 month checkup, we were going to bring this reemerging information to the doctor's attention.

We wanted answers, and we were not walking out of that office without standing our ground that something was wrong. Once again, we were met with the same type of generic response that meant that we had no reason for alarm; that is, until we brought Aisllyn's delivery to her attention, and how the nurse was holding her. I have played that moment over and over in my head because I didn't want to go falsely accusing someone of harming Aisllyn. And both Thomas and I agree, that is how she was held up right before all the other nurses came rushing in for the aftermath. This new information we provided (which I kick myself for not mentioning months earlier) gave her pediatrician pause, and she actually took a closer look at what we were talking about. Her suggestion? An assessment with physical therapy to see if they felt there was a need. And up to this point, we still had a baby that didn't crawl, couldn't pull to standing, let alone walk. She also recommended going ahead and getting us a referral to neurology as well. When the doctor suggested neurology, I knew for sure there was no way she knew what she was talking about. There was nothing wrong with Aisllyn neurologically. The only issues were physical, and I had set myself up to believe that certainly, this must have occurred during her birth. That was the only logical explanation. The first available pediatric neurology appointment available was May 2014; so we had an assessment with PT and she started going weekly in December, with a referral to occupational therapy, scheduled to start in January.

I am skipping plenty of details, but this post is long enough to read through, so I'm trying to keep it to the point of our experience leading up to her diagnosis. 

She attends occupational therapy and physical therapy once a week, and at one of the visits close to her 15 month checkup, I asked the physical therapist her honest opinion. In her experience, did she believe it to be physical nerve trauma (brachial nerve plexus injury) or possibly.... what I was slowly dreading... something neurological. I had been doing my own research on disuse of one side of the body, and kept running into more often than not, information about neurological disorders. There were only small bits of information that I could find about brachial plexus injuries yielding the same symptoms with Aisllyn's left hand, but did nothing to explain her left foot... The physical therapist said in her experience, typically, the underlying issue was neurological rather than physical… There it was, that puke feeling in the bottom of my stomach. She said what I didn't want to hear. She did add in that regardless of what the issue is, the treatment from a PT standpoint would be the same - the only difference was that neurological issues generally took a lot longer to improve than physical issues, if ever.

Armed with this information at Aisllyn’s 15 month visit, I inquired with her pediatrician about possibly moving neurology to a sooner date. I also called and put Aisllyn's name on a cancellation list with neurology in the event there was a cancellation that they could squeeze us into. Physical therapy was doing wonders for Aisllyn and for us. We had our homework, and continued therapy at home as well. Things were getting hectic at home because I decided in the fall of 2013 to go back to school and finish my 2 remaining classes so that I could apply for the Associates program for nursing at a local college. It felt like it had taken us forever to get to this point, but looking back, everything was moving entirely too fast. Her pediatrician made the request to move the neurology appointment up, but came back to us stating that she was going to go ahead and order any imaging they would need so that we at least had that out of the way, and hopefully we would be able to be seen sooner. 

The hardest day I had up to that point as a mother was the day Aisllyn was put to sleep for her MRI. Thankfully, I hadn't ever experienced any needs to have any of my girls put under anesthesia, so I didn’t know what to expect. We had the MRI on March 3, 2014. Aisllyn is highly allergic to eggs so she couldn't have propofol for the procedure. They typically use this medicine during the procedure so that once they stop the medicine, she would immediately wake up. Unfortunately, they had to give her something different that could take anywhere from 30 mins to 8 hours for her to wake up. We were ready for the long-haul for this. I am so thankful that Thomas and I had my mom and her husband by our sides going through this procedure. My mom is a nurse and was able to ask questions about the medications that I would have never thought to ask, as well, she eased our minds about the anesthesia from a medical standpoint. Between being fearful for our daughter, and having some distrust with medical professionals now, listening to the nurses tell me everything was ok was not comforting at that time. We did have a wonderful staff of nurses and a great doctor who oversaw the entire procedure, and for that I am thankful. After laying her down to start the procedure, I broke down. Emotionally, I was just not ok with seeing her lay there completely oblivious to our presence; but I kissed her and whispered in her ear how much I loved her. Thomas and I did not stay for the MRI. They had ordered 2 MRI’s – one of her cervical spine and one of her brain. I wanted to be by her side, but I’m pretty sure I would have cried the whole time. So we sat down with my parents and had lunch in the cafeteria and talked. The MRI went well, and she woke up from anesthesia about 2 hours or so after it was completed. And we waited.

I received a call from her pediatrician about a week after the MRI with the results. I was told in no specific order: her cervical spine MRI came back normal, but the MRI of her brain came back with some abnormalities. There was a little underdevelopment in the right side of her brain, there was some underdevelopment of the anterior section of her corpus callosum, there was a little evidence of some demyelination of her neurons that put her at an increased risk for epilepsy, and there was a 2 part cyst on the internal right side of her brain (to which she added, was likely nothing of major concern). I was also told that pediatric neurology wanted to meet with us sooner and we would have an appointment in the next week or so. I was in shock, to say the least. I called Thomas to relay the information I had just heard, but did not believe. Our next step? To wait just a couple more days to sit down with the neurologist. Over the next few days, we worried, but it wasn’t bad. The pediatrician told us it was just a little underdevelopment, so everything was going to be ok. Then we sat down with the neurologist.

We heard for the first time the word polymicrogyria (poly-: many, micro-: small, -gyria: the folds in the brain) affecting the entire right side of her brain, and a small portion of the left. We were told to expect developmental and cognitive delays, speech delays, cerebral palsy (which we were already dealing with), and because of the severity of the demyelination, epilepsy. She has also been diagnosed with microcephaly (micro-: small, -cephaly: pertaining to the head). He questioned us thoroughly on her speech development and if there were any concerns we had. Aisllyn didn’t consistently say anything except for dada and dog. I heard mama a lot, and she had several breakout words: sissy, thank you, and more that I can’t remember at the moment. I was never concerned because my second daughter refused to speak until she was closer to two and she hasn’t stopped since! J I just assumed Aisllyn was being stubborn and would talk when she decided. We were then questioned about seizures. He asked if we had ever seen anything that resembled a seizure, and we hadn’t. I knew quite a bit about the types of seizures because my oldest daughter had febrile seizures over the course of a few months when she had fever spikes with a nasty recurrent ear infection. It was a very emotional visit. We were given a very watered down version of the diagnosis from Aisllyn’s pediatrician, and were hit by a train of pretty severe abnormalities by the neurologist. There was no way the pictures we were looking at on the screen could possibly be Aisllyn. She was already so much better than the expectations he set for us; this was not the same child. Thomas and I left the neurologist with little information about where to go or what to do. We were told to research everything we could about epilepsy, and they wrote down the name polymicrogyria for us to look up and research.

My main purpose in this blog is to help raise awareness about neuronal migration disorders. Also through writing, I have always experienced such a release from daily stresses, and enjoy it so much. I am sure this will be therapeutic for me, but I also want to help others who hear these terms and don’t know where to turn. The internet is a wonderful resource once you get past the information that will send you running in fear to your nearest doctor or specialist, and can turn the most mentally stable person into a hypochondriac! That first moment I typed that term into a search bar on the internet and began reading… was a moment of pure terror. Line by line I read of severe mental retardation and epilepsy. Stories about children who could do nothing for themselves, nor communicate with the world around them. This WAS NOT Aisllyn. There wasn’t much information available. Between the MANY different websites I came across, I was reading the exact same information, with nothing that could tell me what to expect for Aisllyn. Her underdevelopment was nothing near the extent that I researched online. And her symptoms were nowhere near as pronounced as all of these other children and people who were diagnosed. I eventually ran across a book written by a father whose daughter was diagnosed with polymicrogyria. I will dig into that book in another post. His words gave me the affirmation I needed: Aisllyn was not the child described by this disorder, and I was going to do everything in my power to make sure that she thrives well beyond what the doctors told us to expect. She already is! Aisllyn has surprised every specialist we have spoken with. Her MRI is pretty hard to look at, and she has shown us every day that it should not be held as an indicator of who she is. She is so much more!

I have been wanting to do this once I struggled finding information on my own. What I am sharing is a mixture of information mainly that I have found on my own, but also information that some specialists have shared.

As I sat there trying so hard to shove her AFO into toddler shoes labeled ‘wide’ but just didn't quite allow the room needed to push that thing all the way into the shoe, I realized it was time to share our story. It has taken much time and FAITH for me to accept and move forward with Aisllyn’s diagnosis. The good news is, after about an hour of her crawling all over the floor and knocking over shoe-boxes while I tried shoe after shoe, brand after brand, size after size, I was able to settle on a cute black and hot pink pair of Nike’s with a Velcro strap and stretchy shoe strings. It wasn't the most perfect fit by any means, but it was doable, and not too difficult to get her into and out of. And while holding my hands, she could take steps comfortably. The downside? We had to purchase 2 pairs: a size 7 for her left foot to fit the AFO, and a size 4 for her right foot. She loves them! I do want to add that even though I fought tears the entire time, and tried my hardest to keep my head up with a smile as other mothers and their children passed by, ignoring the stares and looks of pity, I was able to walk out of the store with a genuine smile. There was a salesman that helped me come up with options as far as the shoe was concerned, and gave me information about stretching the shoe wider. He offered suggestions about going to a shoe repair store to see if there was anything they could do to help. He answered every question I had to the best of his ability. When I went to check out, he rang up the purchase and stated (very genuinely) that he hated that I was having to purchase 2 pairs of shoes just to get her into something that worked for her. In addition to the promotion the store was currently running, he took a little bit extra off the cost of the second pair, in an effort to extend help a bit more. I hadn't gone to anyone for help to score a better deal, and I certainly wasn't looking for a handout (I was already prepared to have to purchase 2 pairs of shoes). It wasn't in the money he took off the purchase that made me smile, it was the random act of kindness from one human to another. And I thank you sir for showing a complete stranger that you do care.

Until I have the ability to complete this page and add in links to the helpful websites I have come across, if you would like me to direct you to any information, please let me know!