Incredible Organization - I Run 4

After previously checking out I Run 4, I decided tonight to sign Aisllyn up. This organization partners a runner with a person, adult or child, with special needs or medical issues that prevent them from being able to run for themselves. It is an incredible way to share encouragement, motivation, and awareness - for both the runner (who is dedicating their runs and workouts to someone special), and for the honorary runner who can't run for themselves.

I want to do everything I can do spread awareness of these neuronal migration disorders, and in part, for those with special needs like my youngest daughter, Aisllyn. 

I am so excited to begin a new part in my journey of spreading awareness! I cannot wait for Aisllyn to get her match. There are so many good people in this world, and I am so thankful to watch doors open to connect with those people. 

There is so much negativity in the world around us, and I want to center my family around the positive in life.

Imperfectly Perfect

It has been a whirlwind of craziness these past couple of weeks. I had hoped to make time earlier on to put up another post, but between starting nursing school and home, time has been extremely limited. 

In between those long days and short nights that we call life, I have been pondering on where we are now with Aisllyn in comparison to where we started. It was only in mid-March of this year that we learned her diagnosis, but those days, weeks, and months have felt like an eternity. I struggle daily. And sometimes hard. With my faith, with my emotions, with questioning my abilities and choices I make for myself and my children. Mostly right now, with my faith. 

I never in a million years would have believed that our amazing littlest bit would be given a hand that is so unfair. Yes, she is making progress by leaps and bounds compared to where we were at before starting her therapies. But even with the strides Aisllyn is making, I catch myself feeling like she should be doing more. Or, more often, that I should be doing more for her.

I am angry with God for giving Aisllyn such a tough hand in life, for giving me the responsibility to care for a child that needs more than I feel like I can ever give her in a day, let alone the rest of her life. I struggle to understand why any child, any person, why MY child has to deal with such a crappy disability. Or any disability for that matter. And then I feel selfish, because there are many more children out there whose parents would love to have these little steps because their child is fighting for their life, or just not progressing as well as Aisllyn is. It is such a double edged sword!! 

But then I look at her... 

Today, we celebrated a HUGE accomplishment! My oldest daughter came into the kitchen around lunch and said she was hungry. Aisllyn came crawling right behind her around the corner. I got Taylor started on making her lunch, and Aisllyn started oohing and squeaking the way she does when she wants attention. I looked down at her and she took her paci out of her mouth and put her fingers into her mouth and smiled. I asked her if she was hungry, did she want something to eat. And she started bouncing up and down, putting her fingers into her mouth, laughing and squealing the way she does when she is excited about something! She told me exactly what she wanted!!! 

Last night, I laid on the floor, Thomas sat in the recliner, and Aisllyn made a game out of pulling up to standing in front of Thomas with her little bunny rabbit purse on her arm. She then cruised a few inches closer in my direction and held a hand out for me to hold so she could walk to me. After she made it back to me, she turned around (after kissing me on the mouth and waving bye bye) to make her way back to the recliner and start over again. I flashed back to Taylor and Hannah at around 2 years old, running into the room to grab their purse and sling it onto their arm, ready to run out again to go 'shopping' or whatever they made up that day, but not before a kiss and a wave. Aisllyn is right on track cognitively for the play that children do at this age, albeit slightly hindered from her inability to walk alone right now. And my heart broke again! Because she is right there, but just not quite able to make it over that hump yet. 

Tonight, as I rocked her to sleep, she sang and sang and sang her heart out. I sang with her, but I mostly listened to her la la la's and da da's that were so precious. She sang herself to sleep. And looking at her resting, so peaceful and content for the most part with her life and abilities, I saw nothing but perfection. She is imperfectly perfect. Just as we all are; made in God's likeness. 

I don't know why our family was chosen to shoulder this task. It's not a burden by any means; hard... well, yes. But life isn't easy, I suppose. And moments like we have had the past couple of days keep my faith going and give me hope that we are doing right by her. I pray for the strength to grow my faith. And for these hard days, where my emotions get the best of me, to become less frequent and eventually diminish. 

Incredible Video From a Mom of a Special Needs Child

Having a child with special needs changes nothing; except, it changes everything! 

I came across this video a few days ago that someone had shared on Facebook, and it really touched my heart. Her words are so true and powerful. I have personally spoken and pondered on these same words several times so far since we received Aisllyn's diagnosis. I have also heard these same words from other parents of children with special needs. 

Some days it is hard to handle the grief of losing the child you thought you had... Most days, it is pure joy watching this amazing little girl we have been blessed with reach higher than the stars!

Three Simple Words

We have been teaching Aisllyn sign language for quite some time now, even before we learned the reason behind her lack of speech. This was a tactic I had employed with my middle daughter, Hannah, at a young age because she didn't speak until she was closer to two. It worked wonderfully for us to tear down the communication barrier and ease her frustrations over common items at home that she wanted, but wouldn't communicate to us. Hannah refused to talk. The only words she would say were 'mama, dada, and Tay-wor (Taylor).' I talked with my mom about this, thinking that maybe she needed to be evaluated for speech issues. My mom brought up a really good point. She told me that Hannah didn't have to talk. She pointed, and either her dad, myself, or Taylor would get what she needed. Or, she would jibber-jabber and Taylor would take off running and bring back the appropriate toy (somehow Taylor knew exactly what Hannah wanted). The frustration and fits would set in when she was genuinely trying to express something to us, but we just didn't know what she needed. I decided to try signing to alleviate her (and our) frustrations. And it worked! For common items like milk, juice, hungry, etc... she was able to show us what she wanted and her tantrums began to subside. Like I said, she was almost two when she started actually talking and using full sentences, and she hasn't stopped since! She is talking as soon as her feet hit the floor in the morning, and still going as I'm walking out the door after tucking her in at night! She makes excellent grades in school, just like her older sister, and is reading at an almost 4th grade level. Her lack of speech had no medical reason. 

So when Aisllyn wasn't saying more than dada before she was 1, I wasn't really concerned. I figured, we could start teaching her sign language as well. 6 years later, rather than purchasing books and DVDs, I was able to find some pretty awesome apps on my phone. I purchased Beginner ASL and Intermediate ASL to teach Aisllyn with. I believe they were 4.99 each, which was a whole lot cheaper than 2 books and several DVDs like we had done with Hannah. 

Aisllyn has learned so many signs, but has never really used them to communicate or ask us for something. She will usually mimic the sign when we are teaching it to her. We try to use them anytime we are talking to her. We aren't making full sentences using sign, but showing her the signs that pertain to the emphasis of what we are showing her. For example, I will ask her, "do you want an apple?" and sign apple. Or, "look at the bird" and sign bird. We have started small two-word sentences like "milk, please" and sign both milk and please. She has mimic'd that once for me, and I couldn't have been more proud. She was once even pitching a fit reaching for a banana, so I told her she needed to ask us for the banana; I wanted her to say the word or sign it. She defeated me by angrily signing 'please.' Of course she got the banana! Because she was at least asking us! I was so proud! And I continue to be proud as she produces new signs. 

Her speech therapist is WONDERFUL! Aisllyn can tend to take about 10 or so minutes to warm up to someone new, but the very first time Aisllyn met her, she was engaged in what speech was teaching her. I was SO impressed. I can absolutely tell that her speech therapist has made a break through with Aisllyn. Aisllyn went from occasionally copying the sign that we were working with her on, to being almost fully engaged when we are showing her signs, and will usually produce the sign now. Each week we get a report on how Aisllyn did and what they learned. This helps us work with her through the week, reinforcing what she has been taught. Her speech therapist will write down words that were signed and words that were spoken. 

Spoken?? Wait...what? Did I read that right? My first reaction to seeing - Words spoken today: no, book, cat, ... the list goes on. How was she saying words when being asked to repeat them with speech, but not with us? Don't get me wrong, she has had several break out words like glasses, thank you, sissy; but, more often than not, we are met with a smile when we try to get her to say something. She frequently uses dada, mama, duck, dog, but that has been the extent of her vocabulary for quite some time now. I began to realize that maybe we were hindering her progress. I called my mom to ask her opinion. Were we really keeping Aisllyn from using her words for us? It made sense. At home, we try to use every opportunity to teach Aisllyn a new word or sign, but sometimes, instead of allowing a tantrum to escalate, we will give in. Or, we know what Aisllyn wants - much like when Hannah was her age - and automatically give it to her. It certainly isn't intentional, but it absolutely has a lot to do with why we are not seeing (hearing) the same at home. 

We don't want to make life hard for any of our children. But we want to raise them right. In Aisllyn's case, just giving in is not the right way to go. Sure, I want her to make it through life having as little struggle and strife as possible, but at this stage in her development (keeping in mind the potential for delays) we can't do that. I am so thankful I talked with my mom and realized that we were likely contributing to her lack of speech at home. We have to make her work harder, even if that means not giving in to what she wants, or not just giving up and moving on because she isn't cooperating with what we are trying to teach her. Doing those things will only make it harder on her as she gets older. She needs to learn now that she will have to keep trying in order to master something. I don't want to instill an attitude of giving up and moving on to the next thing just because it might be a little difficult. And really, even though it may take more time with Aisllyn, it is the same lesson that I teach my older daughters Taylor and Hannah on a daily basis. This realization has shifted my thought process and encouraged me to try new things when we are working with Aisllyn.

Before, I would try to get her to produce a sign or say a word, but if she showed signs of boredom, we would move on to something else. Now, when we see something new that we don't know the sign for, I pull out my phone and Aisllyn and I watch the short video of the sign; I put my phone down, show her the sign and say the word, and then help her get her fingers in the right position, and help her make the sign. She may not say the word, but she will usually produce the sign on her own after a few tries with my help, and then we cheer and clap! Which brings me to the reason for all of this background about speech and signing...

For the past couple weeks we have been signing 'I love you' to Aisllyn before we put her to bed. *thumb, pointer, and pinky straight out; middle and ring fingers folded down into palm* We then help her fold her middle and ring fingers down to her palm to mimic the sign. Last night as I was rocking her, she was playing with her fingers and it reminded me that we didn't sign 'I love you' yet. As I was picking my hand up to tell her I loved her, I looked down and she was using her left hand to fold down her middle and ring fingers on her right hand. I signed I love you, our eyes met, and she smiled such a big smile! She then reached up and gave me a kiss. SHE DID IT!!!!! She signed 'I love you' without any direction from me, and what makes it even better... She knew what she was trying to communicate to me. She knows love! My heart was so full and overflowing!

I know I personally take for granted the fact that Taylor and Hannah can communicate everything they need and want. It has always warmed my heart to hear the words, "I love you mommy." And that was a phrase that I wanted desperately to hear from Aisllyn. When we found out that the polymicrogyria and pachygyria would affect her ability to speak, my heart hurt because I didn't know when I would be able to hear those same words from Aisllyn. Last night, I didn't have to hear them. She knew what she was showing me, and it sounded the same in my heart as if I had heard those very words flowing from her mouth. 

Those 3 simple words. From a child to a mommy. There is nothing sweeter.

Knowledge is Power

We all know the power of the internet. What an amazing tool it has become! I am very thankful to live in a generation where technology is at the tip of your fingertips. It has made research and communication so easily accessible that it can at times become overwhelming. As I mentioned in my first blog post, the internet can also turn the most sane person into a hypochondriac! So I hope to alleviate that for the next person by sharing links that were helpful for me.

After reading case study after case study about what polymicrogyria was, and expectations for development and life, my head was spinning. I opted to stop checking the top search results and dug a little deeper. I was looking for personal experiences with this diagnosis to help ease my overactive imagination. I already knew that Aisllyn's diagnosis was not as severe as anything I found, or anything we were told to expect. 

I ran across a wonderful organization, PMGAwareness.org. They have fantastic links to additional resources; an abundance of knowledge that I have yet to make it through, but it really helped. 

In researching the microcephaly diagnosis Aisllyn received, I found an incredible website and organization, Foundation for Children with Microcephaly.

I also found a book that was a saving grace for my heart and mind. Written by an incredibly talented and witty author, Rob Rummel-Hudson, it shares his journey with his daughter Schuyler's diagnosis of polymicrogyria. It is called Schuyler's Monster: A Father's Journey with His Wordless Daughter. I highly recommend anyone who has not read the book, whether affected by this diagnosis or not, to read it. It is a short read, and I believe it cost me 6.99 on iTunes. I found his blog and the book just a few short weeks after we received the results of the MRI from the neurologist. His blog is titled Fighting Monsters with Rubber Swords. I had the pleasure of sharing this book with my mother because she decided to download the book and read it along with me. Thank you mom! Again, I highly recommend this book! 

I plan to eventually compile links on the home page of my blog for faster access, but for now, I wanted to pass along these helpful resources. 

To My Daughter: I Wouldn't Change a Thing

Today I received a call from my support parent through Family Connections. It was such a good feeling to finally be able to talk to another parent whose child has the same diagnosis as Aisllyn. I have read many stories of other parents, but it was different actually getting to talk! It felt wonderful! So far (through Family Connection's database) we are the only 2 parents of children diagnosed with polymicrogyria and pachygyria in South Carolina. There may very well be more, they are just not in the database with Family Connections. She said that there is a family in North Carolina and a family in Georgia that she has been in touch with, but no one here. I cannot wait to meet her and her daughter! 

The lack of parents with children that have the same diagnosis sparked my investigative and researching personality. I decided to try a plethora of keywords to find other resources for support locally, armed with the power of the internet. A word of caution: what I stumbled across may be hard for some to read, it may cause indifference in others, but for me it was heartbreaking.

Of course, I found the usual. Not a whole lot. But I found an article from 2011 on why a mother chose abortion at 29 weeks. If you care to, you can read the full article here. I will give my short summary. Basically, a woman found out when she was 29 weeks pregnant that her baby had polymicrogyria. It does not go into details on the degree of underdevelopment in her growing baby's brain, but she was given the same expectations we were told of Aisllyn after her first MRI at the beginning of March with one exception; during the imaging, the doctors found that the baby appeared to have difficulty swallowing. With the support of her doctors and her family, she chose to have an abortion. My heart broke. I personally don't agree with abortion, but I try to respect other people's views, beliefs, and choices, even if it is in disagreement with my own. And I will respectfully state that I have no words to describe how heavy my heart is over her decision. Did she make the wrong choice? I don't know. I'm not in her shoes, and have no knowledge of her family's circumstances. It is not my place to pass judgement. It was just very close to home for me. But I can honestly say that I wish we had known while I was carrying our angel. She would have received the therapies and help that she needed from birth. I fully believe that she would not have missed her milestones if she had been receiving physical therapy, occupational therapy, and speech therapy from birth. She is proving herself stronger than we have been told she can be...daily! 

Let me pause there for a moment to give a clear example. We were visiting with her neurologist after her first EEG (electroencephalogram - used to detect seizure activity in the brain). The abnormal EEG results proved what the MRI told us - she has the potential for seizure activity in her brain due to the underdevelopment. Up to this point, after 3 visits, I'm pretty sure Aisllyn hadn't said a word that was intelligible in the neurologist's presence. I really don't think he believed Aisllyn had a vocabulary, and would even go so far to say that he likely thought we weren't being honest with him. He was typing and clicking away on his laptop, going through the results while Aisllyn happily played on our laps. She began to play with Thomas' sunglasses that hung around his neck. We repeated the word 'glasses' several times to her while she pointed to them. All of a sudden, in her sweetest little Aisllyn voice, she says VERY clearly and with a purpose, 'ga-sez'! Her neurologist (without looking up from the computer) paused from the typing and clicking for about 3-4 seconds, and then...he smiled. That moment gave my heart hope. She is surprising the heck out of the specialists we are seeing; this being just one example of many.

That being said, I will continue... I cannot fathom the idea of abortion because my child would be born with a diagnosis that would require more work for everyone involved in her care. Do I wish we didn't have go through it? Sure! I would be lying if I said I didn't. But I know that Aisllyn is here for a reason. She has a purpose in her life, just as we all do. She is our responsibility to nurture and mold, to love and to teach, not to decide that we can't handle the strain that comes along with her diagnosis. Financially, medical bills that insurance doesn't cover start to add up. Physically, there are days that I am so exhausted because I had to get up a few times after putting her to bed to try to rock her back to sleep, until finally giving up and bringing her to bed with us. Emotionally, it is hard grieving the loss of the life that I thought Aisllyn would have with us.

**and when I say 'I', I really mean 'we.' Thomas does more than his share in our lives, I just don't want to pin my feelings, thoughts, and words as his**

But, financially, we work harder to take care of expenses. Physically, I choose to rock and rock and rock her back to sleep because, although it is tiring, it feels so good to have her so close to my heart. *side note: we don't do the 'cry it out thing' because she can pull herself up in her crib, but has trouble getting back down* And even if we sleep on the edge of the bed because she wants to sleep sideways between us, having her snuggle up to us as she drifts off is close to heaven. Emotionally, we celebrate daily her accomplishments and the life she does have with us. 

To My Daughters (Taylor, Hannah, and Aisllyn): 

You show me every day that I have no need to place limits on what you can do, because every day you do something that far exceeds my expectations. God has chosen me to be your mommy, and I will do my best to give you the love and support you need to grow farther in life than anyone could ever expect you to. I can only hope that you all know how far my love goes, even when times get tough (and when hormones kick in!). But most of all, I wouldn't change a thing.

I want to finish this off with a poem that I stumbled across after reading the article that hurt my heart. God looks out for me and He certainly knew that my heart needed healing at that moment. The poem brought tears to my eyes. It reminded me of the love I have for my girls. And how thankful I am to be their mommy. Enjoy!

An Angel Left Her Wings

I have this little angel. For me she left her wings.
She has no idea how much happiness she truly brings.
She brightens up my days with her smiles and her laughs.
She helps me to remember all the blessings that I have.

Her face, it is so perfect, she's sweet and soft and pure.
Sometimes she can be willful and sometimes she is demure.
She tries her very hardest to please and do what's right.
She gives the greatest hugs from morning until night.

Every person that has known her sees this light within her soul
I know that in this whole great world, she has a special role.
She's helpful and considerate to everyone she knows
This light in her shines brighter as my angel grows.

When she sees someone is sad, it opens up her heart.
She wants to do all that she can; she wants to do her part.
She'll squeeze away the sorrow and make me forget about my pain.
She shows me where the sun is when we're hiding from the rain.

I know that God must love me, He showed me with His Grace
I knew just how completely when I saw my angel's face.
And in that very moment when she came into my world,
I knew that she was so much more than just my baby girl.

She would be my sunshine, with a sweetness that won't end.
And when she grows up one day she would be my closest friend.
She would be the reason I would always try my best.
For my little angel baby girl would be my greatest test.

When God entrusts to you an angel, who has left her wings for you.
Encircle her with love with everything you do.
Let her know God made her, and that He trusts you with her care.
Be sure to make time for special moments with her to share.

And when at night she finally says her prayers and goes to sleep
I Thank Him for my angel, and ask for him to always keep
A watchful eye and hand to protect her from this world.
Protect my little angel; protect my baby girl.

Source: http://www.familyfriendpoems.com/poem/an-angel-left-her-wings#ixzz38tCgASof
Family Friend Poems 

Reaching for the Stars

In about 3 weeks, I begin nursing school, a goal I have been working toward since 2010. I decided I wanted to become a nurse a few years after watching my mom walk across the stage at her graduation, officially a nurse. Until then, I had been back and forth with what I desired for a permanent career for quite some time. Watching my mom work so hard toward something my entire life was an inspiration that pushed me in the direction of a career in the medical field. So each semester I took one class here and 3 classes there, up until we were surprised in at the beginning of 2012 with news that our home would grow by 2 feet; and how precious they are. So, naturally, I put my schooling on hold. Last fall I decided to start back right before Aisllyn's first birthday to finish up the 2 classes I lacked to apply for the associates program at the local community college. I still have quite a bit to go, but I am making it there one semester at a time. My dream began with an indecisive, "I'm pretty sure I can do something like that," and because of Aisllyn's diagnosis, it has evolved into a realization that helping others (specifically children) is where I am supposed to be.

It is certainly a surreal feeling to finally begin the steps of the last leg of a long journey. It got me thinking... as a parent, I want nothing more than to be able to help my children achieve all of their goals and aspirations in life. Aisllyn's diagnosis was absolutely difficult for me. All the things I imagined her doing as she gets older suddenly hit a brick wall.  And it has taken some time for me to fully accept that there may be some things in life that she may not be able to do. I certainly will never limit her, or make her feel like she can't, but realistically, we all have a brick wall. Everyone can't be the next Albert Einstein, Johann Sebastian Bach, or Nicholas Sparks. We can certainly dream about it though. I am in no way slighting my girls' potential for greatness when I say this. All children have huge dreams about what they want to be when they grow up. Some can achieve that goal, others may realize once they reach adulthood that being a princess or Buzz Lightyear wasn't very realistic (Ok, so a bad example). And that's OK! I want my girls to know that no matter what they desire in life, I will help them pave the way to the best of my ability. But I won't intentionally set them up for disappointment. 

Aisllyn is an inspiration to me. She is always smiling, and passes that smile on to everyone she meets. It is infectious, and I'm pretty sure she knows this and uses it at will against us! It never fails, she will wake up in the middle of the night ready to play. A noteworthy point: I seriously value my sleep, and if it is disturbed... well, it usually isn't a good thing. But somehow, looking over at her (when she has decided she can only sleep snuggled between us) and seeing a smile that radiates pure joy and happiness makes me smile; starting at the deepest point in my heart moving all the way to my lips. And I can't help but give in and return it, leading to a few moments of late night giggles between the two of us. Her ability to be happy at any given moment in time is what life is all about. I believe that is one of her gifts she has to offer to those around her. I have never met a person yet who hasnt given in and just melted over her twinkling eyes and toothy grin!

Yes, I will absolutely help my children reach for the stars, but I want them to know first and foremost, that no dream is attainable if you can't find your happiness first. I am so grateful that Aisllyn has hers.

Baby Steps

Aisllyn is making great strides in trying to walk. She is almost 22 months old and we are finally making some headway. We should be receiving a gait trainer soon to have at home, so her walking with minimal help will not be limited to just PT appointments. I am so excited about that!! We will have to remove the area rugs in the house so that she has more room to maneuver. But, it will all be worth it! We have received a loaner gait trainer to use until our's is here, but it is worn out, and it has been difficult for her to use it well.

I wanted to share some pictures of this sweetness working hard! :)

One of the very first photos of her working in the gait trainer at PT:

A little more recent:

2 weeks ago (we are getting stronger):

And last night at home, hanging out her own way and watching TV in the gait trainer (btw, she pulled up to standing in it without any help!):

This little girl lights up our world, and to see her working so hard (happily, might I add), makes me so proud! She has incredible determination, and I know that this will get her far. God is working hard through Aisllyn and helping me improve on so many things: among them are patience, encouragement, and especially LOVE. 

Cerebral Palsy comes in many forms. It can be as slight as a stiff ankle of the star football player on the highschool team, or it can present itself severely and limit function for most or all movement in the body muscles, requiring the use of wheel chairs and feeding tubes. There are absolutely days that I wish that Aisllyn didn't have to deal with CP, but more often than not, I am so thankful that it isn't more severe. CP may limit her physically right now, but she has a long way to go and is improving each week. I believe that as she gets older, she will overcome these challenges, and these challenges will only make her stronger! 

Special Acquaintances

I'm thinking I probably should have waited until this summer semester of classes finished before I decided to add another item to my schedule (ie... blogging!) But it was really on my heart to start sharing our story.

Thomas takes Aisllyn to OT and PT each week and he has shared with me that there is a little girl who is about Aisllyn's age that has similar physical issues from cerebral palsy like Aisllyn does. They see her mainly on the day Aisllyn goes to PT. Last week, Thomas brought home a birthday invitation for Aisllyn to attend her 2nd birthday. I had tears in my eyes. It touched my heart that another mother was reaching out to us for her little girl who can't quite accomplish that on her own, but who I'm sure just like Aisllyn, wants to be able to. Just like Aisllyn, she isn't talking, but uses some sign language. This invitation couldnt have come at a better time. I have been wanting to find a way to reach out to other parents with children who have special needs, but I haven't had the opportunity. We need that support in our life. Because honestly, even with the best friends in the world that both Thomas and I are blessed to have, it just isn't the same when it comes to sharing these HUGE achievements like first steps or a new word, or being able to call  just because you need someone who understands that tough day you had with tears and tantrums, ending in sweet snuggles where no words are needed between you and your sweet baby... Days like those, it would definitely be a blessing to have someone to call. So of course we are going to celebrate a super sweet girl's 2nd birthday! And I'm sure it will be one all of the babies will remember!

The invitation got me looking into some other ways to reach out to parents like us. I contacted Family Connections, an organization that puts families in touch with other families who have children with the same or similar diagnosis as your child. They also have amazing activities they put together for the siblings of children with special needs - as much as I hate to admit, unfortunately, my older daughters have to step to the side sometimes because of something Aisllyn needs or an appointment that we have to get to. They are both incredibly understanding,  AMAZING, big sisters! And they deserve to have that additional support outside of our family as well!

I am so excited! Within 2 hours of speaking with Family Connections, I received an email of 2 parents who will be reaching out to me in the next couple of days. So, in addition to our birthday party and talks of future play dates, we will be meeting more families to add to our support network! God is GOOD!

I am so thankful for Aisllyn's special acquaintance! Aisllyn loves interacting with other children her age, and even though she can't say what she is undoubtedly thinking, her eyes and smile say it all!

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!