Fun Food Friday - Beautiful Fall Day

I'm not entirely sad that it's looking and feeling more and more like fall outside. Yes, I know it means the cold and snow will soon follow. But for now, as the leaves change colour and start to fall to the ground, it's very beautiful. Soon there will be big piles of leaves for kids to jump on and play in. How fun. And so, tonight's supper was a bit of Fall fun...

Happy Friday!

Remarkable!

There is a reason why we call her Supergirl, and Taylor's appointment yesterday with her wonderful Neurologist, Dr. Bello-Espinosa, verified what we already know...that she is indeed remarkable.


At Taylor's Neurology appointment yesterday, with Dr. Bello-Espinosa

The first thing he went over was the cranial MRI that Taylor had on Friday. It shows a little immaturity and myelination delay, which is what he expected to see. No surprises. Except that her corpus callosum, which was once too thin (hypoplasia of the corpus callosum), is now well developed. Wondeful news.

We then talked about Taylor's last EEG, which was at the beginning of August. There was a 70% improvement from the previous EEG. But when I asked him how much improved it was from her worst EEG, he said 95%. Beyond our wildest dreams and expectations. 95% improvement over Taylor's worst seizure activity. Dr. Bello said that they have never seen a child with Lennox-Gastaut syndrome improve like this, never. In his own words, it's remarkable. He was beaming. She no longer fits the pattern of Lennox-Gastaut. We're in utter amazement over our special girl.

What does this mean? It means that the IVIG treatments are working. They don't even use IVIG for treatment of seizures anywhere else in Canada. But they have about 25 patients here at Alberta Children's Hospital on it. It may be a honeymoon phase and seizures could return, but for now, Taylor's brain is at its best and now is the best opportunity for us to see what she will be capable of developmentally. I feel like this is her year. She's already stronger. She's smiling. She turns three in a couple of weeks and I think if seizures can stay at bay, she has the potential to make great strides this year. Taylor's physiotherapist has always said that she believes Taylor will be able to sit independently at some point. As positive as I try to be for the most part, I have had trouble believing that. But now, oh I'm a believer alright. I see the possibility. What a dream that would be.

Dr. Bello brought a new colleague in to meet us, Dr. Morris Scantlebury. He's from New York and developed a model of infantile spasms. He is also amazed and intrigued by Taylor's dramatic improvement. He will be writing on her case for medical journals. Imagine that! We asked what the attraction to Calgary is. Apparently the Neuroscience Department here is the best in North America. So, not only is Taylor doing better than we could have imagined, she is in the very best hands here. We already knew that though, Dr. Bello is the best. We are so very grateful.

We talked about cerebral palsy, when the brain is not driving motor abilities. And that is definitely the case with Taylor. He agreed that she technically has Hypotonic Cerebral Palsy. Much rarer than the more typical spastic forms of the disorder. So we have another condition added to Taylor's list.

We also talked about Autism. Children with a history of infantile spasms have an increased likelihood (as high as 80%) of developing autism. This is a behavioural diagnosis involving failure to develop language, impaired socialization, and stereotypic repetitive movements. She does display autistic features and has the self-stimulatory behaviour (shakes her head back and forth, rocking, biting herself), but at this stage it's too soon to evaluate whether or not she has autism because the amount of seizure activity she's had and the chaos in her brain could be contributing to these features. They will be better able to more accurately evaluate the possibility of an autism diagnosis a little further down the road, perhaps a year, if her seizures stay at bay and her brain has the chance of allowing her to progress developmentally.

For now, my girl has a remarkable improvement in seizure activity. She has amazed her Neurologist. She continues to amaze us. Supergirl is flying high! And we're right up there with her.

Thoughts of a Mom...

I came across this one day this past week when I was doing my blog reading and had to share it. To the wonderful moms I've met through Taylor's journey (and the one's I haven't met yet), this is for you...

Thoughts of a Mom
by Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters." Yes, you and I, my friend, are sisters in a sorority. A very elite sorority.

We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs. We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk.

Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.

We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try. We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family. We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy.

We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip. But we, sisters, we keep the faith always. We never stop believing.

Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons.. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

This really touched me, and I hope it does you too. Carol, Jadi, Stef, Liz, Linda, Courtney, Jane, Jenn, Shaheen, Lindsey...you are all incredible mothers and women and I am blessed to have met each of you.

Fun Food Friday

Double header today, I forgot to post last week's fun food. I went with animals the past two Fridays, last week was a lion, and this week a pig. I don't know who enjoys them more, me making them or Marissa with her anticipation and happily gobbling down the whole meal. I think I'd agree that we enjoy this tradition equally!

Happy lion

The pigwich

 Happy Friday to you!

Fun Food Friday - Crazy for Caterpillars

Seriously?! This one rocks. Marissa was pretty giddy as I assembled the caterpillar (she wanted to wait for the surprise but kept getting too excited and taking little peeks). This one did take a little extra time, but the end result was so worth it! She ate every scrap, all but a few of the crackers. But she did lick the peanut butter clean off them all, girl got in her protein :-)

Happy Friday to you! And to Jill Dubien for inspiring me to adopt her Fun Food Fridays!

A New Chapter

Today was the big day. Marissa's very first day of school. The buildup has been mounting for some time and once the moment was finally here it did not disappoint! She's been excited about Kindergarten ever since Preschool started last year. And once she found out she was going to be riding a school bus ALL. BY. HERSELF. well she couldn't stifle her joy! She has to contain that for a few more days because today and tomorrow the parents bring them to school. Tuesday is the first ride on the big yellow bus.

We had some lead-up to the big event. There was shopping together yesterday for the first-day-of-school-outfit, of course. Followed by the four of us having dinner together at Montana's. When Francis left for work at 6:30am this morning, Marissa was all ready to get dressed. She was so puffed up with excitement this morning I thought she was going to spontaneously combust! She was adorable I must say.

All the Kindergarteners gathered in the gym, got nametags, lined up, then got taken to the classroom by their teachers. There was one little darling in the lineup whose poor eyes were brimming with tears, I just wanted to give her a hug. My kid, no tears there, she was vibrating as she waited patiently in line to head off on her life's newest adventure. I love her passion. I'm so proud of the way she handles big changes like this. No fear. No reservations. Both feet forward. Way to go monkey.

It was just an hour today, enough to sweeten the pot and lure them back for more tomorrow. When the teachers opened the doors they told us it was a great first day and fun was had by all. Marissa came running to me and wrapped herself around me tight. She had a ball.

I had asked her what she'd like for supper on her first day and she chose chicken pot pies. Not homemade, no. The frozen kind. Where's the big red button from Staples?? Cause people, that-was-easy!