Uneventful Update

Dare I jinx myself by saying that life has been, what I call, so wonderfully uneventful these days which might explain the lull between this post and my last one? And knowing that I am without my most supportive and eager reader leaves me somewhat unmotivated to put forth the effort and share what would always trigger the sweetest responses. My Grandma is missed, and greatly so, but according to Esme, "GG" might be closer to us than we realize.



Anyways, here I am today with some long overdue updates because life has a way of so sweetly rollin' on. For the sake of documentation, here goes.

Our second trial of giving Oia the anti-seizure med, Trileptal, is still going well. Two doses; one with breakfast and one with dinner. Side effects are none, seizures (knock on wood) have been absent, and overall it's a scenario that we are happy with. If only we could make the milky concoction taste better, but thank goodness for M&M's.



I've heard and read a bit about kiddos in the special needs world who are poor sleepers. For unexplained reasons, these kids do not naturally produce enough Melatonin (but I'm no MD so do not quote me on this). Although Oia is not a poor sleeper, she is, however, a bear to put to sleep; a crying, protesting bear that we have battled every night since almost infancy. Her body/brain just doesn't know how to quit. Her bedtime refusal could easily last 30 minutes, or longer. Easily. It's a horrible way for both parent and child to end the day. Enough was enough. So at last neuro follow-up, we questioned the use of Melatonin, a natural sleep aid, and her doctor wrote us a script for the liquid form. Oia and Esme call it cherry juice; Rob and I call it pure magic. After just 2ml's at bathtime, our girl becomes sleepy and willing to snuggle into her own bed. Finally a peaceful end to the day, and we all deserve at least that.



Our family took a brief escape to a Great Wolf Lodge last month with our dear friends, The Sharpe's. We bowled kiddie style, played some light game that I never got the name for, devoured too much pizza, and had two days to enjoy water play. We enjoyed the break of routine and the time spent with great friends. Weekends like this don't happen often enough but we're thankful when they do.



The Teaster abode is still on the market. It's been four months of trying to maintain this house so it appears as if no one lives here; ready for a showing on a moments notice. I'm in constant cleaning mode. Traffic has been slow but we are hopeful with warming weather we will get this house sold sooner than later. In the meantime, Rob and I have been meeting with our potential builder and tweaking floor plans on a home that will one day meet the needs of everyone who lives in it. It's so very, very exciting but frustrating all at the same time as we have property picked out; land ready to call ours, but no commitment can be made until this house sells. Holding patterns are not for us.



So, see. Overall uneventful. It's a good thing in our world. Just the way it should be to easily live in the moment and savor all the yumminess these two girls of ours have to offer. Up next in the books; appointments with ortho and ophthalmology. Hoping the uneventful remains.

What's Missing?

This One's For You, Grandma

I was her first born grandchild. She said she cried when I was born. I suppose she was happy to finally see me, her first of many granddaughters. I proudly share her middle name, as does my youngest.

As a child, her home on the lake promised fun and memories. It meant swarms of cousins, aunts and uncles, neighbors and friends. It was a home that both my Grandmother and Grandfather constructed from the ground up with hard work, love, and mostly second hand materials. The process was gradual and the lesson was patience. In it, they raised 5 children; a daughter and four sons. My Grandmother mentioned to me in recent visits, while seated inside this very house, that she loved and still appreciated the home that my Grandfather provided. "I've had a wonderful life", she often concluded.

It's smell is disctinct and like nothing I could ever explain. I slept over many nights on Grandma's couch as a little girl and remember being woken each hour of the night by the cuckoo clock that never missed a beat. Once the bird chimed and coo'ed and slid back into the inner workings of its little house, I'd breathe in deep that comforting smell of Grandma's house and fall back fast asleep. Content. By morning, I'd wake to the smells of coffee, sometimes bacon, and always oatmeal. I never kept it a secret from my Grandma that her lumpy oatmeal was the very best around, and my absolute favorite breakfast ever. At Grandma's house the sugar, butter, cinnamon, and milk were available in unlimited quantities and to this very day, I make my family oatmeal for breakfast just as I remember eating it at Grandma's house so very long ago.

She and my Grandfather were always so supportive of my activities, and I vividly remember junior high and high school with them in it. Rarely did they miss a sporting event of mine, particularly basketball. They cheered and clapped no matter how poorly I played and usually waited after each game to give me a hug before leaving. That's was good grandparents do. My friends always said they were a cute couple seated in the stands among the crowd, and they were right.

Just a few years after high school, my Grandfather passed away. Our last conversation was via telephone, the day before his scheduled surgery. I had this undeniable urge, a nudge from Heaven I guess, to call him that afternoon. I'm forever grateful I did. I don't remember all the details of our last conversation but as we spoke, I know he was seated outside, in the sunshine, calm and relaxed. He told me so. He assured me he was not scared or worried for surgery the following day. He was a Godly man who knew better than fear. I'm sad Rob never got to meet him.

Through my eyes, Grandma adjusted well to widowed life. Her strong character came in helpful for the lonely years that followed. She continued to support me into my adult life and was very present for all of life's major milestones. She traveled to North Carolina from Ohio, with all oxygen gear in tow, to celebrate Thanksgiving in Rob and I's first home together. Newly moved and still unpacked, my Grandma was in our new-to-us, less-than-perfect home yet swore over and over again just how lovely of a home she thought it was. She was a part of our wedding, again traveling out of state to be there. I can still see her, seated and beautiful with a corsage on her shoulder, at her table during our reception. She enjoyed the evening of our wedding, and often commented how much she appreciated chatting and visiting most with Harold, Rob's father. She said he reminded her a bit of her own dad.

Grandma and I always stayed in touch, despite the distance between us. Her love filled me, even from afar. We relied on email and the ancient art of letter writing, shared birthday and holiday cards, and occasionally a surprise phone call. She was savvy, even friends with me on Facebook. But I enjoyed most the beautiful, calligraphy-like penmanship that flowed from her left hand which made her letters and cards all the more special. She was indeed proud to be a 'Lefty', teasing that Lefty's work from the "right" side of their brain. She was a witty one, no doubt, and her last letter to me will always be my favorite.

Once I became a mother, the love and admiration I felt for my Grandma grew immensely. I was able to be a mother because at some point in her young life, she chose to be one too. That's amazing to think about. Motherhood drew us closer, becoming another common thread between us. As life began to get rocky in those early days of motherhood with Oia, my Grandma's emails and cards continued to pour in with the most eloquent, yet simple words of encouragement and unconditional love. Often those emails were addressed to Oia, written specifically to her. Each email I read, usually more than once, before safely storing it in a folder titled 'great grandma'. That folder now contains five years worth of her emails. Each one I can open and read anytime I ever need to. Her words will one day be read and treasured by my girls and they will know her love; the reason I have saved them all.

I feel so blessed that I was able to give my Grandma two great-grandchildren and that the good Lord let her stay long enough to experience greathood. I tried my best over the years to share my girls and our family joys, and even the trials, with her as often as I could. She was my biggest cheerleader, our braviest prayer warrior, and an integral pillar to this party of four. But on the evening of January 18th, just two weeks ago, that pillar of me crumbled as my beloved Grandma met the faces of her angels as they safely guided her on the road to eternal peace. My Grandma was ready. "I've had a wonderful life" she'd say to me over and over, "...and you have a wonderful, wonderful family, Mo". The last words she said to me, over the phone just a couple of days before she passed, I love you, Sweetie, Bye-Bye. I hope I can remember the sound of her voice forever.

The loss of someone so dear guarantees an initial void and great sadness. But, I will remind myself of her "wonderful life" each time she creeps to mind and I will rebuild the pillar that she once was to me with her sweet memory and story. Memories of a classy woman who wasn't afraid to speak her mind, who deeply loved her family, who played on the floor with both my girls, and who read every last word I ever mumbled on this blog, which was created largely for her. I will smile each morning as I scoop unnecessary amounts of sugar into my coffee, or oatmeal, with an old spoon that used to be hers. I will point to her picture in Oia's room and remind my girls of their GG. I will think of her each time I see shades of turquoise, sip wine, or hear an Our Father. I will feel a little sick the next time we venture to Ohio knowing that she won't be there to hug. I know she will come to mind often, and probably when I least expect it. And when she does, I'll smile or nod or perhaps I'll even glance upward, and give thanks for the life I've had the priviledge of knowing and loving for the last 35 years. Because yes, she was a wonderful life. And although she is now gone, she will never, ever be forgotten.

In loving memory of Marilyn Anne Richter
October 27, 1930 ~ January 18, 2013

Neuro Follow-up

The short and sweet version... here it is.

Oia's EEG this month did not indicate a change in her brain activity. All EEG's to date have show the same constant and frequent "spikes" in activity located in the left frontal portion of Oia's brain. This is the very place of Oia's brain malformation, the cleft/hole, her Schizencephaly. Activity is most aggressive while our girl is at rest and during sleep but these spikes and irregular firings happen around the clock. In a nutshell, it's an utter miracle that two, just two, seizures have broke through in the last five years when literally, her brain tries to have one all day long.

But, that's two too many. So now, the anti-seizure med Trileptal is a part of our morning and evening routine. She hates it, the taste is horrid, but it's nothing an M&M afterward can't handle. So far, so good. The only side effect that seems obvious is potentially an increase in appetite. Then again, maybe she's experiencing a current growth spurt. Either way, big appetites for a tiny, very busy girl is a good thing. From here on out, we'll keep rollin' on with the Trileptal and cross our fingers that this med is the answer to a seizure-free life.

Another Seizure and EEG

It's been about a month now (the week before Christmas) since Oia had her first seizure. Per the guidance of the neurology team, we began giving Oia the anti-seizure med, Trileptal, at that time. Within the first week of administering the medicine, we stopped it. The week on the medicine was crazy, for the lack of better description. Oia was more inattentive than usual and extremely busy. It was an exhausting and frustrating week. She was literally all over the place and lacked complete focus. The very behavior we are trying to calm was intensified during the week on Trileptal. Also that week and even prior to it, we were dealing with a mystery rash as well that had no cease in itch despite the topical ointments and oral Benedryl we were giving her around the clock. Perhaps the meds used to treat the rash were having adverse side effects with the seizure med but we just said enough is enough. We carried on seizure med-free from there, willing to take our chances.

An EEG was scheduled for last Thursday, the 17th. It was to be a sleep-deprived read so we were instructed to wake the Miss at 4am for her 8am appointment. Since this momma bear doesn't do mornings well, I was a little late and woke her around 4:30am instead. I gently picked her up and carried her groggy self downstairs where I had planned for us to snuggle on the couch, by the fire, and share an early breakfast of donuts and milk. But in less than 5 minutes of us being out of bed, Oia began seizing.

I quickly carried her back upstairs and woke Rob. I held her, comforted her, rocked her, and waited. Rob recorded the bulk of her seizure to share with our neurologist. Two minutes felt like 30. No need for diastat this time. She fell asleep immediately after it passed, waking on and off for the next hour or so. I watched her like a hawk.

We made it to our 8am appointment. And as we suspected, Oia screamed bloody murder for nearly all of the EEG process. Rob had to lie over her top half and I over her legs to keep her down and somewhat still for the technician to adhere the wires to her head. Her screams lulled to just a cry for the 20 minutes it took to do the read, all of which Rob and I still had to hold her down for. We make a good team but it's a wonder she still loves us. I know she doesn't always understand why we must do the things we do, to her and for her.

Our neurology appointment this Wednesday, the 23rd, will be important. I'm anxious to gain insight on what's happening inside that sweet head of hers now. What's changed? Why the seizures now? What must we do from here? For now, we have resumed the Trileptal for take 2. With no mystery rash and other meds on board, we are hoping that we will not experience a repeat of the adverse side effects this time (increase in hyper-activity) and that this med will be our ticket in keeping these nasty seizures far, far away. For good. One can only hope.

Happiness is...

2012 Recap

Well, there goes another year. It's a good thing. A place to start fresh is always nice. 2012 was a whirlwind for me. I felt as though I wandered around without my head a lot. I'm feeling like 2013 may be more for me. They say green is the color of 2013 so things are already headed in the right direction. Allow me a slight recap of our year... all of the good, the bad, and the ugly that I can possibly remember.

~Oia underwent dental surgery. Still feelin' guilty about that one.

~I struggled with a short but powerful bout of postpartum depression. That crap is no joke. It seemed to come early in the new year and lingered until almost summer. May I never, ever experience that again.

~We ventured with breath held nearly 800 miles to The Kaufman Children's Center in West Bloomfield, MI in hopes of a tiny miracle over our apraxic world. We got one. Nancy Kaufman gave it to us. Our lives not perfect, but forever changed. Oia's expressive language since then has exploded. There lies a big ol' black asterick next to this 2012 happening as this was by far the year's highlight for me.

~Oia got new glasses.

~I got a continued lesson on the fragility of life as I've witnessed my best friend battle her biggest dragon yet. Diagnosis' don't discriminate and breast cancer is no exception. This dragon, though, chose to take on an individual who is far stronger and faithful than any woman I know. The dragon has definitely left it's mark, but all that remains standing now is my Suzanne. And frankly, that's all that matters.

~Oia went to her first, non-therapeutic camp. She attended with the help of her shadow were she was exposed to all things turtle for 5 days. Not sure what she got from the experience but I'm glad we worked it out and she tried it.

~We vacationed at Myrtle Beach with one of our most favorite families ever, the Hampton's. The sand, sun, and company was much needed.

~Our baby Esme turned one. Then she learned to walk, all on her own and just like that. And as if that's not enough, the kid started talking. And stating her ABC's to h already, then skips a few to m,n,o,p. She even counts to 10. Seriously, she is just 17 months old. Who is teaching her this stuff?

~The biggest star of the show turned 5. What an amazing girl. Full of life. Full of unconditional love. Simple yet so complex. And FIVE!

~Rob and I celebrated our 8th year of marriage in August (we've been a couple for nearly 15 years!) Hard to believe.

~Heard the words "...wean her out of these braces" this year, which was a delightful shock.

~Oia jumps now, from and off of things. Sometimes she hops from room to room simply because she can. But usually, she just runs. I still remind myself of a time when we wondered if she would ever learn to walk without support. Boy, would she ever.

~Oia started her third and last year of Preschool.

~I tucked away a good bit of pride this fall and hired an attendant. Felt like such an unnatural thing to do as a mother but welcome to the wonderful world of special needs parenting. It's intense. The second item on this list could have possibly been avoided if only I had done this sooner. Oia demands constant one-on-one attention and she deserves it. But so does Esme. Life now with help is nice and just a handful of respite hours a week makes all the difference in the world.

~We potty trained Oia. She still wears a Pull-up at night but who cares? This girl is in undies all of her waking hours and she is equally as proud of herself as we are of her. She is even demanding privacy in the bathroom by choosing to lock us out. She's on her own.

~We pointed our toes towards the big dream of building a one-level home. Prayers for the quick sell of this house would be lovely. It's our only anchor in moving forward.

~Oia just had her first seizure last month. And some funky, mystery, month long rash that had the girl itching out of her skin. Both of which are not welcome back. Lord, it was awful.

~Esme ended the year with a double ear infection and Bronchitis. I, with just Bronchitis.

~And, Oia ended the year with her first loose tooth. Not sure I'm ready for the baby to start falling out yet...

I suppose that's the bulk of it. Not the best of years, that 2012, but certainly not the worst. But forward and onward to 2013. So much is waiting for us. So much to claim as ours. Day by day though... and one thing at a time, while giving thanks all along the way.