About

home

June 14th, 2013

Just over a month ago the flight doctor took me aside as we were preparing Tatyanna for transport to the Children’s Hospital in the city, “I want you to know that I will do everything that I can to give you more time with your daughter but I can’t make any promises. There is a chance that you could lose her during transport, there is a chance that she may not even survive being intubated. She is a very sick little girl.”
Yesterday I pushed my smiling daughter into the sunshine as we walked out of the hospital together. The magnitude of that moment was not lost on me and the sense of gratitude was overwhelming. Her health remains fragile, the strands that bind her here become more gossamer with each passing moment. But for today, Tatyanna is home, blessing us with her smiles and brown eyes that still sparkle with mischief.

Thank you all for your thoughts and prayers.  The love and support that people have for Tatyanna and our family means so much.

Still here…day 21

June 3rd, 2013

Still in the PICU….Still intubated….still fighting hard.

 

and still not able update adequately.  I’ve created a facebook page that should allow for better communication.  Feel free to “like” it here:

https://www.facebook.com/TatyannasHope

Back in the PICU

May 18th, 2013

alternate post title: Because the emergency room is where every mom wants to spend Mother’s Day.  Thanks Battens for keeping it real.

Nearly one week later Tatyanna is still here in the PICU in the Children’s Hospital.  Although she remains intubated, it is supportive only and not actually doing the breathing for her.  They began lowering the vent settings again today and I’m sitting her with everything crossed, hoping that it goes better than yesterday’s attempt…..so far so good!

No wifi/cell phones in the PICU are making posting difficult but I will try to update when I can.

quick update

May 3rd, 2013

The sun may have flaked out but the amazing people of Manitoba did not. I am completely overwhelmed and humbled by the amount of support that we received at the Laps for Life last Saturday. There were over 500 entries! People of all ages (and a few canine companions) walked or ran in support of Mackenzie and Tatyanna and ultimately Batten Disease. The day was made even better by the fact that we were able to be there as a family….all of us….something that I was not entirely sure would be possible.

Unfortunately, our excitement for the day was far from over and Saturday evening found Tatyanna back in the PICU at the Children’s Hospital due to more seizures.  On the upside, since we were already in the city we were able to avoid being transferred there from our local hospital.  The staff at Children’s is becoming familiar with Tatyanna and she was very well looked after while we were there.   We are home now but it will take a day or two for us to find our groove again…photos of the Laps for Life…they are coming!

 

so very behind!

April 23rd, 2013

I feel awful.  Things have gotten more than a little dusty around here and I’m truly sorry!  I could offer a thousand excuses but truthfully they would be just that…..excuses and I appreciate you more than that.

All things considered, we’re doing ok.  Tatyanna seems to have hit a bit of a plateau and the chest issues that she has been plagued with since early February seem to be abating….maybe?   I finally feel like I can breathe….just a little…. and trips to essential places like the bathroom or more importantly, the keurig, no longer require strategic planning and much haste.

We are hoping that her health continues to improve and that we will be able to make an appearance as a complete family at this:

 

74238_10151624176320701_515250372_n

The weather looks like it will finally be spring’y….my elusive teen age crew is on board and eager and it’s going to be an awesome day!  If you live in the Winnipeg area, we would love to see you there!

(if you don’t have time to pre-register or function on a spur of the moment schedule (which I totally understand!) feel free to just show up the morning of the event…..to run…walk….or just say hi.)

 

10 on 10…the March edition

March 10th, 2013

Today didn’t go as planned.  It was supposed to be our first outing since Tatyanna’s hospital stay in December.  The lung issues that she has had over the past few weeks seemed to have cleared and I thought a trip out would be good for us all.  Note, where I live, during the winter months, “out” is really only trips to super fun places like the grocery store or the mall.  There is nothing else.  Really.  But at this point, a trip to Safeway is on par with Disney World and I was optimistic that there would be opportunities for some fun photos.  Unfortunately Battens decided to rear its ugly head and we began the day with a particularly nasty seizure, the third one in as many days.  Home it is.   Alas.

While Tatyanna slept off the effects of the seizure, Lexi decided that she was feeling the creative bug today and felt that her dad made the perfect canvas.  He did not quite share in her enthusiasm.

We decided to channel her artistic energy onto paper instead.

Looking better. :)

Matcha!

Followed by more art….

There should have been an after photo here….but I remembered….. after.  This is why I will never be a good food photographer.

Loose teeth must be wiggled…always.

Fingers crossed and hoping that next month’s 10 on 10 will feature slightly less couch.  I am so very ready for winter to be over!

To continue around the circle this month,click here to see what Tiffani and her sweet family have been up to.

conversations with Lexi

March 6th, 2013

Mom, what is the purpose of war anyways?”

“That’s a tough one to answer kiddo…”

Power, greed, corruption, resources, religion…….in my head I was rapidly attempting to figure out how to respond in a way that would both answer her question as well as giver her something to think about….and not give her nightmares.  Apparently I took to long as she looked at me, her exasperation evident,

“Can’t you just google it?”

“It’s not really something you can just look up and find one answer.  It’s more complicated than that”

“Fine, pass me your phone, I’m going to ask Siri.”

My sweet girl, if only life’s answers were that simple.

Flash back on the first, May 2008

March 1st, 2013

It starts every year about this time, the drive to go back; to return to the hazy, cocoon-like embrace of Tiantan and escape the harsh light of reality.

To watch the sun cast longer rays on the hillside and feel the first warmth of spring feels foreign and wrong.  Spring for me has come to mean cherry blossoms and gritty skies.  It means endless days filled with therapies with the occasional reprieve provided by an outing to the market or park.

We should be planning and making preparations.

For the second year in a row, we won’t be making the return trip to Beijing.  The back that we long for no longer exists.  The therapy is different, the hospital is different.  Returning would only provide more risk than benefit and  we aren’t about gamble with  Tatyanna’s life.

But it doesn’t erase the feeling of longing.

For us, back means fighting.

 

Double digits….

February 28th, 2013

10 years ago today we welcomed our daughter Tatyanna into this world. A solid 9 lbs, 11 oz with soft downy hair and enormous brown eyes, she was perfect. Little did we know that her tiny body harbored a time bomb that wasn’t set to go off for several more years. As she grew into a bright and precocious toddler we had no reason to be concerned, she met all of her milestones early, everything was as it should be. At 2 years old she could scale to the top of playgound equipment and would swing monkey like from our curtains. She had so much energy that she seemed to sparkle and the house often rang out with sound of her infectious giggle. When Tatyanna was 4 we noticed that she began to trip and fall with increasing frequency and grew concerned. This began the long process of searching for answers. On February 19, 2008 we were told that our daughter had late infantile Batten Disease. Affecting only a few hundred people worldwide, Batten Disease is considered a Rare Disease. At this point in time Tatyanna’s condition is terminal. There is no treatment and no cure. Birthdays are bittersweet. The little girl who once celebrated with gusto is now trapped inside a body that refuses to function. At 10 years old, she has reached her life expectancy.

Not only is today Tatyanna’s birthday, it is also Rare Disease Day. Batten Disease is only one of many conditions that are considered rare. Because of their status they receive very little in terms of funding for supports or research. This needs to change…. and it will! “Alone we are rare, together we will strong.” We have hope. In honour of Rare Disease Day I ask you, please take a moment to share Tatyanna’s story. Help spread awareness. www.tatyannashope.com

 

5 years ago today…..

February 19th, 2013

 

“God gives the light loads to the weak horses and the heavy loads to the strong horses”
I said: “I don’t feel like a strong horse!”
He replied: “You aren’t–your daughter is.”

-Author unknown

 

Battle scarred and weary but never broken.  Batten Disease can not win.

 

All Images Copyright | Blog Theme Created by LJP & SLR Lounge