Saturday, February 27, 2010

Tatyanna's g-tube surgery went really well on Monday and they were able to perform the operation laproscopically. This means that there is only the tiniest incision and no stitches. Unfortunately, tiny incisions are still painful and 5 days later she requires regular pain medication to stay comfortable. We did have a few stressful hours at the hospital while we waited for our sleeping beauty to awaken in recovery. After 5 hours of coaxing from mommy and daddy, consults with anaesthesiologists, she remained difficult to arouse. Eventually we had an idea and someone brought in a Dora dvd. Apparently Dora and friends were worth waking up for and she opened her eyes the moment the intro started. Go figure.

Tatyanna adjusted smoothly to the g-tube and was at her target intake by Wednesday evening. By Thursday afternoon we were on our way home!! She still has a long way to go but I can already see a vast difference in her appearance. Her colour is better and she is so much more alert....this morning she was laying in bed, happily yelling at dora and trying to yell "Map!". Truthfully, I never thought I would see her that alert again. Physically the surgery took a significant toll on her body and she has lost a great deal of strength. Sitting up, supported, in a chair for only a few minutes leaves her exhausted. Even holding her head up requires supreme effort on her part. Over the next few weeks we will work on gradually increasing her strength and are hopeful that she will be able to return to school very soon!

Saturday, February 20, 2010

Unfortunately it has been a relatively rough week for our Tatyanna. Despite our attempts to keep her eating over the last several weeks it has become obvious that intervention will be required. After much discussion we made the decision that it is time to have a g-tube placed in order to give Tatyanna the calories that she needs to function. Over the last few weeks she has been drastically losing weight and has lost any desire to eat....despite my spiking everything with whipping cream and butter. :) Her energy levels are almost non-existant and there are times when she has difficulty holding her head up or even staying awake. We are hoping that once she recovers from the surgery that she will regain some of the ground that she has recently lost and that this recent regression in her condition is not due to disease progression. Please keep our sweet girl in your prayers. She is a fighter but I know that her body is tired and that the effects of the general anaesthetic can cause significant regression in some Batten's kids. I will do my best to post some sort of update from the hospital post-surgery.

Friday, February 19, 2010

Two years ago today we received Tatyanna's diagnosis of LINCL. In the time since, I have learned to become a researcher and advocate, I have become stronger than I ever thought possible. I have learned that it's ok to live in the moment, to let go of what or who is not important and to celebrate the small things. I've seen that there is light and hope and beauty in the darkest places and that sometimes the miracle you pray for is not the miracle that you receive but that they are all around you just have to look -sometimes really really hard. :)

As put, rather insightfully, by one of the other Batten parents, "our children aren't dying from Batten Disease, they are living with it." (thanks for the awesome quote Nikki!) I love this quote because it eloquently sums up how we as a family strive to live. I believe that if we focus on the negative then the disease wins and our losses will be far greater than the obvious. That isn't to say that there aren't bad days, that there aren't times when the pain threatens to overwhelm and the very act of getting out of bed is a supreme effort of will. I'm human, after all, there are days when my strength falters and my spirit is tired. But, I have to remember, this isn't about's about a little girl with more courage and heart than I have ever seen in another human. It's about a little girl who once radiated enough energy that she almost seemed to sparkle. It's about my sweet daughter who at the end of being poked and prodded for the millionth time still had it in her to smile and want to give out hugs to anyone around. Because of her, at this moment, I choose to aknowledge what is good. Even when things look their bleakest, there is still love and laughter and life.

Sunday, February 7, 2010

Carter's Valentine's Day Miracle Campaign

One of the first Batten parents that I "met" in the days following Tatyanna's diagnosis was Miranda. Over the months that followed we talked on the phone, exchanged emails and supported each other through what can only be called a parent's worst nightmare. We evolved from recruits, drafted by force but eager to fight, into seasoned veterans with more knowledge about "trench warfare" than either of us could have anticipated. Optimism gave way to realism and although hope prevails, neither of us is naive any longer. We know the costs, we've watched the ranks swell and mourned the losses of so many courageous kids. Kids who had to fight so hard and ultimately lost their battle. On January 17th, Miranda and her husband Neil lost their beloved Hailey to Batten Disease. She was only 7.

Although their hearts are breaking the Goranflos are committed to the fight. Their son Carter also has Battens and unless a cure is found soon, he will join his big sister long before he's ever had a chance to live. The attitude of many Batten parents is very much one of "We may lose this battle, but we will NOT lose the war" Our kids can't die in vain. A cure must be found. Please, this Valentine's consider helping in the fight. Miranda and Neil have organized a fundraising campaign. It's simple, doesn't require a huge committment and has the potential to be very effective. For the price of a box of chocolates this Valentine's Day, you could make a difference. You could be part of a miracle. Donate $10 (or whatever) and then tell 4 people to do the same. Ask that they tell four more. And on it goes! See, I told you it was simple! For more information, please go to Donations can be made through the paypal link on their website.