Friday, April 14, 2017

Just another ordinary spring break for CYJCMD

It's cold in room 2803 at Sutter's Children's Hospital. There are a lot of noises coming from the monitors connected to the probes that run adjacent to Malia's face, skull, back and chest. An infrared camera slowly clicks as it turns to capture her every move though the night. Across from where I sleep glares a large white bright screen with lines and squiggles reading to me visually what her brain is saying, thinking and doing. I gasp at a sudden jump in one of the lines thinking, "is that the part of the brain that needs help?"

 Malia Diane Thomas (12.9 Years Old) has been a mystery and blessing to us since day one. She has a contagious smile that simply lights up most rooms. To say that the mold was broken when Jesus gave Malia to Chris and I would be an understatement, She has a very rare genetic disease called Baraitser-Winter Syndrome. For those of you unfamiliar with this condition, I encourage you to google more about it. Malia is one of less than 50 diagnosed people in the world with this disorder. This means finding treatments and or any leads on her potential quality of life quite difficult.

Malia has been through many surgeries, countless procedures and tests, numerous hospitalizations and has been prescribed at least 30 different medications including extensive changes in doses of those medications. She generally seems happy and joyous. She loves shopkins, playing school and driving to pick up milkshakes with her brothers. She thrives in a simpler way of life :). Her mental age of 4-5 years old will forever protect her from the worries of finishing school, applying to college, holding down a job, supporting a family and paying bills.

Her brain has a lot of malformations that explain some of her health problems. We've nearly exhausted most tests and medications to help improve Malia's quality of life. There are a few more possibilities that are much more invasive to try. These tests/brain surgeries could ultimately cut out the seizures/episodes and even help her to control involuntary violent behavior.
But before things get invasive we must first complete the EMU she is currently undergoing in the hospital. While we are here her doctor is also changing 5 of her current medications while under observation. Step 3, getting authorization to have an M.E.G. performed at UCSF. Lastly we will move to a more invasive brain procedure/operation. None of this is critical and or urgent for now. So we will take this all day by day and moment by moment.

We, (Chris, Yvonne, Justin, Clay & Malia) feel the support and comfort from so many family and friends, near and far that keep our family in their thoughts and prayers. For that we thank you very much! May you all experience the love, laughter and peace that comes from celebrating Jesus's  resurrection  this Sunday. Blessings,

1 comment:

  1. Wow, I had no idea about all that you and your family have lived through, Yvonne. You are an amazing family and Malia is lucky to be a part of it and be surrounded by such love. I will continue to keep you guys in my prayers and pray that you find the combination of medications and procedures that allow Malia to lead the best life possible. God bless.