February 18, 2015

Walking - February 18, 2015

Just another day at school for Ethan! Before I got there to pick him up he walked across the room (est. 12 independent steps in a row)! We are so blessed by all of the teachers, therapists, and support staff at Valeska Hinton. This mom is praising the Lord for the strength and skills our little guy has regained and for those that he has achieved for the first time since we started Valeska in July.

February 17, 2015

Raising Money for the GFPD Conference Scholarship Fund

GFPD's Family & Scientific Conferences are a lifeline for our family and families like ours.
  • Families impacted by PBD-ZSD learn about the latest updates in PBD-ZSD research and treatment options from the top PBD-ZSD specialists in North America. Additional topics such as options for family building after a PBD-ZSD diagnosis, medical & educational advocacy for children with PBD-ZSD, pediatric palliative care, and self-care are also covered.
  • Children impacted by PBD-ZSD have the opportunity to be seen by the PBD-ZSD experts in the GFPD/PBD-ZSD clinic held at Omaha Children's Hospital. While we know that these doctors don't have any "miracle" cures, it is important for us to know that Ethan is being seen by doctors who specialize in PBD-ZSD and that we know that we are doing everything we should be doing for our son. The information that is collected from the children who attend the clinic, such as medical history, past and present symptoms, DEXA scans, OCT scans, blood work, etc., provide the doctors with much needed data to help develop a greater understanding of this complex disease.
  • Parents who have had a child(ren) pass away from PBD-ZSD get the chance to embrace others who truly understand their grief and new "normal."
  • Families get to spend a couple of days surrounded by other families who understand this disease and "get it." Individuals who have spent months or maybe even years connecting online and/or on the phone get an opportunity to actually meet in person. In the past we have had families from as far as Australia and Iran attend our conferences!

The cost of attending the GFPD Family & Scientific Conference can vary greatly, depending on travel costs and the size of family, however for a family of 3 like ours who will be driving from IL to NE we estimate that it will cost us roughly $1,000. Families traveling from outside of the US can easily be looking at costs of $5,000 or more. As you can imagine, many families simply can not afford to attend the conference without outside support.

I'm asking for you to consider making a tax-deductible donation to the Global Foundation for Peroxisomal Disorders that will help our family and others like us attend the GFPD Conference. Since Ethan's diagnosis the GFPD has become a second family to us. GFPD connects more than 200 families from over 20 countries and it is my desire that any family who wants to attend the GFPD conference would be able to do so without it being a financial burden.

To learn more about how you can donate online or by mail, please visit the GFPD website.

Working Hard and Having Fun at School - February 17, 2015


    Ethan's teacher, Mrs. Herman, was so proud of how hard Ethan was working today. He's been listening, giving her a conditioned response, and today he made some very purposeful sounds!

February 5, 2015

PT in the Pool - February 5, 2015

Ethan had a blast during PT today. He worked hard for Ms. Erica. He "swam" kicking his legs and using his arms. He did a ton of weight bearing/standing, took some assisted steps and even attempted some independent steps. He loves the water and his favorite toy to play with in the pool is a pinwheel! He wore his CI in the water for the first time today, and he did really well with it.

I'm ready!

Ethan has only been working with Ms. Erica for a month, but you can tell they are already developing a special bond.