School!

Macsen aged out of the Early Intwrvention program when he turned 3. We had been receiving services with the national program since he was 10 months old. Every month a physical therapist, speech therapist and occupational therapist came to our home and worked with him for an hour. We opted not to test him for the school program in August before we left for Philadelphia because we didn't know how long we would be gone and what kind of shape he would be in. After we got back we started the paper work for the continuation of his services in the school system. It has taken until now to finally complete the process to get him in - he tested too well in physical and occupational therapy but qualified for speech therapy. The program here consists of 3 hours once a week at the Early Education Center.

Macsen was so excited to start. He wore his tiny back pack with such pride. Leaving your child for the first time is tough but when you know he will have a nurse there that lives across the street from you it is a little easier.

Update - MAcsen hada great time at school. He cried when I picked him up because he didn't want to leave! 

CHD week

Februrary 7-14 is Congenital Heart Defect awareness week. It's our week to try to help bring more attention to the serial killer called CHDs. Do you know someone in the US dies every 2.5 hours from a CHD and it is the #1killer of children under 1 here? Yet, how many commercials have you seen asking for donations to help find a cure? How many 5K races have you run for a cure or awareness for other diseases? Have you even seen one for CHD research? 2-3 million people are living with CHDs in the US right now - chances are you are one, or know several personally. Please consider donating to the Children's Heart Foundation - they fund much of the research being done to find a cure for our children. Just go to their research tab to see what promising new studies they are funding.
Macsen needs more breakthroughs to survive. His heart is not fixed - he still only has half a heart that works twice as hard to keep him alive. It only makes sense it will last at least 1/2 as long as a 4 ventricle heart. He needs this research, these doctors and scientists funded and motivated to find better ways to help his heart function. He needs them to find ways to grow him his own heart, from his own cells that his body won't be constantly fighting against like it would with a donor heart.