The road ahead

We created this blog as a way of disseminating information about Grace to our friends, family, colleagues and supporters. As many of you know, Grace has had a difficult start to her precious life. We hope this page will serve as an insightful look into Grace’s Journey.

On August 23rd, Gracie was diagnosed with a very rare seizure disorder called Early Myoclonic Epileptic Encephalopathy (EMEE). This neurological disorder inflicts roughly 1 out of a million children. Grace is only the second patient our neurologist has ever seen with this disorder. None of her other doctors have ever seen it before either. You can Google it and find maybe a couple dozen or so links, but they’re mainly written by neurologists for neurologists. So trying to truly understand the diagnosis has been very challenging.

Her EEG shows what's called suppression-burst pattern, which are micro-seizures lasting 1-2 seconds every 10-15 seconds. Many times these seizures aren’t even recognizable by looking at her. But more importantly, it's what’s going on in between those micro-seizures. Sadly, this is not so good. Her brain waves are fairly flat in between the seizures. This means there is very little brain activity going on. Therefore her prognosis is very poor. An estimated 50% of children with EMEE die within the first year. Unfortunately no one can give us a very good estimate of her life expectancy. She could live weeks, months, or maybe even years. Regardless, it's unlikely she'll develop cognitively beyond 6-months and therefore, she will suffer from mental retardation. To what extent is unknown, but the prognosis is very poor.

As a byproduct of the neurological disorder, she also suffers from Chronic Hypercarbic Respiratory Insufficiency, which is not allowing her to purge the excessive CO2 out of her system. Fortunately, her body is compensating for the high CO2, but that will only last for so long.

As for what brought on the Early Myoclonic Epileptic Encephalopathy, we don't know. All of her tests have come back good including her MRI and genetics testing, which looks at several hundred known syndromes. On Monday, the doctor did another extensive blood draw for DNA testing that will go out to four separate labs across the country. It's unlikely we'll get any results for a month or two.

Ultimately, we had to make some life altering decisions. The only way we could safely prolong her life would be by having a tracheotomy and putting her on a respirator (life-support). If that would of happened, her brain would have no longer thrived to breathe.

So after much consultation, soul searching and discussion, Holly and I have decided to bring Gracie home with us now. We have been well supported by our decision by all the medical professionals involved and those close to us. We feel the best place for Grace is home with us, where we can love her and take care of her the best we can while she's with us.

We are now working with the UC Davis Hospice program to provide support and resources. Gracie will be on oxygen at home, she has a NG tube for feeding and suction pump to help keep her clear.

As bleak as all of this may sound, Holly and I are just happy to be home with her. We have had the worst two weeks of our lives. Without our ability to communicate and share our feelings we couldn’t be where we are today. Our strength resonates off of each other and we know we are making the right decision for Gracie and us.

I would also like to thank all of those who have offered your help and support during this difficult time. Your generosity has been overwhelming and we greatly appreciate it. There is no way we could have made it through this without your love and support.