Tuesday, August 31, 2010

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.

17 comments:

  1. Brien and Holly. Please let us know if there is anything that any of us can to do support you more. Holly...If you need ANYTHING for work...any additional support at all, let me know. I would be more than happy to volunteer my time in the evenings after I am off work. Testing, reports, etc. You name it. Love you and prayers for all! Andrea

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  2. Holly and Brien, you are the strongest people I have ever met. I am so proud of both of you! Thank you for this blog. I know I'm very far away, but if there is anything I can do, please let me know. I'm constantly praying for all of you. Love Patti

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  3. Holly and Brien.... Thank you for sharing Gracie's story. I wish there was more John and I could do for you three, but this distance is horrible. You are the strongest people we know. Grace is SO incredibly blessed to have you as her parents. We love you all....

    Tiffany and John

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  4. what a Beautiful Blog for Grace and for your loved ones to be updated on Grace ;-) we all love you and Holly so much and we are thankful for being blessed with such good friends like you and Holly...what a perfect Name for Grace because she has Graced Us all with her presence and even If her life is a short one she is here for a purpose...one of those purpose's is that she has brought our group of friends closer and has shown us to appreciate each other and to be thankful for the friends and loved ones in our lives, i know she has done that for me...i am here for you anytime you guys need anything, and as a parent who has lost a child i will keep you and Holly in my positive thoughts and prayers daily and forever <3 i Love you and Holly and baby Grace and am always here for you XOXOXO

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  5. Gracie could not possibly have two better parents. Your decisions were brave and very selfLESS. I can't imagine the soul searching you both must have done to creat a plan. I am thrilled that you are at home and hope that your hospice workers provide you with the support you will need today and in the future. We love you all so much and are so proud of the stability, maturity, and, appropriately, GRACE, you have shown through this life changing ordeal. Your candor and sensitivity should be a lesson for us all. We wish we could be closer to provide more direct support, but please know that we are with you always in spirit.

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  6. Thank you both for having Alex and I over last night to meet Gracie. What a doll! Despite everything, there is something wonderful about being in the presence of life at such an early stage. I could sit and watch her all day. She is beautiful, and amazing...just like her Mom and Dad.

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  7. Holly and Brien, you two are the most beautiful people that can touch others lives. I am very fortunate to have you as friends. Gracie is a beautiful lil baby girl that has the most kind-hearted and wonderful parents anyone could ever ask for. I know you two have made enormous decisions that most of us parents would never comprehend the magnitude, or what it even takes to be as strong as you two are. The kids and I continue to pray and send positive thoughts your way. We love you all! Thank you so much for writing this and allowing us to be a part of this journey in Grace's life with you. Love Stephanie and the kids!

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  8. Hi Brien & Holly, I know you both don't know me, but my name is Jaymz and I'm a friend of Stephanie. My heart, thoughts and prayers go out to the both of you and baby Gracie. It saddens me how this could be happening and the decisions you've had to make I'm sure have been extremely difficult. I do understand about making difficult decisions (reguarding my Mom) and I just want you to know that I'm deeply sorry. Stephanie has been updating me and I'm much appreciative for that and she holds you all in the highest standards. May the Lord bless you and keep you strong. I know sometimes sorry doesnt seem like enough, but I most truly am! Blessings...

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  9. Please be ever hopeful I have known two situations very similar where they had only 2 months 2 live or were told they would never walk or talk and they are both thriving adults today. You guys have the strength to show the medical community that miracles happen every day. Grace is a miracle happening in our prescence. Love Granny, who is too far away in miles, close in thoughts

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  10. Holly, this is Cathy Zadrozny in St James. I have been following Gracie's story through your mom on FB. My heart breaks for you and Brien and I pray God will bless and comfort you in this difficult time.

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  11. Holly and Brien, I know that God gave Gracie to you because he wanted her to have the best parents for her time here. I just want you to know that I think about you guys all the time and my heart aches for you. Your strength shines through and is truly an inspiration to me. Whatever happens, little Gracie is a true miracle. You are all amazing.

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  12. This is such a great idea! I look forward to keeping up on Gracie's status daily. I know I have never even met any of you, but my thoughts & prayers truely are with you all everyday. I look forward to meeting you soon! I admire your strength & courage through this heart breaking time of your life. You really are an inspiration to all!!! Being also on the medical side of it, I admire your decision in how you choose to continue Gracie's days. Such a hard decision & one NO parent should ever have to make. Choosing to give Gracie the best quality of life while she is here is more then admirable & shows just how much you both love her! My thoughts & prayers are with you daily.....

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  13. Around 6pm today I took Grace to church with me. We spent one hour and I was getting to know her by her picture. During the hour, I became very emotional in a good way. I pray for her everyday and I know God will take care of this little angel. God Bless, Bill

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  14. Brien and Holly, Thank you so much for sharing Grace's story. She is an angel sent from above and she has chosen the perfect parents. I so admire your love, strength and courage. As always, we are here to support you and offer whatever you may need. All of our love to you and our little baby Gracie.

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  15. Holly and Brien and Gracie,

    We read your blog. What can we say? You guys are amazing. God has brought Gracie on this earth for so many reasons. We are confident that with your strength and faith as well as the support of your family, friends, doctors and hospice team that Gracie will have the best life possible. Further that she will make it against all odds and grow into the beautiful Grace we have come to know and love. We're so proud of your decision that Gracie belongs at home with you not in the hospital. We will continue to keep you in our daily prayers, in our hearts and always on our minds. Please let us know how we can help. Just say the word and we're right there. You are a true inspiration and the most amazing parents we've ever known.

    Blessings and love, Patricia, Mark and Audrey Decker

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  16. God has chosen two angels to watch over and love little Gracie. He could not have chosen better angels then the both of you. I will pray for the three of you everyday I love you , DAD

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  17. What a wonderful idea to do this . . . great job you guys! We have been smiling ear-to-ear since we got the news that our little Amazing Grace was headed home. I could go on and on, but really I'd rather refer you back to re-read the words that Kelly wrote . . . her comment says it all for us, among the many other heartfelt and inspiring words of encouragement that have been posted by others. Love you guys! Audrey & Russ

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