Home is where the heart is. I’m not sure who coined that phrase, but it couldn’t be more true. This week was all about being home with Grace. With all the bad news and challenges we’ve had since her diagnosis, being at home with her has been the lone joy. Holly and I have been very happy to be home with her and seeing her in a more comfortable environment.
Our first week home has been challenging on many fronts. Holly and I have been resuming business operations and our respective responsibilities. We’ve been adjusting to the Hospice services and learning how to navigate through that process. And we’re also seeing Gracie’s seizures manifest physically.
A day after we came home we finally saw our first seizure. It was very disturbing to us to see her this way. But it also helped us recognize what they look like. Even though she was diagnosed with EMEE (Early Myoclonic Epileptic Encephalopathy) nearly two weeks ago, we’re just now starting to see the physical effects of the seizures. I believe her diagnosis was identified even before it manifested to where it is now. Although I doubt the early detection has served any useful purpose, it has given us more of an insight to what’s going on with her.
During the first seizure on Tuesday, her face became flush and her head was tilted back while her eyes were wide-open. Her right arm was raised and her left leg was straightened out as both jerked in a slight rhythmic pattern. This rhythmic pattern was what really keyed us into the fact she was having a seizure. She made very little noise during the brief (10-15 seconds) seizure. Afterwards, her body relaxed and her normal coloring returned. Although it was alarming to us, she seems to be OK afterwards.
The following day she had another one and by Thursday we saw four. What’s concerning to us is she’s generally quiet during the seizures so we’re not sure if we’re missing some too. Even with a video baby monitor and close proximity we could be missing some of them. The one correlation we have made is they appear to only be happening while she’s awake. When she’s asleep she’s in a very deep state with very little movement or activity.
Obviously we contacted the neurologist who doubled her seizure medication (Keppra). Unfortunately, as previously discussed, seizure meds are fairly ineffective against this type of seizure disorder. So we haven’t seen it get any better. Since Thursday we’re seeing about 2-3 a day. As much as it pains us to see her having one, it’s comforting to see her come out of it and not appear to be in any pain or discomfort. We don’t know if she’s more out of it then normal during these times. She just looks at peace.
I think it probably affects Holly and I more then anything. It’s just so unnatural to see such a beautiful young baby having a seizure. It’s like seeing nature going awry. She’s so innocent and pure it pains us to see her going through this. Not to mention the realization that this is probably just the beginning. I wish there was more we could do, but sadly there isn’t. All we can do is continue to be there for her, take care of her and more importantly shower her with love, kisses and hugs. We love our little baby so much.
Brien,
ReplyDeleteThe Lopez family thinks of you all frequently through our days. We stop and talk about Gracie and we take the time to say prayers and send positive thoughts. Just know you are surrounded by our love and friendship. Love Stephanie and the kids.
Holly and Brien and Gracie. Mark and I talk about you daily and continue to keep all of you in our prayers. We also have taken several walks in Gracie's honor and feel at peace knowing she is at home. We have a gift for Gracie and would like to come by to drop it off but only if it is appropriate. Otherwise, we will mail it- as visitors right now may not be feasible or wanted. Your stories and updates continue to keep us aware of what is important: Gracie's health and happiness. And that she is home with you where she belongs. Our hearts simply ache at her diagnosis and all of the struggles she is facing. But we do know one thing: God has a plan for Gracie and we know He will see you through this. Love PJ, Mark and Audrey Decker
ReplyDeleteHolly and Brian,
ReplyDeleteI too think of you and Gracie so often. I pray for comfort for Gracie and the two of you. I took a walk by the lake in honor of Gracie. I think she would have liked it. There were so many sounds and sights and beautiful colors. I'm happy to hear that Gracie doesn't seem to be in any discomfort during her seizures. I hope hospice is a great help for the 2 of you. All of you are in my heart and prayers.
Love Patti
Wow. I have been out of the loop and off line. This news brings great sadness to my heart. She is such a precious gem. I know that there is more hope than the doctors give. I will do what I can to help. My experience with seizures is very different from Grace's. Touch and soothing voice sounds (it's the vibration that is healing) will be very healing for her. I will contact you soon. Don't give up hope! They wrote me off and I am seizure free now. It's a journey.
ReplyDeleteHi Brien and Holly. I read your blog for the first time today. My friend at work knows Holly due to her son taking speech therapy with her. I am so sorry for what you are going through. My heart breaks for you all. Gracie is such an amazingly beautiful and strong little girl. I understand your heartache and fears. I have a 2 1/2 year old that has an undiagnosed seizure disorder. We have been fighting it for 2 years. She has left frontal lobe brain damage due to her seizures. As parents watching your child fight, is heartbreaking. I will pray for you all everyday and if you need anything, please let me know.
ReplyDelete~Kerri