Friday, May 16, 2008

Not much of a break, I know

The allure of the blog. The pull. The reality that this blogging really is therapy. That and the out pouring of love and support that lets me know, on some level,that it would be selfish to not post about Zoey, about us. As pointed out to me quite eloquently in one comment ,people have come to love Zoey and care about us. So here I am. Needing to post. Wanting to post. Feeling that a few days has made a bit of a difference. The reason, I can't put my finger on. Way too short of a time to have processed it all through, however, feeling that for this moment ,I feel some peace. As I wrote to a friend today, I have no other explanation but to believe it has been God's work. Some might say denial of sorts, I choose to say His peace. There is that peace thing again. That quest I have been on. Maybe I actually have come to that place. God' grace. His presence. Maybe temporary, but for the here and now, not a bad place to be. Our little Zoey has found some peace also. The last two days she is a COMPLETELY different child. More of our little Zoey. She has gotten into the groove of the new medication, Topamax. It was only the initial dose that zonked her out. We are getting ready to ramp her up for the 3rd time and we hope she adjusts as well with this increase, as the last. She is sleeping much better. One good thing about Wednesday's visit was that we could end the ACTH 3 days early. No more injections and that feels amazing,for me and her. Her personality change is nothing short of a miracle. She smiles all the time and has started to giggle..... all the time!!! She never giggled before, EVER! She was back to rolling today also. What a difference a few days has made for BOTH of us. We are trying to enjoy each day for what it is. Knowing that the seizures could and probably will get worse. Knowing that the Infantile Spasms can and most likely will, if we can't rid her of them, rob her and us, of all the wondrous things I just mentioned. That is why they refer to Infantile Spasms as a catastrophic form of epilepsy. But for the last two days I have to believe that God is giving to us little gifts and hopefully glimpses of what will be if we can get a hold of these seizures. Which brings me to our game plan. The very day we received the news of the recurrence of the abnormal brain waves , our fabulous neurologist and pediatrician began the process of getting us into Dr. Shields at UCLA. UCLA is one of the premier centers for treatment of epilepsy and they were the pioneers of the Total Hemispherectomy. I heard from UCLA the very next morning,started the necessary paper work, received her medical record number and should know early next week if and when she can get in. We have to pray for when, not if! Unreal the pace at which it is going already. We know that if we can get to UCLA soon we will either include or exclude surgery as a possible option. We also will be meeting with the surgeons at Children's. They have a more conservative approach and would most likely recommend a Functional Hemispherectomy. Meaning only the removal of the damaged portion of her right hemisphere rather than the entire half. UCLA has a more aggressive approach and would more then likely opt for the latter. The sooner we know, the less time we stay in limbo. And everyone knows how much I love limbo. We are all doing far better then we could have ever imagined. That does not mean we are not filled will fear of the future. However, we MUST continue to trust in God, trust in ourselves and trust in this remarkable child who guides us with her courageous and resilient spirit.

*How do you like the ACTH chubby cheeks?


Dawson said...

God bless you and thank you for letting us know whats going on. God has given you such amazing strength. There is no place greater than to be in the middle of God's grace and peace. As was told to me once, I think God if fixing to show you just how truly BIG is. We are praying for miracles and wonderful things for Zoey

Dawson said...

Just to fix what I mistyped...I think God is fixing to show you how truly BIG he is.

Dustin said...

I emailed you the other day I'm not sure if you got my message. I am thinking about you and your family a lot. I'm praying for you as well and for little Zoey. Please let me know if you got my email. If not, my address is



Reagan Leigh said...

What a precious picture!! I'm so glad that Zoey is back to her happy little self!! The giggling is wonderful, I know, Reagan did it the other night and turned a horrible day into a great day just like that! I pray for God's guidance for you and your family as you make these important decisions for Zoey. And with the help of Dr. Shields and UCLA, I don't think you could have better people leading you!!! Take care and keep the posts coming!!