Monday, August 20, 2012

Update for August 20th, less seizures for 8 days!

Edmond has been on Onfi for around a month's time now. He began responding better to it on August 8th, alertness, less seizures. On August 11th we saw no seizures. In the past 9 days since then, we have only observed 3 small seizures. Very good news for us and for Edmond. There are some side effects however with eating, it seems his skills are not as sharp although he still eats and drinks, it is a little difficult to get him to be still and focus during feeding time as he usually does. His sucking skills have changed, he is still sucking but not as well as he was before the Onfi. We are hoping this may be in part due to the cold he had , but we also saw this kind of side effect happen with the previous medication, the topamax. Once his system was used to the topamax, his eating and drinking skills improved back to normal so hopefully this will be the case with the Onfi as well. Edmond is now on Onfi and Keppra. We are all recovering from a nasty cold virus, Edmond seems to be recovered more than we are. He slept for 3 days straight, only awakening to eat and take his meds. I think all the resting helped him recover. He's feeling better today. 
Mommy posing Edmond like a big boy

I was able to recently join a facebook website for Lissencephaly Parents and have had great conversations with other parents around the country and world. It has been a great resource but also very sad and difficult to read. Many parents talk about their kids using G tubes or having worse symptomology and seizures than Edmond does and you feel blessed that he is not going through that, but also fearful that he may have to face other things in the future. People post their joys and their pains, their triumphs and their losses, so it is a very emotional website but also one where we can be open and honest and talk about how lissencephaly has affected our lives, so it has been very helpful and other parents are giving me much needed advice for this journey with Edmond. 

Great Grandma Wong  "Bot Bot" with Edmond
We know that God has His best in store for our family, and that Edmond is presently God's best for us. Jesus is ever present and near to us in this time, I wish I could personally sit down with each one of you and try to explain it, but I pray that God will be near to you in your present situation in the same way so that you will understand the height and depth and fullness of God's love for you in your life too. Sometimes it's easy to feel that God has forgotten us as we struggle daily with Edmond's seizures and with raising two young children and one with special needs. But I have been relying on this verse from Isaiah 40, 

"Why do you complain,  Why do you say,My way is hidden from the Lordmy cause is disregarded by my God”?28 Do you not know?  Have you not heard?
The Lord is the everlasting God, the Creator of the ends of the earth.
He will not grow tired or weary, and his understanding no one can fathom.
29 He gives strength to the weary and increases the power of the weak.
30 Even youths grow tired and weary,and young men stumble and fall;
31 but those who hope in the Lord will renew their strength.
They will soar on wings like eagles; they will run and not grow weary,
    they will walk and not be faint.