Monday, July 30, 2012

Medication Transitions and Hope Transitions

The LORD thy God in the midst of thee is mighty... 
and He shall reign in the midst of thee with power and strength and authority...

Edmond's First Family Vacation to Groveland, CA
(near Yosemite)
Found myself singing this song to Edmond this morning. The prayer that was on my heart was simply, "Have Your way Lord." Lately, I find myself completely avoiding praying for Edmond for days at a time. It reminds me of when my father was dying in 2008 of liver cancer. We wanted to pray for him to live and not die and to be healed, but just praying this prayer would open the flood gates of emotions to possible eminent loss of someone who was just too dear to us to lose, that I would actually avoid praying for him, unable to face the wave of emotions that would overtake me.  It's the same with praying for my son, the moment I begin asking for God to have mercy on Edmond, to take the seizures, to restore chromosomes, this huge wave of sorrow, pain, grief, overtakes me and I become too overwhelmed to pray a long drawn out pray, so I simply say, "Lord, have Your way." Sometimes it's even too hard to talk about it with God, especially when I believe He knows all my ways and all the details of everything we are going through with Edmond and with Adonis and I in doing our best to care for him daily. 

I'm reminded of the scripture in Psalm 61:2 
From the end of the earth will I cry to You, when my heart is overwhelmed and fainting; lead me to the rock that is higher than I [yes, a rock that is too high for me]. (Amplified) 

Edmond having physical therapy with Alyssa and Bethany
Having faith through the storm daily is not poetic, it's not stoic or an ideal picture of heroic, it is tears, sweat, hope, pain, sorrow, grief, messy, struggle, it's being brutally honest with how mad you are at God, and still telling Him that you love Him anyways at the end of the day, because as I love to remind myself, "If God don't do nothing else, for me, He's already done enough."  And not only has He done enough, He, Himself IS enough. So, we continue to trust in Him, though we don't like it and we don't know where this road is going to lead, but we choose to believe God has given us His very best, although we cannot comprehend how it is best for our son to have this disorder, by faith we accept it and are waiting for God to reveal to us daily His plan for our good. Much easier said than done, believe me! 

Edmond's seizures have increased to 15-20 small episodes lasting 30 seconds daily. This is due to his transition from getting off of Topamax and staring a small dose of ONFI for the last two weeks. He finally starts the full dose tomorrow (Tuesday) feels like we have been waiting forever as we slowly increased it daily. The hope is that the seizures decrease and stop on this new drug ONFI and he also is continuing to take the maximum dose of Keppra that his body mass can handle per day. Both ONFI and Keppra are anti-seizure medications.   It's been hard to watch him in the transition, makes you wish we just kept him on the Topamax, where he was having mild seizures 6-10 a day but sleeping through the night. He hasn't slept good through the night during the initial doses of ONFI and has been having seizures through the night that awaken him. But we have to give it a try and keep taking steps to try to stop the seizures. 
Giants fans fitted out

Light in a messenger’s eyes 
brings joy to the heart, 
and good news gives health to the bones. Proverbs 15:30

We had a substitute therapist for the past few weeks for Edmond who was able to share with us that she had grown up with a child who was diagnosed with Lissencephaly as Edmond is. She shared that the doctor's had given a pretty bleak prognosis for the child, but that the family continued to care and believe for the best for him, and he was able to be potty trained at 10 years old, walks and talks and is now 17 years old. I believe this story inspired hope for Adonis and I where we had lost it. And even though the extent of lissencephaly on the surface of the brain varies from person to person, and Edmond's brain may not be comparable to this child, the good news was very much welcomed. I felt as if a little seed of hope was planted in our hearts and over the next weeks, I felt that the seed grew into strength to continue on.  This has brought me to the ultimate conclusion that a little hope can go a long way, and it is far better for us to hold hope in our hearts to make it through each day, than to live each day too afraid to have hope for Edmond. I think in our human mind we try to protect our hearts by rejecting hope, but hope is the ultimate protection for our hearts and to help us to live each day able to enjoy what we can. So thank God for the good news that was brought to us. 

I'm reminded of another scripture. 
God's word promises that through struggle we will find hope and that hope will not disappoint us.  Romans 5:3-5, 

And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope. Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us.

Hope will not disapoint us. 
So keep Edmond in your "hopes" and prayers. 
- Candace 

Tuesday, July 10, 2012

Happy 1st Birthday Edmond Daniel!



Edmond turned one years old this past Saturday. Below are pictures of his first birthday party :) We are so very proud of him. Update on things is that he continues to be on two medication for seizures and has continued to have 5-8 seizures daily. We are considering stopping the Topamax and trying a medication called Onfi, but it has only been on the market for 6 months so that's kinda scary and it is for a specific condition called Gestalt Syndrome I think. But I think they just try all kinds of stuff on Edmond to see if anything works since there is not a medication tailored specifically for Lissencephaly because it is so rare. Edmond had to increase the Topamax and has not had the weird side effects that he had when he first started it, so that has been good, only it isn't stopping the seizures. From my understanding I keep being told that some children suffer from many more seizures daily than Edmond does, so I never know what my expectations should be. Right now he continues to grow and eat, and the seizures have not interrupted his ability to eat, but they do limit his active hours because he gets so tired from them that he doesn't want to be awake and play, and that's never good. We will probably have to try out the Onfi and see if it helps him. At this point, since more than 3 medication treatments have failed with Edmond, he is eligible to receive VNS therapy, which is like a pace maker that they surgically insert under his collarbone that sends impulses to a large vein in his neck that is directly connected to the brain and this method has been proven over the last 20 years to reduce seizure activity, I think this would be an option we would turn to if seizures became constant and uncontrollable. There is also the ketogenic diet which is a high fat diet, but I haven't been very interested in this because it doesn't seem that there is a high chance it would really help Edmond. You never know until you try but we haven't seen much results with short term therapies such as the steroids that are supposed to produce longterm results and it is really hard on Edmond those types of short term high risk therapies. Alot to consider.

Thank you to everyone who joined us for Edmond's party, we had a great time connecting with family and friends and showing off the kiddies. I probably did go a wee bit overboard on the theme with treats and decorations, but honestly it was like therapy for me to be able to make the details special and focus on happy party stuff instead of seizures and sad stuff... little bit of an escape for mom, so excuse the excess, but I had fun trying to do homemade train cookies and cake pops etc... 

If you scroll to the bottom there are pics of Edmond doing some of his vision and physical therapy. 

Homemade Thomas Cookies 



Cake by Mitzi Cakes, oreo cookie cake yum! 


My cake pop train display! 






Special Appearance by the Eden Express :) 




Uncle Enzo

Lola and Lolo, couldn't have done this party without all the grandparents' help!
Including Papa Mark, Grandma Carmen and Ama Liz (who took care of the kids for most the party) 
Papa Mark, Grandma Carmen and Edmond D. in his ray bans


The Wonderful Grandma Liz and Auntie Tricia

My lovely guests the Vinculados... minus Isaiah

Beau, Fran, Steve, Keith, and Jesse, my husband's support group :) 

Spooners, we love you guys :) THanks for not being a flake like me. 

Auntie Kelly, the Eden Express, and Bot Bot ( my lovely grandmother Wong) 

Eden and Lyvia try to high jack Arianne's Bike!!! 

The cousins chillin the shade. 

Edmond D. getting his lunch from Auntie Kelly in the shade with his Goo Pa Sandra. 

Caleb schooling everyone on how to bust up the Pinata

Sweet Isaiah and his mommy

Uncle Ellis TCB, taking care of business!!! 



Here are some recent pics of Edmond doing his in home therapy with his physical therapist Alyssa and also pics of him doing his vision exercises with his light box contraption that helps him to focus on objects as he has visual impairment due to his brain condition.