Saturday, February 11, 2012

Edmond is 7 months old...

Edmond turned 7 months old on February 7th. It appears the prednisolone steroid treatment has not been successful as Edmond has started having spasms again as of 1/24, although they are lighter and less. We are hoping and praying they disappear by the end of next week, which is the last of his taper dose. Edmond had an appointment with his neurologist yesterday and we discussed possible beginning him on a medication called Sabril, which is not a steroid, but has a 30% chance of causing peripheral vision loss. Kind of scary, but we will have to weigh out the risks and the benefits carefully. We are praying about it. The neurologist stated that most babies outgrow infant spasms around 12 months, however they could morph into other types of spasms without treatment, but again, there is no guarantee that the Sabril would work. 

Our pediatrician called us on Sunday, the morning of the Super Bowl to let us know that he came across a doctor at Stanford who specializes in metabolic/genetic disorders and wants us to see him about Edmond. We love our pediatrician, he's been such a blessing to us. It seems this Stanford doctor deals more in what the causes of Edmond's condition, rather than actual treatment, but Adonis and I are definitely going to meet with him and see where it leads. Edmond is also scheduled to have blood work done along these lines as soon as I get the courage to bring him in to the lab for the blood draw, it will determine if this is in fact a genetic condition. 

On a happy note, here's Edmond showing the stuff he's made of a he is doing his head/neck exercises on the floor. His physical therapists have commented that his neck strength has been improving over the last couple of weeks as well as his upper body strength and arm/hand response is progressing. You can see that he is able to hold and lift his head now. He continues to work on head lag and rolling. Also there have been no seizures. Yay!

If you are praying for us, THANK YOU! We need it more than ever. I am asking God for mercy, multiple times a day and for this journey to be a FAITH builder for our family and for others. We know that our "Papa" God is with us and for us and that he has allowed this trial in our lives for a reason that we don't understand. I have to continually fight my mind and the questions I have about "how did this happen?" or "what could I have done, or not done differently" during my pregnancy. I ask God for mercy to bear this burden and acceptance and peace over my mind to let these questions go, but I'm pretty sure these are all normal feelings to process through. Edmond is such a joy, sweet natured boy, and super kissable... poor kid probably thinks kisses are like part of the atmosphere of earth, he get them so much.   We are searching for the PURE JOY that James talks about in the book of James. 

"Consider it PURE JOY, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. James 1:2-4"

Mature and complete, not lacking.... that's sounds pretty good... if only we could go through life without doing the testing and perseverance to get to it. 

Here's another picture of little Edmond in his fatigues.... God bless you in whatever trials you are facing today. May you find the strength to persevere through the process and trust God.