Monday, January 30, 2012

5th week of steroid treatment

Edmond is starting his 5th week of steroid treatment (taper dose now) to end the spasms. Edmond was spasm free from the 7th to the 23rd of January, but he had a light one on the 24th and has been having them again sporadically, about 1-2 a day, but they are at a much lower intensity than previously. We will see the neurologist on February 8th to discuss this reaction, the hope continues to be that they will stop completely, eventually he will outgrow them but there is a concern that untreated infant spasms could contribute to future developmental delays which is why the doctors continue to try to stop the spasms. Through prayer God has shown us that no matter what Edmond has to go through during this time in regard to treatments and no matter what decisions we have to make as parents, Edmond's life is ultimately in God's hands and God's plans for Edmond's life will come to pass. We take comfort in this and continue to choose to trust in the LORD for our son, but these times are very challenging for us emotionally and also can be physically draining. People like to say, "God doesn't give you more than you can handle,"... well I used to believe that,  but now I am utterly convinced that GOD TOTALLY GIVES US MORE THAN WE CAN HANDLE, I now know that's what a true time of testing is. BUT He allows it so we can learn to give it to HIM and let HIM handle it, total dependence on Him. That's the hard part, feeling the weight of something so heavy that you can't carry it at all and having to release it to God, every day, every hour, every moment of your day. And even when you release it to God, the pain of waiting, the pain of disappointment, the pain of the sacrifice is constantly there, and God is allowing the pain to be there on purpose. Wow, that's hard to swallow isn't it? God is allowing us to be in pain on purpose. Adonis and I are searching out what that purpose is, but it's possible that God may not reveal His purpose in this for some time and we know He is calling us to trust in Him. 
I recently shared with someone, "It's just hard to see your child in pain" and they said to me, "Is he in pain?" which made me stop and think about it.... and actually, it doesn't appear that Edmond is in pain, neither seizures nor spasms indicate pain, perhaps some uncomfortableness at most. I suppose it's hard to see your child not be healthy and strong as you had imagined they would be, but I am very thankful that he is not in pain. It's interesting the things you learn to be thankful for and the expectations that become frivolous when you are simply thankful that your child is still breathing day to day. That your child is able to eat, I never thought I'd be thanking God for that one. 

I also wanted to share that Adonis was recently encouraged by the testimony of Tim Tebo, I Wikipedia'd it his personal life and it says, 

"Tebow was born in Makati City in the Philippines, to American parents who were serving as Baptist missionaries at the time. His mother, Pamela Elaine (née Pemberton), is the daughter of a U.S. Army colonel, and his father, Robert Ramsey Tebow II, is a pastor.[1][10][11][12][13][14] While pregnant, his mother suffered a life-threatening infection with a pathogenic amoeba. Because of the drugs used to rouse her from a coma and to treat her dysentery, the fetus experienced a severe placental abruption. Doctors had expected a stillbirth and recommended an abortion, even though illegal in the Phillipines, to protect her life,[1] but she decided not to have one.
Tebow is the youngest of five children.[15] All of the Tebow children were homeschooled by their mother, who worked to instill the family's Christian beliefs along the way."

UM!!! Dont you love how the MIRACLE of his birth is just passed over so lightly like it's no big deal that a pregnant woman who was in a coma was revived and that a placenta abrupted baby was born ALIVE!!! Not to mention healthy, not to mention an NFL pro. Wow. I'd say that is something miraculous, THank God for the faith to trust God and have that baby, thank God for these testimonies that we can continue to cling to, not just in Bible days, but in today's world. Please keep Adonis and I in your prayers we are constantly battling our emotions, especially for me as a mother it can feel impossible at times to make it through each day. I am so thankful for my husband's strength and stability. Last night Adonis prayed that even though science is stacked against us, God is mighty to save and to show His power over all of this. 


Sharon said...

Einstein said, " There are only two ways you can live your life. One is as though nothing is a miracle, The other is as though everything is a miracle."

Some things I understand from a practical, experiential, or educated perspective. Other things I understand only because I believe miracles happen. Either way, life and all of its abundance, challenges and gifts, are miraculous to me.

I'm glad to read Edmond is having more good days, and glad to know how strong his parents and sister must be!


Sharon said...

Meant to share this blog with you...

They have a child that has aspergers, and they write about it in their inspirational blog.

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