Monday morning blues...


I'm singing a redemption song so that my Father in Heaven will have mercy on Giovanni. It's hard as a parent to make decisions that will affect him forever, and if anything goes wrong I will be responsible. So far no medication has been able to control Giovanni's infantile spasms and so the doctor's have moved onto the next level. That level where the drug is super dangerous yet we have absolutely no choice but to use it? Yup we have finally reached there and it hurts. It hurts that I'm going to give Giovanni medication that may possibly impair his vision after just a few weeks of using it (no I'm not lying I will post the link and you can check it out yourself) however I've been told by doctors it will definitely stop the spasms. Now how do you leave a decision like that in my hands? I wish the world knew the love I have for my son, I would lick the ground for him. And yes these are the exact moments when I ask God why and if I have done something wrong he should punish me and not Giovanni.

I've joined a couple of information groups about Giovanni's condition on Facebook and they've been super helpful. When I'm in doubt of a medication I just put it up on the group and I get so many responses on everyone's experience with a medication. I'm grateful for those groups, they've been supportive and helpful.

So we've started the medication and unfortunately it's not working. Now I've been trying to contact the Doctor that actually recommended it and now she isn't replying my emails...how frustrating is that? Not funny at all.  I haven't heard from her for a month now and I've even requested that our Doctor be changed due to her non responsiveness. I must say I'm pretty disappointed with that hospital and their services nevertheless I've contacted a previous Doctor we've been working with from a different hospital and I'm waiting for her reply. She usually gets back to us early enough. All these contacts are outside Ghana by the way.

But my son is a fighter. His spasms have increased but he is fighting them off daily. He's an overcomer. It's the aggressive ones that get me, because he screams and then makes a really sad face and then you know he's in pain. :-( poor poor baby.

It's a roller coaster ride of emotions this journey we are on. My days are full of highs and lows: today I'm at the bottomest low. I'm going to continue singing my redemption song though and hope for a solution soon enough...

Another Monday morning...

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