December 9, 2009
I made a few phone calls today and scheduled an appointment with one of the doctors in St. Lukes Hospital. Hopefully she still administers the ketogenic diet and takes Ate as a possible candidate.
Ate had another Kindermusik trial class today with Teacher Ana Castro. I already scheduled this for her last week. I had spoken with Teacher Ana over the phone just to inquire about it. We spoke for an hour. She casually opened up to me about how she became a Kindermusik teacher. Her child has special needs. She had left the corporate world to become fully dedicated to this. Naturally, I also opened up to her about Ate’s condition. Immediately I knew I had to take the class with her.
Although Ate and I already took a demo class with another teacher last Saturday, I still decided to attend Teacher Ana’s class. And of course I found her very warm and accommodating. Today, we sang You are my Sunshine. And while I sang off key to me child as she breastfed from me I cried as I sang, moved by the simple yet piercing words. We were asked to replace the word sunshine with the name of our child and so I sang,
You are my Ate, my only Ate
You make me happy when skies are blue
Oh you don’t know dear, how much I love you
Please don’t take my Ate away
Each time Anya had a seizure, she seemed going further and further away from me. The seizures were taking her away from me. She became aloof to the world around her. Almost not receptive to anything at all. Or at least she could not show it with simple coos and smiles.
My husband and I have been looking for that smile and laugh she once had at about 3 months. She hasn’t smiled at us nor looked at our face. It always seemed that she just looked through us all the time. And her eyes wander around aimlessly.
Today at the trial class, she uttered some sounds and reacted to the Kindermusik scarf and rainbow makers. That simple, “uh” she said a few times really started my day right. Except of course for the episode she had earlier today.
Earlier today, Ate woke up and started stretching her arms and kicking about. I prayed to Mama Mary to hold her, protect her and not allow any seizures to happen. Infantile spasms usually happen around the waking hours of the baby. And I was already anticipating it.
As I held her and stroked her, I kept praying to Mama Mary to protect her. When several minutes had passed I knew Mama Mary was holding her hand. I prayed, “Mama Mary, please ask the Lord to spare her from a seizure this morning. Use your faith not mine, your devotion not mine. Because my faith and devotion are so weak and lacking.” As I said this, Ate was spared from her seizure. Because I had rested my faith on Mama Mary’s faith. But when reason came in … “she has to have her seizure, it has to happen, it’s bound to happen…” I started losing faith. And then the seizures started almost instantly.
Again I prayed to Mama Mary loudly. And after 10 or so spasms, the intensity started to wane. It reached 20 spasms, but it gradually lessened in intensity. I thanked Mama Mary for stopping it.
And then we had Kindermusik! What a wonderful morning!
Before going to the pedia neuro, we went to Oma and Wowo’s house for lunch. Luckily Marita Gomez was there. I had been wanting to talk to her over the phone. Now we sat at Oma’s lanai and exchanged stories on the challenges we faced with our children. Her eldest child had also seen the same pedia neuro because was a bit delayed. She promised me more contacts and even some music cds to help Ate’s development.
I asked Dra. Butler about the ketogenic diet for Ate. She said that was for extreme cases if the drugs we are using now do not take effect. Although she told me that the kind of condition Ate has will be a difficult one. She personally does not subscribe to it, but Dra. Fojas has used the very strict ketogenic diet on several of her patients. I’ll have to ask her about that when she gets back.
Wowo called me this afternoon. And told me that he has prayed to many saints to intercede for Ate. But he was told to focus on one so that that saint would take charge. He chose Blessed Bishop Alvaro. Oma had also told me this morning to pray to him and ask for his intercession. Also my French. So I guess we have decided. I will ask Ate tonight if we can help Blessed Alvaro by praying to him. When Ate does get well through the help of Bishop Alvaro, then we are a testament to his becoming a canonized saint.
So Ate, who will we help become a saint? Ate now has a very important task – to have a saint canonized. We start today.
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