Friday, August 27, 2010

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John, I hope.

On Monday night admitted to John. Arrived at the clinic with a very high carbon dioxide in your blood, so they had to put the respirator so that you can remove it.
It's been 4 days and still can not breathe alone. We do not know what happens. Just do not breathe. Today at times seemed he wanted to start, but it costs.
The doctors say we have to wait, but the wait at times desperate.
At times I am filled with sadness to see that you can not, and think about how become life again on a ventilator at home. I ask God all the time to increase my faith and give me your peace, that I experienced so many times.

Today I read in one of my favorite books something that helped me get through this day:
¨ faith is believing in something for which we have no absolute proof. You stand firm when the evidence is telling us that we give up. You decide to trust Him when you have not answered all the questions and even promised us a life free of suffering. ¨
want this faith in my life.

John, I hope.

Sunday, August 22, 2010

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One more, and go ...

Yes, again John ill.
on Friday began with a lot of mucus, but many eh! And after that, the usual: upset, bronchospasm, oxygen, a slight fever, antibiotic, hours and hours without sleep ...
came home this afternoon to do a chest X-ray, the doctor said not so bad, it is runny but not pneumonia. That's good. But fear is to fall asleep from exhaustion and having to start breathing pauses, which is common in it ... The pediatrician told me to wait, to control it, which I set as breathing. How else do it all the time!

newfound sleep.
I wonder if this time you can sleep and breathe at the same time?
That's what I pray to God!
not want to intern.
Pray for John.

Sunday, August 15, 2010

Do Models Still Have A Period

The value of a smile!

These days I read in various places on special mothers that their children have turned to smile, after days or months to do so. And I kept thinking about what is good for us that little grand gesture of our babies.

In John smile tells me that it feels good, that is comfortable. One of the ways he has to communicate with others! It is his way of saying: "Mommy I'm fine! ° as the miss those days of fever, pain or discomfort does not appear, try as I do!

I think any parent enjoys watching her son smile, but the smiles of a special child, are extremely special. At least for me, is what I need to see each morning to start the day!

life alongside Juan taught me this, to enjoy the things that seem small, but they are not. A focus (or try to do it ...) on the positive, what I really full.

much I have to be terribly depressed and anxious! but every time I choose the opposite! Thank God I can watch my son and tell him do not change it for anything each of their smiles!

Sunday, August 8, 2010

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Child!


Happy Day John!

Monday, August 2, 2010

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A special order.

two months ago, approximately, I received a mail from a mom who told me he had read the story of John on the Internet. Surely wrote Ohtahara syndrome · ¨ in Google, and so we found. She is Soledad, the mother of the little Lion of 7 months, who also suffers from this terrible disease.
was hard to meet someone who is just starting to walk this difficult path. I relived those early months of John's life, when all was uncertainty, pain, fear. But above all I felt the need to help de alguna forma. Se por lo que esta familia está pasando.
Siempre digo que me hubiese gustado tener el apoyo de alguien que haya vivido esto de cerca, cuando me dieron el diagnóstico de Juan. Alguien que me diga que yo iba a poder salir de ese estado de shock. Ahora me encuentro del otro lado, siendo la que tiene que brindar ese apoyo.

Hoy me escribió Soledad muy angustiada. Las convulsiones de León se están haciendo cada vez más seguidas, le están aumentando la dosis de la medicación pero sin buenos resultados. Me encantaría poder decirle que ya va a pasar, que ya se le van a ir, que va a estar mejor. Pero es algo que yo no puedo saber. Me pone mal no tener una respuesta para darle, porque tampoco la tengo para me. But I can do anything for her. I can hear it, I can contain it and tell all that God is my support. It is he who renews my strength, which helps me through all this. And those who know me know that this is real me.

I ask the followers of John and pray for him always, which also take their prayers to Leon and his parents.

Soledad: I understand your pain, because it is the same as mine. We both know the helplessness he feels at not being able to do something concrete to stop seizures. Love your son and that like me, not change it for anything. I pray for you, so you can feel that God is holding. Yesterday