sábado, 31 de outubro de 2009

NBews - Lissencephaly

Last days have been calm. Mousy started to eat better, he is already drinking 150ml of milk...slowly but he is drinking.
Today Mousy had a play date and was so happy! I think that he had a small IS cluster, but dont know if I'm starting to be hallucinating. But on the way home he had 2 clusters of IS and we had to use SOS medication. At late night, Mousy had 38,6 of fever, but the fever decreased almost immediately without any meds.

Although all this things, i think that Mousy is having a good time...he smiles a lot (even when he had the IS clusters, right after he smile at us, like he was saying that everything is ok with him).
Next week will be very complicated for all of us, so we need to rest something this week.

Good night...

terça-feira, 27 de outubro de 2009

Update---Living with Lissencephaly

Living with Lissencephaly

Mousy doesn't want to eat. We think that it is because of the cough, but we're not sure. So tomorrow Mousy is going to "talk" to the therapist and see what is going on.
We are seizure free since 2 days ago...lets see how it will be tomorrow.
Mousy is having a rough time to sleep today...dont know why. Dont think that is because of any pain or fever, so we're going to stay alert.

domingo, 25 de outubro de 2009


Today we had scenes that could be from the movie "The exorcist". Mousy throwout all morning because of the cough. But, besides that, th rest of the day was fine.
Tomorrow he will start the "normal" week...let's see how it goes!

sábado, 24 de outubro de 2009


The fever wasn't all gone and the seizures came to join it...my heart is broken...

quarta-feira, 21 de outubro de 2009

Living with lissencephaly---fever

Living with lissencephaly

Mousy has finally decreased his fever. He is now bellow 39ºC. He already eat 2 complete meals and the other 2 were more than a half. Water is the problem because he choke a lot.

We need ideas about hoe to reach people and sensibilize them  for the nightmare the lissencephaly can be and what and how we can do/see to not let this happen.

terça-feira, 20 de outubro de 2009

Mousy living with lissencephaly---fever

Another day of crazy fever. So, we end up on the hospital.
I wish that i could trade places with him, that my precious little mousy wouldn't had to suffer. He is so beautiful, always fighting one bit more to stay with us a little longer.
Do you think that he knows how much i love him?

quinta-feira, 15 de outubro de 2009

One year ago...

Mousy and lissencephaly

Last year, at this exact time, i was thinking "What the hell...what is going on?"

segunda-feira, 12 de outubro de 2009


(Mousy living with lissencephaly)

Mousy's birthday is coming. That brought up many questions, questions that were deeply inside my mind. One of those questions is if Mousy has a 99,9999999999999999999999999999999999999999999999999999999% genetic similarity with me and if i am a human being, what is he? And if he is not a human being, what am i for given birth to him?
I'm sorry, but i dont buy that religious crap that he is an angel or that he is a blessing. He is a handicap children who is going to have this miserable death (by pneumonia or something worse), that dont see, dont move, dont nothing. He is what he is...and sometimes i really really need to force me to love him, because i'm the only one that he can count on for making his life the BEST he can have.
I really dont understand why all this suffering...why does a baby need to suffer like this.

domingo, 11 de outubro de 2009

(Mousy and Lissencephaly)
Mousy woke up again and this time he stayed awake for a while. His eyes are not so bright as they were, but i think that will pass. He already was capable to eat without shocking.


(living with lissencephaly)

Mousy finally woke up from his long long sleep. He was very hungry and irritated. He was sleeping for 2 days because of the major seizure he had in which he stopped  breathing. We didn't know if it was because of the drugs or because of the lack of oxigen that he was sleeping so much.
If he is ok?...only time will tell (if we can say that the kind of life he have is an "OK" life).

quarta-feira, 7 de outubro de 2009

long day and therapy

(Mousy and lissencephaly)

Longggg day!

Today we had our weekly therapy. For the first time someone told us that Mousy is going to be spastic...stiff as a stick. There is no botox or any thing that could help.
So, Mousy will never ever be able to do things that we consider granted...like holding his head up or his back straight, open and close his hands with intention, and so on.

Want to run away from all of this...HELLLLLPPPPPPPPPPPPPPPPPPPPPP!

terça-feira, 6 de outubro de 2009

This week

(Mousy and lissencephaly)

Mousy was fine today. The day was very long but the time was running.
This week will be like hell, but i hope to reach the end of it alive. Hope Mousy doesn't feel much my absence.
Tomorrow Mousy will have his second therapy.

segunda-feira, 5 de outubro de 2009


(Mousy and Lissencephaly)

Mousy was fine for almost all day. But at night he started to be irritated and at aroud 23h40 he started convulsing. At 2h30 we finally manage it to stop.
See you all tomorrow...hope i have better news.

domingo, 4 de outubro de 2009

Sad news

Mousy was convulsing for almost 2 hours...

sexta-feira, 2 de outubro de 2009

Many things...birthday comming

(Mousy and Lissencephaly)

Mousy's birthday is coming and i'm feeling terrified. I'm afraid of making any plans and that he will not be present at the time. I always have said that i wanted to do a big party (for all the parties that he will miss in his future), but now the only thing i want is to spend the day with Mousy and his father, play together and go for a walk, make a cake and take many pictures.

Today the vision therapist came to our house to help us with mousy development. They were very sweet and very conscious about Mousy problems, but we already do everything we can to help him. Of course they teach us other ways of stimulating him, but i dont think Mousy like the new ways very much.

About me...well, i'm still sick, but nothing major...just a simple cold that Mousy brought from daycare. I really dont know how does that boy brings everything home but never catch anything!!!