(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.

Scare...

(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).

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!

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.

Convulsing...again!

(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.

Sad news

Mousy was convulsing for almost 2 hours...

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!!!