Update

Mousy and 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.

Vomiting---Living with lissencephaly

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!

Seizures

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

Mousy and Lissencephaly---fever has decreased

Mousy and 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.

Fever---Mousy living with lisencephaly

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?

I has began...one year ago

Mousy and lissencephaly

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

Living with Lissencephaly - Another day of therapy

Well, here we go to our 3rd therapy. Yes, in all this months we only had 3 sessions. But he is doing fine. I like to think that we are going there for me to learn how to take care of him.

Genetic similarity

(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.

living with lissencephaly---Mousy woke up

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.

shock

(Mousy ans 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

(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!

Therapy and 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.

And continuing...

(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.

Convulsing

Mousy and lissencephaly

Mousy was convulsing for almost 2 hours...

Many things

(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!!!

First day on Therapy

Mousy and Lissencephaly

Wednesday was our first day in therapy. It was good, but let face it...it's not a hour each week that will make a difference. If i dont play with Mousy at home, the therapy will do almost nothing.

In the therapy place, when we were leaving, a saw a beautiful girl  of her 10-12 years sitting out side. I was wondering what was she doing in there, if she had some problem or if she was waiting for somebody. After a while i understood. She started to play with a small toy, smashing it against the table and making "aaaaaaaaaaa", like a 6 months baby.

Dont know where to go arrange forces to deal with all this, but i need to have forces. I dont understand how a mother will get forces to take care of her teen son that uses diapers. How she will get forces to live day by day, loving that precious boy, taking care of him...and then he dies. Dont know where to go to get forces...

Mousy and Lissencephaly

Mousy and Lissencephaly

Today was our first day in therapy. It was good, but let face it...it's not a hour each week that will make a difference. If i dont play with Mousy at home, the therapy will do almost nothing.

In the therapy place, when we were leaving, a saw a beautiful girl  of her 10-12 years sitting out side. I was wondering what was she doing in there, if she had some problem or if she was waiting for somebody. After a while i understood. She started to play with a small toy, smashing it against the table and making "aaaaaaaaaaa", like a 6 months baby.

Dont know where to go arrange forces to deal with all this, but i need to have forces. I dont understand how a mother will get forces to take care of her teen son that uses diapers. How she will get forces to live day by day, loving that precious boy, taking care of him...and then he dies. Dont know where to go to get forces...


But i will make every day the best day that Mousy would ever had. He deserves that and much much more. He is my little angel, my sweet and innocent child. He is the love of my life!