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...

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.

Vomiting

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--lisencephaly

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

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.

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?

One year ago...

Mousy and lissencephaly

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