Sinto a alma vazia...

Hospital

Mousy is at the hospital with a pneumonia. Needs oxigen and almost was all blue.
Maybe tommorow we go home, with oxigen and a machine to measure oxigen levels.
Pray for us.

Picking up photos and writing a paper
If being multi-task provoques Alzeimer, i'm in the first row
Maybe is better that way...



We went to USA to see Dr. Dobyns.

National TV

Well, we were on National television on last 6 of may. It went well and it was fun. We are going to get the video and then put it here for you to see with subtitles.

Mousy is fine. He is very happy and seizure free.

For now, we are counting the days to be with Dr. Dobyns and trying to put toghether all the €€€ for it.

A promise made

I've made you a promise of tell you all about the work i'm doing...please be pacient.

We are going on National TV - RTP1 channel on the 6th of may.

News

Well...we've been far from the "international" blog's. Many work, many problems, many stress.

Summarizing:

-After Mousy "made" one year (one year of diagnosis...on the 27th of january, mousy was born and a beautifull boy called L. had past away) the ghost of "death around the corner" was gone. Now is much more easy to go throught the day without panic with a cof or a small fever. Yes, we still panic, but it's different...dont know if i made myself clear...


- Our beloved puppy died with 12 years old...we miss her so much...Mousy feels that something is not right but dont know if he understand what. Me...i havent cryied yet. Our puppy was my companion through the college (she also had the degree...she went to the classes with me)...


- Mousy dont has any doctor appointment since december (when he went to the ER)...dont know if it is good. Why doctors dont want to know about him? So we are trying to find a new neurologist.


- We knew that Dr Dobyns is leaving Chicago and is booked until he is going to the new hospital. So our trip to chicago was cancel


- Now we are thinking about going to the convention...but we dont have any certains that Dr. dobyns will be our doctor in the convention...so we dont know what to do...

The last normal day

Today is the anniversary of the last day that Mousy was a "normal" boy. Unfortunatly i cant remember anything about it. I just remember that it was sunday. Dont know what we did, if we went out for a walk, if we stayied at home and play...i cant remember anything.

I thought about going to our photo album and see if there is any picture of that day, but the last one is at 24/1/2009 at 8pm (saturday). What did we do? I really cant remember...how could i forget what Mousy made on his last day as a "normal" kid? What new things he did, how many smiles he made, if he made any new smile, if he was ok, what we played...i just cant remember...

Jinx

Mousy is with a fever. It began at the physio therapy and at night got worse.
It seems that when good things happen we cant talk about them because we jinx them.

News about Mousy

News


Mousy went to the doctor and everything was fine. He is gaining weight and he is now at a physical age of 6 months (percentile 50).
He is sleeping well, eating well and has a new hair style. He also has a thing to put on his hands when he goes to sleep, that maintain his wrists and hands open. It is for controlling the spasticity.

Memories

Mousy and Lissencephaly

Do you know that smell of dirty diaper or the smell that the baby have after he burps? Or that anoing sound he makes when we dont do what he wants? And that beautiful smiles he makes when he feel us around or we kiss him? Or the "i want to go to your lap" cry? How can we preserve that, like a photo or a video? How can we save the smells and the sensations that only we know our childes gave to us? How can we live the rest of our lives without trying this again after they gain their wings? How will we survive to their departure? I know for sure that i'll miss every single smelly diaper, every single cry, every single night without sleep...i already do. I know sometimes i say that i'm going crazy and that i'm tired of all this, but they are things in that moment and that pass right away..._Mousy smiles and all goes away. I love him so much...cant imagine what life will be without him.

Christmas and gastroenteritis

Mousy and Lissencephaly


Mousy is doing fine during the day, but the nights are very hard. The IS dont let him sleep, so sometimes we need to use the SOS meds.
But, beside that, Mousy is fine. He recieved many gifts in Christmas, 2 soft blankets, a music box that project stars in the ceiling, among others. And from the day care, Mousy brought a portrait that has a very cute photo.
Now we are with a gastroenteritis...first me, then dad...hope it doesnt strike Mousy.

Bad dreams

Mousy and Lissencephaly

Last night i had a very strange dream. I dream that i was walking with Mousy and stopped to do something. I toke my eyes off him 10 seconds and he desaperes and then, boom, the cenary change. I was near water but still looking for him. Then i jump into the water and he was drowning. I saved him.
I think that i'm dreaming this things because a "little friend" of our lissencephaly group died recently and i'm working more outside our house. I sincerely think that i'm the only person that knows how to take care of him (i know that this is very neurotic) and am afraid that something happens if i'm not with him...maybe is because of this that i'm having this strange dream.

Mousy and Lissencephaly---finally

So, another problem resolved...finally!!!
Mousy has been fa-bu-lous! Only smiles and coo and more smiles. Those kind of smiles that are totally selfless, warm, loving, naive. This is the best present and reward i can have from overcome this obstacle.

Another fab week

Mousy and lissencephaly


This week was very stressful. We are reaching a new phase and dont have many free time.
Mousy was fine all the week. He was only smiles and coo. Today Mousy had a "play date" and dont sleep at home...Mousy has a very intense social life!!!!

Mousy and Lissencephaly----Good Day

Mousy living with Lissencephaly


Mousy is doing just fine. He is all coo and smiles!!!! He is eating well.
Tonight i was playing with him and he smile a lot to me...he never smiles to me, only to his daddy.

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!

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?