Lisa now

Now I've told a lot about what does Lisa's underlying disease, But to give you my daughter presented by its nature it requires a separate page.

Today, Lisa is a very happy girl. She loves to be taken and calls it a, where it is really fussy. Just as one that knows just about babies. Ideally she is always there, no matter how loud or it is turbulently. If home is dancing and singing, she is in her element.

Lisa can neither see nor hear, but she has the gift of themselves to other men ... tja how shall I put it to empathize .... She recognizes people in their aura, even if it sounds crazy. Even if someone approaching with a friendly voice on it, they immediately feel whether it is only played friendly. And should someone approach her, is internally restless, she acknowledged with a loud rejection. Of course it makes no different to me. Should I once again slip into my hectic phase, because the women just as happened when they think of their household, I can be 100% be safe, Lisa begins a short time later that whine until I've captured and relaxes me.  My angel loves to be petted and kissed it. Their eyes shine so much here, that they prefer to sink like.

Even if they do not hear anything, but they "curl up with laughter" (figuratively), if you told her dementia. I know, that she does not understand my words but what do they feel real laughter in her wake.

If we are buying, Lisa closed her eyes. I always say, They hid until they know, that the air is clean. The old ladies, happen to us then and see me with my kids on their shoulders whispering to each other then "Oh look times, the baby is sleeping, how sweet!"A slight grin, I can not resist me then, and think to myself, that my daughter was very smart is not to reveal any.

To date, Lisa drinks her milk in the baby 1,5 Hour Clock, Sometimes it creates 40ml and if they truly "greedy" is even 100ml. That is not much, but for her portion of a Monster. In between times we try to mash food with spoon. ... Sometimes they like it, times just not.

With us no two days are planned. If we want to do something, then this must happen spontaneously ... in the end would be a can verschniefte or bad-tempered Lisa enjoy no trip. But it keeps you young :the)

But we also have our very strong rituals, Lisa has been in the world. And they are also extremely important to me. ... Maybe it's just my special ticks, I do not know. Our first ritual is Lisa's birthday: Every year, on Lisa's birthday when I get to bed at night, I hit her once close to me and say: "That was your (with. B. 8.) Birthday, will create the next and also!"It's kind of like a conspiracy against their insidious disease. And similarly it is in the New Year's Night. A few moments after midnight, I snuck to Lisa to the bed, streichel over her head and they say welcome in the new year. Thus, the same one for both of us .... This may sound a little strange for some, but to me these are just little things very important.

Lisa Lisa is just .... A ray of sunshine and an angel ... who does not know what she has missed ... and who knows them is in love with it ... is not it great?

Update from 25.6.2011

I guess I should update this section once, Lisa also because changing their habits and. And for all, which do not regularly read her diary, I would like to explain how our daughter has developed.

Lisa is now 76cm tall and weighs 6,2 kg and I should say, that she has unfortunately lost a pound, that just is not back to their little ribs would. Of course, she drinks her bottle today, but since she is a teenager now, she drinks her bottle just for me to do a favor, because to me the morning bottle feeding and cuddling is so enormously important. The rest of the day they eat porridge from a spoon, with all the accumulated fat is what makes. Per meal, it creates about. 60 Gram and approximately every 2 Hours.

Since June 2010 it has a PEG, So a tube that leads through the abdominal wall into the stomach, what I can give her medication and water, drink because they can no longer. Except for the bottle in the morning they can not tolerate liquid in the mouth and even her own saliva she swallowed often.

For about 3 Months it has become very relaxed, if we take them out…and, she enjoys the variety and even when we are busy telling the move.

Her epilepsy is unchanged, which means, that she still has an infinite number of epileptic seizures a day and do not help their drug. A year ago, I reduced the dose of the medication and they thus became more alert and their attacks have not changed. But I will not be further reduced to the moment when my inner voice tells me.

Late last year, has been tested during investigation of a large stationary Lisa phytanic acid levels and it is unbelievable, But it is almost (!) within the normal range for their food ... it means, that we do not have to be careful, that their dietary phytanic acid-poor and she is simply allowed to feed with what you taste ... but even if it one of the big risks is excluded only once ... it can not breathe and so do we as Lisa would have 50 Years old are. The neck remains in the shadows, and depending on how she is doing it is something we consciously or slips into the background ... but away? No, He never goes away ...

From August, Lisa will receive home schooling, which means that our teenagers is a school child. Of course they will not learn math or spelling, but it is taught and that's a huge step for us.

Even if we continue to hear the whispers on the street the people, that our baby is sleeping (because some things just never change), For us it is a real teen, and we are happy and thankful for her every day.