# My daughter Lela made it!!!



## Waywyn (Aug 8, 2007)

Hey all,

why I just don't write, my daughter was born, post a cute pic and that's it.
Well, because I think that my daughter was born at least 4 times and really managed to handle this extreme situation 

I thought long about to make this "public", but finally decided to write down the whole story because I think it might help to read it and I also think it encourages people and spending some light whenever you might come in an extreme dangerous or hopeless situation.


It all started on the 9th of July 2007:

My wife and me went to the regular routine ultrasound check this monday morning to see if our daughter is moving into the right position to make sure she will be having a natural birth.
Even how hard the doctor tried to look as neutral and interested during the ultrasound (as they always look), I instantly knew that something is not right with our baby.
Finally she mentioned that something is not right with the heart. There is kinda of a shadow on one side of it and the right atrium is much bigger than expected.
She sent us to a certain specialists ultrasound place here in Hamburg, where we already went to in the 23rd week, to have another bigger routine ultrasound examination.


10th of July:

Being at the specialists place, the doctor checked the baby at least for 30-45 minutes and finally decided to bring in another specialist into the room who already checked our baby again. Then the went out and deliberated the situation.
Finally the doc came back and there was the diagnosis:

Our daughter has an aneurysm on the vein of galen.

The vein of galen is a little vein which leads from the heart to the brain and on one or another spot on this vein it can happen that it is malformed.
It looks like a little tiny ballon which has several entries and exits of veins and arteries. The blood is not flowing in its normal way, but completely chaotic.

So because of this expanded little vein, the heart has to pump much more blood through it and since the heart is still so small and smooth it gets bigger and the myocardal muscle gets more and more damaged over the time.

Finally we knew what was going on but the doctor wasn't really able to tell us, what we, or better, he could do. He just told us that this situation is extremely dangerous for the baby and he wasn't really able to tell us anything about what might happen to her.
Without asking us, he talked to a hospital here in Hamburg and told us, that this is a place full of specialists and he is sure that they might help us. Appointment tommorrow and a night with nearly no sleep.


11th of July:

This day we went to the UKE, the University Hospital Eppendorf here in Hamburg.
After waiting and waiting and another ultrasound examination, the doctor confirmed the diagnosis.
Because of the advanced contractions and the extreme dangerous situation he decided to not let my wife go home another night. He did a few calls and managed to get her a room/bed.
Luckily we were prepared very well and brought all the cloth and stuff with us, so Nurith, my wife was able to "move in".
After a few decisions with other doctors they finally decided to give birth to the baby tomorrow via cesarian.

And then the real horror started and it felt like a bad movie we were in ... fed up with a lot of drugs.
We had one meeting after another with specialists, pediatrists, neurosurgeons, anesthetist etc.
It all went by and we just heard statistics and studied what might and will happen etc.
Finally the neurosurgeon brought it to the point, which hit us hard:

"If your daughter will survive the first 2-3 hours after birth we will have a lot of luck"

......


12th of July:

After 3,5 hours of sleep I woke up in sweat at 4:30 in the morning. I thought I was just dreaming but the yesterday meetings were just to real ... "If your baby will survive the first 2-3 hours, we have a lot of luck" .......... and Nurith wasn't lying next to me .......... "If your baby will survive the first 2-3 hours, we have a lot of luck" ............................. "If your baby will survive the first 2-3 hours, we have a lot of luck".

Yesterday evening my parents came up all the way to our home, so we all went to the UKE in the morning to be there at 7:00 am because the "birth" should take place at around 7:45 am

When we arrive they already prepared my wife for the surgery. In the meantime I was dressing with the doctors to stay with Nurith during the cesarian ....................................... "If your baby will survive the first 2-3 hours, we have a lot of luck" .....

I came in the surgery room, sat on the head side next to my wife and they started. I just had one thought: "Our daugher will fight and make it."

A 15 (!!!!!) people crew were ready and prepared to take care of our daughter as soon as she "hits planet earth" ...

Suddenly we heard a "welcome little one" and "Helloooooo" of the doctors and instantly we heard a few small cries ....

Our daughter Lela Amelie Ava Tamar Chaja Tallulah Marie was born on the 12th of July 2007, 8:40 am with 52 cm and 2835 gramms

I was flushed with energy and instantly felt like being 3 weeks on vacation.
Suddenly the cries weren't there anymore but instantly a doctor told us that they brought her into a little brood chamber we saw the day before next to the surgery room.
Without a word of a lie, this room looked like a high tec science room which you usually see on "Matrix" ...

While they were still taking care of Nurith, the assistant medical director rushed in and told us that Lela is much more stable than expected ...

After two hours they needed to take care of Lela, she was already brought to the intensive care station. I thought she will stay in this "brood chamber" for a few weeks, but they already took her out of there.

Then I was allowed to go to the intensive care station to visit my daugher, since we weren't able to see her right after birth.

What happened then, I can't describe with words. You just have to experience it. Seeing your own child the first time is just magical. A little human being, the most wonderful fusion of two people.
Of course I am biased, but Lela was and is by far the most beautiful baby girl I have ever seen and because of brought to world via cesarian she was just looking even smoother and more beautiful.
"Of course you are biased" I thought to myself, but suddently all the doctors and nurses came in were stunned. "Damn, you are so beautiful" ... "Oh my god, did you see that sweetie" .... I was damn proud 

The nurse instantly informed me about the situation. Lela was just getting a bit of heart medicine, didn't need the breathing machine and was more or less stable.


13th of July:

the doctors decided to do the first magnetic resonance imaging so they could see what was going on in Lela's head. When I met the neurosurgeon afterwards he told me that the aneurysm in Lela's head is smaller than expected. I felt like the happiest man alive.


15th of July:

Lela has been stable so far for 4 days but you could really see the that the heart had to work a lot ....


16th of July:

She was getting weaker and weaker and finally didn't really wake up when the nurses took care of her. So the neurosurgeons decided to operate her.

There was it again. 50/50 that something might go wrong, but somehow I was calm.

After a six hours successful surgery they managed to close 3 entries/exits to the aneurysm. They found acess through a katheter in the bellyhole (!!!!), led a little wire through and placed coils (little platin spirals) in these three bigger entries/exits of the aneurysm.


The following days Lela recovered really well from the surgery, but on the 20th of July she went weaker again. After doing another magnetic resonance imaging they found another 2 entries/exits on that aneurysm which got bigger because of the changing shunt.

Another six hour surgery and another 50/50 chance.
This time they glued these two entries.

After the surgery, Lela didn't really recover well and started to get cramps.
By doing another magnetic resonance imaging and ultrasound they found out that some blood was rushed out of some injured veins (which apparently happend during the first two surgeries) and went into the ventricles.

These are kind of like 2 banana shaped containers in the brain who lead the liquor (nerver water) out of the brain through a little pipe down the head. Now because of the blood inside the ventricles this little pipe was blocked. So there was the danger of a hydrocephalus ... the head and pressure is getting bigger.

22nd of July:

The decided to do a small unrisky surgery and put two drains into the brain to let the blood filld liquor espace. She still had cramps but they put her into artificial sleep and started to do the necessary medication theraphy.

Now the waiting started.
The doctors told us that she might be handicapped, but you can't really say something and time will tell, since they are so small. You really start to see if anything is "wrong" when they are about 2-3 years old.

She was kind of stable through all these two weeks of artifical sleep and yesterday on the 7th of August she really woke up for the first time and asthonished us all.

Lela was able to look around, she was moving the feet and hands softly. When we touched the mouth softly with a little q-tip of mothermilk she instantly started to suck at it (which is a very good sign)

Noone really knows where this leads to, but as it looks like she might really recover well and even if there is handicap, there is enough you can do later on with gymnastics, ostepathy and other therapies.


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## Waywyn (Aug 8, 2007)

*Re: My daughter Lela did it!!!*

I wrote this down, because I just wanted to share this story with you and hope you can find courage and hope in bad situations. Because what this little girl went through, is much more than other people going through their whole life.

Lela is my biggest hero, my inspiration, my idol, my hope, my strongest figher, my everything. So just in case something might happen to you or your child, think of this post and just KNOW that everything can turn out well, no matter how dark the sky will be


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## Christian Marcussen (Aug 8, 2007)

Absoultely insane... I can't imagine having to go through all that! What a scare...

But I'm delighted that she has defied the odds so far, and cross my fingers for you. 

Good luck to you all, and congratulations! Being a dad is great...


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## Scott Cairns (Aug 8, 2007)

*Re: My daughter Lela did it!!!*

Alex, my heart goes out to you guys, it was very brave to share that story.

My thoughts and prayers are with you, your wife and little Lela.

On a lighter note, congratulations!! o-[][]-o (we cant overlook the miracle!)

Cheers,

Scott.


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## Scott Rogers (Aug 8, 2007)

*Re: My daughter Lela did it!!!*

..........


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## Hannes_F (Aug 8, 2007)

Alex,

all the best to you and your little family!!!


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## dach (Aug 8, 2007)

*Re: My daughter Lela did it!!!*

Congratulations Alex and the best of luck to you and your family. That must have been a terrifying experience to say the least. Glad everything is OK. regards, Chuck


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## ComposerDude (Aug 8, 2007)

*Re: My daughter Lela did it!!!*

Wow, Alex - thanks for posting and I'm glad things are looking better for your family.

I'm glad you had such accurately-diagnosing doctors, and surgeons with such steady hands...and that Lela made it through!

With best wishes for Lela and the rest of your family...and congratulations on being a new Dad!

-Peter


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## Patrick de Caumette (Aug 8, 2007)

*Re: My daughter Lela did it!!!*

Congratulations Alex and God bless your brave little daughter.

May she grow stronger everyday!


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## Frederick Russ (Aug 8, 2007)

*Re: My daughter Lela did it!!!*

Wow Alex - I had no idea man. Thanks so much for sharing this! We have a close knit community here that cares and I'm sure we'll keep you and your family in our thoughts. Some really scary stuff Alex - but amidst it all, you have a really cool miracle there: Lela. Congrats on that, and I'm sure you're going to be a great Dad!


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## José Herring (Aug 8, 2007)

*Re: My daughter Lela did it!!!*

Thanks for sharing this story Alex.

Lela is a fighter. She's an inspiration to us all to keep fighting no matter how bad things seem to be. I predict a bright future for the little girl. And I'm sure she'll bring you and your wife lots of happiness and joy.

ml,

Jose


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## madbulk (Aug 8, 2007)

Congratulations, Alex. I'm sure she is indeed the most beautiful child on earth. And she's got a great pop.


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## sbkp (Aug 8, 2007)

All our best to you and your family, Alex.

- Stefan


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## lux (Aug 8, 2007)

Alex, babys are much stronger than people expect. I'm sure everything will keep goin' fine


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## wonshu (Aug 8, 2007)

Alles gute Euch dreien!!!!

Grüße aus Berlin
Hans


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## Rodney Glenn (Aug 8, 2007)

*Re: My daughter Lela did it!!!*

Alex,

Congratulations on being a father and thanks for sharing this with us.

All my best wishes to you, your wife and brave little Lela.

Rodney


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## Angel (Aug 8, 2007)

Alex... my very best wishes to you three!!!
Thanks for sharing your experience, thoughts and feelings with us.
Especially for me it's good to read such a story, as we're expecting our child in January after bearing a miscarriage last year. We're full of hope everything will be fine!

Your posting bolsters up!

All my best wishes to you and I hope hearing one of your productions valorized with Lela's voice soon! 

Angel


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## Mike Greene (Aug 8, 2007)

*Re: My daughter Lela did it!!!*

Incredible story, Alex. And an incredible little girl. Thanks for sharing this. 8) 

One nice thing is that you probably appreciate your daughter a lot more than we did when our son was born 11 years ago. The first few months with almost any baby are especially difficult and my wife and I mostly argued over, "It's your turn to watch him." "No, it's YOUR turn!" Most people won't admit it, but this is pretty typical. The first few days are pure magic, but then reality starts to happen. It's amazing how valuable sleep is (even though it's free!) and how a baby's cry is tuned to just the right frequency that can drive you insane!

I say this because it sounds like Lela is going to do well, so it's only a matter of time before you go from "Thankful for every second" to "Will she ever stop crying?!?!?" My point being - don't feel guilty about it. It means you're a normal parent and Lela is a normal and healthy baby. Welcome to the club! :mrgreen:


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## rJames (Aug 8, 2007)

*Re: My daughter Lela did it!!!*

Alex, you had me on the edge of my seat as I read this thread. I'm glad she is doing well.

I hope things calm down and start going smoother. Like Mike said, you'll need your rest!

Congratulations, dad.


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## Waywyn (Aug 9, 2007)

*Re: My daughter Lela did it!!!*

Hi all and thanks again!! I will pass it on to my daughter. Really kind of you guys.

@Angel: just a little consolation. Misscarriages especially in the first three month is happening to nearly every 3rd to 5th woman. No matter what do you, how you eat, how you take care of yourself, it just happens. That's mother nature's "sorting out plan".

Including us and a looooot of my friends who got pregant all had to deal with this.

But the second try is much more safe, after it happened once  ... but I am sure the docs told you all that.


@Mike: Haha, yeah, you are right, I guess this moment will come sooner as expected 
... but on the other side, I would be just happy to have this situation. What is usual and normal situation for other people will be something special for us. Sounds stupid, but I can't wait until she is here.

Without even thinking about it, I would give my hearing to have my daughter healthy and here at home!


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## Angel (Aug 9, 2007)

I know Alex... and it was really in the first few weeks. But fear increases though.
But however... the doc told us last week, we are in a "safe" state now


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## synergy543 (Aug 9, 2007)

Best wishes to you and your family Waywyn. Its a precious time to enjoy, and you get to be a kid again too! My son's already off to college and working so we have little chance to see him anymore. I wish I could've spent more time with him when "we were kids".

Greg


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## jonathanparham (Aug 9, 2007)

*Re: My daughter Lela did it!!!*

CONGRATULATIONS.

I too had a scare after the ultra sound of my first child. The fact that we got asked to do a second one to confirm findings was very discomforting. The technician thought he saw something similar to downs syndrome even though the genetic markers 'weren't' there.

BUT alas all is well, my daughter's here and though a few weeks early, very healthy.

I've already prayed for Lela and will continue.

CONGRATULATIONS!!!!


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## gravehill (Aug 9, 2007)

*Re: My daughter Lela did it!!!*

Congratulations!

o-[][]-o


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## artsoundz (Aug 9, 2007)

*Re: My daughter Lela did it!!!*

Thanks so much for sharing. The absolutely great news is that medicine is experiencing a quantum leap in evolution and your daughters health is in great hands. The advancements are unprecedented in human history and her future is incredibly bright.


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## Waywyn (Aug 12, 2007)

*Re: My daughter Lela did it!!!*

Okay, thanks again to you all!!
It really helps to see that so many people care ... I passed on all your wishes to Lela.
Hope she will be out of the hospital soon. The doc said around 2 months, but I think it will happen earlier


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## madbulk (Aug 12, 2007)

*Re: My daughter Lela did it!!!*

Awesome, Man. So happy to hear it. Two months is probably underpromising. I bet you get your wish. Have thought of you often these past few days. Wish you all the best.


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## Blackster (Aug 21, 2007)

*Re: My daughter Lela did it!!!*

Hi Alex, 

we talked to each other via phone this day. Nevertheless I want to write down the following words: I am so glad about Lela´s strengh. I whish Nurith, Lela and you all the best. Little Lela did it because she really wants to. This quality she inherits from her father :wink: 

Hopefully see you soon,

greetings from the south of Germany,

Blackster


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## Waywyn (Sep 12, 2007)

Hey and thanks again for your wishes!!

Finally, I think, I can bring this nightmare to, for the time being, a positive ending.
To make it short: Lela has left the building!!!

After almost 10 weeks of hospital (7 weeks of if on intensive care station) she moved in at our home 


For those who are a bit more interested I will just continue a bit where I left off:

After she woke up everything went really quick! The sedating medication and the morphine was reduced over time and she got even more alive which really surprised the docs. Basically all of the assisant medical directors visited Lela during the last weeks just to take a look at her and were simply astonished. A nurse told me that Lela's will to survive is really strong and sadly this is not the case with every baby.

Some babies just "sleep away" or never wake up. Some stay heavily handicapped, but she woke up as nothing would have been.
We saw and heard a lot of "shit" during our seven weeks on the intensive care station. I didn't see "the worst case", but a few wheren't just there anymore after a few days, some of them are still there, still in artificial coma.

So after Lela was almost 100% awake we started to learn to drink with her (again) from the bottle. We started slowly with like 10-15 ml per bottle of mother's milk but after a few days she reached 70-90 ml. She was ready for breast feeding, which is kind of the hardest thing to learn for a baby and especially with an insufficient heart and almost three weeks of coma. She rocked everybody until she reached the 50-60ml mark a few days ago - now she is at around 100 ml 

One of the greatest things happened during the last days in hospital was the ultrasound examination of the heart. One doc told us that the heart was heavily damaged and it could take around 6 months to hopefully completely recover from that damage. After this last ultrasound was done the doc said, that she wouldn't need anymore medication. The heart is around 99% healthy and recovered.

The last magnetic resonance examination showed another cool thing. It still wasn't sure, but very probably that Lela would need a last surgery, because of all the blood in the ventricles which blocked the "exits" for the nerve water in her head.
If the pressure would get higher she would need an internal VP shunt, which is kind of an implant which drains out the nerve water artificially ... but in that MR examination Lela's ventricles didn't expand at all. Nature just created them a bit bigger to solve the problem on it's own.

In the end we are not sure how everything will come. The "thing in her head" which is not really an aneurysm but a "Galeni malformation" is, as mentioned above, very seldom and no one really knows how it will evolve over time, but the docs are very pleased how it was treated, so they are optimisitc. We still have to do a few more examinations and will definitely visit the hospital a few time more in our live.

We are very proud of our little daughter and after all this I think differently about life.
Lela has gone through more things than probably other whole families every will in their whole life .. and she solved it so well.

I really see a drive, motivation and inspiration in her, because she went through two very risky surgery (a few days ago the neosurgeon who did the first two interventions, told me that it really wasn't 50/50), woke up from an almost 3 weeks artificial coma and learned so much again in such a short time. The whole hospital is kinda celebrating her as a little hero and we do that to ...

*... and that's finally why I wrote all this down - not how "cool" our daughter is, but what such a small child can go through. I am sure a lot of dads are here on that forum. So may these words be a small candle in stormy nights and when situations seem hopeless.*

Thanks again for all your wishes and thoughts. I am 100% convinced that every little energy and thought which has been sent out to us, has done it's job  Thanks for spending your thoughts and your time reading this and good luck to all of your families out there, especially to Scott Cairns and his wife who received boy twins a little while after Lela was born


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## Scott Cairns (Sep 12, 2007)

Hi Alex, my wife Lina and I are really touched to hear your news. Please pass on our best wishes to your wife and to little Lela! 

Have a virtual beer on me mate! o-[][]-o


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## edafe96 (Sep 12, 2007)

Hey Alex,

this is great news!


All the best for you and your family!

Tino


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## Colin O'Malley (Sep 12, 2007)

Alex, 

Thanks very much for sharing this story. I wish you and your family the best. 

Colin


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## SvK (Sep 12, 2007)

Fantastic!!!


congrats....Best wishes,

SvK


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## Nick Batzdorf (Sep 12, 2007)

Yeah, all the best. I'm glad it's going so well.


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## Frederick Russ (Sep 12, 2007)

Fantastic news Alex! Thanks for the update. All my best to you and your new family!


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## Thonex (Sep 12, 2007)

Thanks for the update Alex!!!!!

You have a tremendous attitude and a whole world to show your daughter. And like you said earlier in this thread.... there is so much Early Intervention can accomplish.... and if anything can be accomplished... there's no doubt Lela an do it!!!

All the best my friend.... and continue being the great dad you are!!!

Cheers, o-[][]-o 

T


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## kid-surf (Sep 17, 2007)

Glad to hear that Alex! Miracles do happen! 

J


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## Waywyn (Oct 24, 2007)

Okay, just want to bring this up to finally thank you guys writing the last comments, especially Thonex ... your post touched me 

Lela is doing great, we had a few rechecks at the hospital, but everythings cool so far.
For those who are interested I started a little blog about all that ... I don't want to spam the forum, so if someone wants to know more a bit, just drop me a PM and I sent over the link.


Thanks to you all!!!


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## lux (Oct 24, 2007)

Please Alex spam our forum and post your link 

Luca


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## madbulk (Oct 24, 2007)

absolutely. spam away, Alex. So glad to hear everything continues to go well.

And may I announce the arrival of my Jessica, born a week and a half ago. Life is grand, baby.


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## Scott Cairns (Oct 24, 2007)

Brian - congrats mate!! o-[][]-o 

Alex - spam spam spam spam 8)


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## Waywyn (Oct 25, 2007)

Ok, here we go ... english may be sometimes a bit weird 
www.iamlela.com

... and a big congratz to Brian!!!
Welcome at the daddy's club


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## Waywyn (Nov 11, 2007)

nikolas @ Thu Oct 25 said:


> Alex,
> 
> Just noticed the thread.
> 
> ...



Hey Nikolas, thanks a lot and sorry for the late reply.
Yeah diaper changing ... I am almost able to do that with closed eyes now :mrgreen:


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## rJames (Nov 11, 2007)

Waywyn @ Sun Nov 11 said:


> Yeah diaper changing ... I am almost able to do that with closed eyes now :mrgreen:



I used to wish I could do it with my eyes closed...more importantly, with my nose closed.


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## Hal (Mar 28, 2009)

ALex am very moved from your post even thi its old
thx for sharing this.

every thing that happens to me or other makes me apreciate life more and always see whatever problems am having as a very small thing,
May God belss you and your child


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## Waywyn (Mar 29, 2009)

Hey guys,

thanks a lot! I really appreciate your kind words!
Basically worst is over, Lela is doing very great progress and she is definitely a very happy girl - although currently we are still in the "hell of teeth" and nights are basically the same as days - the only difference is that it's dark outside :D

She is definitely still behind the curve, but all our exercises, physiotherapist sessions and general care show huge results in terms of development and it is just a matter of time until we have to secure the appartment 

So finally, since we are a composers and musicians forum, see her excusively working on her latest composition with her brandnew 64GB RAM/16core 3,8 GHz MAC UltraPro workstation


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## Hal (Mar 29, 2009)

daam i want one of those..adopt me lol


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## TheoKrueger (Mar 29, 2009)

Congratulations Alex!

Your daughter must be very proud of her daddy believing in her so.

o-[][]-o 

Best wishes,
Theo.


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## Christian Marcussen (Mar 29, 2009)

Waywyn @ Sun Mar 29 said:


> Hey guys,
> 
> thanks a lot! I really appreciate your kind words!
> Basically worst is over, Lela is doing very great progress and she is definitely a very happy girl - although currently we are still in the "hell of teeth" and nights are basically the same as days - the only difference is that it's dark outside :D
> ...



Cute... Here is a my indoctrination


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