I am Lela!

I can’t believe, one year can go so fast, …

… but here we are after all that chaos, desperate moments, tears and hope in the first two months of our little daughters life. Looking back now only makes us stronger and now there she is: Lela completed her first year on earth and achieved so many skills, talents and personality traits. It is just a pure gift to her smile and grow.

So all the best to you, Lela … thanks for being who you are and keep on being as strong and eager as you have been before … and may your teeth grow a bit faster so your parents might get some more quiet nights sooner or later :D

Some more impressions:

On the very recent appointment with Lela’s physiotherapist she stated that we do not have to further proceed with Vojta exercises. Currently Lela’s tension in her legs are so minimal that our physiotherapist almost spoke of a normal state.

Of course we have to observe it and in case the tensions get more again we have to start over, but currently it is a true relief that there is no need to proceed with Vojta.

Well, another little piece in the big puzzle is done :)

Also I should mention that Lela is doing pretty well. She recently started to discover items and examines everything briefly with her mouth. Furthermore I wouldn’t lie if I’d say that I recently heard her replying “Hello” when I was talking to her. Another great thing to see is the development of her eyes. A few months back she wasn’t able to react to the brightest light, … now she blinks when the camera’s flashlight is activated and follows her favorite big ball with the eyes when someone is waving it over her head. Just as I mentioned above … even if there are just one or two new pieces of the big puzzle every week or moths … they are all needed to make it complete!

Last but not least I might want to add that those Vojta exercises are by far not the very smoothest exercises you could practice with a child, but in the end it helped so much. We could literally watch Lela’s tension getting better week by week.

If you’d like to more about that, feel free to visit the offical Vojta website.

They are partly there, they hurt, they look pretty, they have to be cleaned, more are on their way … teeth!

Since Nurith was breast feeding Lela until now and our little one is getting her teeth, we think it is about time to get her used to the bottle again to prevent further “nipple-accidents”.

Problem is, she really doesn’t like to drink from the bottle yet, because she likes to prefer the breast.
So even if Lela doesn’t really drink when we practice with her, she prefers to manage it all by her own as you can see :)

Also it is about time to really get Lela to raise her head more, since this is important for everything else in development. Here you can see her in action. Everyday a bit more! :)

… but to make the long story short, Lela is doing great!

Almost every day there is something new she is able to do.
Progress is still kind of slow, but her development never stagnates … and we have all the time she needs!

By the way, so many people are worried if their child isn’t crawling with six months or walking with twelve. Every baby is different and should take as long as it needs. Why hurry?

Of course, parents should be always aware of their babies general development, but ask yourself one question:

When you had your first job interview back then, did the boss ever ask you: “When were you able to walk?” or “How many words were you able to speak when you were two years old?” :)

…

Also the first teeth are breaking through, so currently her mood is not always the best. But even if she has a bit of pain going through this, she is brave and does really well. What is that comparing to what she has already gone through!

Enjoy the little medley :)

Back then in hospital when Lela had her two embolisations, the neurosurgeons needed a lot of contrast medium in order to navigate inside Lela’s body and head while operating. The disadvantage of the contrast medium used, is a hypofunction of the thyroid.

To prevent further damage, Lela was treated with L-Thyroxine since she was in hospital. This medicament is used to recover the thyroid.
So, finally after a blood sample was taken by our pediatrist on last Wednesday and an analysis in the lab, the results showed that Lela’s thyroid was completely recovered! Finally after eight months - a fully restored and functional thyroid … and one medication less!

Simpy as the topic says, our little Lela turned over today and I think it is worth a post!
She already made it to turn from the back to the sides and back again, but today she was lying on her back when she suddenly rolled on the right side and started working with her arms and legs. We were both surprised as she suddenly flipped over after a few minutes of trying and there she was. Lying on the belly with no help of us, smiling like a sunflower.

Most of you may think, that this is normal and every child does this, but considering all the “shit” she went through, Nurith and me were really astonished that she almost did it within the range when all babies start trying to turn over (4-7 months) … and to be honest when she came out of the hospital we weren’t really sure if she will ever make it to turn over at all. Now we have prove.

Lela continues to rock the house!!

Lela recently passed the seven months mark and is doing very well. She still can not really see, but however she is reacting to light and that’s a good sign. We had an appointment with an eye specialist and she also stated that Lela’s eyes are 100%. So with this result and the VEP saying that the way from the eyes to the brain is also okay, it must be something inside the visual centre of the brain. It is now on us and other specialists to train Lela’s eyes and make the visual world tasty :)

We also do a lot of Vojta exercises with her every day and she is making big progress. Also we started to visit a Cranio specialist. The funny thing is you really can not explain what these guys are doing but through just placing the hands on certain spots on the body and the head they release tensions and help the body and brain to recover and cure. After the first Cranio hour Lela fell into a very calm and relaxing sleep and after waking up she was relaxed as she was never been before - completely without tension. We are excited what the next appointments will bring, but generally it helps a lot.

Lela also didn’t have found her sleep rhythm yet, so everything is a “bit” messed up. Since September 2007 when she came out of hospital she doesn’t sleep longer than two or three hours in one bit. We all know it could have come worse generally, but it is about time we get some more sleep soon :)

.. but besides all that it is nice to see Lela developing so well … as you can see in that little video :)

Since this appointment with that specialist we were kind of down and disapointed. Of course we know what Lela went through so far, but seeing her developing so well we really couldn’t believe what the specialist “analyzed” by just seeing her for just one hour … and on the other side, we - the parents … seeing, feeling, listening and living with her for the last six months. The picture just didn’t fit!

Of course, as said already, only time will tell how well Lela will develop, but the last recent days should change the picture:

A week later, on the 15th of January, we had the weekly appointment with Lela’s physiotherapist. We told her about the results of the specialist’s analysis, so she decided to check Lela again, plus she was doing some additional tests, the specialist didn’t even do with Lela the week before.
This time our little one was really awake, not tired and in a very good mood (what she basically is always, except when being tired or hungry :)) … and the results were “slightly” different that the others done a week before. You might have noticed the “” around slightly.
On basically all these tests Lela really showed that there is potential to learn everything a healthy child can learn … which also means, that she would be able to walk. There are no signs yet, that she never ever would be able to not walk (so we really don’t know how someone can just state for sure that someone is not able to never learn something, only by seeing someone for just an hour).
Of course we know that Lela will develop (much) slower than other kids, but concerning the situations she went through, she is really doing fine and all doors are still open. It is on us now to support her in every way possible.

The next day we had a meeting with two very friendly women who work for an organization to help and support blind and visually handicapped people. Nurith and me decided to hook up with this organization because we know that it is always better to do something, rather than just hope everything will be okay one day. Ironically we received the organizations adress from the specialist. We also told them about the results of the specialists analysis, but this time about the eyes. They mentioned that even healthy children at the age of six month still can have visual problems and there have been also a lot of cases, when even neural tests stated that the child should be absolutely blind, were proven wrong.
However, of course only time will tell, but even during the last days we kind of recognized that there is something that Lela is seeing. Not very much and not fast, but there is something, which made her eyes change over the last days … and the way she uses them.

These two meetings completely put us both back on track. All doors where still open and the visions of seeing a blind girl in a wheel-chair didn’t (and shouldn’t) completely disappear, but definitely started to look very blurry.

In the evening I realized that I didn’t check our mailbox, so I went out and found a little letter inside … sent from the UKE.

I went back in, opened it and found a little medical examination report we have waited for a long time:
During the time Lela was in hospital, there was not only EEG testing, but also VEP.
EEG is usually there to test someones brain waves activity while the VEP is the same but for the eyes. All in all two VEPs had been done and we already knew that the first one went wrong. We were still not sure if it technically went wrong … or if Lela’s brain just didn’t catch up the signals from the eyes, but according to a nurse, it was a technical issue, so the VEP was repeated at a later time - however we never saw the results of the second VEP - until today.

I phoned a lot with the hospital and it was a big thing to get the VEPs, because either doctors where not present at this time, documents went to a new place or finally have been brought to the hospitals archive. Finally someone managed to get them out of there, did copies of both VEPs and sent them to us per mail.

And there we had the results of that long lost second VEP, which made our eyes go gleamy:
Lela’s eyes carry a signal through the visual nerve into the brain … left eye normal, right eye with a few latencies.
.. or to put it more simple … she is able to SEE.

Of course, we have to again wait how much she is and will be able to see and if her brain will be even able to work through all the visual info and “understand” it, … but there is definitely hope.

… reviewing the visit at the specialist and especially the two meetings a week later, plus the letter in the evening, it is funny to see how a coin could turn!

On the 8th of January we had a meeting with a specialist who cares about babies who went through serious situations during or after birth.
After an hour of tests with a very tired Lela the specialist mentioned that certain reflexes are still there. Since most of them just stay a short while with the baby, some of these reflexes should be already gone, especially since Lela turns six months tomorrow.
However the specialist wasn’t able to say it for sure and Lela’s tiredness made the tests even more difficult, but she might bear traces of motorical problems and could be blind. How extreme the motorical problems will be, isn’t really sure, but she might not be able to walk.

It was quite a shock to hear all this. Of course we knew about all this when we talked to the doctors while Lela was still in coma back then, but it wasn’t really nice to hear it again, since she developed so fine until now.

Only time will tell how she will develop, but we make sure to do everything for her which needs to be done. We already arranged an appointment with an eye specialist in around two weeks and the physiotherapy she has for around seven weeks now, already showed very great results.
The tension in her legs got so much better, she is able to raise her head while on the belly and she got her first little meal (carrot porridge), which she tolerated and swallowed very good.
The specialist asked us to start with it, since we should test if she might be able to swallow food which is different from mothers milk.

As you can see it works out quite fine :)

Of course we are worried but we kinda stopped to get mad and crazy about everything what the docs told, tell and will tell us. You will (luckily) never be able to tell something for sure, especially when it comes to the health of a baby.
There have been situation docs gave up on babies and wanted to turn off the machines … and today? The kid is in school and doing well.

Of course not all situations turn out like this, but basically no one never ever knows what’s coming next!

It is a bit late, but we wanted to wish you all a happy new year and hope you had a pleasant and healthy start into 2008!

Lela is doing amazing progress. She finally got something like a sleep rhythm (still a bit messed up but better than no sleep at all :))
Her eyes are getting better and she starts to babble and smile even more than before. In a week she will be 6 months old. Still being a baby … but it already feels as if she has the character of an already little child. Nurith and me literally experience something new every day.

Of course we already knew that Lela rocks and kicked our butt every day, since she left the hospital, … but recently, one night during breast feeding, we got the definite proof! Just check the picture! :)

Recently our physiotherapist mentioned a product which is called the “ergo carrier”. It is basically a backpack for your child while the big advantage of this carrier is the baby’s perfect legs position. This is one of the most important things to care about, when carrying around your baby a lot … and if not done right, it might result in severe leg and walking problems.

So we ordered our carrier a while ago and it finally arrived today. Of course I couldn’t wait, so I put in the instructional DVD, grabbed my sweet daughter and a few minutes later I experienced the best carrying situation ever. Not only the baby is absolutely secure and sitting perfect, this thing is also very back friendly for the one who is actually carrying the baby. In opposite to a sling where the full baby’s weight sits on the shoulders, the ergo carrier concentrates the weight to your hips or pelvis. After a few days or nights, your back will be thankful! :)

Hey, I am usually not the advertising guy, but since this thing is healthy for your baby and good for the parents, I think it was worth to write a bit about it. With it’s approximately 100 bucks it might be a bit expensive, but I don’t need to mention that we talk about your baby’s health :)

Also I should mention that the ergo carrier shouldn’t be used before the baby reached 14 pounds of weight.

… need some time on my own! Parents, can’t you understand this? :)

Today we went to UKE for the last time this year!

Lela had an EEG to check her brain waves and a blood analysis. Since she had problems with her thyroid because of the contrast medium which was used during the magnetic resosance imaging and still has epileptic action in two centres of the brain she still needs soft medication. We already know that the epileptic brain action is still present, but due to medication she has no cramps at all. However this action is not heavy, but is just a leftover of that cerebral haemorrhage back then.

According to doctors, this should be hopefully gone within the next six months … hopefully!

Besides all that, Lela develops absolutely brilliant! There are some issues with her eyes since she doesn’t really focus for a long time, but we will know more later or just have to be patient … like every other parents too! :)

Since Lela is out of the hospital we visit a physiotherapist each week due to the artificial coma and general development of her body and brain. On Tuesday, the 13th November approximately 30 minutes after Nurith left the house with Lela I received a call.
It was Nurith telling me that she fell down on the stairs to the physiotherapists place and that something sounded very wrong when she landed on her leg. Fortunately nothing happened to Lela, which was on Nurith’s arms during these moments - but the reflexes and quick reaction of a mother are unbeatable!

So I took a cab and arrived 20 minutes later at the physiotherapist’s place. Nurith had a big swollen foot and Lela was simply sleeping. Our physiotherapist took good care of Nurith and Lela and organized the phone number of emergency surgeon.

Then everything really went fast. A few minutes later Nurith was in treatment and had an x-ray analysis. When the doc came out the dialogue was quite funny: “damaged” … “damaged?” … “yes, damaged!” … “damaged … what?”. To get serious he explained to me, that Nurith’s fibula was broken. However the fracture wasn’t that bad, so she had to relax for a week and after that they would put on cast, so she would be able to walk again.

We still had so much going on this week, plus I had a lot of work to do. The following day was Nurith’s birthday and on Thursday we had an appointment at the hospital in order to get a recheck for Lela. So I just called my parents and since they didn’t see little Lela being out of hospital, they quickly decided to visit us for a week until Nurith was able again to walk again.

Regarding the recheck for Lela on Thursday there isn’t much to tell. We went to the hospital, an ultrasound check and a visit at Lela’s neurosurgeon. Situation still unchanged, no head pressure, the treated galeni malformation looked good, so there was nothing to worry about. Good news!

Our parents including my sister Jasmin arrived on Thursday evening and the enjoyment was very big, since almost the whole family, except my other sister Tanja who had to work, was united again for a few days. It was - and still is - great to see the “grandparents” enjoying our daughter so much! :)

Our little daughter turned four months today and as you can see on the pics we have a lot of fun, enjoying life and slowly start to turn our heads into more enjoyable directions …

Lela is developing well! She is laughing and smiling all day, babbles a few syllables and is working hard to exemplary suck her thumb. In the meantime she weights around 6 kg and has a size of almost 60 cm and with 38,5 cm her head girth meets the standard. Couldn’t be better!

Today we went to the U4, which is basically the fourth baby’s check after birth.
There is just one sentence in the little examination book: baby develops age-based

Lela really develops very well. She slowly starts trying to find her thumb and navigate it to her mouth. Her eyes are getting better, she is trying to focus faces and items and she laughs a lot while changing the diapers. Also the first tries of babbling arrive our ears. Could it be better?

I am a …

… a few notes here and there! Just listen a moment ;)

This time everything went really fast. We arrived at the hospital at around 11:30. A few minutes later we went to the ultrasound and after that we had our neurologist checking Lela again. Situation unchanged! What should I say? This little girl rocks! :)

What should I say? I think everybody who was reading the story so far, could understand how we felt after all these weeks. It’s been over a week out of hospital now and Lela did really great so far. The nights without sleep started … but it was simply beautiful to be finally that close to your own child.

The first check at UKE was set for today. It was and still is very important to check Lela frequently. Is the head girth still okay? Are there symptoms for raising head pressure?

Since it could have been to leave Lela at the hospital for one day, what we definitely didn’t aim for, we arrived as early as possible in order to get all the checks and visits of doctors within this one day.
After 6 hours of waiting we had the ultrasound examination behind us and after another three the visit of our neurologist. We arrived home at around 19:30 but with a positive result - everything was as it should be. Next date was set for the 11th of October.