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!
