Vera Rubicon

Vera Rubicon

Denne bloggen...

Handler for det meste om vår sønn Leon og hans situasjon med Jacobsens syndrom.
I tillegg er denne bloggen stappfull av kjærlighet, frustrasjon og humor.
Her legges også ut noen av blinkskuddene vi tar med kameraet vårt.

This blog is about our son Leon and he's situation with Jacobsen syndrome.
This blog is also full of love, frustration and humor.
Some of our best shots with the camera is also here.

Controll at the hospital

EnglishPosted by Vera Rubicon Tue, October 06, 2009 08:49:42
Leon is now 10 months old and yesterday we were at the hospital for å new controll. The last controll was 4 months ago.

The biggest problem at the moment is Leons low trombocytts. There was taken some new bloodsamples of Leon, but I havent got the results yet. The last results was at 68 for about 4-5 weeks ago. It took about one hour for his blood to coagulate after the needlesting yesterday, so I think his trombocytts are still low.

It seems like his hart and kidneys are fine, but I feel he should get some further examination. I dont want a unplesant surprise that indicate that there is someting wrong with his heart or someting like that.

We want to know what damages his brainbleeding has caused and if there is a possibility for CP. At this point we only know about his eyes. And that his nerves and sharpvition is damaged. There will not be taken an MR scan now and the doctor says that since he dont have any spastic movement, there is no reason to think that he should have CP.

We also talkt about when Leon should start in kindergarden. The doctor think that he could start one year from when he was expectet to get born, that meens about 1 march 2010.
I'm not sure that he's ready ( I'm sure not ready either) then and I feel it is more safe if we wait untill autumn 2010. it is also a lot of planning for the kindergarden before Leon can begin. Specially because he cant play with other children without a grownup who's watching all the time.
Leons low trombocytts doesn't allow rough playing and he will be needing a little more training and learning than other children. Leon also have problems with his seight and that's someting they have to consider in the kindergarden.

We did agree with the doctor that Leon should be trated like all other children and that he should get the same possibilitys. This has always been my intention, but its still nice to hear that the doctor looks at it the same way.

Leon has lost a little weight lately and he's been having some problems eating. We are still working with this, but he seems like he doen't want or like some food. The only thing he always wants to eat is fruit and youghurt. And he throws up if the food isn't smooth enough. It takes a lot of pations feeding him...

The next controll at the hospital is 6 months from now and then I hope Leon will get som further examination. And I hope I can get som more tips about what to look for about JS from other parents with JS children. This will be 6 months with reascherts...