Hospital once again

The pooh story on its highest point. Celina started this week to get little seizures and is sometimes not herself anymore so I decided to sort this out once and for all. No laxative seems to really solve the problem and Celina gets more and more blocked up. The doctor admitted her to hospital to sort this problem out. First we had an x-ray done which showed that she was stuffed up to the top and had also a quite big amount of air on one spot. We tried the first day with more laxatives and had no stool. Today she got a nasal gastric tube and they are giving her 100ml of water every hour . Now we sit and wait. Another thing which is happening at this very moment is that the physio is taping her on her tummy. These stripes of special tape are supposingly also helping. Lets see. And they are a nice bright pink. Looks really funky.  Well Lini is not even feeling uncomfortable and watching movies.

 

 

wowwwww nice movie. And I am feeling great. No problem. Last night I kept the ward awake with my laughter.

God is soooooo good. We trust in Him because He is the only one who will never leave nor forsake us and will always love us like no one else can. Thank You Lord!

Going forward

By Wednesday we will be off the morning Valium and just left with 5 mg at night. Aaaaaaand it goes well. We have a slight tightness in the arms and some seizures. They said so at school, I haven't seen any at home. And today even the arms were already much looser again. Unfortunately the pooh story doesn't seem to find an end. She is just not having a stool by herself. Very strange if that doesn't change soon we have to go and get this checked out.
And with the Valium we are going to take a break from the weaning after Wednesday and just watch her. Then in 1-2 month we are going to go on and hopefully latest by January she will be completely off again. The first tablet went very well. And I believe the second will go off great too with no problems.
She is still laughing a lot and the laughter gets so giggly, sometimes its like one is almost waiting for her to say something or just get up. It sounds so normal. Today she burped, looked at me and burst out laughing. Is that not normal child behaviour????? I think so. She is also still standing every day in her standing frame and I started some little grab exercises with her hands and I can feel her grabbing my thumb. It is better on the left hand then the right but anyway I was quite surprised when I did it the first time with her. How exiting!!!!!!

Up the head and looking around and being the happiest child ever ... and no smutched eye.

 

 

Thank You Lord for small miracles AND the BIG ones too. 

If it is not the one thing it is the other

The last month was fairly quiet. Celina is on holiday. 2 of her classmates ended up in hospital with pneumonia and then in the end Celina too. But we were only 2 days in hospital. I reacted very fast this time and caught it super early. We got a nebulizer from a friend and so could do everything Celina needed at home. Celina is very loose and ja I am doing it again I am busy weaning her off the Valium. I now really got a lot of experience with it and we are going very slowly. Every 8 days a 1/4 tablet down. The first 1/2 is gone already and our girl is doing well. Still loose and happy. Now one thinks one can still have a bit of holidays and just relax. Ja .....right.

And with going down with the Valium we now really don't need to run into any dramas. Well like that is with us there must be always something. Celina had for 8 days no stool but shows no signs of discomfort is happy and laughing. There is no sign of constipation, her stool is soft but just don't want to come out. I am running out of ideas and the doctor just put her on a laxative. I don't know if that is helping besides making the stool even softer then it already is. And that is going to be a big mess once the stuff is coming out.
Sorry this is really a poohy story. But that is what our life looks like at times.

Otherwise our little darling is gaining more and more head control especially when she is laying on her tummy where she now lifts up her head and starts looking around in all directions. And I sit and watch this in amazement. It is just amazing that from just laying there on the tummy and not even lifting the head at all but rather pressing one eye into the towel or her hand and ending up with a smutched eye .....to lifting it up and looking around with perfect neck and head movement, looking at her surroundings. Thank You Lord. And her legs are by now so loose that one can just move them around to every direction and even roll our little girl all over the bed backwards and forward.
Now really does that sound like just from a surgery. I don't think so. I believe God has His hand in there big time. And we are going to see far more. Just watch this space.

Sorry no photo today. Our computer needs some sorting and I can't load photos at the moment. But I promise there will be soon some again.

Thank You Lord for Celina's progress past, present and future.