Wednesday, 26 March 2014

my story part 3!!

From that moment forward everything seemed to be rush, rush ,rush. trying to do what ever they could do for her, they sedated her and sent her for a MRI scan, while we were waiting for the test results coming back and while she was still  half sedated they sent her for a lumber puncture. for this they wouldn't  let me go with her, I had to wait out side, they said it wasn't something I needed to witness with everything else that was going on. but as I'm standing there outside in the corridor, leaning against the wall I hear my Angel crying. Iv never felt so guilty for leaving her to go through it on her own, and its possibly something ill never forgive my self for. I truly feel like I let her down.  Back in her room on the ward it became a waiting game. she had had so many tests done I cant even remember what they were all called. we now just had to wait for all the results to come back. This is where I became restless and feeling useless. My Angel was laying in the cot hooked to different machines  and I couldn't even pick her up for a cuddle.  all I could do was stand by her and watch. by morning the results came back and they all came back normal apart from the MRI. but this just showed some swelling which they put down to bruising due to the seizures and it should just calm down and go in its own time.  So again we were back to square one not knowing what was wrong with my heart broke. I think I spent 3/4 days sat with just my Angel worrying what was going to happen because my partner her dad had to watch my son until we could organise a sitter for him. We were all going through so many different emotions, my partner was worried about leaving me on my own to deal with everything and worrying about what was going to happen to our Angel, Where I was worrying about our Angel and the guilt I felt for leaving my son for so long. But the day after we got a little spark of good news. the dermatologist   came to see our Angel and as soon as she seen her she came out with the name Incontinentia pigmenti. I felt a big  weight lift from my shoulders. to have a name to put to the thing that was making my Angel so ill. She spoke to the other doctors and they all seemed to be agreeing with her so they came and took bloods from Maisie and me and sent them off to be tested. they explained that this illness that they thought my Angel could have could of been past down from me. again my heart sunk. thinking that I could be the reason for her being so ill but that was a worry for the future. The doctors who were dealing with my Angel decided they wanted to start taking her off the machines to see how she coped by herself. and I was extremely nervous but I was so happy because I took it that things must be looking up if they were willing to try. This is where my story starts to look up. within 3 maybe 4 hours of being off the machines and drips and things my Angel started looking for a bottle and once she started drinking her bottle there was no stopping her. she just started fighting back and getting stronger. she was still on the anti seizure medicine but she was starting to look more like my little girl again

The Video shows my Angel as she is getting better.

Thanks for reading our story, there is more to come shortly. 

Susie. xx


  1. Ur story sounds almost alike as melody! She started cryin the night before and I couldn't get her to eat anything!

  2. did she have seizures also?. x