Hi guys,

Reading I see there are a few new mums to this forum. I have only been on this forum for a few weeks and I can tell you I have read some great ideas and these girls are so supportive. I guess we can all share from our experiences.

Monica & Emma - I too have a little girl in a spica, this is our third one. I found putting a sanitary pad in the nappy only seemed to soak the urine and have it sit there and it leaked up into it anyway. Like Haileys mum, I found putting a newborn or infant nappy as far up the back of the spica and shoving it in the front and them putting a bigger nappy over the top was the best solution. I use a fair bit of powder too!!! I dont think there is anything that will stop a little bit getting back there, and it does smell. I find that the worst part. And it only takes one good soaking to do it!!! I find dresses to be the best option for day wear for her. And sleeping at night - we have put a pillow under her mattress where her head and shoulder blades are just to elevate her slightly, also we roll a blanket under her ankles so there is no pressure there. We try to keep her as elevated as possible through the day also to stop any runs down the back.

Paula - Not sure if you have tried the plastic and shower yet. All I do is a good old fashioned sponge bath. I wash her hair under the kitchen tap while supporting her head and shoulders and now that it is warmer weather I just sponge as much water as I can over her being careful not to get any down the spica. I feel like I am ripping her off every time I do this, as she loved her baths!!!! But she has learnt to love this just as much.

Our little Eleni hates tummy time with the spica on also. I hate doing it to her. But I try to do it a few times a day, just to take some pressure off. She loves just to sit on my lap facing me, I am lucky as her legs are far enough apart that she fits perfectly there!!! I also lay down and have her sitting on my tummy. I try to have her in as many different positions as possible. Carrying her can get a little tiring after a while though and I have bruises on my hips from carrying her there!!!

I know exactly how you guys are feeling. I am still trying to deal with the emotional side of all this. Every time I look at Eleni, I feel like she is missing out on so much. I guess I feel like I am too. We all dream of our little ones happy, rolling, crawling, walking, running, and it breaks my heart to see her like this. And she does get so frustrated sometimes.I think it is harder on the parents than the babies. They really dont know any better. And they will forget all about this, we are the ones that will carry the emotional scars!!!! I was to the point where I did not want to go anywhere and see all those "normal" babies, doing what babies should. I really struggle. Now I am trying to take one day at a time, and just trying to have as much fun and make her as comfortable as I can. It is good to see the mums that have been through this and live to tell the tale write on here, because you can kind of see the light at the end of the tunnel. It will get better.

We are off to Syd on 11 Dec to hopefully just have a spica change. We still have not heard anything from the CT scan we had 3 weeks ago!!!! I am just crossing my fingers that we dont get up there and they decide to operate this time.

Hope all you guys are well, and your precious little ones too.

Take care.
XXX