I don't think this is ever going to end.

[Tegans Mama]

There has been a lot of drama here lately.. First of all, as Tegan's getting that little bit older, the differences in her are getting more and more obvious. She has very little movement in her legs - they will bend at the knee sometimes (I'd say about 4/5 times a day or her feet will twitch. She obviously has hardly any feeling in her legs because she's started scratching them - I don't mean the little scratches all babies have on their faces, these are big deep scratches, she really grabs onto her skin and digs her nails in. She acts like her legs aren't there. Because she can't move them (she can't lift them up from the hips either, so they are just there) she has no idea what they are.. She's just started rolling in the last week which is absolutely amazing.

I'm convinced now that she is not going to be able to sit up on her own. I know is only six months old but she can't feel anything from about her belly button down so maybe she won't be able to hold herself up?

Our OT and Physio are both a pair of idiots... OT has seen us once and told us she was getting Tigs a chair to help her sit up and to help align her hips and we haven't seen her since. Physio is just an idiot because she's rude, calls over at our house unannounced and sends abusive texts/leaves abusive voicemails when we aren't in.

I am having a hard time finding the right dosage of lactulose. When she started lactulose she was also on gaviscon which made her constipated, so the lactulose helped her go - she was on 20mls a day until about two weeks ago. Now she's not having Gaviscon I can't seem to find a balance. Too much and she has diarrhea, too little and she's screaming because she can't go. So She's now on 2.5mls of lactulose a day as a trial, and will increase/decrease if needs be.

A good thing is that she's not being sick even nearly as much now, so she doesn't need Gaviscon anymore. Thats one less thing to worry about...

She's peeing a hell of a lot at the minute.. I'd say ten heavily wet nappies a day. And there is always a lot in her catheter so its a good job we're seeing the urologist in two weeks time. I seriously think we're going to be told that she needs more meds/cath'ing more than twice a day.

Ooooh the final thing (sorry this is so long lol) is we have two teeth!! The bottom two.. She also has the tips four back molars but they don't count Because no one can really see them...

So all in all, I was having a giant moan and getting a few things off my chest. Could do with a giant hug and a glass of wine I think! Lol

 

[Emmea12uk]

I'd give you a giant hug if i saw you honey. I am not going to pretend I know what you are going through with her legs, as I dont. I know that no matter how you prepare yourself for these things, actually seeing them happen is still hard. I was gutted when it first dawned on me that his legs werent normal. is all i can say. Tom did go through a phase of gouging his thighs and the physio said it was normal and because he couldnt make the connection that he was causing the pain. He eventually stopped - but I dont think that is much help to you is it - your instincts are talking to you and as her mum, only you can really have any sense of judgement.

I always thought that they could still sit up on their own eventually as the core muscles they use remain unaffected by SB. I could be wrong, but six months is only when the average baby starts to be able to sit. Tom only started at six months. It is so hard to not try and watch them like a hawk and second them. My physio is constantly going on at me for saying he isnt going to do this, he isnt going to do that. I wish i could just let go and let him get on with what he will or wont do.

I think you really need to call your OT - Do you have early support? If so your key worker can sort it all out for you if you speak to them. Tilly has a similar level of SB to Tegan doesnt she and she has loads of things from her OT to help.

Maybe when you go to your urology you could talk to them about her bowels. Toms are really really bad and I am going to have to go back and talk to them about enemas. Everything gets so much harder once they are weaned and Lactulose and Senna were no longer good enough for Tom. We are getting by on Movicol at the moment, but he is still constipated for days on end.

re her bowels, I found a VERY useful article on managing bowels and bladders in infants with SB - it tells you everything you need to know from birth to surgery. ask me for it and i will send it next time you see me on msn. I find it so hard to sit back and accept what the urologist says as it doesnt make sense to me. This article really helped me understand and give me some assurance about the future.

My friend relied on gaviscon and stopped needing it once her baby was fully weaned?!

yay for teeth!!!! Tom will race her for the next one!! even though she has technically won with the back teeth!

You are a fab mum and you always seem so strong. You seem to cope so well. Tegan is a credit to you and she is utterly beautiful. She seems so happy in all her photos and videos. You and H have to be great parents!

One day in the summer we will have to def meet up and have a few bottles of wine and some beer for h! I can imagine the giggles we would have!