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Sunday, 30 October 2016

It's all poo!

As a mother of a baby with special needs there are some things I have come to terms with never happening. There are many firsts that I know we will not get to experience with Teddy, and that is completely fine. As long as my son is happy, as healthy as he can be, and knows he is loved, then I am one happy mummy.

I believe Teddy experiences happiness, he cannot show us this in the usual manner, he has never smiled but we definitely get the odd smeyes (smiley eyes for those unaware). He has so many non-verbal cues that have taken a long time to hone and fully understand but we do now, his communication is excellent if you truly know him. So recently he has been giving us less of the happy cues and more of the grumpy ones. Its becoming a bit of a running joke now with everyone involved in Teddy's care. Most therapies start with us all gleefully singing; "Hello Teddy how are you? How are you today?" To which the reply is always GRUMPY!
It sounds ridiculous to say it, but its so draining him being so devastatingly grumpy all the time. I find it draining because it is just so unfair, my gorgeous little pudding has so much going on in his life. He is one and has already gone through more medical things than most people do in an entire lifetime. So I need to fix what I can and attempt to make his life as happy as I can.

After a bit of deliberation, we have all decided that his grumpiness is solely down to poo. Every time he needs a poo we all feel his wrath. He is in so much pain that he just cries for hours until he finally manages to get some release. Once we realised his issues were all poo related, it gave me a glimmer of hope that his issues are fixable. I contacted the dietitian straight away and was told she would get back to me asap. She did not! I love all people involved in Teddy's care and I must say we are extremely blessed to be in our catchment area because all the professionals are amazing... except the dietitian. On three separate occasions I have attempted to thrust Teddy's nappy in her face and she has had none of it, she just shunned the nappy and gave me the same crap reply "It's fine, we won't change his feed because he is tolerating it." Ermm... NO HE BLOODY ISN'T! The poor boy is screaming in pain, cramping, thrutching and then when he finally manages to make it's not pretty! In the end I was so exasperated with the woman, I showed his consultant instead. He snatched the nappy off me and in the most professional way he could, he hit the roof. He made sure he wasn't negative towards anyone in particular (however we all knew the dietitian had messed up!) But he couldn't believe Teddy had been left this long with a cows milk allergy! Poor little man! So instantly he switched his milk and honestly, within days it was like we had a new baby. He was relaxed, happy and pooing.

This lasted for about a month. Now we are back to a grumpy little man, and battling with the dietitian. She refuses to admit there is anything wrong, she never actually looks at him and then gives all her ridiculous assumptions. She wants to go back on the old milk because she doesn't believe there was a problem before. How would she know? She's never looked at any of the evidence I tried to give her.  Yes the benefit of the new milk hasn't lasted but he is a damn sight better than he was. She is coming around tomorrow so I thought it was best I vented here before I give it to her full barrels in the morning.

So I guess the point of this whole waffley post is to tell you all, I will fix this.

I have decided that milk just isn't working, no one is meant to live on just milk and I think this is what the problem is. My son's body is not getting what it needs, he needs more fibre, more nutrients and all the good stuff we get from food. So, what i'm telling you is, I'm going to feed him. Not in the way I would expect to be feeding my son, but feeding him none the less. I'm going to cook, blitz and then tube feed my baby boy. I'm going to do one of the things I thought I would never get to do as his mum.

We are going to wean!

So watch this space, it could all go horrendously wrong but we will give it a good bash.
Wish us luck.
For now, we keep trooping.

x


2 comments:

  1. So many sentiments I recognise! My daughter was different but I had some of the same struggles,especially with professionals ignoring me. Mother knows best. If Teddy is largely immobile then constipation will always be an issue and he may need long term laxatives. It may not be the case for you but worth considering.

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