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


Diary #1 He got some new wheels


I have had this idea that I would like to share with you. My little man has a pretty hectic life, his diary is jam packed (I say his, its clearly my little Cath Kidston number!) So how wonderful would it be to let you know all he has been up to. In turn this will make me write it down and actually see where we are up to.

Well this week was a biggy, as you can tell by the title, my little man got some new wheels. Teddy the trooper is now fully mobile. Our physio is on it, she's really good. Sometimes I feel she might be a little too organised but I guess that can only benefit Teddy. There have been times when she has been super excited about referrals for every service she can think of which can be truly overwhelming. Sometimes I just want to stop and smell the roses! I want to feel normal for a day or so and wheelchairs, botox and splints are not normal for a 1 year old. But on the other hand, there are people in different catchment areas fighting tooth and nail to get the basics so I should stop being a mardy cow!

When we arrived for the posture assessment, the physio came with and helped make sure Teddy got the best. The posture and mobility lady was amazing and knew straight away what Teddy needed, just from looking at him. No time was wasted trying out seats, she knew instantly that the 'Snappi' would provide the support he needs. And oh how right she was!


One problem.... well there's a few but I will start with the biggy... It doesn't fit in our car. We have a lovely red Polo which I adore. I like that I still feel me but in a car that accommodates family life- well it did! After trying it several different ways we found the wheels would just about fit in the boot and then the seat would have to go on the passenger seat, making it extremely difficult to have anyone other than me and Teddy in the car at one time. But needs must, he needs a seat so I will just have to get over it. However, due to some numpty, the Saturday before we were supposed to pick up the chair, my lovely little Polo received a bit of a make over. Front and back. So now Penny Pounder (that's our name for the Polo) is in the garage getting tarted up, and I am whizzing around in a Corsa. A car I never would have considered but... the Snappi fits! Like a bloody glove!

Anyway, enough about cars, back on to the chair. Well its super supportive, I picked the colours myself so it looks fab and complements Teddy's outfits to a T (Priorities right?) It's so easy to take apart and fold, it's light and whizzy- pretty sure that's a real adjective. I really can't get over how old he looks in it, he looks his age. For so long he has just looked like a giant baby in his pram because he slouches. So many people, especially old people for some reason, would pop their head under his hood and say "Awww look at the baby sleeping!!" errrr NO hes wide awake and not a baby! Now people talk to him, instead of me and I love it. He is so much happier finally being able to see the world, he is loving having a good toot about.



Now for the negatives, I doesn't have a hood or rain cover and as it is a special needs piece of equipment, they are extortionate. It really grinds my gears that special needs things are expensive, as if its not bloody hard enough! They know if you need it you will pay. Well I refuse, hopefully we will get them funded but I think its rubbish that they don't come as standard. Secondly, the suspension is non existent. We had a Joolz eco day (beautiful pram- not a bad word to say about it!), so to go from that to this is a dramatic change. Teddy is feeling every single bump in the road and its causing all kinds of secretion issues. I will bring this up with them to check its not a problem with how its made. But right now it's p****ng me off.

So at this moment in time we are having a bit of a love hate relationship with the ol' Snappi, watch this space. We are only a week in and I'm a fickle little thing so I will probably feel completely different once we have used it some more.

Next week hopefully brings another new piece of equipment to our lives
For now,
We keep trooping
x

A year on.

I know this blog is all new and I haven't had chance to post all the musings I have had throughout this year but instead of dragging up the past I thought I shall just say how I am feeling right at this period.

Teddy turned one last week, an exciting time for any family with a baby, but mammoth for us. When Teddy was born, we were told firstly "He won't make it through today!" then we were told we had days, and swiftly, days turned into weeks. One thing we were never given was years. We were told years was out of the question, so we quickly turned to the medical staff and said "If we have limited time, we don't want that to be spent in hospital, we want our son to see as much of the world as he can in his short little life!" 

A year on and we have been busy busy busy. We have tried to pack so much into the year that I feel sometimes we have barely had chance to breathe. Its become a bit of an issue for me and my husband now- I NEED to keep busy, if we have nothing to do, I make us have something to do. I have an innate fear that if we are not busy we are wasting time and if we stop, Teddy might stop. My husband however, would like us to just relax and try and enjoy and embrace what we have, a lovely sentiment but I just can't. I procrastinate, I don't do things I need to, so this need to be busy doesn't help me achieve anything, its not productive.

But it helps, being busy means I don't think, I don't have to address anything. I can just fumble through life, a job at a time and not have any down moments to dwell. Apart from this last week or two. We went big, we planned a christening/ birthday to mark the momentous occasion with all our friends and family. We carefully designed and crafted everything and threw our boy a wonderful woodland bash (I will talk more about this in another post!) 

Once that was all over I really had nothing to do.  We had friends round and had a lovely night on his birthday but then there was nothing. I felt like it all just hit me! I am in a group with other mums in the same situation as us and they had all talked about birthdays being horrendous but I couldn't see that. I feel so privileged to be having a birthday that I couldn't image ever feeling sad. But they were not wrong. All the emotions from that time just flood back,I was back in NICU with my face pressed against the cold plastic of the incubator, crying and pleading with him to just wake up and be OK. My timehop has been a constant reminder of how long the days were and those gut wrenching moments when all I wanted was to hold my baby and I was told I couldn't as he had to stay on the cooling mat. They told me "When we know we are not winning we will take him off and you can hold him!"So I had to learn to cope with the fact that the first time I was going to hold my baby was to let him die in my arms. 

I am reliving a day at a time, I keep thinking, this happened then etc... So right now I'm still not in a positive place. I am having lots of cuddles and holding him tighter because I can and couldn't then. I don't want this to seem like I don't feel happy about my son, I am so in love with him and I am so grateful for the time we have had. I just hated those first few months. Its those that make me sad. 

We do have lots of exciting things happening which I am definitely going to share with you, so hopefully posts can be more positive. I just needed to vent. 
Thank you for putting up with me. 
We keep trooping
x