Caitlyn and her stuff

It’s been a tough week, Caitlyn was diagnosed with yet another medical problem, Narcolepsy.  I thought I would list all of her stuff as she likes to call it. So, this is her stuff with brief explanations.

  • Complex Chromosomal Abnormalities – She has a deletion on chromosome 2, she has a translocation of chromosome 2 onto chromosome 3 and she has an inversion also on chromosome 2, which basically means it’s upside down. Phew. This complex set of abnormalities hasn’t been seen before in medical journals. So we have no way of knowing what long term problems there are, but this could explain a lot of her current problems.
  • Learning Difficulties – So yes, this could be related to above or it could be related to her autism. I don’t think it matters really one way or the other. She is running about 5 years behind mentally and academically.
  • Autism – Thankfully only moderately.
  • Dyspraxia – Things like riding a bike, being able to stand to dress her self etc are huge problems as are fine motor skills.
  • Allergies – She has quite sever allergies to nuts, almonds being the worst. She carries eip-pens
  • Asthma – She has never outgrown it, but learnt to control it pretty well.
  • Bowel Problem – She gets bunged up a lot. I won’t go into detail but takes movicol for it.
  • Epilepsy – Right temporal lobe with a tendency to generalise
  • Narcolepsy – Right now, we don’t know much or what the future holds but we will cope as we always do.
  • Cataplexy – Goes hand in hand with narcolepsy. When she laughs she often loses control of her muscles and falls to the floor. I often thought she was faking it till she almost drowned in Spain a few years ago.

Honestly, right now my head is all over the place. It’s a lot to take in. I have known about the last 2 problems for over 4 years and I’ve had to fight my case. They discovered her epilepsy and stopped looking and blamed everything on it. Her tiredness they said was related to the drugs she is taking. But I knew it was more than that. And finally at long last we’re on the right track. I have no idea what the future holds, whether she will be able to live alone or what her long term prospects are. But right now the only thing that matters is her. She is is amazing. I love her so much, I admire the way she copes, how she just accepts all of her problems. I just wish I was so accepting. It’s not bloody fair.

Dummy Detox

I always knew I would get rid of D’arcys dummies before she was 3. And Christmas seemed a logical time. Getting her to put the dummies on the tree, and Santa could come and get them. Basically I was trying to make it more magical for her. Cause those dummies were her life. She had 3. One in the mouth and one in each hand. Which she stroked her face with. It was never going to be easy taking them away. And as hard as it might be. I don’t regret for one moment her having a dummy. I am over the moon I haven’t got another thumb sucker. I only wished when Caitlyn was younger I gave her one and not think “Oh look how cute she is sucking her thumb” She wouldn’t need a ton of dental work now, nor her mother in her ear every 5 minutes shouting “THUMB”

I lost a friend over letting D’arcy use dummies. Ha. Yes I know. Ridiculous. But some people are very judgemental. She was my longest standing friend I’d met over the internet. But she deleted me from her life as I basically called her out and asked why she cared whether my child had a dummy. It was none of her business.

I wanted a special way for her to give her dummies up. So last night we hung them on the tree.

She cried a lot. It was almost like cold turkey for a toddler. BUT on the tree they stayed. I won’t lie. It was fucking awful through the night, she woke about 35 times. Crying, grinding her teeth, begging for her dummies. But I didn’t budge. I couldn’t as I actually threw them out before I got into bed. BUT we have got through the night. It can only get better, right? RIGHT?

This morning she had a lovely message from Santa’s Elf. For being such a BIG GIRL.

She was a little scared to look behind the curtain. But finally…….

Test(ing) my patients.

So, Caitlyn had a neurology appt today. To talk about maybe the long process of being weened off of her epileptic medication. She has been seizure free for a while. And me and her consultant are in agreement. No medication if necessary. She has spent so much of her life on meds we’re fed up with it.

Her tiredness is still a major issue. So, a plan of action is in place. Although like everything it’s going to take time. I kinda wish this was put into place 2 years ago. I don’t know why the waiting has to happen. I could have suggested these things needed doing back then. In fact I did. But protocol has to happen.

BUT she is to have a MRI scan [again] but not just any old MRI. She is having a 3T MRI which is basically the best of the best. Only a few machines in the whole country. And luck has it one is in Poole Hospital. It’s basically the high def of an MRI. It can look clearer and better at the brain. So that will be happening very soon, in the next month I’d guess. But then it’s Christmas. And all we do is wait so it might be in the new year now. The main reason for the MRI is to see if her brain is clear to come off of medication. The other reason, well, it’s to see if there are any growths.

Which leads us onto the lumbar puncture she will be having. Not sure when but soon. And the reason for this? To check nothing untoward is happening. We didn’t say the word, but we both knew where we’re coming from. Cancer. Although I am HUGELY doubtful. The tiredness has been going on for 7 years now. I am sure there would have been a lot of symptoms along the way if it was pointing towards that. Scary times ahead. But like I said. I am very very doubtful it’s that.

So, there we are. More waiting. But on the right path. Just wish this path had a conveyor belt.

36

So. It’s my birthday soon. 20 days today. I don’t really get presents. It’s just how it is. Maybe one day if I ever get a man and can adopt his parents who will be the best in laws ever., I might. Obviously that will happen. Anyway. This is my wish list.  Which I will probably add too.  But right now. Far too tired. We all know I love gin. Hendricks if you please.

 

ipad

tom

bag

imageload

dan_aykroyd_s_crystal_head_skull_vodka_70cl_with_box

But most of all, right now. I want the charity that funds our holiday to grant it. I am very sad about this. My girls are going to lose out. I applied a month ago, they normally get back to me within a week and no doubt the park we always go too will be fully booked. So yes, the caravan holiday would be the best present ever. Yes, I know it’s a charity. And I should be grateful I get something as many of you don’t. But raising a child with needs that are special is bloody hard work. But this holiday is for her. For her to relax and enjoy herself. Means I get a bit of respite. Sorry felt the need to justify there.

Irks me.

Sometimes I read stuff on-line  and it really does irk me. Like “solo parenting” and what a struggle it is. And “solo bedtime” and “solo bath time” I dunno. I guess as I am a solo parent ALL the time it gets to me.

I don’t think the world owes me a favour, but I have feelings and sometimes reading stuff like that makes me want to shout “I DO IT SOLO ALL THE FREAKING TIME”

Maybe see it as some one on one time with your child. Not about how hard it is, being a parent is hard full stop. Maybe stop to think about those that are doing it solo ALL of the time. Not just single mums, as there as there are single dads out there too.

I never set out to be a single mum and to be honest, all the other single parents I follow on Twitter didn’t set out for it. But for me. It was a choice I made to leave an abusive relationship. I don’t want to be single, nor a single parent. But that’s what I got right now. Unfortunately.

 

Just want to add. Many of us, single or not. Us mums [sorry dads] do most of the work, we do the bath times, we do the bed times. Even with the partner in the house. You still do it. So, if they aren’t there it doesn’t make any difference other than under your breath you’re not cursing them for not helping. The phrase “solo parenting” gets thrown around so often. It IRKS ME

Me guilty? Probably. Maybe.

I suffer so badly with feeling guilty. Guilty over doing things with my kids, or not doing. I worry if I am doing enough, if I am nurturing them enough.

I look at D’arcy and I am so proud of her, she started walking at 9 months, amazing. Her level of understanding is also amazing. She is very clever and responds to commands and understands consequences, such as TV off if she does this, or does that. But her speech? It’s just not happening. I worry it’s to do with her tongue tie, and I worry it’s to do with her dummies. But mostly I worry that she is going to have special needs like her big sister. It scares the hell out of me if I am honest.

I encourage her to talk, but she gets moody. I try to read to her, she normally jumps down, takes the book and throws it. She’s not interested. We do colouring, I always name the colours, she ignores me. It’s so frustrating, when I see other kids, younger than she is talking, proper words. And here D’arcy is, and can literally say “no” “mum” “bye” “shoes” and what sounds like “see later” but not that clear. Oh and “juice” none of these words are pronounced properly but well enough for me to understand them. But by nearly age 2. She should know a lot more words, she should know colours, or some at least. If I ask her get me the pink crayon. She sometimes gets it, fluke maybe. But mostly she ignores me. I tell her one. She holds up one finger. See she knows what I am asking of her.

I guess this time around I want to go at her pace, but is that too slow? With Caitlyn, before I knew she had her needs. I literally made her grow up too fast. Sat her down to do learning, I made her grow up too quickly, became her teacher. Numbers, words, colours.  Kids need to enjoy their play I think, not be made to learn so young? After all they will spend so much time at school learning. I didn’t want to force D’arcy like I did Caitlyn. I am not a fan of pushy parenting. But then I sometimes think I am too lazy with her? I don’t know. I am quite active with her, she goes out a lot to the park, goes to toddler groups, see’s lots of other children her age. Goes to soft play. I play with her. But not loads. Only so many times I can drink pretend tea and colour in. Maybe that’s the key. Maybe it’s not enough.

Competitive parenting is much more common these days thanks to the internet. And I worry I am not doing enough when I see others do things. I can’t afford to take my girls to places every weekend. That gets to me.

They are loved and they are well looked after, but is that really enough? I just know I feel guilty.