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.
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…….
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.
So, I love broccoli. Like really love it. Not as much as green beans but almost. I wanted to try it roasted and searched the good old internet and found this recipe. I tweeked it a teeny bit. So I can’t take credit. But feel free ;)
What you’ll need
Olive oil (basil infused is awesome)
2x garlic cloves
Just these few ingredients make the best broccoli you’ll ever taste
So take the broccoli and cut it into florets
Drizzle on some olive oil (I use one infused with basil. Just cause) some garlic (I’ve cheated and have frozen. Mostly as I can’t be arsed to chop/mince) and a little lemon juice. Not loads. Maybe 2 teaspoons, then give it a good mix.
And whack in the oven. 20 mins or so. 180ish.
Once roasted, drizzle on a little more lemon juice (again personal preference) and some grated Parmesan and voilà
I added asparagus today. Also just as awesome.
Hello my lovely twitter people. I am asking for help from anyone who has a small business or anyone that can help with a raffle prize in turn for free advertisement at our sale that is happening at the end of November.
I have copied the letter we have been sending out to local business and further afield. Jojomaman Bebe have kindly donated a £30 voucher so on hearing this, I though why not ask all of my lovely Twitter friends who have businesses.
Old Town Children’s Centre
Old Town First School
Dorset, BH15 1QB
I am writing to you on behalf of Old Town Children’s Centre. The Children’s Centre Parents Forum are currently planning our Nearly New Sale Event which takes place on 30th November 2013. This will consist of a morning of fun for the children and their families and a nearly new sale. This will be our third event and the previous two events proved very popular.
Money raised at the event will be used to enable the children that attend the centre to have a Christmas party.
We were hoping that you might be willing to supply us with a suitable prize for our raffle. Any product, gift voucher or discount voucher you could donate to us would be much appreciated.
In return we would be able to advertise your business at our event via leaflets.
If you were able to help please send you donation direct to The Parents Forum, who are supporting parents and the community to raise funds for their Christmas party at the address above. Or you can contact myself via twitter or Kirsty Scott 07800 989523. If you require any more information please do not hesitate to contact me or the children’s centre on 01202 261969.
Thank you in advance and best wishes from everyone at Old Town Children’s Centre.
Old Town Children’s Centre Volunteer
Many thanks you lovely lot.