update on Ellie......be warned.very long!!!!!!!!

[anniebear]

Thought I'd bore you all with an update!!!!

For those of you who don't know us...Ellie who is now 3, had Meningitis at 8 months and very nearly died.

We were told she would be severely brain damaged....

She is now walking and trying to run!!

She can put about 5 words together and is doing really well.

She is going to a special School at the moment(her Twin Grace goes to another pre school) Special being the correct word. The staff are great there and love Ellie to bits!!

My only concern is that she is the most advanced in the class. They split the class into two, so the more abled ones go into another room. But they do often come together and I worry that she has no body to learn from as a lot of the children are severely Disabled. None of them speak.

I would love her to be able to be with children who are doing things that 3yr olds should be doing so she can learn from them, but I am realistic and know she isn't ready to go tmo a mainstream group yet.

We viewed our local School the other day and are going to Register both Girls. They start in September (they will be 4 on Aug 31st!!!!!)

Ellie at some point will go along for a few hours each week with a helper and gradually, hopefully, this time will increase.
you may remember a while ago I asked about a social worker and I also asked about Ellie's behaviour.

WE are being referred to a Child and Family Support Centre, where we will get to see an Educational Psychologist (still waiting!!) and are also hoping to fet a social worker through this and apply for the Direct Payments that I read about on here. I desperately need a break in the School Holidays!!

Sleep still not good!!! We continue to give Ellie Phenergan every night. We were told by the Neuro Surgeon that it won't do her any harm. It just makes her a little more sleepy so she is not bouncing round for two hours!!

The Neuro Surgeon doesn't want to see us anymore and Ellie was discharged.

She is being weaned of her Epilepsy medication after Christmas. I am dreading it. There is a 50/50 chance of her developing more seizures.

I will shut up now, sorry, can't believe how waffly I am being tonight.

Don't suppose anyone made it this far down the page...congrats if you did!!!! I am putting a few months posting into one!!!!!!!

Sory about all the mistakes, it's way past my bedtime!!!!!!

Anniebear

It sounds like she is doing fantastically well

By the sound of your post the girls are going to go to nursery together. That must be a wonderful step for you. Hopefully she will do well off her medication after Christmas. Best wishes to you all

excellent news annie - you must be very proud of her (and Grace of course) - my dd is called Ellie - lovely name

Great news anniebear!
Your girls are right on the cut off date!!!
DS has his birthday on 30th Aug but we still have a January start here so he didn't start until he was 4.4nmonths. Bless them both!
I am so glad the Ellie is doing so well at her Special school. It's difficult to know what to do for the best isn't it, you want so much for them.
My dd is doing well at SN nursery but has started mainstream for 1 session a week, which will be upped to 3 in January. This was done for the same reasons you have mentioned- she mimics so well and needed to be in a language rich environment, which she wasn't getting at SN nursery alone. It's early days for her but we live in hope.
From what I have read from some of your previous posts, you and your girls sound lovely- I hope things continue to go well for you all.

Am so glad that both your girls are doing well

Hi anniebear. Sounds like Ellie is doing so well.

I know what you mean about the SN nursery and having no-one to learn from. We are in a similar position with my dd where she definitely seems to be the most able in her group and I have worried about that. However, I feel she does get lots of other interaction and stimulation from other kids outside of nursery so I'm trying not to worry about it. I guess as Ellie has Grace around all the time she will be getting that too.

Re: epilepsy medication - what is she on? Is it vigabatrin? the only thing I would say is, from what I've picked up, do the weaning very very very slowly. Even more slowly than the doctors tell you to. It's not going to do any harm if it means she is on the meds for a month or so longer... I do completely understand your worry about this. As you know my dd also has epilepsy (infantile spasms).

Good to hear from you again .

It all sounds as if things are going well Anniebear, I am glad for you.
Two things Firstly I think that Phenergan is like piriton and the body can become used to it..It might be worth checking and I agree 100% with Heart of the country, really wean her off the anticonvulsants very slowly.
I really hope that things continue to go well for you and your girls...it is always nice to read something nice about somebody, you have cheered me up with your news.

It sounds as though little Ellie is making excellent progress. It sounds as though you're going to be very busy for the next few months with making arrangements for school support and weaning Ellie off the medication. Give Ellie and Grace an extra hug from us. xxx

Thanks everyone!

Ellie is on Nitrazapam. We were so fortunate that the first medication was the correct one as the Epilepsy she has can be very hard to get control of. She is actually on quite a low dosage, 3mls, I imagine it will go down by 0.5mls...(very slowly!!!!)

I really am dreading it. I am so worried that if she does have seizures, what it could do to all the things she has learnt. I was sitting crying earlier worrying about it. At the end of the day I could be crying about nothing, but worry is my middle name!!

Dingle

How old is your DD? Does she go along to a mainstream group with a helper?

It is so hard to know what to do isnt it? I just go by what the Teachers say! They know how well she does in School and the Headmistres tells me that as much as they all love Ellie, they will be kicking her out to mainstream as soon as she is ready!! in the nicest possible way of course!!!

I jsut can'r see her ever being ready! But I am Mirs Negative! I find it hard to see how she could be alongside children who are learning to read and write but she is unable to do that. But, I have been told, that it can work!

Thanks again for all your replies and comments

anniebear, my dd has just turned 3. She has been going to SN nursery twice a week for the last year. It seemed everyone thought that she would do well with a mixture of mainstream too. I have been pondering over where to send her for months now. I kept on going back to the nursery that was attached to my DS's school (he is now in Y1)but the staff ratio's were terrible. I stuck to my guns and she started 1 session a week at the beg of the month! (she will officailly start in Jan with 3 sessions)I believe that they were going to use this "extra time" to establish her needs, but I really still had my doubts!
She had her 3rd session last week and they introduced me to her "helper" who went through their plan with me. I was all set for a fight too!
It's very early days for us all, still very emotional in it's own way. Had glowing reports about her from SN nursery today, came home with 2 stickers and a grin from ear to ear!
We all have such a long road ahead of us, it's great that we can all share these experiences.
I live in hope that she does settle into mainstream ,the language rich environment will hopefully help her speech along. Feeling a bit down about the signing there, whats the point in her knowing so many signs if the other children don't know what she is trying to say!

Anniebear, really glad to hear that you and the girls are doing well

Dingle, really pleased to hear your dd is doing so well too - the bit about her getting the stickers and having a grin from ear to ear made me go 'awwwwww'