A little update

[sherryberry79]

Hello everyone,

I think there are alot of newbies here since the last time I posted, so hello to everyone
For anyone that might remember us I though I might give a little update about where we are up to these days!

Millie is due to start primary school in September, we really wanted to hold her back until Sept 2014 (the year she would have started school if she had been born in Nov as planned as opposed to her early enterance to the world in August). Despite the fact that all the professional people who deal with Millie agree with us that delaying her schooling for 12 months would have many benefits, unfirtunately we are not going to be able to do this. We have been told that although we may be able to delay her entry to primary school, the secondary schools really dislike children being educated in years other that what they should be in according to their date of birth. This means that when she starts secondary school there is a strong possibility that the senior school would insist that she goes straigh into year 8, completely missing out year 7 altogether. This seems completely crazy to me, I really don't see how this would benefit any child but if it is a possibility then it's not a risk I want to take.

So we are resigned to the fact that Millie will be starting school in September and we are currently awaiting her statutory assesment. We have been told that she will recieve alot of support initially, even down to when she is outside in the playground - there will be an adult with her, but until we recieve the statement we really don't know how it will work

Developmentally we are making progress in tiny steps. Her biggest area of developmental delay is still her language. She only has about six words and even some of these are mis-pronounced (gaggy for daddy) etc. She is now 3 yrs 5 months uncorrected.

She has settled brilliantly into nursery, absolutely loves it and has lots of friends, apparently she is very popular! She likes to play with the big boys I am told.......


She is still under the physio, occupational therapist, dietician.........still only eats a handful of foods and is in 18mths - 2 yrs clothes, the optician following her ROP, educational psychologist and her paediatric consultant! Our diary is still very full!

As Millie is now at nursery i have finally gone back to work, after three years at home with Millie working full time has been a bit of a shock to the system, but I am enjoying it!

So that's where we are up to right now!
I'm sure most of you have no idea who I or Millie are but if you remember us then hello! Also hello to those who are going through the NICU/SCBU journey right now, this forum was invaluable to me during that time so you're in the right place! :wave:

 

[Foogirl]

Heyyyyy Sherry. Thanks for the update, I remember following yours and Marley's updates. I'm a bit pushed to do a full response but I'll do it later, I just wanted to say Hi.

 

[25weeker]

:wave: sherryberry

Isn't the years flying by too quick! Holly was 3 a couple of weeks ago and like Millie she is still small as she is only in 12-18 month clothes and that is only for height. Weight wise she isn't even 22lb. Bizarrely after she moved up to the 0.4th centile for her weight / height the dietician signed her off, although I am glad because she vomited constantly with paediasure plus so it's nice not having to worry about going out and her vomiting everywhere. She actually eats really well but just doesn't put weight on. I doubt she will complain about that as an adult!

There is a massive post on the bliss forums with a bunch of parents fighting to delay their children starting school which might be some use to you. Some have been successful and some haven't but some of them are fighting to allow it all over England. You might want to have a look as there is some discussions about high school as well. We seem to have it lucky in Scotland as apparently they are a lot more flexible. Holly being a Jan baby means in Scotland she can start school in either 2014 or 2015 so I am going to delay her until 2015 which would have been the year she started if she had been born in April.

Glad Millie is enjoying nursery as must be a relief for you.

xx

 

[AP]

I'm with foo! Hello, and I'll say a better piece later! xxx

 

[bumpsmum]

Hey sherry, Matthew is just a few months older than Millie and remember your story. Glad to hear she has settled at nursery Matthew loves it too I have been lucky that due to my PND he has been in nursery 2 sessions a week since he was 9 months old and really helped his development. My younger boy Daniel who is a 30 weeker is in 2 sessions also, currently pregnant with bubbles no3. It's great to touch base with NICU graduates xx

 

[Ice Cold Cube]

I'm new here but wanted to thank you for your story. Millie sounds amazing x

 

[Agiboma]

Hi sherry,

I remember you and millie, glad to hear the update.

 

[sherryberry79]

Hi all, thanks for the replies, it's nice to see some old faces on the forum....as well as the new!

Foo - :wave: How are things going with you guys? Hope life is good and Abby is doing well. The middle picture of Abby in your sig is amazing, she looks so happy and cheeky, I bet she is keeping you more than busy!

25weeker - :wave: You are right time flies.......I can't believe Holly has turned three now, they grow up too fast! Millie has been following the 0.4th centile for a few years now, but she is in proportion as her height as she is still pretty diddy! My god mother bought her some pyjamas for Crimbo last year from John Lewis 2-3 years but of course because there is no adjustable waist in them they are enormous. Christmas just gone the same godmother bought her another pair of pyjamas in 3-4 years!!! I didn't have the heart to tell her that last years pair are still too big! As you say, not gaining weight easily won't be such an issue when they grow-up!

Thanks for your advice reg. school start dates, I do have an update in that depatrment that I will come onto in a moment!

Hi Sandy - :wave: how are your two gorgeous girls? IHow is the language side of things with Alex? If I remember last time I posted about Millie's lack of speech, you replied to say that you were in a similar position with Alex. Has there been much progress? I hope so, but for us, things are moving incredibly slowly in that department!

Bumpsmum - :wave: CONGRATULATIONS!!!!! Fabulous news, may you have a very long and uneventful pregnancy (and I mean that in the nicest of possible ways) I hope you are keeping well, and able to find some time to pamper yourself and relax a little! Great to hear that Matthew is enjoying nursery, it's great that he was there a couple of mornings per week from such a young age as I am sure it made the transition into nursey much easier.
When are you due by the way?

Ice cold cube - :wave: Nice to meet you and thankyou soooo much, she is rather wonderful but I am most definately biased!!

Agiboma - :wave: I see congratulations are in order for you too, CONGRATULATIONS!! I hope you're keeping well! All these pregnancies, I am starting to feel positively broody! I'm so pleased to see you are already 5 wks past when you delivered previously, I'm praying your little lady stays right where she is for the next 8 weeks or so!

We went for a meeting at the primary school that Millie will be attending today. It was a transition meeting and we thought it was merely to discuss exactly what sort of provision will need to be in place to accommodate her when she starts there. However, the head-teacher said that he had been to observe Millie in nursery on two occasions and that he and the SENCO both felt stronglt that she would benefit from an extra year in nursery before she starts in reception. We reiterated that we had always felt and extra nursery year would be the way to go, but that we felt this option had essentially been taken off the table once we were told that Millie may be put straight into year 8 at senior school.

Apparently the panel who make decisions of this nature are split over Millie's case, so Millie's educational psychologist was present at the meeting as she then has to go back to the panel with her reccommendations. She said that it is very rarely that she would support a child being held back a year, but that in this instance she feels it would be the way to go! There was a lot of backtracking regarding her going straight into yr8 at senior school. They basically said that if this was threatened then we could fight it and parental voice is the strongest of all. They all felt that should the headteacher want her to miss a year in order to 'catch up' we would be able to over-turn this decision by making an appeal.

So..........the outcome of all this is that we now think she will be starting school in Sept 2014 as opposed to this year! We won't know for sure until the panel meet again and make a definative decision, but it looks very likely! Troels (Millie's dad) and I are still a little apprehensive that we may run into trouble when she makes the transition to secondary school, but we have decided that if we have to put up a fight then we definately will. Hopefully that won't be necassary though! So, the meeting did not go at all how i expected, but on the whole it went pretty well!

Sorry for the longwinded post, brevity was never a strength of mine!

 

[Foogirl]

Great news about the schooling. It can be so important for children to start when ready, otherwise it can affect the whole school career. We are actually looking at the other end and thinking about starting her early, but they pointed out to us she will then be early going in to high school, and on to further education so I do find it funny they are suggesting Millie would have to go up a year just to be the same age as her peers, crazy. It is such a pain to have to fight for everything though!

We're doing just fine here. Abby has cerebral palsy, but thankfully only her lower limbs and waist are affected. She can't walk unaided yet but is tearing about the place on her hands and knees. Speech and education wise she is waaaay ahead of where she should be. Whilst that is a good thing and bodes well for her future its challenging because at 3 and a half she has the mind of a 5 year old, the body of an 18 month old, and the emotions of a 3 1/2 year old. That's a heady mixture and can lead to some ....ahem...behavioural challenges But we're getting through it. She's built up quite a following on facebook and definitely has a career on the stage ahead of her!

Trying for a little sister (or brother but Abby wont be happy with that) but no joy so far.

Other than that I've been busy with Bliss, setting up a support group and helping the new mums through the journey. It's quite a rewarding thing to do, and we just won the Mother and Baby / Bliss award for family support group of the year.

 

[AP]

Hi Sandy - how are your two gorgeous girls? IHow is the language side of things with Alex? If I remember last time I posted about Millie's lack of speech, you replied to say that you were in a similar position with Alex. Has there been much progress? I hope so, but for us, things are moving incredibly slowly in that department!

They are doing great, the best of friends. Alex is still very slow on the language side of things but a slight improvement thanks to the nursery. Shes got one-to-one care there and the speech therapists pop in and do work with her. I've just actually got off the phone to Speech, they have noted Alex is obsessed with her hands and they feeling signing is certainly the way to go forward on that, so we are meeting on Tuesday to agree on ten signs that we (nursery, speech, and us) will use , so we are all on the same page. We're also waiting her referral with our concerns on autism and we will probably hear back next month, as per usual, theres a 3 month waiting list.

Nevertheless nursery has helped for sure, its just sad that the two friends shes gotten attached to are heading to school this year and she wont be going til at the very least next year, so hopefully she'll find more friends!

I hope holding her back a year will help Millie, I am sure it will! It doesnt matter when she's ready, as long as you're having some progress thats all that will matter!

 

[bumpsmum]

Glad meeting went so well. I'm due 21st June, so hoping my kidneys even last til 1st June and I'll be one very happy mummy xx