Where has the time gone?

Firstly I am sorry that I have been completely useless at updating my blog for the past few weeks. I have however been adding a few photos and statuses here and there on Emily's Facebook page, called Emily's journey of the unknown.

I have just been getting Emily's presents ready for tomorow as it's her first birthday! While I am exicited for her birthday like any mummy would be I am also feeling rather sad and emotional for some reason and can't help thinking it should be push along toys and dolls we should be wrapping up and not sensory toys that she can hold and touch etc! That said I know there are so many other families that have it so much worse than us but I think sometimes you need to feel sorry for yourself and have a cry. I think I may explode if I didn't! I also know that people say oh but she is so happy and just be happy for that ect which is fine but until you are in the shoes of a SEN parent you can't really comment and fully understand especially when it's a child like Emily that is undiagnosed and you just don't know what the future holds or even if there is a future long term.  My mood was not helped by the fact that I went to set up her bubble tube so it was all working when we got up and it's broken. It was fine when we got it as checked before putting it away. Too much time has gone now to send it back so stuck with a broken tube and Emily does not have a main present. She won't understand but I know!

Tomorow Emily will open her presents ect but not much else. Saturday we have been invited to spend the day at Bluebells which is run by Sebastian's Action Trust and is a house that offers respite care and day visits for children with life limiting conditions. Then on Sunday we have our nieces coming over for a little tea party. Although she doesn't understand which would be the same for any one year old child we will make it special and take lots of memories!

Emily is continuing to do well in herself. She is still at the stage of almost sitting but just isn't there just yet. She does however sit up in her rocking chair as she has the lap strap to give her the small support that she needs. This is brilliant however because she is so flexible you need eyes in the back of your head as she over leans and ends up folded in two and unable to sit back up. 

Last week Emily had a sleep study as she holds her breath when asleep and normally then coughs and cries. Apart from the monitor going crazy up and down at times the night went without any hick ups. I am yet to get the results but spoke to Emily's consultants secretary this morning and they have the results and believes that as we havnt heard anything all has come back ok. Due to our track record with hospitals and things not being done ect I have emailed the consultant direct for feedback and also to see whether they have the results back from the GFAP gene test which will tell us whether Emily has or does not have Alexanders Disease! Fingers crossed it's the latter.

We did receive a copy of the letter that was sent to our local consultant from our neuro consultant when we met with her in April. She explained that she is delighted with Emily's progress since seeing her in December. The myelin has progressed and now is at the stage of a 11 to 14 months child. However there does remain extensive bilateral signal abnormality within the cerebral white matter. She also explained that the condition megaloencephalic leukoencephalopathy with subcortical cysts (essentially a white matter problem with cysts) but as there is no cysts on the repeat scan it makes the condition less likely. There is also the possibility of Alexanders disease which Emily's does not particularly fit the condition clinically it's still important she is tested for the disease which is the GFAP gene test we are waiting on at the moment. The radiologist also suggested white matter vanishing disease but again Emily does not clinically match the symptons of this but a repeat scan with determine this when she is two years old.  The consultant is happy to not see us for another six months she has referred Emily to her Genetic colleagues for their thoughts on her condition and she also thinks that Emily maybe a candidate for the deciphering developmental disorders study.  All in all it was a positive letter. I am sure other parents will agree it's very useful getting the letters which review the appointments as there is so much said and explain you do forget things!

As mentioned in my past blog Emily has also been referred to speach and language therapy as she was not coping with lumps at all well. The waiting list to see someone is currently 24 weeks I was told and in the meantime Emily has started tolerating lumps really well as long as they are suckable and the food it watery and not stodgy. She is however having trouble drinking fluids that isn't milk. It's almost like she can't swallow it as it's too runny. I have spent a small fortune in cups and beakers and even just given it to her in her bottle but they all have the same outcome and that's one very wet bib and little lady. I will mention this to SALT if it's still a problem when we finally get to see them. 

Emily now has a tumbleform seat on loan from a very lovely lady (she knows who she is). She absolutely loves it and will sit happily playing for ages while

Mummy does her jobs around the house. The only problem is her big sister loves watching tv in it also!

Again if you want to keep up with Emily's progress please like our Facebook page 

Www.facebook.com/introtoemily 

Emily's new Trolly Dolly

Emily's highlight of every week is doing the weekly shop with mummy and nanny. She absolutely loves it from start to finish. Laughing and looking at all the lights and not forgetting the attention she gets from all the passing elderly men and women. 

Up until the last few weeks she would lay in the newborn seat but as she is nearly 12 months old it was getting a little snug for her once the insert was in (our trollys are very hard so madam needs a cushion).

We were really stumped as to what we would do as there was no way Emily would be able to sit unaided in the seat part of any trolly and our local supermarket do not offer specially adapted trollys. My husband works long hours so it would mean late night shopping while he stayed at home and looked after the girls. It didn't seem fair as Emily loves shopping so much. 

On one of the special needs buy and sell sites I noticed a lady selling a trolly cover. Although this just covers the trolly a lady had posted a link underneath to a page on Facebook called Bags of Style. I messaged the lady who then pointed me in the direction of her trolly dolly section. 

I cannot explain how excited I was when I first see the trolly dollys and what they had to offer. Its basically a little jacket that velcros onto the child and then there is a piece of material which is attached that then velcros over the back of the trolly seat.  The next big decision was what material we should choose. After much deliberation we decided on mini mouse. We wanted something girly but not something that we would need to match that days outfit with. 

I emailed the friendly lady that runs Bags of Style with various measurements of Emily and also the fabric that we wanted (there are loads of fabrics on the Facebook page that you can choose from). I was then emailed an invoice which needed to be paid before the item could be made for obvious reasons. After a couple of weeks I was then tagged in a picture of the finished product. I was so so excited. Having a little one that isn't able to sit, crawl, walk etc is hard as I am sure other parents would be first the agree, so finding things like this that helps make the little ones life as normal as possible is brilliant. 

Fortunately the trolly dolly arrived on Friday morning which is the day I do the weekly shop.  

I literally opened the package in the car park of the supermarket and was so pleased with the look of it. Super cute and nice and girly! 

Emily wondered what we were doing to her when we put her in the trolly seat at first. Once we figured which piece of velcro goes where she loved it, kicking her legs wildly at the freedom of feeling them hanging and making the most of not being laid down as she had always been. 

As Emily has such low muscle tone it took a while to work out the best place to put the cushion but decided she was most supported when we put it directly behind her head. 

Off we went into the supermarket and Emily really loved the freedom it gave her, not to mention the extra attention it brought. Mummy wasn't so sure as I like to blend in and not stick out but that's a total different story for again. 

Unfortunately after about thirty minutes Emily grew tired and couldn't hold her head up anymore so we transferred her into the newborn seat to finish the last of the shop. That said I have every faith that each time she will grow a little stronger and be able to stay in the trolly dolly longer until we won't need the newborn seat anymore. 

For babies and tots with low muscle tone I cannot reccomend this product enough.  It's not that cheap to some people but to me it was worth every penny and I would not hesitate buying again if I needed to. It's great that its made to fit your child so providing you get the measurements correct it won't be too big or too small. 

Bags of Style come very reccomended from myself and I know that a number of other mummies would agree. They offer a number of bespoke products for children and adults with additional needs, the list is endless!

Visit Bags of Styles facebook page and I am sure you will find loads that would suit your little one I know I have a list of wants that's rapidly growing.  They also have competitions for some if there products to promote certain additional needs events.

There is also a phone app so you can use Bags of Style on the go!

Bags of Style Facebook page

https://www.facebook.com/christined265

Don't forget to also like my Facebook page which I will be adding random bits and pieces and also links to future posts on my blog 

https://www.facebook.com/introtoemily/info

Emily has a better social life than mummy!

Back at the beginning of the year our portage worker mentioned a special needs mother and baby group called TreeTops, as all this was new to me I had never heard of it but thought we would pop in and give it a go as up until this point we were attending mainstream groups and it was becoming clear how different Emily was to other babies her age and although other mummies and carers didn't say anything outright you would catch them staring and you knew they were thinking 'why is she just laying there and not rolling, sitting ect'. Also I don't pity Emily and don't want anyone else doing the same as she is such a happy little girl (I would go as far as saying happier than 95% of all babies) and is continuing to improve daily.

We went along for the first time and I can honestly say I have never looked back. We both loved it. It's very laid back and the workers are all lovely beyond words and you come away feeling refreshed and positive. Mummies have coffee and the babies play on the mats and the bigger ones explore and play. They also have a lovely Sensory room which Emily loves (mummy does too).  The premises is a respite care home being divided into two sections almost. One side is overnight respite for kids that have very complex health needs and the other section is for delayed learning children. Again I never knew anything like this existed and although at the moment I can't imagine ever sending Emily for a night of respite I can understand why some parents choose to do this.

At one of our coffee mornings we were lucky enough to meet Charlie Porter who is the founder of a children's charity called Muffins Dream Foundation. Charlie has had more than her share of health issues from birth and bravely overcome these and you may say made her into the person she is today. 

Muffins Dream Foundation was set up to help disabled 0-25 year olds in Basingstoke and Hampshire not to mention the siblings and other family members. They offer a wide range of services from activity days, hospital visits, providing boredom buster bags for any of the children or young adults that maybe in hospital for any length of time and baby sitting to name a few. 

To date we have attended a messy play afternoon, Easter egg hunt and also the most recent being a gymnastics morning which was such a hit for Emily's big sister. One of the great things about Muffins Dream Foundation is that they include siblings which having a older daughter I think it's so important that siblings are not left out. This has always been a worry for me and my husband but so far I think we are doing a good job! 

Muffins Dream Foundation also have a number of other volunteers who help in any way they can and again they do a brilliant job and you can see that each and every one of them are as dedicated as the next. 

Each child that is registered with them is then referred to as one of the Muffins which again is a nice touch! 

It is Charlie's dream to eventually open Muffin House Hospital which is a luxury hospital who will provide care for children and young adults that have to spend a great deal of time in hospital, they would provide a high level of medical care and also a few extras that would make the individuals stay that bit more comfortable. 

Muffins Dream Foundation are always looking to recruit new Muffins and there siblings. Please look at there website which provides more details of services they offer, a registration form if you would like to enrol your own littke muffin and also please read the page about Charlie herself. I have only read it this evening and all I can say is WOW! If anyone can give you confidence that others are not always right it's Charlie. She has overcome so so much to be where she is today, against all odds and is a true inspiration.

As mentioned earlier we have attended a messy play afternoon which both Emily and her older sister loved. Emily relaxed in the sensory corner while her sister done all manor of messy things I would never let her do at home. Well not my home anyway haha. Emily even joined her sister in some shaving foam fun. 

We then attended the Easter Egg event which again was a brilliant day . This event was open to the public and it was a great turnout with almost eighty children in attendance. Obviously Emily couldn't take part in the actual hunt but her sister done her proud. Emily was more interested in the two Muffin Mascots. These being Fireman Sam and a Minion. Every child was given an Easter egg or in Emily's case a little chick to take home along with biscuits they has iced and eggs they had painted. 

The last even we attended was the gymnastics event. Again there was a high demand for this and by attending I can certainly see why. Emily was lucky enough to have a baby coach almost to herself. It was a lovely coincidence as the baby coach also tought my older daughter when she used to do gymnastics a couple of years ago so it was nice to have a chat ect.

Emily was able to try a number of new things such as sitting and being turned in an almost shell kind of seat (I am sure they have a proper name), being gently rocked in a blanket , tummy time on a wavy mat which she really liked (she hates tummy time), sliding down the slide on blankets and also managed to fit in some time on the giant trampoline. Emily didn't manage an hour and half but spent the last half an hour watching her sister jump into the foam pit and do all manor of daredevil stuff. It was lovely to just stand back and watch all of the children, all different disibilities having great fun. Roll on next month when the next gymnastics event is being held! 

You can read more about Muffins Dream Foundation on there website

Www.muffinsdreamfoundation.co.uk

Also they have a Facebook page which I am sure you are more welcome to join

Www.facebook.com/muffinsdreamfoundation 

Also as with all charities they rely on donations so they can carry on and in this case provide such a worthwhile and excellant service. If you want to donate to such a worthy cause you can do so by donating on the website or contacting Charlie via email or directly on the Facebook page.

Also if you have not yet joined my Facebook page please do so

Www.facebook.com/introtoemily

Half term with Emily

As half term is almost over i thought i would post a few pics that have been taken of Emily during the two weeks break!

Spare of the moment trip with the family to the local petting farm. A good time had by all!

To add to Emily's list of firsts, she tried ice cream. To say she liked it was an understatement. She went as far as taking it out her nannys hand when she was offered a little lick. She wasn't too happy when it was taken away but in true Emily style her nanny was quickly foregiven.

Emily has more or less grown out of both her baby bouncers and I wasn't really sure what to do. Not only does she love sitting and chilling in them they are also used to feed her as she can't be sat up too much or else nothing stays in her mouth . After doing some research and asking some special needs mummies it was down to this bouncer and the proper special needs bouncer. Unfortunately the special needs bouncer comes with the normal special needs price tag and although I could stretch to one I would really need two as we are at Emily's nannys a lot as well as at home. Fortunately for us one of our friends had two which she didn't need anymore, Problem solved !

Emily really loves her new bouncer and has even taken one or two naps in there. She does fall to the side after five minutes but she still looks comfortable and it does not bother her.  She is also sat up more which she really enjoys. I really reccomend this bouncer, and on a plus side she should fit in it until around 4 years of age .

Emily has almost nearly grown out of her newborn car seat, not to mention my poor back! Again I researched and asked various people about what seat I should go with. After narrowing it down to two we went to halfords and tried her in the Maxi Cosi Axiss. She looked really supported and she seemed to like sitting in it. After going away and thinking about it we decided to purchase it. Emily loved the seat but upon actually using it we noticed that her head isn't as supported as we would like. I am the process of looking at what's available to buy to help in supporting her head. It would be fine if she didn't move but as she is a nosy baby she likes to look around and this is when her head starts to flop. A fried has suggested putting some toys over the door on the hanger to try and keep her from moving about. This is a great idea and something I will be putting into action in the next couple of days.

Also the added bonus in this is that the car seat swivels which is ideal as Emily needs a fair bit if support while being lifted in and out of the car and tends to fall forward when strapping her in. 

Up until now I have been using a finger toothbrush for Emily but as she is now on more solids I decided to get her some baby toothpaste and baby brush to try. She wasn't too sure at first and pulled some brilliant faces but once she got used to it she loved it and was smiling and babbling away.

A Emily day would not be complete with cuddles from just about anyone! And when I say cuddles I mean lots.

We were lucky enough to be invited to two Easter egg hunts this year. The first being held by Bluebells (i will do a post dedicated to this once we have been and spent a day there which is happening in may) and the second being held by The Muffins Dream Foundation. We had a brilliant time at both and was enjoyed by both Emily and we big sister Mairead.

http://www.muffinsdreamfoundation.co.uk

http://www.sebastiansactiontrust.org/holidays/the_holiday_house.php

All in all it's been a busy two weeks but very enjoyable.