Thursday 22 May 2014

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 








Wednesday 7 May 2014

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