?????

Written by InnocentCharmer. Posted in 2014, grayson

I didn’t know what to name this post, as I really am at a loss.

Grayson sitting

I knew that things would become more difficult for Grayson as he got older, I knew medically more problems would probably occur, it is common with children with such profound disabilities, but we have been very lucky. He has not had many nasty medical issues, well not in comparison to children we know.

But it would seem that time has come, I feel shaky and frightened, but that will pass, it has to as I am the Mummy and we cannot show fear.

Grayson in the past 2 months has had some nasty problems, since starting to eat real food (WHICH IS HUGE – WHOOP WHOOP) he vomits a lot, mainly at night and he doesn’t even wake, thankfully as I sleep very little most times I have heard a little cough noise, I then know he is probably covered in sick. Thankfully he doesn’t seem to have aspirated any, thank god for him getting that bit stronger, if it had happened a year ago, well it doesn’t bear thinking about.

He has had some invasive tests this past month, which are a story in themselves, but it is looking positive that there are no major stomach problems, they have to culture some biopsies they took from inside his stomach (gross) to check for a superbug but they hope that shall be clear. So it points to very severe reflux, not the standard babies have, not like Deacon’s but on a really nasty scale, it could mean stopping him eating, oh how I hope not. Grayson, Ashley and I have worked tirelessly to get to this point, a point we never thought possible, I just pray we don’t have to stop him.

My little superhero works so hard and something gets thrown into making it hard, he really fights through, you can see he is struggling and in pain, but he says screw you I will enjoy my choc spread sandwich.

Now if only this was it, this is the easy bit, this is the bit I can cope with, can say ok, we shall fight as we have over and over.

But after years of me arguing, years of me seeing my little sociable/happy baby change overnight into a child so hidden from the world, years of saying something isn’t right, have come back to bite me in the arse. I had always prayed I was wrong, this just can’t happen to my little boy, he has had too much already.

I was wrong and right all at the same time.

Grayson during a sleep study to see how his apnea episodes were progressing (he has a rare nasty type, he stops breathing up to hundred times a night) it also became apparent that my fears were true and that our little boy has a very serious type of epilepsy, I really did not want to hear this, the phone call from his Neurologists stopped my breath, you think I would get used to it wouldn’t you but nope. Ashley stared at me, not sure what I was being told, I couldn’t listen to his doctor I just wanted to get off the phone and speak to Ashley, he always knows what to say to me to keep me sane.

It was decided meds needed to be started straight away, they are strong ones too, he would send a letter to our GP, there of course were side effects, ones that could be nasty, I know friends whose children take the meds and they hate it, it changes their whole personality, but most concerning for Grayson’s is a lack of appetite. We have fought that feeding tube for 3 years, please do not tell me this will be what breaks us.

As I told Ash his face sunk, we knew, but we didn’t, I am not sure that makes sense, Grayson mentally has changed so much, but we had always hoped we were wrong. They had told us we were wrong but now we aren’t. Now this is our new life, our new reality.

A reality were we have gone from 1 medication a day to over 10, they are for the better but what impact will they have on our little Superhero’s system.

We have been told this past 6 months that he could stop breathing at any time at night, we knew he would not tolerate the breathing equipment, but we have had to make the decision to try, to put him through more of what can only be described to him as hell, we know seizure could take him, we know that a chest infection could quickly now become Pneumonia again and that he can only go through that so many times without….

But we are not going to let any of those things happen, it won’t, I am his Mummy and I will not let it – screw you you evil diseases, you will not hurt my son, he is a GOD DAMN MIRACLE!

Grayson, I promise I shall make every day the best day you live, every day will be fun filled, shall have new adventures, we will fight together, Mummy shall cradle you every day, I shall be your everything, I will find a way to take you on new adventures, to visit fun places, no matter what, I will work every waking minute to provide these things for you, I will find a house where you can go out in the garden like you long for, I will find a car seat you fit in, I will feed you chocolate everyday even if that tube has to go in and when another of those seizures come I will stop whatever I am doing and cuddle your little body better.

You are my hero.

This post was written for me, for me to understand the news that has been given to me, reading a post over and over is my therapy, I am not sure why but it works, but I write this for all that love my baby, Grayson you are loved by so many, this year we are going to travel the country and meet the lovely people who send us love and support.

Most importantly I cannot say thanks enough to the team at Raising For Grayson, in less than a month some of them are completing a seriously scary task and are climbing Snowdon – please please please if you can help to support them in any way I would appreciate it, I have never been one to ask for money for Grayson, all our funday’s and events have always only donated a small amount to my Superhero and mainly went to other charities, I am not asking for your support to help Grayson but because these amazing ladies are doing this just because they are true angels, because Grayson touched their hearts without even being involved in their daily lives.

Thank you to all who love my Superhero, honestly it is with your support and that of a few select family members that as a family we keep going, our life is ours, we do not know any different, but we do know it isn’t the easiest.

 

Grayson

Cooking With Jus-Rol and Addison

Written by InnocentCharmer. Posted in 2014, food, review

Addison has become an incredibly fussy eater, she wasn’t a year ago, I find Dinner times frustrating and desperately try to get her to try things. I remembered the advice I was given by a dietician to get her involved with cooking so when Jus-Rol contacted us and asked if we wanted to try a few items from their Bake It Fresh range I thought this was a perfect opportunity.

I decided on Pizza, in the packet you receive 2 pizza bases and the tomato sauce, all you need to do is roll it out, spread on the sauce and add toppings. Sounds simple and as you can see from the pictures below it really was. Even a 3 year old can easily do it.

Jus-Rol Bake It Fresh

Addison loved cooking with me, every dinner now she asks to help, the pizza takes less than 10 minutes to cook, perfect for an impatient toddler, it is a thin based pizza which I really liked and I think is ideal for the kids, we left cheese off so that Deacon could also try, all the kids ate some, Grayson in particular loved it, so that was a HUGE win.

The Hubby and I went on to have the other Pizza base for ourselves, we also tried the Focaccia, which much the same as the pizza you roll out and add the lovely little pot of herby oil, I also minced some Garlic and added that (as the hubby says I am garlic mad). The bread was delicious and a perfect accompaniment to our Pizza.

Jus-Rol Bake It Fresh Pizza Review

I loved how quick and easy the meals were, the Pizzas are something you could keep in the fridge and use up any left overs on top, they shall certainly be a regular in our fridge.

The range also includes Pain Au Chocolat (which we tried), Danish, Croissants and Rolls, I really want to try the rolls but have not found them as of yet.

Jus-Rol review

Like Jus-Rol pastry these are sold in the fridge aisle and all supermarkets stock different products, do check them out as they are perfect to get kids cooking, or even the Husband.

 

Disclosure – We were sent vouchers to review the products above, but all opinions are our own.

Dulux Bedroom In a Box – The Brilliance!

Written by InnocentCharmer. Posted in 2014

You may remember just over a month ago Mr Innocent Charmer and I in less than a day made over a bedroom with Dulux and one box. Yep don’t believe go check out the awesome-ness that is the Jungle Room at Gamma’s house.

#asifbymagic

Addison and all the kids still love the room massively, Addison in the past month has slept over at Gamma’s at least 3 times, my Mom says it is cause she loves her Gamma but I am pretty sure it is the magic room which allows her imagination to talk to the animals.

We may have the Jungle Adventure at Gamma’s but I think when we eventually move our playroom shall be made into the Sea Adventure as all the children (and the Mr) are currently fish crazy and after using the box I can’t recommend it enough, it is a genius idea.

jungle-adventure-bedroom-pack

If you were thinking of trying out the Dulux Bedroom in a Box now is the time! As with every purchase of a BIAB you are entered into a prize draw wight he chance of winning a family Merlin Pass, OMG how I would love that. Check out more details here.

The Dulux range currently has 5 themes to choose from with talks of more, this really will make the magic appear in front of any childs eyes, all for an excellent price, don’t believe me check out this video of other bloggers who made the magic happen for their little ones.

 

Disclosure – This post is in association with Dulux.

New Shoes!

Written by InnocentCharmer. Posted in 2014, kids fashion

Who isn’t a shoe addict ? Well in our house we all are, no kidding, the Mr has as many shoes as I do (and that is a lot) the kids have several pairs each and every week Addison tells me of a new pair of shoes she needs (I have created a monster) and little Deacon, well up until now he has only had soft shoes but he has a total obsession, he is never found without one of my shoes in his hand or trying to walk with them on his feet. It is the cutest.

So when the lovely people at Clarks asked if we would like to get some new school shoes I couldn’t say no. Grayson has to wear special needs shoes to school so I knew he would not be needing any, but Addison attends preschool 2/3 days a week and her school have now requested she only wears shoes she can learn to put on and off herself.

I had decided I would let Addison pick her own shoes when we got to Clarks as long as they fitted the brief, Addison this past month has started to like everything pink, so after sneaking a peek online I thought I knew which she would choose.

Indeed they were one of the pairs but she was more drawn to the little cream Doodles, which I have to say were my favourite (I would like them for myself). The lovely staff asked if we wanted to get the kids measured, Addison hadn’t been measured for a long time and Deacon never so we took them up on their offer. I was amazed when I saw them pull out an iPad to measure Addison’s feet, she was a little apprehensive until she realised she got to choose the little character that got to talk to her.

Clarks review

I was so impressed with the measuring system, I have to say getting in the magic machine at Clarks was always my favourite bit of shoe shopping as a child, so seeing it step up (no pun intended) for the future was very exciting. Deacon was a little upset that he did not get to measured his feet with the iPad, he desperately wanted to press the screen, but as his Mummy I loved seeing him have his first foot measuring in the traditional way, he starred with intrigue the whole time.

clarks shoes

Unfortunately they did not have the cream Doodles in stock for Addison in her size, but I think honestly the sparkly pink Doodles suit her better now, they are easy for her to get on and off and will bring a cute look to her school smock and uniform, I think the other little girls in her class shall be covert them.

Clarks Shoes Review

Deacon and his very tiny feet did not have masses of choice, but the lovely little navy doodles we chose are just perfect for him, since having them he has been exploring everywhere outside, they have improved his walking massively and he is so excited to show people his new big boy shoes.

Clarks Review

The people at Clarks kindly took a picture of him at his 1st shoe fitting and gave us a little reminder card of when to come back to get re-measured, great service thank you Clarks.

Scary to think we will back there this time next year picking some cute Black proper school shoes for Addison. Eek!

Clarks Shoes Review

Disclosure - We used a voucher sent to us to buy some new shoes but all opinions are our own.

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