Ashtons Journey

[Costock_Fox]

4 hours ago, kingcarr21 said:

Massive Happy 5th Birthday to my perfect little boy. 

Which one is he mate?

[kingcarr21]

9 hours ago, Costock_Fox said:

Which one is he mate?

Tough to tell  People say he is so handsome I never know who they are on about  

[Jon the Hat]

Happy Birthday Ashton!

[Costock_Fox]

1 hour ago, kingcarr21 said:

Tough to tell  People say he is so handsome I never know who they are on about  

Haha, Hope he had a great birthday!

[Alf Bentley]

 

He definitely looks confident and at ease with life in that photo - there's a definite "I'm the king of the world and you know it" vibe going on. 

[stripeyfox]

2 hours ago, Alf Bentley said:

 

He definitely looks confident and at ease with life in that photo - there's a definite "I'm the king of the world and you know it" vibe going on. 

we taking about Ashton? Or his dad? 

[Alf Bentley]

16 minutes ago, stripeyfox said:

we taking about Ashton? Or his dad? 

 

Nah! The vibe with his Dad is more "tolerated royal servant". 

[ozleicester]

Happy 5th Ashton and family

[kingcarr21]

Thanks for all the messages. He had a great day.

 

just looking at traveling to Perth for a conference on Ashton’s condition. I went to one in London but it isn’t nearly as big as in America and Australia. I have a friend who lives in Perth who could put me up so only need flights and spendo. Very tempting 

[kingcarr21]

Ashton with the traditional sat on the table with his cake in front of him . So funny watching him devour his cake 

[kingcarr21]

I have taken the plunge and booked my flights to Perth Australia in May to go to a conference that specializes in Ashton's condition. Cant wait to go out there and meet so many people who suffer from the same condition and try and gauge what sort of future Ashton will have. Also will be speaking to many professionals who specialize in research in the condition.

 

I will also represent Corpal. Which is a charity here in the UK for Ashton's condition. I'm sure I will gain much knowledge.

 

Will have to chuck in a scuba diving trip in Perth for good measure  

 

[stripeyfox]

2 hours ago, kingcarr21 said:

I have taken the plunge and booked my flights to Perth Australia in May to go to a conference that specializes in Ashton's condition. Cant wait to go out there and meet so many people who suffer from the same condition and try and gauge what sort of future Ashton will have. Also will be speaking to many professionals who specialize in research in the condition.

 

I will also represent Corpal. Which is a charity here in the UK for Ashton's condition. I'm sure I will gain much knowledge.

 

Will have to chuck in a scuba diving trip in Perth for good measure  

 

Sounds like a useful "jolly"!

 

Maybe next year they'll have one in Vegas!

 

But seriously, it is good to talk to people and professionals, especially with such a rare condition - I suppose it is difficult to find many people nearby in the same situation?

 

[kingcarr21]

Ashtons finally been able to pull himself up to stand. If I'm sat on the sofa he now crawls up to me, grabs my leg and now can pull himself up to a standing position. We have been doing this in Physio for almost 2 years now and finally he can do it on his own.

 

Another step towards him walking. Slowly but surely we will get there.

[ozleicester]

On 18/02/2019 at 18:47, kingcarr21 said:

Ashtons finally been able to pull himself up to stand. If I'm sat on the sofa he now crawls up to me, grabs my leg and now can pull himself up to a standing position. We have been doing this in Physio for almost 2 years now and finally he can do it on his own.

 

Another step towards him walking. Slowly but surely we will get there.

Champion

[kingcarr21]

Been an eventful month since my last post. Ashton got bit at school. He simply touched a child's head who was sat next to him and the child bit his arm. Ashton wasn't fazed and luckily he had his jumper on which meant it didn't draw blood. Felt like it could have been prevented but cant be helped.

 

Ashton has been pulling himself up to stand more often. Still isn't perfect but its another small step towards him standing unaided. His physio has suggested getting him a push along trike where the pedals move around whilst I push it.

 

So with the trike in mind we went to the Ricoh arena yesterday for Kidz to Adultz middle. Its an expo where loads of companies showcase new equipment for people with disabilities. Was quite a successful trip.

 

Managed to get Ashton some new sandals for the summer. Also spoke to people regarding a trike (which he tried out and loved), a new chair for the table, the next size car seat and an Ipad holder for his pushchair.

 

Everything is just so expensive though. Have to go through charity funding to get the equipment so will see how we get on.

[kingcarr21]

Went to Skegness yesterday for the day and Ashton had a great time going on some rides. He loved the breeze in his face  

 

Got home last night and put him to bed. He has a specialist padded bed which he has started to kneel up and hold onto the top of the bed, last night he managed to pull himself up to stand in his bed. The wife saw him on the video monitor standing up. It's taken us almost 2 years to get him to pull up to stand on his own and now he seems to be doing it more and more. So we are taking him to Devon on 10th April for his next brain stimulating appointment. See if we can get some words out of him.

[stripeyfox]

9 minutes ago, kingcarr21 said:

Went to Skegness yesterday for the day and Ashton had a great time going on some rides. He loved the breeze in his face  

 

Got home last night and put him to bed. He has a specialist padded bed which he has started to kneel up and hold onto the top of the bed, last night he managed to pull himself up to stand in his bed. The wife saw him on the video monitor standing up. It's taken us almost 2 years to get him to pull up to stand on his own and now he seems to be doing it more and more. So we are taking him to Devon on 10th April for his next brain stimulating appointment. See if we can get some words out of him.

that's brilliant mate, great news.

 

When are you off on your jolly fact finding mission to Perth?

 

[kingcarr21]

2 hours ago, stripeyfox said:

that's brilliant mate, great news.

 

When are you off on your jolly fact finding mission to Perth?

 

Travelling on May 6th for 10 days. Just hope it will be a worthwhile visit

[kingcarr21]

So I am just about all packed for my trip to Australia. Suitcase 99% done and documentation all printed off. Ill miss the Leicester vs Man City game as I will be on the plane. Wonder if I could catch the commentary on the plane radio .

 

Going to be so weird being away from the family for 10 days. I'm actually gutted I didn't bring Ashton along with me. Cost too much money though.

 

Looking forward to finding out what our Mystery car is going to be from Hertz. I'm 17 Stone and my cousin is 20 Stone so knowing our luck it will be a smart car  

 

I obviously wont be on here for the next 2 weeks so I will see you all when I get back where I will document my journey. You will probably sense an Australian twang in my typing

 

Cheer on the Leicester boys in my absence.

[Izzy]

1 hour ago, kingcarr21 said:

 

Looking forward to finding out what our Mystery car is going to be from Hertz. I'm 17 Stone and my cousin is 20 Stone so knowing our luck it will be a smart car  

You’ll be lucky if the plane gets off the ground! 

 

Seriously, hope you have a great trip mate 

[stripeyfox]

1 hour ago, kingcarr21 said:

So I am just about all packed for my trip to Australia. Suitcase 99% done and documentation all printed off. Ill miss the Leicester vs Man City game as I will be on the plane. Wonder if I could catch the commentary on the plane radio .

 

Going to be so weird being away from the family for 10 days. I'm actually gutted I didn't bring Ashton along with me. Cost too much money though.

 

Looking forward to finding out what our Mystery car is going to be from Hertz. I'm 17 Stone and my cousin is 20 Stone so knowing our luck it will be a smart car  

 

I obviously wont be on here for the next 2 weeks so I will see you all when I get back where I will document my journey. You will probably sense an Australian twang in my typing

 

Cheer on the Leicester boys in my absence.

Good luck mate! Don't work too hard!

[kingcarr21]

Arrived back home on Friday from my 10 day trip to Australia. Was great to see my old school friend again and having a good catch up. Went round the sites and just love Perth. Just the whole way of life trumps all over being here in England.

 

The Conference was good, met lots of people with Ashtons condition and expanded my understanding of his condition.

 

Now to my first day back at work ughhh. I'm actually putting in my expression of interest to move out to Australia. I may even be able to get over there through GE. Will see how that develops.

 

I was able to watch the Man City vs Leicester game on the plane. Emirates are a brilliant airline to fly with.

[spacemunky]

How's Ashton?

[kingcarr21]

On 07/09/2019 at 12:16, spacemunky said:

How's Ashton?

How did I miss this, so sorry. I just thought bloody hell its been a while since I posted in this chat.

 

So here's the latest.

 

Development wise he is doing really well. Ashton can now walk for longer in his walker, he can crawl up the stairs and get down the stairs (with assistance). So his sense of exploration is improving massively. He still wont attempt his first unaided step but he is so close. Just keep going and he will just do it one day. 

 

He has also lost his first tooth, unfortunately he swallowed it. So I have been inspecting his nappies but to no avail. Cant find it and I have given up looking as I am sure you can imagine its not the most pleasant task .

 

Having some trouble with Ashton's NHS physio. She is just useless. The attitude of NHS physios is just a joke, work part time and when they are working its the absolute minimum. Ashton's physio report wasn't received until the end of his first school year. How are teachers meant to implement physio activities in Ashton's everyday learning if they are given nothing. Luckily me and the wife are on the ball and asked the teachers to do what our private physio does with Ashton. So Ashton hasn't gone without but it just seems like the NHS physio is 9 months behind. I'm telling her what Ashton needs.

 

We raised a complaint with her manager and she's no better, just palms you off. We are going higher up with our private physio assisting the complaint cause she is also not happy with Ashton's physio report, absolute basic and doesn't reflect where Ashton's is striving to get to. 

 

Health wise Ashton has been really good, no illnesses which is always a bonus. Since the last update we went to Wales on a little break away and Skegness for a weekend. Good times playing on the beach, He would sit there all day letting the sand run through his fingers. All sensory play.

 

We have also took the plunge and booked to go Disney World Florida. Flying out on his Birthday (New Years Day). So we have a weeks cruise in October and a 2 week Florida trip start of next year. Good times coming up. Just need to pay for it all  

[spacemunky]

31 minutes ago, kingcarr21 said:

He has also lost his first tooth, unfortunately he swallowed it. So I have been inspecting his nappies but to no avail. Cant find it and I have given up looking as I am sure you can imagine its not the most pleasant task .

Now that makes me glad i asked 

 

Always good to hear that he's doing well and progressing. Small steps, at least that's my strategy