Our system detected that your browser is blocking advertisements on our site. Please help support FoxesTalk by disabling any kind of ad blocker while browsing this site. Thank you.
Jump to content
kingcarr21

Ashtons Journey

Recommended Posts

1 hour ago, kingcarr21 said:

Well Ashton used the potty yesterday for the first time ever. He was at nursery when he did a wee. A small achievement but an achievement none the less. Then last night I went out to pick some food up and when I got home the wife asked me to go to the toilet to get some tissue.

 

I open the door to find a massive turd in the potty at home lol. Absolutely stunk the house out but the wife left it for me to see it. So in the same day he used the potty twice. Felt weird celebrating your kid taking a shit lol 

 

 

 

 

Celebrate every win :)

Link to comment
Share on other sites

  • 2 weeks later...

I only tend to go on Foxestalk on my work laptop so I will write a message now.

 

No real updates to mention about, still waiting on Ashton's parallel bars to arrive, been a nightmare to buy him things for Xmas and Birthday. Looking forward to a good Christmas.

 

If I don't get chance then we wish you all a Merry Christmas. Here's hoping Christmas 2018 Ashton will be walking and talking.

  • Like 4
Link to comment
Share on other sites

  • 2 weeks later...

Had a good Xmas. Ashton got some nice things but now we are struggling to think of what to get for his birthday on New Years Day. He has loads of clothes and he's only interested in his faithful toys. We might not actually bother getting him anything, he isn't interested in opening presents and we won't have a party this year either. We've always had the family round for a big get together but he hates it as the nieces and nephews are way too noisy which just upsets him and he spends his birthday scared of where the next loud noise is coming from. 

 

So this year we will have a nice day at home with a nice roast dinner. He can watch his Baby TV in peace. If he could talk then that would be his perfect day, his food and favourite cartoons on TV. 

 

I still feel bad tho not getting something for his birthday. It feels like a waste of money as he just simply doesn't understand his birthday. I normally get him a Leicester kit but the one he got for his 3rd still fits him now. 

 

He is just so so hard to buy for bless him

  • Like 1
Link to comment
Share on other sites

17 minutes ago, kingcarr21 said:

Had a good Xmas. Ashton got some nice things but now we are struggling to think of what to get for his birthday on New Years Day. He has loads of clothes and he's only interested in his faithful toys. We might not actually bother getting him anything, he isn't interested in opening presents and we won't have a party this year either. We've always had the family round for a big get together but he hates it as the nieces and nephews are way too noisy which just upsets him and he spends his birthday scared of where the next loud noise is coming from. 

 

So this year we will have a nice day at home with a nice roast dinner. He can watch his Baby TV in peace. If he could talk then that would be his perfect day, his food and favourite cartoons on TV. 

 

I still feel bad tho not getting something for his birthday. It feels like a waste of money as he just simply doesn't understand his birthday. I normally get him a Leicester kit but the one he got for his 3rd still fits him now. 

 

He is just so so hard to buy for bless him

Just my opinion, but, i imagine you know what is best for Ashton and if that is quiet day without anything special.. then thats the perfect present. 

 

I hope you all have a wonderful 2018 with lots of learning and love.

Edited by ozleicester
  • Like 1
Link to comment
Share on other sites

1 hour ago, kingcarr21 said:

Had a good Xmas. Ashton got some nice things but now we are struggling to think of what to get for his birthday on New Years Day. He has loads of clothes and he's only interested in his faithful toys. We might not actually bother getting him anything, he isn't interested in opening presents and we won't have a party this year either. We've always had the family round for a big get together but he hates it as the nieces and nephews are way too noisy which just upsets him and he spends his birthday scared of where the next loud noise is coming from. 

 

So this year we will have a nice day at home with a nice roast dinner. He can watch his Baby TV in peace. If he could talk then that would be his perfect day, his food and favourite cartoons on TV. 

 

I still feel bad tho not getting something for his birthday. It feels like a waste of money as he just simply doesn't understand his birthday. I normally get him a Leicester kit but the one he got for his 3rd still fits him now. 

 

He is just so so hard to buy for bless him

Totally agree with Oz here mate. Trust your instincts and you know Ashton better than anyone in the world. 

 

Actually, watching my favourite TV programs all day in peace with a roast dinner sounds like the perfect birthday to me :)

 

Maybe instead of just buying Ashton more  ‘stuff’ for his Birthday, put the money away towards some of the bigger equipment expenses he needs?

 

Either way, I’m sure he’ll love the day and I hope you all see the process you want in 2018

 

Good luck mate :thumbup:

Link to comment
Share on other sites

3 hours ago, kingcarr21 said:

Had a good Xmas. Ashton got some nice things but now we are struggling to think of what to get for his birthday on New Years Day. He has loads of clothes and he's only interested in his faithful toys. We might not actually bother getting him anything, he isn't interested in opening presents and we won't have a party this year either. We've always had the family round for a big get together but he hates it as the nieces and nephews are way too noisy which just upsets him and he spends his birthday scared of where the next loud noise is coming from. 

 

So this year we will have a nice day at home with a nice roast dinner. He can watch his Baby TV in peace. If he could talk then that would be his perfect day, his food and favourite cartoons on TV. 

 

I still feel bad tho not getting something for his birthday. It feels like a waste of money as he just simply doesn't understand his birthday. I normally get him a Leicester kit but the one he got for his 3rd still fits him now. 

 

He is just so so hard to buy for bless him

That sounds like a perfect day. 

Maybe just put the money you would have spent on him into his snowdrop fund, and ask other friends and family to do the same?

 

You know him best, and if a quiet day at home suits Ashton best, then that is the right thing to do.

 

 

Link to comment
Share on other sites

Well after a nice relaxing break its back to normal tomorrow with Ashton going back to nursery. He had a great xmas and birthday. We still had family come round but because we didn't put food on they didn't stay too long which was good. Ashton put up with the noise really well.

 

Now we have got rid of the Xmas Tree we now have his parallel bars set up in the conservatory. Went Physio on Saturday and she has suggested we see her every fortnight now instead of weekly as we have the knowledge and equipment to do our own sessions with him. Nice to know she is thinking of our costs rather than lining her own pockets.

 

We got his EHCP (Educational Health Care Plan) through the post last week. This is his plan for when he moves into full time education in September, each expert putting their input forward in order to know what he requires at school. Overall very happy with it and we have requested him to go to Ashmount in Loughborough. Now we are waiting for Ashmount to repond as to whether they can meet his needs and if they have sufficient space for him. Fingers Crossed. If for one reason or another he cant go Ashmount then we know Birkett House will be able to accommodate him. Another great school but its in Wigston and the commute to and from might be a pain. Will just have to wait and see. Probably wont know for a few weeks.

 

Now its 2018 I can start looking forward to the holidays we have this year.

 

Going Wales in Feb, Mexico in March and Centre Parcs in July (which have just this second been approved at work :thumbup:) so plenty of things to look forward to.

  • Like 1
Link to comment
Share on other sites

Been cracking on with using Ashtons parallel bars at home, on top of his Snowdrop activities and Nursery he is so tired by the end of each day, so tired bless him.

 

Just need to keep going as he struggles with stepping down. He puts one leg down but then doesn't bend his standing leg in order to get down. Just have to persevere.

 

This Saturday will be an eye opener, I have found a charity called Corpal, they specialise in Ashtons condition, turns out they have meetings throughout the year so other people who have the condition or are a parent of someone with it can meet up. Will be so nice to finally meet people who know what we are going through and we can see how it affects people as they get older. I look at Ashton now and think that he will always stay with me and my wife for his whole life, I just cant see how he will ever be able to live independently, this meeting will show me how others have overcome obstacles and will give me a realisation of what's to come.

 

Will tell you all about it next week

  • Like 3
Link to comment
Share on other sites

We went to Manchester for that charity meeting. Was ok I guess. We met some other families and saw other children with Ashtons condition. Its safe to say that I have absolutely no idea what the future holds for Ashton as all the other kids had varying abilities. Some kids were in wheel chairs, non vocal and completely dependant on a carer. Other kids were running, talking, playing on mobile phones etc. The spectrum for what a child can achieve who have ACC is so wide that there is just no way to know how Ashton will be in say 5 or 10 years time. Its totally down to the individual and how there brains have adjusted to the condition.

 

There was a boy there, early teens who couldn't talk much and was crawling around, not able to walk. The way he sat on the floor was exactly the same way as how Ashton sits (Legs and body making an M shape).

 

A lot of the kids suffer with seizures/epilepsy which Ashton has avoided so far, fingers crossed we never have to deal with anything like that but these may develop as he grows older. not sure how the wife will cope if it happens and im not there. Hopefully he can avoid them.

 

I suppose it felt a bit of a waste of time but it was our first meeting, people seemed to talk to each other and we just sat there, managed to talk to a couple of families so wasn't a complete waste and I guess we have introduced ourselves so the next meeting might be more beneficial.

 

Next meeting is in London in May, this is the main meeting as they have a scientist from America come to tell everyone their latest research results into ACC. In America its more of a researched condition than it is here so we have our hotel booked and will head there to hopefully get a more fulfilled meeting.

 

So for now its back to doing Ashtons snowdrop exercises each day along with his physiotherapy and just help him out as much as we can. He is still very happy and that's what's most important.

 

 

  • Like 3
Link to comment
Share on other sites

  • 2 weeks later...

Well its been a bit of an eye opener this week. If people can remember Ashton was diagnosed with ACC but also he has a Genetic condition called partial 12p Duplication syndrome. When we had a consultation with the Geneticist he advised that this duplication is insignificant, may have no affect on Ashton and is completely separate to his condition of ACC. Therefore we have been focused on Ashton's ACC and the genetic condition we haven't been too worried about.

 

Well the wife after speaking to another mum with a child with a genetics condition last week searched up a website called Unique. A charity that helps all different kinds of genetic conditions with all sorts of info on all sorts of conditions. We decide to look up Ashton's 12p duplication and oh my god. Its all there in black and white. Everything that Ashton is currently suffering with (development delay, low muscle tone, delayed pain threshold, problems with speech and socialising etc) is linked to this chromosome duplication. It even says that people with 12p duplication generally suffer with ACC :blink:. So the geneticist telling us his 12p is insignificant in fact its the root cause of everything he has. So we have been going around saying he suffers from ACC when really we should have been telling people he suffers from 12p duplication which has caused his ACC. :mad: NHS once again showing its absolute incompetence. The lady who runs the Unique website is an expert in genetics so she has requested Ashton's test results from the NHS genetics department so she can see how bad it is as Ashton only has it partially (Funnily enough Ashton suffers from partial ACC also, a coincidence???)

 

The wife was in bits. She has blamed herself all this time as we were told that his ACC was caused due to a lack of oxygen when he was in the womb. She passed out when trying on wedding dresses so we put it down to that incident. This website says that 12p duplication in no way could have been prevented and nothing that happened during pregnancy caused it as its genetics. He was just unlucky. So naturally the wife is fuming. Doesn't change anything going forward but we don't understand why the geneticist would tell us it is insignificant when its documented that ACC is a symptom of 12p duplication. He also told us that there was no other person on NHS record with his duplication which is nonsense. I assume they meant the amount that is actually duplicated and not the duplication itself.

 

Which brings us onto the incompetence of the genetics department, we should have got a copy of Ashton's Genetics test results and lab report with the consultation letter in 2016. They never arrived, only the consultation letter. I called their department and the secretary advised she would send them out, I specifically asked for his array CGH results and original lab report, so what do I get, just the copy of the consultation letter, ffs, I call again and speak to a different secretary who has now hopefully sent out the correct documents.

 

It may turn out that his duplicated chromosome is so small that it was unlikely to be the cause of his ACC, but it would be one hell of a coincidence for Ashton to suffer from partial ACC as well as him suffering from a partial 12p duplication, I highly doubt they aren't connected.

 

Anyway rant over, Feel better now.

 

Just had Ashton's splint appointment. He has a new splint for his hands to help get his thumb to be in the right position. Not sure how long he will keep them on for though.

 

Going to Wales on 12th Feb until 16th Feb. A getaway in a cottage for a friends 30th. Just shut off from the outside world and chill out, play games, go in hot tub etc. Cant wait. Just hope the kids wont be too bored.

 

Also got Fish & Chip bingo at my daughters primary school tonight. Always a good laugh.

  • Thanks 1
Link to comment
Share on other sites

  • 4 weeks later...

Been a while since my last update.

 

Went to Wales for a quick get away. Was a nice relaxing week.

 

Unfortunately my Nan passed away on the 6th Feb at the grand old age of 93. We have her funeral on 6th March. That will be an emotional day, what a lady she was bless her X.

 

Going Mexico in 3 weeks. This holiday has been 2 years in the making, Originally booked to go Egypt Summer last year (Original booking was made April 2016) but was declared a no fly zone, so we had £2600 to put towards another holiday so decided to go all out and book Mexico. Cant wait to get Ashton in the pools. 15 nights All inclusive. He will fill his tummy up all day long lol.

 

Also decided to book a week cruise round the med for October 2019. Never done one before and its something I have always fancied doing. We booked it over the phone and I requested for a room that was accessible for Ashton's special chair and a double bed. The girl put us in a standard cabin and said all will be fine. When I got the booking confirmation it stated that it was a twin bed. We need a double so Ashton can sleep between me and the wife. He cant possibly sleep on a pull down bed he will roll out.

 

I got a call back yesterday saying that the girl who took the booking did it in error, they don't have standard cabins with double beds. So they have had to upgrade us to a suite with balcony as its the lowest grade room that has a double bed which sleep 4 people. Result. Its cost them about £600 lol. Thing is I didn't kick off I was going to say we would make do with the twin room but she just went straight out with it and said they would upgrade us as it was their error. I'm not going to complain.

 

Then after that phone call I receive another call regarding Ashton's bed. If people remember I applied for a specialist bed as he destroyed his old cot and he still has no sense of danger so can easily roll out of a regular bed. The charity sent out a loan bed (which they would do a straight swap once they had a bed ready) which is brilliant, but then the NHS came out and assessed his sleeping arrangement and said he didn't need a big bed like that and could sleep on a mattress on the floor (we were fuming, treating Ashton like a ****ing dog) so with their report the charity was going to make a decision whether to give us a bed or not.

 

Ashton's private physio spoke to them and said categorically he needs a proper bed that he will be safe and secure in. So we received the phone call 5 minutes after the Cruise phone call to say that the application is successful and they will be delivering the bed this month. 2 bits of good news in the space of 5 mins.

 

Snowdrop/physio wise Ashton still doesn't seem to be making further progress. We seem to have hit a brick wall, he can crawl really well and can get up on his knees but just wont put one foot down to try and stand. His muscles are strong enough its just getting his brain to engage with the idea of putting one foot down to push off. His speech is still non existent.

 

He's been a little under the weather the last week. Every sneeze has been a shower of snot. He went for his jabs on Monday for Mexico, just a Hep A booster.

 

My daughter found out today she is going to Anstey in September so she is happy, may be a lil longer before we find out which Special School Ashton will go to. Think county hall receive the available numbers from the special schools today so will now go into looking at allocation.

 

So now just counting down the days until Mexico.

Link to comment
Share on other sites

Thanks for the update always great to read.

 

The doctors do try, but they just really dont know that much about so many things, I hope that the things you and your wife discover are able to be used to iprove all of your lives.

 

Glad the bed thing was sorted and fingers crossed for the Mexico trip...hope you all have an absolute ball :)

  • Like 1
Link to comment
Share on other sites

  • 1 month later...
  • 3 weeks later...

Well yesterday was fun. Left the house at 6am to drive down to Devon for Ashtons appointment. We got to a services on M5 for breakfast when I get a phone call from my dad to say he had been knocked off his bike, he's currently in hospital waiting for an operation on his leg. Dislocated foot and 1 broken bone in his leg which he needs pins and plates for. Just great. Already told him this morning he wont be having operation today and he needs a CT scan so could be Monday. I hope he hasn't got to stay in hospital over weekend he will lose his mind.

 

So we get to the place for Ashtons appointment at 10am. Appointment is at 10:30am so we wait in the car. 11am comes around and no sign of the doctor. He rents a room for his job on a farm so its just him, no receptionist or anything. I try to contact him and his wife with no response. I double check my emails and definitely got the date right. We decide to go to a local pub for a drink as it was really warm, he finally emails to say he had an emergency hospital visit but he was leaving and to do the appointment in the afternoon. So we go for a carvery lunch (a winner) and head back for 2pm appointment.

 

He was really happy with Ashtons progress, saying he is age appropriate in many areas where he was way behind when we started. He is definitely more aware of his surroundings and he understands language now. His new programme will steer towards him correcting his feet and back in order to make him take a step closer to standing unaided. We are all convinced he is strong enough to stand/walk now but he just isn't confident enough in himself. His feet and back are the problem areas so work starts on correcting the faults to hopefully get him moving.

 

Didn't get home until 7:15pm. I was going to go to the football but due to the delay in the appointment, and the fact I had spent 8 hours driving I thought I would nip to LRI to see my dad instead. I wa shattered so after seeing a boring 0-0 i'm so glad I didn't go.

 

So now we wait for Ashtons new programme, should be with us in a couple of days. Then the work continues

Link to comment
Share on other sites

36 minutes ago, kingcarr21 said:

Well yesterday was fun. Left the house at 6am to drive down to Devon for Ashtons appointment. We got to a services on M5 for breakfast when I get a phone call from my dad to say he had been knocked off his bike, he's currently in hospital waiting for an operation on his leg. Dislocated foot and 1 broken bone in his leg which he needs pins and plates for. Just great. Already told him this morning he wont be having operation today and he needs a CT scan so could be Monday. I hope he hasn't got to stay in hospital over weekend he will lose his mind.

 

So we get to the place for Ashtons appointment at 10am. Appointment is at 10:30am so we wait in the car. 11am comes around and no sign of the doctor. He rents a room for his job on a farm so its just him, no receptionist or anything. I try to contact him and his wife with no response. I double check my emails and definitely got the date right. We decide to go to a local pub for a drink as it was really warm, he finally emails to say he had an emergency hospital visit but he was leaving and to do the appointment in the afternoon. So we go for a carvery lunch (a winner) and head back for 2pm appointment.

 

He was really happy with Ashtons progress, saying he is age appropriate in many areas where he was way behind when we started. He is definitely more aware of his surroundings and he understands language now. His new programme will steer towards him correcting his feet and back in order to make him take a step closer to standing unaided. We are all convinced he is strong enough to stand/walk now but he just isn't confident enough in himself. His feet and back are the problem areas so work starts on correcting the faults to hopefully get him moving.

 

Didn't get home until 7:15pm. I was going to go to the football but due to the delay in the appointment, and the fact I had spent 8 hours driving I thought I would nip to LRI to see my dad instead. I wa shattered so after seeing a boring 0-0 i'm so glad I didn't go.

 

So now we wait for Ashtons new programme, should be with us in a couple of days. Then the work continues

Hope your dad is ok mate and glad to hear Ashton is making good progress.

  • Like 2
Link to comment
Share on other sites

3 minutes ago, kingcarr21 said:

So I took Ashton to his first taste of football at the Kingpower last night watching the U23s. First half he struggled with the noise but soon got used to it. Not sure what he thought when looking at Filbert Fox lol 

 

ive wanted to take my son to see my beloved Leicester city for a long time so this was a nice moment. Think it will be a while before I attempt a Prem game as the noise was too much for him last night.

 

we hav his new programme from Snowdrop so got a whole new set of activities to do with him daily which is geared up to correct his faults that are hindering him from walking. Hopefully this will bring him on in gaining the confidence to stand unaided. 

 

Big year coming up for him when he starts school. Hopefully will help bring him onto the next stage of development

B8D3E682-E313-4463-BDE9-F4367C15749D.jpeg

plus, yo get great seat in the kp with him with you!

Link to comment
Share on other sites

  • 2 weeks later...

Today we received Ashton's long awaited bed. We've had a loan bed for approx. 7 months whilst waiting for funding for his new one. Absolutely love it and so does he. We can practise his climbing in and out of it. Ashton today has been making some new noises whilst watching his fave tv channel, more signs that he is getting a little closer to some actual words.

 

Also at his last physio session we stood him up and let go and he stood unaided for a solid 10 seconds before he lost balance. Absolutely brilliant effort from him. Getting ever closer to him standing unaided. Then the real fun can begin trying to get him to take a step. We are so close to getting him walking which will absolutely transform his life.

 

We have also had confirmation that he will be attending Birkett House for his education years. He will be there until he is 18 and will help teach him everything from Maths and English to cooking and cleaning for yourself. A wonderful school that im sure will help him massively. Another bonus is the lady who Is the manager of the school used to be my Year 6 teacher at primary school so we have already reacquainted.

 

Things feel like progressing again as the last year or so I have felt like we have hit a brick wall, Just need to keep going.

  • Like 4
Link to comment
Share on other sites

  • 1 month later...

Not much to report, since the last post its been much of the same. Still waiting for him to pull himself up to stand. Still making his newer noises. We will be meeting his new teachers on Thursday. They are going to love him. My perfect little boy has all the ladies swoon over him at nursery lol.

 

Still feel like this brick wall will never be destroyed. It's as if where Ashton is atm will be him for the rest of his life. I'm sure it wont be and i'm hopeful that school will push him to the next stage of development but it kills me when I think about the future. Will he have any sort of independent living, learn to drive, get a girlfriend, a job etc. Will I ever get to have a pint with him, take him to the football and not worry about the noise levels.

 

I still dream everyday of him calling me daddy.

 

 

  • Like 4
  • Sad 1
Link to comment
Share on other sites

6 minutes ago, kingcarr21 said:

Not much to report, since the last post its been much of the same. Still waiting for him to pull himself up to stand. Still making his newer noises. We will be meeting his new teachers on Thursday. They are going to love him. My perfect little boy has all the ladies swoon over him at nursery lol.

 

Still feel like this brick wall will never be destroyed. It's as if where Ashton is atm will be him for the rest of his life. I'm sure it wont be and i'm hopeful that school will push him to the next stage of development but it kills me when I think about the future. Will he have any sort of independent living, learn to drive, get a girlfriend, a job etc. Will I ever get to have a pint with him, take him to the football and not worry about the noise levels.

 

I still dream everyday of him calling me daddy.

 

 

Hang in there mate, it'll happen.

  • Like 1
Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
  • Recently Browsing   0 members

    • No registered users viewing this page.
×
×
  • Create New...