Ashtons Journey

[stripeyfox]

Love hearing about him and seeing his smiling face. You're doing a great job mate.

 

 

[kingcarr21]

Been a little while since the last update.

 

Ashton is still progressing well with his Physio and his general development. His physio used to come to the house but know she has a room in Ashby to work from he went there on Saturday. Much more space for him to practise with his walker so he loved it.

 

Last couple of days his cheeks have been really red. Just assumed he was teething. This morning he woke up and his arms are all red as well. Doctor has said it could be Scarlet Fever as it is going around at the moment. With it being contagious he is now house bound.

 

The just giving page for Ashton is now at £1220. Great effort. The lady I did the page for is doing her Rough Runner this Saturday. We were going to go and watch her but now with Ashton not well that looks like a no go. Shame.

 

New car is coming in June for Ashton. Cant wait.

 

Still doing his exercises for his brain stimulating. Can be quite hard to remember to do them within your everyday life but its a program that is quite flexible. Its defo having a positive affect on Ashton as he is much more active in his thoughts. You can see him looking at a toy and then spin round onto his knees and crawl to it. So you know he is thinking 'I want that toy, i'm going to get it'. Its really great to see him coming out of his shell.

 

Still my main concern is his lack of speech. Still no coherent words out of him. 3 and a half now so is a real worry. I'm dying to hear his little voice.

 

My daughter has also been busy. Yesterday she had her modelling photo shoot for her portfolio that will be on PK modelling website in a fortnight. She is possibly going to be one of the faces on the new CBeebies hotel at Alton Towers. Wouldn't mind some free tickets for there.

 

We had a professional photo shoot done couple of weeks ago as a family. The facebook page put one of the photos up. I can safely say I am one very proud dad.

 

 

 

[stripeyfox]

Good to hear he is making progress. Must be hard that he can't talk to you yet, but hopefully he will get there soon.

 

Lovely picture - he sure does love smiling for the camera doesn't he?

 

[kingcarr21]

Saturday was the day my work colleague completed her Rough Runner to raise money for Ashton's care. Me and Ashton were at the finish line to see her. A great effort.

 

Ashton is finally getting over his red rashes that he has had for the last week. Still been his usual happy self. Went out for Mexican on Saturday which he had a chicken Quesadilla and couldn't get enough of it . Finished off with Coconut ice cream he slept like a log Saturday night the greedy little git.

 

Ashton's fund is now at £1350. Think I will give it another week for people to donate then close the page. A wonderful amount which will keep his Snowdrop programme and Physio going for approx. 5 months . Although I may use some of the money to buy him a new bed as he is still in a Cot Bed and at 3 and a half that isn't ideal. We've kept him in that so he doesn't roll out of bed.

 

Currently been looking at travel insurance for the family as we are going Tenerife for the sister in laws wedding. What a nightmare it is to find a suitable insurance company that will cover Ashton's medical equipment (pushchair and walker). The companies all say they insure people with disabilities and their medication but not equipment. There must be an insurer out there that covers all aspects. Will have to do some more digging.

[stripeyfox]

Good stuff mate. Can't really help with the insurance stuff I'm afraid but will ask my mate who is in the business...

 

[kingcarr21]

Well this morning was fun. Ashton woke up this morning letting out a little cry, we have a baby monitor in the room so the wife got up to go and get him. Next thing I know the wife is screaming down the stairs for me to go to her.

 

I don't think ive ever jumped out of bed faster. I run to Ashtons room.

 

Now bearing in mind Ashton still sleeps in a cot bed, completely surrounded by rails, we find him UNDERNEATH his cot .

 

It's a miracle, he has climbed out of his cot on his own..... sadly not.

 

Turns out the Slats had come undone at the end of the cot so the mattress was hanging down. In the night Ashton must have slid down it. He does a lot of kicking so over time he has loosened the slats. We found his body on the floor but his head still in the cot. Luckily he wasn't hurt, a bit shook up from the confusion with all of us running into his room to help him.

 

Now i've been saying for months he needs a new bed. Now it has forced the issue. Problem is its hard to find a bed that is suitable for him. He needs to be surrounded so he doesn't fall out and now also it needs to be a metal frame toddler bed so he is close to the ground in case he falls out and so he cant kick the slats out. We were told he didn't need a specialist bed off the NHS but personally I would feel much more comfortable if he did. Will have to give them a call and see if we can get one.

 

A friend of mine did the Tough Mudder on Sunday to raise a bit more money for Ashton's Just Giving page. Think we will be withdrawing that money soon so will tell you how much we collected.

 

 

[stripeyfox]

16 hours ago, kingcarr21 said:

Well this morning was fun. Ashton woke up this morning letting out a little cry, we have a baby monitor in the room so the wife got up to go and get him. Next thing I know the wife is screaming down the stairs for me to go to her.

 

I don't think ive ever jumped out of bed faster. I run to Ashtons room.

 

Now bearing in mind Ashton still sleeps in a cot bed, completely surrounded by rails, we find him UNDERNEATH his cot .

 

It's a miracle, he has climbed out of his cot on his own..... sadly not.

 

Turns out the Slats had come undone at the end of the cot so the mattress was hanging down. In the night Ashton must have slid down it. He does a lot of kicking so over time he has loosened the slats. We found his body on the floor but his head still in the cot. Luckily he wasn't hurt, a bit shook up from the confusion with all of us running into his room to help him.

 

Now i've been saying for months he needs a new bed. Now it has forced the issue. Problem is its hard to find a bed that is suitable for him. He needs to be surrounded so he doesn't fall out and now also it needs to be a metal frame toddler bed so he is close to the ground in case he falls out and so he cant kick the slats out. We were told he didn't need a specialist bed off the NHS but personally I would feel much more comfortable if he did. Will have to give them a call and see if we can get one.

 

A friend of mine did the Tough Mudder on Sunday to raise a bit more money for Ashton's Just Giving page. Think we will be withdrawing that money soon so will tell you how much we collected.

 

 

Mate, that was a close scare then. I've heard of kids getting trapped under cot beds and suffocating and stuff so definately time to get that new bed. 

 

If you can get the specialist bed from the NHS then that's what I'd do. It's probably better for his needs and won't cost you a fortune. 

 

He'll probably think he's super cool in his new bed! 

[Beliall]

Sounds like quite a scare. Give the NHS hell and get that new bed for him mate

[kingcarr21]

Just been reading back through the thread. 6 months ago yesterday Ashton took his first unaided crawl. 6 months later he is crawling around really well and walking in his walker. Some huge progress in the last 6 months, so proud of him. Will be interesting to see where he is in 6 months time. Still no speech though which is the area I would love to see progress.

[kingcarr21]

The Just giving page has now ended with a total of £1605. So once JG take their 5% and transaction charge it should be roughly £1500. A massive thanks to everyone on here for donating. On top of Ashton's Physiotherapy and snowdrop programme we are looking to turn his bedroom into a sensory room to help aid his Snowdrop activities. So first thing will be to buy blinds so we can completely shut out daylight, this will help with his various lights we have to bathe him in. Then we can look at various toys and chairs for him to sit and play.

 

He is getting much faster with his walker now. He is doing around 6 steps before stopping for a nose around. Hopefully wont be long until we get him walking at a more constant pace over a greater distance. Now we take him to the Physiotherapist in the Smisby village hall he has a much bigger room to learn to walk in which is a massive plus.

 

We are flying out to Tenerife for the sister in laws wedding on Friday. Taking Ashton's walker with us so he can walk down the aisle which will just show how far Ashton has come considering he took his first crawl on November 23rd. I will post a video when we return as I would love you all to see his progression.

 

My wife is doing her final shift tonight before giving up work to be with Ashton more. She can still do 16 hours work and still get Carers allowance but we will see how we get on with her not working at all.

 

 

[ozleicester]

21 minutes ago, kingcarr21 said:

Taking Ashton's walker with us so he can walk down the aisle

How wonderful

 

Good luck to you all

[stripeyfox]

21 minutes ago, kingcarr21 said:

The Just giving page has now ended with a total of £1605. So once JG take their 5% and transaction charge it should be roughly £1500. A massive thanks to everyone on here for donating. On top of Ashton's Physiotherapy and snowdrop programme we are looking to turn his bedroom into a sensory room to help aid his Snowdrop activities. So first thing will be to buy blinds so we can completely shut out daylight, this will help with his various lights we have to bathe him in. Then we can look at various toys and chairs for him to sit and play.

 

He is getting much faster with his walker now. He is doing around 6 steps before stopping for a nose around. Hopefully wont be long until we get him walking at a more constant pace over a greater distance. Now we take him to the Physiotherapist in the Smisby village hall he has a much bigger room to learn to walk in which is a massive plus.

 

We are flying out to Tenerife for the sister in laws wedding on Friday. Taking Ashton's walker with us so he can walk down the aisle which will just show how far Ashton has come considering he took his first crawl on November 23rd. I will post a video when we return as I would love you all to see his progression.

 

My wife is doing her final shift tonight before giving up work to be with Ashton more. She can still do 16 hours work and still get Carers allowance but we will see how we get on with her not working at all.

 

 

Good to hear mate. Bit of a bummer that JG cream off 5% but I guess they've got to make some money somewhere!

As we've said before, the important thing is to do what is right for your family. If that means "adjusting" your wife's working arrangements to get more help then that is absoutely the right thing to do. I'd do the same.

[kingcarr21]

[kingcarr21]

Had a wonderful time in Tenerife for the sister in laws wedding. The photo above was just before the bride came into the church with Ashton ready to lead her down the aisle in his walker. A great moment for everyone to see just how far he has come since he took his first crawl on November 23rd.

 

I managed to get bad sun burn the day after and i'm still bright pink now with my skin starting to peel.  

 

I also managed to get the day of the return flight wrong. Our return flight was 8pm-00:25am and the booking said return date Tuesday 13th June. I assumed this meant the day we return to England is the 13th so the landing time of 25 minutes passed midnight meant we left Tenerife Monday 12th at 8pm and landed Tuesday 13th at 00:25am.

 

When I went to check in online on the Monday it wasn't available until 24 hours before the flight so alarm bells rang. I then found out that we were to leave at 8pm Tuesday and in fact return to England at 00:25am on the Wednesday 14th.

 

A bit confusing when the booking clearly states 'return date Tuesday 13th', technically that isn't correct. Now I don't know about you people on FT but it would make more sense to me to write 'day of departure' and not 'return date'.

 

Luckily work and the school weren't too bothered but we had checked out of our apartment so we crashed at the sister in laws house and had 1 extra day in Tenerife with the family so not all bad, worked out in the end.

 

Now Ashton is grim to be back home and back into his routine of nursery, Steps and Physio .

[kingcarr21]

So last week after a 13 week wait we finally got the car we requested through the motability scheme for Ashton. The SEAT Ateca. Drives like a dream. Really happy with it. The boot space is great so no more struggling to get Ashton's pushchair and walker into the boot of my BMW. I haven't seen an orange Ateca yet so if you see one around Leicester it's most likely me . 

 

Ashtons walker had to go back as the wheel was damaged, got a new one this morning but without the hip support so can't use it. Just another thing the NHS like to get wrong for us. Seriously our experience with the NHS for Ashton has been mostly poor. 

 

Luckily our private physio leant us a walker for him to use. He has now taken 10 steps non stop in the walker before stopping so he is getting the hang of it. He just needs something that motivates him for him to walk to (normally me lying on the floor on other side of the room with a cloth over my face "hiding" from him )

 

his programme is defo having a positive affect on him. He is more active with his crawling and Ashton's sensitivity to high noises is improving. We were out for lunch yesterday and their were a few kids there making lots of high pitched cries/squeals that Ashton didn't cry at. He was upset and pulled his unhappy face but he didn't scream out so his control over himself in that situation is massively improved. 

 

We do hav a problem though. Recently Ashton is always sticking his tongue out. So he is drooling all over himself  he literally looks like he has had a pint of Guinness with his white moustache . 

 

Thats pretty much where we are. Still no speech but with his sensitivity improving I'm sure he will start to develop some more sounds over the next few months. 

[kingcarr21]

Been a while since I last updated. We've just come back from a 5 day break in Weymouth. Ashton had fun playing in the pool. He is really starting to become a little character.

 

Well when we went to his Snowdrop assessment a few months ago they said that we needed to try and get Ashtons internal arousal improved. We have finally found something that he loves so much he will crawl from anywhere to get to it. Crawling from room to room. Before he would stop at the lounge door as the move from carpet to wooden floor seemed to scare him. Not anymore, he just blasts through each door to find the thing he loves.

 

And that thing is his reflection  

 

He goes up to our tall mirror in the bedroom to look at himself, then he looks behind the mirror to see where his reflection is before going back to the mirror with the biggest grin on his face. This has meant the last few weeks he has crawled so much more that he has properly mastered it. Great news. Now its onto getting him to pull himself up to a standing position which is what we are working on now.

 

Still no speech, just a waiting game before he says something. Looks like we will have to think about paying for private speech therapy. Everything is so expensive.

 

Will try and keep the updates on a more frequent basis.

[Jon the Hat]

Well the boy clearly realised he is a good looking lad, nothing wrong with that!  Nice motor as well, glad this is making things easier.

 

Re the NHS , like I have said many times before, it is amazing at critical care, short term stuff stuff, and very very specialist stuff like Charlie Gard for example.  On admin and ongoing stuff the service levels are pretty patchy, some great, some rubbish.

[ozleicester]

 interested that previously he was crawling to you with your face covered....and now is chasing his reflection.... gonna assume that you are one ugly bugger Kingcarr!....;)

 

Thanks again for the update...as always.. best wishes to you all

[kingcarr21]

Just now, ozleicester said:

 interested that previously he was crawling to you with your face covered....and now is chasing his reflection.... gonna assume that you are one ugly bugger Kingcarr!....;)

 

Thanks again for the update...as always.. best wishes to you all

Ill have you know I am ravishingly handsome  

[stripeyfox]

22 hours ago, kingcarr21 said:

Ill have you know I am ravishingly handsome  

The thrashing received by the police in Madrid was a big improvement (so I heard)....

 

[kingcarr21]

5 minutes ago, stripeyfox said:

The thrashing received by the police in Madrid was a big improvement (so I heard)....

 

 

[kingcarr21]

Its been a month since my last update. I've been mega busy at work so the time I used to spend on FT has shot down massively.

 

Ashton is now crawling around really quick. Especially to the mirror to look at himself. His physio is progressing but we are trying to get him to pull himself up to stand which is a big step. Will be a while before we see him do it unaided I think but we will press on.

 

Ashtons next visit to Devon for his 2nd assessment on his Snowdrop programme is now booked for November 2nd. Will be interesting to see what adaptations will happen to his programme.

 

We have some black out blinds on order for his room so he can have proper sensory sessions in his room. this will increase the levels of light from his bulb he takes in.

 

We are also looking into specialist beds for him. Hoping to get funding for one as they can cost anything between £1000-£4000, he is still in his cot.

 

That's pretty much where we are, not a huge amount to update, still trying to get him to say his first word. Starts back at nursery next week, we have his school open day in September so we can look around a potential school for him next September. Cant believe he will be at school.

[kingcarr21]

Ashton loving his trip to the beach 

IMG_4887.mp4

[spacemunky]

14 hours ago, kingcarr21 said:

Ashton loving his trip to the beach 

IMG_4887.mp4

That's great to see him having fun  

 

Where is that at? 

Edited 30 August 2017 by spacemunky

[Merging Cultures]

8 hours ago, kingcarr21 said:

Ashton loving his trip to the beach 

IMG_4887.mp4

That's lovely! He is progressing so well. How are you doing?