Ashtons Journey

[stripeyfox]

On 29/08/2017 at 22:36, kingcarr21 said:

Ashton loving his trip to the beach 

IMG_4887.mp4

Mate, he's really got the crawling mastered! Great to see!
 

[kingcarr21]

You will have to excuse the video quality. I had to compress the clip in order to attach

IMG_4902.mp4

[kingcarr21]

I got home from work yesterday to find Ashton on his trike and actually moving around on it using his feet. He has never done this before. The wife sat him on it and off he went . This will give his legs a good bit of exercise. Hopefully one step closer to him walking.

 

He also last week fed himself with a spoon for the first time. So another really good achievement. So proud of him.

 

Looking forward to going Turkey next month for 10 days. He will love the beach and putting sand in his hair.

[Webbo]

2 hours ago, kingcarr21 said:

I got home from work yesterday to find Ashton on his trike and actually moving around on it using his feet. He has never done this before. The wife sat him on it and off he went . This will give his legs a good bit of exercise. Hopefully one step closer to him walking.

 

He also last week fed himself with a spoon for the first time. So another really good achievement. So proud of him.

 

Looking forward to going Turkey next month for 10 days. He will love the beach and putting sand in his hair.

Weather can be very iffy in Turkey in October. Whereabouts are you going?

[kingcarr21]

On ‎08‎/‎09‎/‎2017 at 14:32, Webbo said:

Weather can be very iffy in Turkey in October. Whereabouts are you going?

Sorry I hadn't seen your response. We are going Sarigerme. We went there 2 years ago in October and the weather was spot on. mid 20s so not too hot for Ashton.

 

 

[kingcarr21]

September is always fun. Our annual trip to A+E last Friday. The wife took Ashton doctors hoping for some antibiotics as he was getting signs of a chest infection (his 4th Chest infection, previous 3 have admitted Ashton to hospital for 3 night, 2 night and 1 night respectively). Doctor checked him over and called for an ambulance as Ashtons heart rate was over 180BPM and was struggling to breathe due to his chest. Got to the Royal and their new Childrens A+E is brilliant. New facility with loads of staff and was looked after really well.

 

He had steroids which sorted his chest right out. His heart rate was still high though, a high heart rate is a side effect of the inhaler he was given for his Chest so we were admitted to a ward for monitoring. What a nightmare, we were sat in the waiting room for 8 hours being monitored. Whilst there it was so noisy which with Ashtons condition had him so scared which wouldn't help his heart rate come down.

 

1 Child was running riot in the waiting area, getting drinks of water, taking a sip and spitting it at other children, his mother just sat there shouting his name, 'Okas'.....'Okas'......f****** 'Okas'.

 

Think i've had nightmares about that name over the weekend  

 

Doctor wouldn't let us go, lost count how many times I told them about Ashtons condition and sitting in the waiting room wont help his heart rate. We eventually were told that we could go once we had Ashtons inhaler and steroids. We wait 45 minutes before we finally get his meds, only his inhaler. The wife is fuming at this point. To go from such an amazing A+E to this shit heap. We ask where the Steroids are and the nurse had missed them out. So another hour we had to wait before we got them. Luckily we didn't have to stay overnight. Ashton was shattered at this point, got home, Fish pie ready for him and straight off to sleep.

 

On a better note, Ashton has started to practise walking holding a horizontal bar either side of him. Doing really well with his mobility now. Crawling around so quickly now and adventuring around. Still no speech from him.

 

We also went to look at a special school for him for next year. Birkett House in Wigston. What a wonderful facility. Hope he gets a place there. Will wait and see.

 

Yesterday we got his room fitted with black out blinds so now his light sessions will have a better affect on him now we can block daylight out 100%. Small gains.

 

So going well so far. Here's hoping for a nice holiday in Turkey next month

[stripeyfox]

31 minutes ago, kingcarr21 said:

September is always fun. Our annual trip to A+E last Friday. The wife took Ashton doctors hoping for some antibiotics as he was getting signs of a chest infection (his 4th Chest infection, previous 3 have admitted Ashton to hospital for 3 night, 2 night and 1 night respectively). Doctor checked him over and called for an ambulance as Ashtons heart rate was over 180BPM and was struggling to breathe due to his chest. Got to the Royal and their new Childrens A+E is brilliant. New facility with loads of staff and was looked after really well.

 

He had steroids which sorted his chest right out. His heart rate was still high though, a high heart rate is a side effect of the inhaler he was given for his Chest so we were admitted to a ward for monitoring. What a nightmare, we were sat in the waiting room for 8 hours being monitored. Whilst there it was so noisy which with Ashtons condition had him so scared which wouldn't help his heart rate come down.

 

1 Child was running riot in the waiting area, getting drinks of water, taking a sip and spitting it at other children, his mother just sat there shouting his name, 'Okas'.....'Okas'......f****** 'Okas'.

 

Think i've had nightmares about that name over the weekend  

 

Doctor wouldn't let us go, lost count how many times I told them about Ashtons condition and sitting in the waiting room wont help his heart rate. We eventually were told that we could go once we had Ashtons inhaler and steroids. We wait 45 minutes before we finally get his meds, only his inhaler. The wife is fuming at this point. To go from such an amazing A+E to this shit heap. We ask where the Steroids are and the nurse had missed them out. So another hour we had to wait before we got them. Luckily we didn't have to stay overnight. Ashton was shattered at this point, got home, Fish pie ready for him and straight off to sleep.

 

On a better note, Ashton has started to practise walking holding a horizontal bar either side of him. Doing really well with his mobility now. Crawling around so quickly now and adventuring around. Still no speech from him.

 

We also went to look at a special school for him for next year. Birkett House in Wigston. What a wonderful facility. Hope he gets a place there. Will wait and see.

 

Yesterday we got his room fitted with black out blinds so now his light sessions will have a better affect on him now we can block daylight out 100%. Small gains.

 

So going well so far. Here's hoping for a nice holiday in Turkey next month

Sounds a nightmare. The LRI is good - my missus works there, not in A&E but childrens cancer ward. But we've been in A&E with our son when he was a baby and the high depenceny unit and the fact it the nurses are working under incredible strain. Sometimes the standard 12 hour shift can overrun with no breaks and having to look after loads of kids. It's no wonder they end up making mistakes.

 

Glad he's making progress with the mobilty. Hope the speech comes soon mate

 

 

[kingcarr21]

Quick update

 

Finished our application for a grant to get a new bed for Ashton. He is fast outgrowing the cot he is in which he has destroyed the slats. Currently held together with nails and straps. Occupational Therapist has said he is fine in a regular bed which is a cop out from the NHS as usual. He has no sense of danger so will fall out of a regular bed and faceplant the floor. Our private physio has supported our application saying categorically he requires a specialist bed. Hopefully our application is successful. Below is the bed we are hoping to get. Fully adjustable so we wouldn't have to change/dress him on the floor anymore.

 

No improvements in his mobility. He is still bombing around crawling but no signs of him wanting to go from kneeling to standing. Will just continue with his physio and hopefully he will pick it up.

 

He has started to make really loud squeals when he gets excited. Which is a good sign due to his sensitivity to loud noises. When we went to Snowdrop the doctor said Ashton wont talk due to his sensitivity issues. The CD he listens to each day has clearly started to work now he is making the high pitch noises himself. So good signs that he will start to make different types of noises which will hopefully lead on to him saying his first word. 3 months until he turns 4 and still no speech. I really am desperate to hear him call me daddy.

 

A more pressing issue we have at the moment is Ashtons drinking cup. He has severed the teet on his cup. So now we need to get him to drink from a new cup but will he try. Not a chance. As soon as he puts a new cup in his mouth and chews the teet he knows its not his cup, takes no fluid and throws his cup away. The wife has continued sending his cup with the damaged teet to nursery but its too dangerous. If that breaks off he will probably try to swallow it so I have taken action and threw it away. So now I have forced the issue and he needs to learn to drink from a new cup.

 

People tell me to just leave him and eventually he will drink from it when he is desperate for a drink but how can we be sure he knows he needs to drink from the new cup to quench his thirst. With his condition he doesn't know/realise that he needs to drink to survive. So I have found myself using a syringe to get drink down him. I'm sure he will take to a new cup soon, i've told the nursery they have to persevere with it.

 

Going to look at another school on Wednesday for when he moves from the nursery and into fulltime education. Will take a lot to beat the school we looked at in Wigston (Birkett House I think it was called, my memory is terrible)

 

Lastly we go on holiday to Turkey on 13th October for 10 days. Cant wait to get him in that pool and at the buffet restaurant. He will love it.

[ozleicester]

Some tough stuff there, Good luck mate, thanks for the update.Fingers crossed he will be up and about and drinking in no time .

[kingcarr21]

My lil boy rules his nursery . He has got the whole class doing fake coughing. Its what me and Ashton always do at home, I will walk past him and do a fake cough and he copies me so now he has everyone doing it.

 

Took him for a hearing test yesterday. They wanted to rule out that it was his (lack of) hearing that was the cause of him not speaking which isn't the case. Doctor was very happy that his hearing is fine (which me and the wife knew anyway but still good to rule it out) So it is just a case of encouraging his brain to engage with speech. Just need to keep up the work and hopefully he responds sooner rather than later.

 

We are going Turkey on Friday for 10 days. The wife has gone nuts with packing his suitcase. He has 3 different outfits per day, She is crazy.

 

Looking forward to getting him in the sunshine and the pool. A well deserved break from all his physio, appointments and nursery etc.

 

If I don't post again I will post after our holiday. Will try and get some nice photos of Ashton to post on here.

[Izzy]

Have a wonderful time on holiday @kingcarr21

 

If anyone deserves a break, it’s you and your family mate 

[kingcarr21]

5 minutes ago, Izzy Muzzett said:

Have a wonderful time on holiday @kingcarr21

 

If anyone deserves a break, it’s you and your family mate 

Thanks Izzy. I'm going to miss all of your top quality jokes whilst i'm gone

[kingcarr21]

Arrived back home yesterday from a brilliant 10 days in Turkey. A nice break had by all. Ashton did what he loves, eat and sleep  

 

He was constipated the first couple of days but luckily I took some of his laxatives. Other than that he had a great time. So many different foods to eat and he loves the pool although it was freezing.

 

The weather was great, a steady mid-high 20s with not a cloud in the sky. Took his walker with us so he could walk around at the kids disco. Got a bit noisy for him some nights which upset him but cant be helped. He soon got over it.

 

We used the 'Special Assistance' at the airports which was pretty good. Got through passport control quickly so we could get his pushchair. Got a few looks from people who just assumed we were a family with a child (i.e not with a disability). The main reason I asked for Special Assistance was because coming from Tenerife in the summer I had to carry Ashton for about 50 mins trying to get through Passport control. Now he is getting older and heavier it was a pain even for me. The S.A was a big help, got to queue jump so we could go straight to the carousel to get his chair. Will certainly use it again. I saw one woman go up to the counter to ask if she could use the S.A for her family because we were using it (their youngest child was walking, they may have had a disability but if so then they would have requested S.A to begin with so I can only assume they had no disability). We do still get stares from people even at the supermarket when we use a disabled bay because Ashton doesn't look 'disabled'. I try and not let it get to me but it's hard to bite your tongue.

 

When we got home Ashton was so excited to get back to the 55" TV in the lounge to watch Baby TV  

 

Now onto his bed situation, we should be receiving a loan bed on Friday for him to use until the charity have got the funds to get Ashton his own specialist bed. This will be a massive help, no more dressing him on the floor.

 

Next week going down to Devon for his 1st Reassessment for his brain stimulating programme. It was way back in March when we began the programme and the doctors first major thing he wanted Ashton to do was to get his internal arousal going. So to make Ashton want to crawl around to see what was going on around him, the programme has certainly worked in getting him to explore more around the house and Ashtons tolerance to noise has improved massively, he still gets scared and pulls a sad face but he doesn't actually cry as much now. Also when we started the programme Ashton used to spit the last bit of juice out of his mouth when drinking, the programme put a stop to that straight away so all in all the Snowdrop programme has certainly been a success. Now it will be interesting to see what new actions the doctor will give us to take the next step in Ashtons progression. The actions he gave me to do to try and get Ashton to talk hasn't worked as of yet. That's what I am desperate for now.

 

Will post some pictures of Ashton on holiday shortly

[kingcarr21]

Ready to do his favourite thing in the world. Eat  

[Costock_Fox]

2 hours ago, kingcarr21 said:

Ready to do his favourite thing in the world. Eat  

Tell you what if he ate all of that you aren't wrong about him liking his food .

 

Glad he's doing well mate.

[Jon the Hat]

4 hours ago, kingcarr21 said:

Ready to do his favourite thing in the world. Eat  

Lads on tour!  Have a great holiday!

[kingcarr21]

Went to look at another school today. Ashmount in Loughborough. We have looked at 3 schools and liked all 3 so now we need to decide our order of preference. With Ashton though I feel that his additional needs are quite generic so any school would all do the same for him. I think we are steering more towards Ashmount. Will have to weigh up the pros and cons.

 

Got my daughters party tonight at rebound trampoline park. Don't think we will take Ashton though because of the noise. The place makes me want to cry let alone Ashton  

 

Its all becoming a bit surreal now we are sorting out Ashtons education. Just cant imagine him as a teen walking around and talking. Scares me a bit how he will be socially and his intellect when he is older. Just have to keep doing whats best for him and im sure he will be fine when he is older. No use worrying about it now

[stripeyfox]

7 hours ago, kingcarr21 said:

Went to look at another school today. Ashmount in Loughborough. We have looked at 3 schools and liked all 3 so now we need to decide our order of preference. With Ashton though I feel that his additional needs are quite generic so any school would all do the same for him. I think we are steering more towards Ashmount. Will have to weigh up the pros and cons.

 

Got my daughters party tonight at rebound trampoline park. Don't think we will take Ashton though because of the noise. The place makes me want to cry let alone Ashton  

 

Its all becoming a bit surreal now we are sorting out Ashtons education. Just cant imagine him as a teen walking around and talking. Scares me a bit how he will be socially and his intellect when he is older. Just have to keep doing whats best for him and im sure he will be fine when he is older. No use worrying about it now

I suppose it is normal to worry about how your kids will cope when they become teenagers - especially as you have an older child as well so you're bound to think "how is Ashton going to be when he's her age". I'm a born worrier and I'd be stressing morning noon and night about him, but you're absolutely right. You've done brilliantly with him up till now and you can see what a little diamond he is. I am sure he will find his own way with your support. 

 

Love seeing him and reading your updates mate. Don't always have the time to respond but trust me, please keep letting us know how you are all getting on.

 

 

[kingcarr21]

A mega busy week so here goes.

 

Travelled down to Devon Wednesday evening and stayed overnight ready for our appointment with Ashtons Snowdrop Doctor. He was really happy with Ashtons progress and have given us a new programme for us to follow which is geared more towards Ashtons vocals. Ashton is 46 months old with the vocal range of a 2 month old. So clearly this area is going to be our new focus. I received the programme this morning so time to get back to work and hopefully over the next 6 months we will start to see some improvements.

 

Here is a snipit of the programme

 

Activity. - Face Percussions

Reason.- To ensure normal tactile perception in and around the mouth.  The trigeminal nerve which controls tactile perception in the mouth, spans out like a spider's web all over the face.

How to do it. - As you saw me, gently tap Ashton's face around the mouth, jaw, cheeks and forehead, (His head placement on the table could be a self stimulation of this nerve).

 

This is 1 activity that will help with his vocals. Will be interesting to see if we start to see some results over the next 6 months.

 

On Friday we got Ashtons loan bed delivered. It's an absolute fortress, takes up the whole room. I love it. Its all adjustable so we can now change him at waist height instead of on the floor. He is also better protected so he can move around and get comfy whilst it gives us piece of mind that he cant fall out or get his limbs stuck in the bars etc. Got ourselves a new video baby monitor as well so its nice now we can see him and what he is upto.

 

Went round my bros last night for fireworks which Ashton wasn't keen on. All the kids getting excited and the loud bangs meant he wasn't comfortable so I kept him inside. He was sat on the floor when my bros girlfriends brother in law stood on Ashtons hand with his boots on. Not the cleverest thing to do but Ashton was fine, he just looked at his hand and then carried on playing so I think his pain threshold is still quite high.

 

He is back at nursery today so back to normal. His funds that we raised has now diminished to his final £200 so need to start thinking about doing another fundraiser to keep his private physio going along with Snowdrop. All fun and games

[kingcarr21]

Another busy week. Took Ashton to have his pushchair adjusted, getting quite tall now. His new bed has been a god send. Getting into his new programme now and enjoying his new activities. One of them is rolling him on a gym ball which he laughs his head off so its nice to know he can enjoy his exercises.

 

He has started to be more expressive. Shaking his arms when he gets excited and he now makes different types of noises so its all good signs that it wont be long before he says his first proper word. Although ive read stories of people with ACC never being able to speak which is a worry. Will keep on going and im confident he will get there.

 

Going to his nursery tomorrow to watch him go around an obstacle course in his walker, should be fun.

[ozleicester]

All sounds great.  hehe his lunch looked bigger then him

[kingcarr21]

Apologies for the video quality. I compressed the file in order to post on here. Ashton doing really well with his walking with parallel bars. Just ordered some for the house so he can practise everyday. 

 

He is starting to come out with some different noises so I really think his first official word won't be too far away. 

 

Got the Question of Brains charity night tomorrow for STEPS. Raise money for another good cause whilst having a 3 course meal and plenty of drink. Also happens to be my birthday so another reason to drink haha

IMG_5076.MOV

[stripeyfox]

On 20/11/2017 at 12:02, kingcarr21 said:

Apologies for the video quality. I compressed the file in order to post on here. Ashton doing really well with his walking with parallel bars. Just ordered some for the house so he can practise everyday. 

 

He is starting to come out with some different noises so I really think his first official word won't be too far away. 

 

Got the Question of Brains charity night tomorrow for STEPS. Raise money for another good cause whilst having a 3 course meal and plenty of drink. Also happens to be my birthday so another reason to drink haha

IMG_5076.MOV

That will be a huge milestone mate. 

 

Definately need to get some more funds raised soon. Glad he's getting on well with his new bed.

 

Keep us updated mate, love reading about him!
 

[kingcarr21]

Took Ashton to see his NHS physio yesterday and he showed off with the parallel bars. Whilst walking he took a small step onto a low wooden box and stepped off it as well. He is doing so well. We should get our own parallel bars soon so we can set up a little obstacle course for him at home. Plenty of practice and he will be walking much quicker. Think we are all in agreement that he is strong enough to do it just needs the confidence to give it a go on his own. Im sure it will all fall into place with practice

 

Went to the charity night to raise money for STEPS. Raised over £74K which was a brilliant effort. We won a huge teddy bear in the raffle so was well chuffed. As it was also my birthday I made sure I got tanked up on the free champagne .

[kingcarr21]

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 . 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