Mandy

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Mandy posted a new activity comment 3 days ago

In reply to: David wrote a new post, Nappies! Anyone else having this issue? We have been told Jacob can only have 4 nappies a day – he needs 8! View

As a result of complaining via PALS, I got a phone call this afternoon telling me that we could try a different nappy from our current one, and that they will be sent out to us ASAP. It’s one we have asked for before, and been told we couldn’t have, as the company that the continence team doesn’t supply them. By complaining, they are suddenly…[Read more]
Mandy posted an update 1 month ago

Justin Fletcher is doing live shows. We saw him last year and Jacob had a fabulous time. Well worth the money. Dates and venues are listed on his website http://www.justinfletcher.co.uk/justin_fletcher_live.htm
Mandy posted an update 1 month, 2 weeks ago

Still having Nappy issues, and it’s not looking like that is going to change….
Just heard on the grape vine that the government is trying to save money by reducing the number of nappies/pads each child is supplied daily to 4. Apparently this is the average amount of times a toilet is flushed daily per person. Perhaps the politicians should try…[Read more]
Mandy posted an update 2 months, 4 weeks ago

Jacob is having a few issues with nappies. He is currently wearing Huggies size 6 that are supplied by a continence team here in Kent. They are a perfect fit size wise, but are not absorbent enough, and we are having a number of leaks. This of course is generating huge amounts of washing. The Continence team only use one company…[Read more]
Mandy posted a new activity comment 3 months, 3 weeks ago

In reply to: michelle balogun posted an update Hi Mandy, Thanks for replying so quickly. I have had similar experiences with Matthew. He came to me when he was 2 and 1/2 with oral hypersensitivity, he had never had his teeth […] View

It is a worry, and we hope that Jacob will progress to eating orally again someday. It’s one of life’s pleasures and such a shame that he’s missing out at the moment. I’m glad to hear that Matthew is coming on well. It’s sounds to me like you’re doing a fantastic job with him and as long as he is putting on weight and is happy, what more can…[Read more]
Mandy posted a new activity comment 3 months, 3 weeks ago

In reply to: michelle balogun posted an update Hi I look after a 5 yr old who has cerebral Palsy, I am now able to feed him pureed foods during the day, with fluids, but cannot get him to eat anything lumpy without him […] View

Hi Michelle,
Jacob was able to cope with puréed foods before his gastric tube was fitted last march. We tried to move on to lumpy foods, and he appeared to cope well. His speech & Language lady wanted to be sure, so he had a video fluoroscopy done. This showed that he needed 4or5 swallows to clear his mouth and was at quiet a high risk of…[Read more]
Mandy posted a new activity comment 4 months, 3 weeks ago

In reply to: Stephanie Pommier posted an update Hello! I hope you all had a wonderful Christmas. I went to see my son in France who has the Fragile x Syndrome. Has any of you heard about it? View

Hi Stephanie, I am ”friends” with a lady on my Facebook page who also has a son with fragile x syndrome. I have messaged her to ask if she’d like to join and-me so you can chat. Happy new year, Mandy
Mandy posted a new activity comment 5 months ago

In reply to: Debra posted an update I just wanted to share a very positive experience we had last week when we went to purchase a car seat for our daughter Olivia, who is 3. We originally struggled with car seats for her when […] View

Hi Debra, This is the car seat that Jacob has

http://www.jcmseating.co.uk/pages/hscs_young_sport.html

and it was funded by the Cerebra charity

http://www.cerebra.org.uk/English/Pages/home.aspx

Our nurse advisor team helped us to apply.
There are a number of charities you can approach for help with funding as the seats tend to be expensive. I…[Read more]
Mandy commented on the post, Feeding Category 6 months, 2 weeks ago

Hi Dawn, Jacob has really settled with his feeding tube and put on quiet a bit of weight. He still suffers a little with constipation, but we have increased his fluid intake, so that should help. I’m amazed at how […]
Mandy posted an update 6 months, 2 weeks ago

Off to see Father Christmas at Harrods on Sunday. Good news is, we get bumped to the front of the queue as a disabled family! My boys are so excited. Think I might regret starting Christmas so early!
Mandy posted an update 6 months, 3 weeks ago

Can’t believe it’s only 8 weeks this Sunday to Christmas! Does anyone have any nice suggestions for presents?
We are going to try to get more soft-play bits for Jacob, but very interested in other ideas?
- Debra replied 6 months, 2 weeks ago
  
  Hi Mandy,
  
  Not knowing Jacob I don’t know if this is his ”cup of tea” but I have been on the lookout for a bubble tube for my daughter Olivia that doesn’t bankrupt me! I came across this…
  
  http://www.argos.co.uk/static/Product/partNumber/4321125/Trail/searchtext%3EBUBBLE+FISH.htm
  
  Its really very nice and at that price you cant argue. We really…[Read more]
Mandy posted an update 7 months, 2 weeks ago

Off to the Evelina on Thursday to see the wonderful Charlie Fairhurst. Jacob is having more Botox treatment to relax his legs so they don’t cross so tightly, and his left thumb to help him use his hand better.
Mandy posted an update 7 months, 2 weeks ago

Hello all, just had an email about the CBeebies live tour. http://www.ticketmaster.co.uk/CBeebies-Live-tickets/artist/30109?dcc&dma_id=
Mandy posted an update: 9 months, 3 weeks ago

We took Jacob to see an Ear, Nose & Throat doctor on Wednesday last week. Jacob has been doing this funny snoring noise both day & night and we wanted to know why. He put an endoscope type piece of equipment up his nose and down his throat to see if the problem was his voice box. Jacob’s throat muscles have relaxed a little and the vibrating…[Read more]
Mandy posted an update: 10 months, 2 weeks ago

For all those ”In The Night Garden” fans out there…..http://www.nightgardenlive.com/bewl/index.html
At Bewl Water in Tonbridge Wells from 20th Aug – 3rd Sept
Mandy posted an update: 10 months, 4 weeks ago

To all Mr Tumble fans.
Justin Live is going to be at Bluewater shopping centre on Saturday 2nd and Sunday 3rd July. Tickets from £15 each. Show lasts an hour and a half, with a 15 min interval, and there are shows at 10.30am and 4pm. Its an outdoor event with no cover, and the show goes on no matter the weather conditions. Seating is…[Read more]
Mandy commented on the blog post Holiday / Shortbreaks Category 12 months ago

We are going on a short camping trip next week. I thnk I’ll write a check list, so I don’t forget anything the Jacob might need. I think it’s going to be a long list!
Mandy commented on the blog post General Support Category 12 months ago

Think we might need bigger swimming nappies soon. Does anybody know where to get any?
Mandy commented on the blog post Feeding Category 12 months ago

Jacob was able to get into a swimming pool this week. His tummy is all healed at last. He loved it!
Mandy commented on the blog post Feeding Category 1 year, 1 month ago

Jacob is now on a liquid feed called Nutrini. He has two types, one that delivers 1 calorie for every ml of liquid, and another for over night, that is higher energy with added fibre. To achieve 500 calories, he has 330ml. The feed rate is set overnight to 33ml/hr to deliver the total over [...]
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