First appointment done – Is it Neurofibromatosis?

At long last Master A went to see the paediatrician last Tuesday. Sorry for the lack of update but I have been busy. This appointment was to see whether Master A has got neurofibromatosis. We still don’t know.

Yes he has cafe au lait marks. He has six, maybe seven. According to the paediatrician, it is a matter of waiting and see whether new signs appear. Last week I was content with this. I was happy that at least he was in the system. Now I am not. I am far from content. We have to wait six months. I can’t wait that long to find out whether he has it or not. I want to either deal with it if he has it or feel really really lucky that he doesn’t have it.

Why would I be lucky if he doesn’t have it? Well I have read that 95% of children that have cafe au lait marks have neurofibromatosis. With that knowledge how can I just be happy with waiting.

I phoned an advisor from The Neuro Foundation yesterday. There is a test they can do to see if Master A does have neurofibromatosis or not. I wish he could have that test done now. Right now. I really want a referral to the genetics clinic in Manchester. Then hopefully everything will be all right. I think I can cope with a diagnosis and I would be over the moon if Master A doesn’t have it. The not knowing is the worst thing in the world for me right now.

I want to phone the hospital in Manchester but I know that they will need a referral from the doctor to see me but I have to wait for the report from the paediatrican. I really can’t wait any more, I want to know whether there is something wrong with my lovely little boy.

He went to Diddi Dance today and he was not happy at all. I don’t know what was wrong with him at all. He can’t tell me, he cannot talk. He seemed so vulnerable and scared.

I will love my boy regardless and I only want whats best for him, for Miss A, my OH….and for me. The not knowing what is wrong is not doing me any favours at all. Six months is such a long time to wait.

Is it Neurofibromatosis? Appointment next week

Master A has his appointment next week to see whether he has something wrong with him. I have posted about it here.

I am scared. Sometimes I feel as if I can’t cope. I have cried a lot. I don’t want him to have it. I know it could be worse. But I wish that nothing is wrong with him. That may be selfish, but I think it is a normal feeling, isn’t it? I have read that 95% of children with cafe au lait marks are likely to have neurofibromatosis. I hope that he is in the 5% but that is a scary statistic. It is from a credible source.

I have had two months to deal with the fact that my son could have neurofibromatosis but I can’t seem to deal with it very well. I don’t think the children know how I feel. My other half does. You do now. But I can’t seem to talk about it. I just have to wait until Tuesday next week to talk about my concerns and to see if the paediatrician thinks that Master A does have NF1 or perhaps something else.

Master A still isn’t talking well at all. He also has a few ‘quirks’. He still puts his hands over his ears when something new happens. He doesn’t like walking much these days. He keeps on wanting to be picked up. So I am still having to rely on the pushchair as I can’t carry him for long, he is too much for my dodgy back.

This is one of the reasons why I haven’t been blogging for ages. I have also broke my toe. Pain relief has been making me so tired, although I think it is the stress of it all to be honest.

Roll on Tuesday. I think I will deal with it a lot easier if we either had a diagnosis or better still everything is OK.

Update: Back to school tomorrow – Summer holidays are over

Miss A has had a good Summer holiday and she is back to school tomorrow. Year 2 – how did that happen!

I am sad she is going back, very sad. I love spending time with her and her brother together.

Time has flown by and it has been fun – mostly. Lots of socialising and visiting family and friends. Not much time for blogging. I have been too exhausted to be honest by the end of the day. My health has been up and down throughout the holiday and so have the children’s. Nothing serious just bugs.

Master A has been given a date for his paediatician appointment, in exactly a month’s time. We have waited so long already. I haven’t been coping with what could be wrong with him. I told the doctor this on Friday, after realising that I can’t go on worrying like this any more. I need to know what is wrong with him, it is hurting me so much. It is affecting day to day life a little. Probably why I am falling asleep early every night. They are going to try and get an earlier appointment for him, I will find out before Friday if they are successful.

I will now have time to concentrate on my blog when Master A has his rest time. Even though he has stopped his naps, I have quiet time with him when he either does crafting/playdoh or something or he watches a film. Just to give me a little bit of time out. Perhaps I will find out if I can get an appointment early this week and then I will know I have done all that I can to get Master A checked out. I know that it is not life threatening but it is certainly life changing.

Miss A hasn’t been affected by what is going on with Master A. That is good.

We have had a good Summer holiday, that is the main thing.

I just hope now that I have told the doctors how I feel, we get things sorted soon.


Peppa Pig Enchanting Castle review

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Miss A and Master A have been brought up with Peppa Pig. Mostly on television but they have some toys. When we were sent the Peppa Pig Enchanting Castle, both were rather happy!

The Peppa Pig Enchanting Castle is a fantastic toy that closes when not in use. Fantastic! It comes with one Peppa character. I am sad it didn’t come with George too so they could play together but…we have him, along with several other characters already. Miss A got out all of her Peppa Pig stuff while playing with the Enchanting Castle so bear that in mind when watching the video and looking at the photos.

They spent so long playing with the castle…and the other toys.

Most of the time Master A plays with his toys in silence so this video is lovely for me to watch so I am sharing it..I think he is saying “Addy” for Daddy Pig.

This toy was a huge success. It was the first time that I saw Master A properly play with toys and pretending to make the characters walk, get in bed etc.

There is also a bed, steps and a mirror included. The mirror turns which makes it even more fun! The door to the castle also revolves too.

The Peppa Pig Enchanting Castle costs £24.99. It is worth it though as it is a toy that can be added to with the other Peppa Pig play sets.

A fantastic toy that has made both children, especially Master A very happy! I am very thankful for being sent this toy as it is a toy that has made Master A start to progress with a few things. It is a toy that can be shared by the both of them too – fantastic!

Available at Smyths Toys

5 Minute Fun review

I would love to make you all aware of the fantastic 5 Minute Fun email service that I really love. I often wonder what to do with the children, especially Master A. What with Master A not talking, he needs so much motivation and stimulation to get anything out of his mouth. This did make it hard to do the given activities so I did have to alter some a little bit as he isn’t talking but I am sure I am allowed! In terms of Miss A, she really wanted to join in and so she did. Both have been poorly so the moving challenges were a no go really. However that doesn’t take away how awesome this concept is and I will definitely be continuing on with it for a long time to come.

I must admit I did most of the activities mainly with Miss A but Master A was there throughout and was included and as said I did adapt them to make him feel more included.

The first day:

Sort out the recycling together. Can your little one tell what things are made from and sort them into different piles?

Master A didn’t do this as Miss A was so keen on doing it. She knew what each of the items were made out of. We have a recycling drawer where the paper and card are separated from the rest of the recycling so Miss A found this so much fun! We have done this kind of thing before.

The second day:

Ask your little one to draw what they would like to dream about tonight!

Miss A loved this challenge – I forgot to take a photo of her drawing and I can’t find it now. I will see if I can find it and add it to the blog post. Master A did a drawing too. I don’t think he understood what I was asking him to do due to the lack of communication skills but the fact that he felt included was good. I won’t say what Miss A drew…once I add the photo, I would like you to guess what it is.

The third day:

Ask your little one to draw a picture of an imaginary creature. What colour will it be? What will its name be, and will it make a big roar?

A lot like the second challenge, same response. Photo to follow.

The fourth day:

Look out of the window together and see what you can spot. Ask your little one to find something green, something brown and something blue.

Master A couldn’t do this but at the end of the activity, I told him what the colours were of the things outside. Miss A loved this, even at six years old!

The fifth day:

Help your little one create a time-travelling wristband! Wrap card to fit around their wrist and stick on coloured paper to make buttons and a screen. Tell them to press a button and off they whoosh! Can they call you to tell you where they’ve gone?

Both loved doing this, they both have a good imagination and even Master A could pretend to travel back in time although I think he thought he was a superhero!

The sixth day:

Pretend your little one has a pet dinosaur. Is it big or small? Can it fly? What’s its name?

I did this with Master A only. Miss A was starting to get rather tired but I adapted this and basically asked Master A to pretend he was a dinosaur and asked him whether he was big or little. He got on his tip-toes so I assume he was big!

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Master A roaring like a big dinosaur!

The seventh day:

Take the size challenge! Can your little one point to 5 things that are bigger, smaller, taller and shorter than you are?

Definitely one for Miss A only. She is very good at knowing what is bigger, smaller, taller and shorter. Probably too good as she knows that I am bigger but shorter than Daddy!

To find out more about 5 minute fun then visit the website and sign up for the email service. I would recommend it!

5 Minute Fun can be found on Facebook, Twitter and Instagram

We are being sent a half year CBeebies Magazine subscription in return.