Today is Rare Disease Day!



When Nolas' seizure activity had just begun (November 2017)



Until January this year I'd not heard of  Rare Disease Day. I say I'd not heard of it but what I'm sure I mean is that it has probably cropped up on one of my social media feeds at some point but I'd not really taken much notice because it didn't affect me. As selfish as it sounds that is likely to be the honest truth.

 

However this year it does affect me, it affects us as a family. Nola has a rare condition, something that will be with her for life, something that we're still getting our heads round.

 At this point in time we have no idea to the extent she will be affected. She could have a poorer quality of life or she could lead a near to normal life, only time will tell with her rare condition.

What we do know is that she'll probably be on medication for life to help control seizures that are caused by multiple growths in and on her brain. These will need monitoring and possibly in the future two will need some sort of intervention. That is just one of the aspects of the rare condition, that I haven't named yet because we are still waiting for genetic blood tests to confirm it.

 

Rare Disease Day takes place on the last day of February every year. Did you know that 1 in 17 people in the UK have a rare disease? Not as rare as you may think but there are thousands of rare diseases, most are not curable. So the aim of the day is to raise awareness of rare diseases to make the public more aware of the challenges some people face and encourage more research.

 

I will always remember Rare Disease Day now. Nola is my 1 in 17.

 

 

Cuddledry Towel REVIEW

Back in January we were kindly sent an original cuddledry towel in oatmeal and white. Little Miss Nola has loved bath time pretty much since her first one, she would scream getting undressed for her bath and then stop as soon as she was placed in the water!

Nola in one of her early baths

However, when it was time to come out she would again scream the place down, whilst I was in a frantic rush to get her on to the towel, all wrapped up and cosy. It would usually take her a little while to calm down too.



This is where the cuddledry towel has been a total game changer at bath times. Its' genius, hands free, multi award winning design enables me to place Nola directly on my chest and wrap her in the towel quickly. This means she's kept cosy and warm which is something I particularly worried about in the early days. It also means I don't get wet!


First bath with big bro!

Apart from the first time we used it, I can honestly say there have been no tears at all after bath time. Nola loves cuddles and now I'm able to cuddle her straight after a bath without getting soaked! I'm certain she feels secure being cuddled as soon as she comes out which has made bath time a much more relaxing experience for everyone.
The towel is made from 'natural bamboo fibre' and 'unbleached cotton' which is super soft and very absorbent, meaning I can 'cuddle-dry' her.

The original cuddledry is available in a range of different colours and there is also a range of other fantastic products on the website including toddler towels and the new 'Baby & Me Wash Bag'.

I highly recommend the cuddledry for stress free bath times with your new baby or if your looking to buy a baby gift this is a great one! You can buy it from the cuddledry website as well as other retailers such as Boots and John Lewis.

 

I'm linking this post up with Jenny's Bumps & Babies linky!

 

 

*I was sent the item to review but all opinions are my own

5 Month Update

General/milestones

I said it with your big brother, and I'm sure I'll continue to say it but I just don't know where the time goes, I can't believe you are 5 months already!!!
At present your seizures are under control (high five!!!), since the last update you've had one ambulance ride to hospital, your third lot of immunisations and an eye clinic appointment!
I'm convinced your seizure activity changed each time you had a round of immunisations, a week or so after the first set you experienced seizures for just over a week and then they stopped. A couple of days after the second set you began to have the infantile spasms, followed a few days later with another type of seizure. Then the day after your third set you stopped having any spasms. Coincidence I'd just increased the dose again? I'm not certain nor am I convinced but fantastic news  that the spasms are currently at bay! But before that last set you were a bit poorly.
 After the first and third set of jabs parents are currently advised to give their babies three doses of paracetamol to help prevent a temperature. Having the combined jabs, including the one for meningitis means you were more likely to get a temperature. I gave you two doses but because you'd been sick in the evening and I was already loading you with your anti epileptic medicine I didn't want to go over board you and give you paracetamol whilst your temperature was normal. That was a mistake!! I woke up about 4am to hear you chomping on your hand, which was unusual for you as after going several hours through the night without a bottle, you'd normally be screaming! I felt your head and you seemed to be on the warm side but still took a bottle and drank it all. I then checked you with the thermometer and your temperature was on the high side. So I gave you  some paracetamol which you vomited back straight away so I didn't finish the dose. You then had a long, nasty set of spasms so I rang 111 for some advice as I was worried. They dispatched an ambulance based on the information I gave them.

This pramsuit makes me laugh because it makes you look huge!!!

When they arrived the paramedics checked you over, as your temperature was still high and your heart rate was out of the normal range they took us to hospital. By the time you were checked in A&E and again on the children's ward everything was back to normal, thankfully. After a couple of hours we were sent home, with the overall medical consensus that you had a reaction to the immunisations.
  Apart from that little drama you had your eyes checked and we found out you have growths behind your left eye. At the moment they don't seem to be causing you any problems, time will tell but fingers crossed they won't affect your vision.
Development wise, you can see that having the seizures under control is making a change to your progression. You are more awake, I guess because there are no seizures to make you tired and your body has got used to the medicine. Being awake for longer means more time to interact, you are smiling more and you have giggled a couple of times which is the best sound, it melts my heart! You babble a lot and over the last couple of weeks you began a high pitched shriek/cry/shout and use it when you're both happy and upset. You still only give eye contact on your terms, when you're being held you usually avoid eye contact but will look at people when you are lying down.
This month you had your first bath with your big brother, you thoroughly enjoyed it but I didn't as I was worried you were going to slip out of my grip! You are still in size 3 nappies. Overall you seem to be on the whole just a lot more chilled out, you really like your oball and have started to grip hold of it. You absolutely love chomping on your hands and fingers and will stare at them for ages!

Enjoying your oball

Feeding

You appetite still hasn't changed, you would drink milk continuously if you could!. You were still having 5oz bottles, five times a day, sometimes alternated with a 6oz bottle but now you are on five 6oz bottles. If you do wake during the night I will give you less to help you go back to sleep.

Absolutely love looking/chomping/sucking your hands and fingers

Sleeping

You are continuing to sleep through most nights from anything between 9pm-11pm usually through until 7:30am-8.30am. You have slept through more this month but there are still times you have woken up.

 

Weight

I haven't had you weighed since the last update.

Clothes

Clothes wise you are mostly wearing 3-6 month clothes with some exception here and there. Such as a newborn size cardigan!

More Nicknames

I'm still coming out with random nicknames.  Here are last months and below there's a few more!     

26. Baboo

27. Baboose

28. Baboosey

29. RoRo Beans

 

    

Your Likes

• You still love cuddles especially if you're tired
• You still  love your bottles
• Bath time continues to be a favourite
• You still enjoy getting out
•  You still like watching and listening to Eliot
• The dummy is still soothing, mainly when you're tired.

Your Dislikes

• Eliot being 'too cuddly' or on the rough side
• Still having clothes put on/taken off if you are not in the mood
• Still...Being disturbed when you are comfy

It's been a more positive update Nola,  I hope next month there are more positives to write about!

xxx

 

I've linked this post up with Jenny's 'Bumps & Babies' linky!

 

 

The Red Lion, A Sizzling Pub & Grill-REVIEW

 A few weeks ago I received an email asking me if I'd like to review the recently refurbished Red Lion, part of  'The Sizzling Pubs' group, in Bedford. As one of my favourite things to do is to eat out, I of course said yes!

We were booked in for 5pm one Friday evening and in the meantime I browsed the online menus. I was impressed at the selection of foods and the amount of offers that were available, such as kids eat for £1 and skillet and a drink for £5.99.

Eliot had already chosen exactly what he was going to eat when I looked at the menus online and I had an idea of what I might order but wanted to have another good look at the menu when we were there.

 





On arrival we were shown to our table, which had a nice view of the sparkly lights in the garden. With the 'Sizzling Pubs' you usually order at the bar once you have decided what you are eating, don't forget your table number!

We went for an offer of  mix and matching three starters to share,  choosing cheese and bacon crispy potato skins, the new chicken madras pakora bites and new garlic prawns.

I said 'to share' but Eliot and I don't eat prawns so the other half had them to himself and we shared the rest. I really enjoyed both the other starters and was pleasantly surprised with the chicken madras pakora bites. I love Indian food but usually find if I buy an Indian dish from the supermarket or order one in a non Indian restaurant, they just don't taste authentic and have a certain flavour. But I didn't find that with these pakora bites and loved the mint sour cream they were served with. It was a generous serving too, if you weren't too hungry and after something light this would be a good option!

The potato skins were nice, crispy and full of flavour. The other half enjoyed his garlic prawns too.

 For his main Eliot chose the 'Mini Mixed Grill' from the over 5's section of the menu. They also have dishes recommended for under 5's. Eliot chose this because he's a bit of an egg lover but it also came with half a chicken breast, sausage and a burger. He then chose garlic bread from the 'side' options and corn on the cob from the 'veg' section. There is a good selection of kids meals, sides and veg which should meet the needs of most fussy eaters. The kids menu is great value too with the main, dessert an drink for £4.99. Even better, if you visit between 3-7pm Monday-Friday, kids eat for £1 when an adult has a main meal!

 The other half went for the rump steak platter which was two steaks served with onions, mushrooms, onion rings, mushroom and chips were chosen as a side. This was a big portion of steak but the other half enjoyed it. The steak was served as requested, medium rare.

 I opted for one of the newer options from the menu, 'The Tennessee' loaded steak which consisted of a 8oz sirloin steak covered in a bourbon glaze, streaky bacon and melted cheese. It was served with onions, a grilled mushroom and tomato, onion rings and chips. I'm one of those people that asks for my steak 'well done' which it mostly was, there were a few pinky parts but not enough for me to ask for it to be cooked a bit more. I'm not a fan of bourbon as a tipple but I really like it as a glaze it's so tasty! I would definitely have this dish again!

 

Dessert was something Eliot didn't stop mentioning throughout our dinner! Again as we'd looked at the dessert menu prior to coming, Eliot had decided he was having the 'Build Your Own Sundae'. I think it is a super choice for a kids menu, it makes pudding even more fun and has one of their five a day included. Eliot certainly enjoyed building his sundae with the strawberries, chocolate buttons (and they were Cadbury buttons, hurrah!) chocolate pieces and chocolate sauce.

 I am probably more of a 'dessert' person than a 'starter person' so found it difficult to make a choice! I was torn between the treacle sponge and the new black forest sundae. In the end went for the sundae, which included vanilla ice cream, black cherry compote, brownie pieces and cream. It was so good!

 The OH went with the Mint Aero Sundae, which came with vanilla ice cream, brownie pieces, mint aero bubbles and cream. As you can see this looked pretty good too!

 

Our thoughts overall...

 

The food

There is good range of food options available that cater for different tastes and needs, including one or two vegan options which I know is growing. Prices are reasonable and extremely good if you take advantage of one of the offers which are super value! You can even get a fiver off your bill if you sign up.

I was impressed with the options on the kids menu, plenty to choose from and as most of us parents know, children can be fussy! What I liked most was you choose your main then get to choose your two sides which again is helpful to those of with fussy eaters! I also liked the fact there were options for under and over 5's. 

All of the food ordered was a good standard and we enjoyed everything we ordered.

 

The service

As mentioned above, you decide what your eating then order at the bar with your table number. We were served our meal by a very friendly and pleasant waiter who was also good with Eliot. I'm sure you know what I mean if you're a parent out dining with the family and there's that waiter/waitress that make your outing more relaxed and enjoyable. They take time, even if it's only a few seconds to interact with children and make the experience even better. That's what we had with out waiter!

 

 

The Atmosphere

The Red Lion has recently been refurbished but I can't compare its current look to what it was like before as this was my first visit. However you could see lots of things were new. I loved the different colours of paint on our table which had a quirky effect!

As it was a Friday evening, there was lots of hubbub in the bar with people having after work drinks. Where we were seated there was lots of other families too which made me feel more comfortable and at ease. There was a warm, cozy feel to the environment which was welcoming

In the bar area I noticed sign which said children were welcome to eat in the bar area until 5pm and elsewhere there was a sign stating children were welcome in the restaurant area until 9pm. I'm 50/50 on this one as there have been times we've needed to eat late, perhaps if  we've travelled away on a break. If it was the only option around that could be a bit of a problem!

 On the other hand 9pm is late for little ones and I know there are many people who do not want children around them when they're out for dinner, regardless of the time. I've never been one of those people even before having children so if it is an establishment offering a kids menu I'm not sure there should be a limit on what time they can be in the restaurant until.

 

Would we go back?

Yes I would certainly go back to The Red Lion and would try other 'Sizzling Pub' branches too. The food is good value for what you get and there are plenty of offers to help you ensure you don't break your budget!

 

*We received a complimentary meal in exchange for a review, all thoughts & opinions are my own