• #TBT to Feb 2018 of Nola with my mum and dad. I don’t know what I’d do without them. They help out so much when sh*t hits the fan with Nola, my mum has sat in hospital all day with me when Nola has been rushed in, my dad has brought us home at all hours of the day. They are just there when I need them, I need to show them more appreciation!💕#NolaBelle #grandparents #grandparentslove #beappreciative #familymatters #family #byyourside #parents #thisparentlife #honestparenting #snaphappybritmums
    41 4
    #TBT to Feb 2018 of Nola with my mum and dad. I don’t know what I’d do without them. They help out so much when sh*t hits the fan with Nola, my mum has sat in hospital all day with me when Nola has been rushed in, my dad has brought us home at all hours of the day. They are just there when I need them, I need to show them more appreciation!💕#NolaBelle #grandparents #grandparentslove #beappreciative #familymatters #family #byyourside #parents #thisparentlife #honestparenting #snaphappybritmums
  • A P P O I N T M E N T Yesterday we headed back to #addenbrookes for a meeting about Nola starting the #ketogenicdiet and possible enrolment to a study investigating the effectiveness of the diet in under twos. The only reason I wasn’t sure about the study was because each participant is randomly selected to go on to the keto diet or have another med added into the mix. I really didn’t want another medication given to Nola as they only have around a 1 in 20 chance of working, Nola could be that 1 in 20 but as chances are slim I didn’t want her exposed to yet another drug. I discussed this with her neuro and asked what the plan would be for Nola if she was randomised for the drug and not keto. He said he wouldn’t add a new med unless I wanted to try one and that one of her meds would be increased by 0.5ml which I’m happy to do. So I signed on the dotted line to give consent for Nola to enrol on the study, which we can decide to come out of at any point. Nola had baseline bloods taken and was very brave getting them done, not noticing the needle going in the first arm! This photo was after the numbing cream was put on various areas ready for the bloods to be taken. We had to wait for the cream to be effective so Nola had a ride on the rocking horse in the play area which she loved and was laughing and smiling. #bravebaby #NolasJourney #epilepsy #iamtsc #infantilespasms #keto #ketodiet #ketogenicdiet #epilepsywarrior #hospital #infantilespasmsawareness #infantilespasmswarrior #thisisus #thisparentlife #specialneedsparent #additionalneeds #cameramama #motherhoodunplugged #mumlife #motherhoodthroughinstagram #mumblog #momlife #momblog
    55 6
    A P P O I N T M E N T Yesterday we headed back to #addenbrookes for a meeting about Nola starting the #ketogenicdiet and possible enrolment to a study investigating the effectiveness of the diet in under twos. The only reason I wasn’t sure about the study was because each participant is randomly selected to go on to the keto diet or have another med added into the mix. I really didn’t want another medication given to Nola as they only have around a 1 in 20 chance of working, Nola could be that 1 in 20 but as chances are slim I didn’t want her exposed to yet another drug. I discussed this with her neuro and asked what the plan would be for Nola if she was randomised for the drug and not keto. He said he wouldn’t add a new med unless I wanted to try one and that one of her meds would be increased by 0.5ml which I’m happy to do. So I signed on the dotted line to give consent for Nola to enrol on the study, which we can decide to come out of at any point. Nola had baseline bloods taken and was very brave getting them done, not noticing the needle going in the first arm! This photo was after the numbing cream was put on various areas ready for the bloods to be taken. We had to wait for the cream to be effective so Nola had a ride on the rocking horse in the play area which she loved and was laughing and smiling. #bravebaby #NolasJourney #epilepsy #iamtsc #infantilespasms #keto #ketodiet #ketogenicdiet #epilepsywarrior #hospital #infantilespasmsawareness #infantilespasmswarrior #thisisus #thisparentlife #specialneedsparent #additionalneeds #cameramama #motherhoodunplugged #mumlife #motherhoodthroughinstagram #mumblog #momlife #momblog
  • F U C K S E I Z U R E S 😡 In angry mode at the moment, angry that my baby girl is in hospital yet again due to a status seizure. We’d nipped into London for an afternoon out, sat down in Starbucks when Nola began having a seizure. I had a feeling or an intuition it was going to happen. She had been a bit off since yesterday morning, snotty nose and not wanting to eat her lunch. Thankfully across the road from Starbucks was paediatric A&E so we just walked straight in. It was a good 20mins+ before any rescue meds were given. Buccal midazolam didn’t cut it so 10mins or so later she was given lorazepam. Which eventually settled things although I’m not 100% convinced she was completely out of a seizure because of how her eyes looked. The medical staff were ‘confident’ the seizure had stopped because her second lot of blood gases came back fine. Who knows? I know the professionals are not always right! She is currently snoozing after having an ok night but had a slightly raised temperature and fast heartbeat earlier. Fingers crossed 🤞🏻she can come home later today! #fuckseizures #fuckepilepsy #statusepilepticus #NolasJourney #iamtsc #tuberoussclerosis #tuberoussclerosiscomplex #baby #tuberoussclerosisawareness #epilepsywarrior #babygirl #epilepsyawareness #specialneeds #specialneedsparents #momblog #channelmumvillage #mumlife #honestparenting #mumblog
    75 50
    F U C K S E I Z U R E S 😡 In angry mode at the moment, angry that my baby girl is in hospital yet again due to a status seizure. We’d nipped into London for an afternoon out, sat down in Starbucks when Nola began having a seizure. I had a feeling or an intuition it was going to happen. She had been a bit off since yesterday morning, snotty nose and not wanting to eat her lunch. Thankfully across the road from Starbucks was paediatric A&E so we just walked straight in. It was a good 20mins+ before any rescue meds were given. Buccal midazolam didn’t cut it so 10mins or so later she was given lorazepam. Which eventually settled things although I’m not 100% convinced she was completely out of a seizure because of how her eyes looked. The medical staff were ‘confident’ the seizure had stopped because her second lot of blood gases came back fine. Who knows? I know the professionals are not always right! She is currently snoozing after having an ok night but had a slightly raised temperature and fast heartbeat earlier. Fingers crossed 🤞🏻she can come home later today! #fuckseizures #fuckepilepsy #statusepilepticus #NolasJourney #iamtsc #tuberoussclerosis #tuberoussclerosiscomplex #baby #tuberoussclerosisawareness #epilepsywarrior #babygirl #epilepsyawareness #specialneeds #specialneedsparents #momblog #channelmumvillage #mumlife #honestparenting #mumblog
  • C O M I C R E L I E F 2 0 1 9 The eldest has gone to school in red, including his hair as his school are having a ‘crazy hair’ day to raise money. #comicrelief2019 #comicrelief #allinred #EliotJude #igkids #son #boy #instakids #kidstagram #fun #watchthemgrow #letthembelittle #littlefierceones #childhood #schooldays #fivenager #mumlife #littlesnippetsofus #mumblog #motherhoodunplugged #igers #motherhoodthroughinstagram #snaphappybritmums #momlife #momblog #thisparentlife
    55 3
    C O M I C R E L I E F 2 0 1 9 The eldest has gone to school in red, including his hair as his school are having a ‘crazy hair’ day to raise money. #comicrelief2019 #comicrelief #allinred #EliotJude #igkids #son #boy #instakids #kidstagram #fun #watchthemgrow #letthembelittle #littlefierceones #childhood #schooldays #fivenager #mumlife #littlesnippetsofus #mumblog #motherhoodunplugged #igers #motherhoodthroughinstagram #snaphappybritmums #momlife #momblog #thisparentlife
  • K E T O Next week Nola goes back to Addenbrookes for a ketogenic diet assessment with her neuro, a dietitian and an epilepsy nurse. I have deliberately avoided reading up on the keto diet. I know it’s hard at first, I know it’s strict, I know everything is calculated to the ‘gram’ and every morsel of food should be eaten. So it does worry me because Nola can be fussy or not finish her food, she can’t do that on this diet. The one thing I have re-read is this ‘classical ketogenic diet’ leaflet we were given last summer. This morning some more info arrived along with paperwork I need to fill out before the appointment, so going to get that done whilst madam naps! #NolasJourney #epilepsy #iamtdc #infantilespasms #keto #ketodiet #ketogenicdiet #epilepsywarrior #infantilespasmsawareness #infantilespasmswarrior #thisisus #thisparentlife #specialneedsparent #additionalneeds #cameramama #motherhoodunplugged #mumlife #motherhoodthroughinstagram #mumblog #momlife #momblog #beaware
    57 8
    K E T O Next week Nola goes back to Addenbrookes for a ketogenic diet assessment with her neuro, a dietitian and an epilepsy nurse. I have deliberately avoided reading up on the keto diet. I know it’s hard at first, I know it’s strict, I know everything is calculated to the ‘gram’ and every morsel of food should be eaten. So it does worry me because Nola can be fussy or not finish her food, she can’t do that on this diet. The one thing I have re-read is this ‘classical ketogenic diet’ leaflet we were given last summer. This morning some more info arrived along with paperwork I need to fill out before the appointment, so going to get that done whilst madam naps! #NolasJourney #epilepsy #iamtdc #infantilespasms #keto #ketodiet #ketogenicdiet #epilepsywarrior #infantilespasmsawareness #infantilespasmswarrior #thisisus #thisparentlife #specialneedsparent #additionalneeds #cameramama #motherhoodunplugged #mumlife #motherhoodthroughinstagram #mumblog #momlife #momblog #beaware
  • T A N T R U M S Last night the fivenager had the biggest meltdown I’ve seen in a long time. He was so angry and upset basically because he wanted me to read a story which I had been but he wasn’t listening. He was messing with Nola or the book he was going to read himself, so after a few warnings I told him I wouldn’t be reading the rest as he was not listening. Then BOOM 💥 he went from 0-100 in seconds. He was over tired which was part of the epic meltdown for sure. At one point he said ‘you never play with me’ which pulled at the old heart strings making me feel guilty. I replied I did and reminded him about sitting down with Nola whilst he played with his train track. But I didn’t really join in with the playing as I was trying to prevent Nola from pulling everything apart and attempting to eat it! So I have promised him I will sit down and play with him properly after school today, just me and him. #mumguilt #tantrum #meltdown #fivenager #EliotJude #kidslife #igkids #instakids #kidstagram #littlefierceones #letthembelittle #watchthemgrow #strongwilled #childhoodunplugged #mumlife #childhood #motherhoodunplugged #motherhoodthroughinstagram #momlife #momblog #mumblog #snaphappybritmums #parentlife
    53 3
    T A N T R U M S Last night the fivenager had the biggest meltdown I’ve seen in a long time. He was so angry and upset basically because he wanted me to read a story which I had been but he wasn’t listening. He was messing with Nola or the book he was going to read himself, so after a few warnings I told him I wouldn’t be reading the rest as he was not listening. Then BOOM 💥 he went from 0-100 in seconds. He was over tired which was part of the epic meltdown for sure. At one point he said ‘you never play with me’ which pulled at the old heart strings making me feel guilty. I replied I did and reminded him about sitting down with Nola whilst he played with his train track. But I didn’t really join in with the playing as I was trying to prevent Nola from pulling everything apart and attempting to eat it! So I have promised him I will sit down and play with him properly after school today, just me and him. #mumguilt #tantrum #meltdown #fivenager #EliotJude #kidslife #igkids #instakids #kidstagram #littlefierceones #letthembelittle #watchthemgrow #strongwilled #childhoodunplugged #mumlife #childhood #motherhoodunplugged #motherhoodthroughinstagram #momlife #momblog #mumblog #snaphappybritmums #parentlife
  • Y E S T E R D A Y... We didn’t have any plans so I suggested a nearby aquatics shop which is a bit like a mini day out as there are four indoor ponds with koi carp fish that you are able to feed, a small (free👍🏻) soft play in the cafe and an aquarium of different fish🐠 for sale. We eventually got there after I put Nola’s new car seat in the car which she loved! Being sat higher meant she was able to look out the window! #siblings #siblinggoals #siblinglove #koicarp #NolaBelle #EliotJude #watchthemgrow #littlefierceones #letthembelittle #bigbroandlittlesis #themagicineveryday #mumlife #mumblog #momlife #thisparentlife #motherhoodthroughinstagram #motherhoodunplugged #childhoodunplugged #kidsofinsta #instakids #igkids #discoverunder5k #snaphappybritmums #daysout #cameramama #littlesnippetsofus
    67 6
    Y E S T E R D A Y... We didn’t have any plans so I suggested a nearby aquatics shop which is a bit like a mini day out as there are four indoor ponds with koi carp fish that you are able to feed, a small (free👍🏻) soft play in the cafe and an aquarium of different fish🐠 for sale. We eventually got there after I put Nola’s new car seat in the car which she loved! Being sat higher meant she was able to look out the window! #siblings #siblinggoals #siblinglove #koicarp #NolaBelle #EliotJude #watchthemgrow #littlefierceones #letthembelittle #bigbroandlittlesis #themagicineveryday #mumlife #mumblog #momlife #thisparentlife #motherhoodthroughinstagram #motherhoodunplugged #childhoodunplugged #kidsofinsta #instakids #igkids #discoverunder5k #snaphappybritmums #daysout #cameramama #littlesnippetsofus
  • Happy Saturday! Trying to come up with a plan of what to do today, although think this one is seeing his Nana. This was back in half term (which seems like ages ago) on a trip to London. If you weren’t aware already, Eliot absolutely loves tubes and trains. Just travelling on them all day would be a day out for him! He requests to ALWAYS sit in the front carriage (as it’s like he’s driving) and insists on watching them leave when we get off 🚞 #EliotJude #fiveyearsold #igkids #kidsofinsta #instagramkids #londonunderground #trainfan #motherhoodunplugged #instakids #childhoodcaptured #mumlife #childhoodunplugged #momlife #littlefierceones #watchthemgrow #letthembelittle #quirky #boylife #motherhoodthroughinstagram #ukparentbloggers #mumblog #littlesnippetsofus #momblog #snaphappybritmums #mumvillage
    64 2
    Happy Saturday! Trying to come up with a plan of what to do today, although think this one is seeing his Nana. This was back in half term (which seems like ages ago) on a trip to London. If you weren’t aware already, Eliot absolutely loves tubes and trains. Just travelling on them all day would be a day out for him! He requests to ALWAYS sit in the front carriage (as it’s like he’s driving) and insists on watching them leave when we get off 🚞 #EliotJude #fiveyearsold #igkids #kidsofinsta #instagramkids #londonunderground #trainfan #motherhoodunplugged #instakids #childhoodcaptured #mumlife #childhoodunplugged #momlife #littlefierceones #watchthemgrow #letthembelittle #quirky #boylife #motherhoodthroughinstagram #ukparentbloggers #mumblog #littlesnippetsofus #momblog #snaphappybritmums #mumvillage
  • W O R L D B O O K D A Y 2019 Eliot went to school in uniform today as they did not dress up this year but he did take in one of his favourite books to share. Nola did get in on the dressing up action tho, as a future Hogwarts student she thought she’d sport their Pre-school uniform 😂 Obvs she’s been ‘sorted’ into Gryffindor! #hogwarts #hogwartsstudent #hp #worldbookday #worldbookday2019 #NolaBelle #babywarrior #Gryffindor #motherhoodunplugged #iamtsc #motherhoodthroughinstagram #watchthemgrow #littlefierceones #themagicineveryday #babygirl #igbabies #mumblog #mumlife #momlife #momblog #childhood #childhoodunplugged #instababy #thisparentlife #discoverunder5k
    64 4
    W O R L D B O O K D A Y 2019 Eliot went to school in uniform today as they did not dress up this year but he did take in one of his favourite books to share. Nola did get in on the dressing up action tho, as a future Hogwarts student she thought she’d sport their Pre-school uniform 😂 Obvs she’s been ‘sorted’ into Gryffindor! #hogwarts #hogwartsstudent #hp #worldbookday #worldbookday2019 #NolaBelle #babywarrior #Gryffindor #motherhoodunplugged #iamtsc #motherhoodthroughinstagram #watchthemgrow #littlefierceones #themagicineveryday #babygirl #igbabies #mumblog #mumlife #momlife #momblog #childhood #childhoodunplugged #instababy #thisparentlife #discoverunder5k