Featured

What not to say to the parent of a child with special education needs and disability PLUS how to rephrase

Knowing what to say in situations you're unfamiliar with are difficult. Heres 5 things not to say when speaking to the parent or carer of a child with special educational needs and disability. A child with complex medical needs is a sensitive subject, here's how to form a good relationship with basic questions rephrased to gain understanding without offending or causing more upset.

Featured

Hospital, home or hospice?

How did we get to a point we're visiting a hospice? What does that mean? Is Jaxon okay? Jaxons diagnosis has not changed. His prognosis is still unknown. His syndromes affect his quality of life hugely; he is fed with a feeding tube, has multiple medications throughout the day, has numerous appointments a week. His …

Continue reading Hospital, home or hospice?

Featured

Mamas going back to school!

My blogging has dipped considerably since leaving hospital for a multitude of reasons; settling in at home, getting organised with carers, a holiday (I still can't believe we made it!) and trying to figure out how the hell I'm going to get my degree done. Mamas going back to school! A few weeks ago I …

Continue reading Mamas going back to school!

Featured

Genetic Diagnosis #2: Bartters Syndrome

I missed a call from the geneticist. I kicked myself when I listened to the voicemail asking me to call back knowing they'd have left the office by now. Jaxons geneticist had recently sent more bloods to test for Bartters Syndrome. If you don't know the back story to this, he struggles significantly to maintain …

Continue reading Genetic Diagnosis #2: Bartters Syndrome

Featured

The latest milestone: The High Dependancy Unit.

Sigh with me guys. Another first for Jaxon. Not sitting up, not 'mama', not dipping his toes in the sea. Oh no, Jaxon does not do normal milestones. This milestone was *drumroll please*... the high dependency unit (HDU). The calm before the storm Following his operation that appeared to go so well on Friday 5th …

Continue reading The latest milestone: The High Dependancy Unit.

Featured

Catch up with Jaxon: Carers, bladder retention, back to the operating theatre..

As I sit at my sons bedside in Leicesters Glenfield Hospital as he sleeps peacefully, I'm overwhelmed with Deja Vu. However, its been two months since the operation that failed us, twice now. I don't have time to recap as there's a few bits during the interim I want to update you on, before returning …

Continue reading Catch up with Jaxon: Carers, bladder retention, back to the operating theatre..

Featured

5 Ways Parenting a Special Needs Baby Changes Your Life: Chromosome Disorder Awareness Week

First things first, I really wanted to be sharing a positive post. All I ever want is to ooze positive, happy vibes. But even those with millions in the bank and a happy home have bad days. I've had more than my fair share of tough weeks recently and that's down to my sons rare diagnosis …

Continue reading 5 Ways Parenting a Special Needs Baby Changes Your Life: Chromosome Disorder Awareness Week

Featured

Allow me to reintroduce Jaxon: A summary of Jaxons diagnosis’ and how they affect him currently

Hello, If you're new to my blog, it can look a little overwhelming. If you've been following from the beginning, it can still be a little overwhelming. A lot has happened in the last 8-9 months and I write what we experience, as we experience it. This means each blog has been about something new. …

Continue reading Allow me to reintroduce Jaxon: A summary of Jaxons diagnosis’ and how they affect him currently

Featured

Catch 22: The lose-lose situation

So we're reaching 4 months in hospital. Yes, I sighed as I wrote that. It's been eventful, it's been scary, it's been frustrating, it's drraagged. It sounds like a ride at Alton Towers right? You know, the one you think you're going to die on. On the bright side, Jaxon has progressed so much in …

Continue reading Catch 22: The lose-lose situation

Featured

Maternal Mental Health Week: 5 tips to keep you YOU after having a baby

So I saw this week is maternal mental health week, it's all over Twitter and the gram with the hashtag #MaternalMHweek or #MaternalMentalHealthWeek (check it out). It surprised me to see so many women openly speaking about their experience of post natal depression or just general low mood following the birth of their baby. It's …

Continue reading Maternal Mental Health Week: 5 tips to keep you YOU after having a baby

Featured

What is a Discharge Planning Meeting and how did Jaxons go?

A 'discharge planning meeting', commonly abbreviated to a DPM, is a gathering of as many professionals involved in a patients care to discuss a safe transition from hospital to home. Today we had Jaxons second DPM. We were back in hospital just two days after the last one, until now. Who attended: •Lead Paediatric Neurodisability …

Continue reading What is a Discharge Planning Meeting and how did Jaxons go?

Featured

Meet the geneticist: Are my future babies at risk and more than I bargained for..

Ok, so I'm not actually going to post a pic of his geneticist, or give any names but this blog will give you a little background on Jaxons geneticist, what he does, and our most recent appointment with him which was this morning (Tuesday 1st May 2018). I originally met the genetics doctor in November …

Continue reading Meet the geneticist: Are my future babies at risk and more than I bargained for..

Featured

Pre-Op thoughts 💭

I've been anticipating this operation for a long time. I've wanted it for Jaxon. I've pushed for it based on the intent to improve his quality of life. It's horrible to see your baby retching, heaving, vomiting their entire feeds and then falling asleep from exhaustion and being weak due to the lack of nutrients. …

Continue reading Pre-Op thoughts 💭

Featured

Two months in hospital: the low down on the upcoming operation and my babys big heart.

Getting on the blogs this week aren't I! It seems to be a recurring theme that I lay low on the blogs whilst it's all crazy and then as the crazy gets extreme I blunt out the past few months before anything else can happen. It just my life at the moment! As I ended …

Continue reading Two months in hospital: the low down on the upcoming operation and my babys big heart.

Featured

Great Ormond Street: Round 1

This blog post is all about my first experience visiting Great Ormond Street Hospital, for my (at the time) 5 month old son, as an outpatient for his heart problems. I take you through my thoughts, feelings, questions and anticipations before, during and after our appointment. PRE GOSH Jaxon has had appointments with a specialist …

Continue reading Great Ormond Street: Round 1

Featured

Happy Valentines: Make Love, Not Babies (unless you want to, then go ahead skip this blog!)

Those posts "everyone is having babies and I'm over here like.. *insert current situation (options include swaddling a bottle of alcohol, taking flights or enjoy sleep)*" used to be me! Well if you want to keep that freedom, or if you're loving motherhood but don't want five under 5's (exaggeration I know), you're going to …

Continue reading Happy Valentines: Make Love, Not Babies (unless you want to, then go ahead skip this blog!)

Featured

The Pros and Cons of tube feeding. Yes there are PROS!

Instagram followers, Facebook friends, random people on the bus..everyone has seen me tube feeding my son. I haven't hid it, I've haven't not posted his beautiful face because there's a tube stuck to it. I haven't saved feeding times for private spaces away from prying eyes. I'm a loud and proud mama to a tubie! …

Continue reading The Pros and Cons of tube feeding. Yes there are PROS!

Two years of loving you

A letter from a mother to her son reflecting as he celebrates his second birthday after they didn't now if he would make it to his first.

Advertisements

The (limited) practical, financial and emotional help available to parent carers in the UK – for Carers Week 2019

For Carers Awareness Week 2019 I made it my task to dig deep and try to find what support is available to help us care for our unpaid carers. You know, those people so filled with love and compassion that they save the NHS £132 billion a year according to a recent study by Carers …

Continue reading The (limited) practical, financial and emotional help available to parent carers in the UK – for Carers Week 2019

How to travel with a medically complex tube fed baby. You can do it!

https://www.youtube.com/watch?v=TktQEy_fWd4 Just last week me and my 18 month old son Jaxon return from our second holiday together in the past 6 months since he was discharged from a long stay in hospital. I took on the challenge despite his around the clock feed and medications via a feeding tube and his abundance of medical …

Continue reading How to travel with a medically complex tube fed baby. You can do it!