Thursday, 21 September 2017

Our story so far... #EctodermalDysplasia #JeansForGenes

Tomorrow it's Jeans for Genes Day and, around the same time each year, I reflect upon the impact a tiny faulty gene continues to have on our family's day-to-day lives. For those of you who don't know, I have a condition called Ectodermal Dysplasia (ED) as does my son, Theo. I have previously shared a little about the condition and my concern's for Theo's future here: Along Came Poppy: Word of the Week: Kindness 

I'd like to emphasise from the outset that I consider our family to be extremely lucky not to be more severely affected by Ectodermal Dysplasia. However, having reviewed last year's post, I now realise that in just over twelve months a lot has happened regarding Theo's condition and treatment. I hope that by sharing our personal experiences, we will raise awareness of ED and may even help other families looking for answers.

July 2016

Theo’s diagnosis has been confirmed through genetic testing. Although there was never really any doubt he had E.D. From birth he had constant issues with reflux and failed to gain weight. His teeth were late coming through and then, shortly before his first birthday, four little teeth appeared. I was absolutely delighted that he was finally getting some teeth but, at the same time, I was devastated by their pointy appearance.

Now at age 2, he has 5 little teeth and there is the possibility he won't get anymore. He has trouble chewing food, digestive issues and eczema. But, more importantly, he is a confident and extremely energetic little boy, who loves playing with other children. My fear is that when more children (and adults) start to make these comments, all that confidence and energy will be knocked out of him. I know it is my job to make him as resilient as possible but, at this stage, I’m not really sure where to start!


Update: September 2017

I'm delighted to confirm that a year on Theo remains a bundle of energy! He attends preschool and is a confident, chatty little three year old, who still adores playing with others. 

In relation to his health, he is under the care of a paediatrician. He still has digestive issues and is on a dairy, soya and banana free diet. He is due to see a dietitian next week. He continues to be troubled by eczema and has a dust mite allergy, which aggravates it. He currently has impaired hearing due to glue ear in both ears, which is having a slight impact upon the clarity of his speech. His hearing will be retested in due course and, in the meantime, I am looking into speech therapy. Over the summer he started to get nosebleeds, which now seem to have resolved. Theo's temperature, for the most part seems unaffected (even during the summer months), however when he is poorly it is very difficult to keep it under control.

The real developments this year involve Theo's dental treatment. He now has 7 teeth with an 8th on the way - hooray! He has had several appointments at the dental hospital and, on each occasion, he has been an absolute star! We have approached each trip as an adventure. He takes little toys; books about going to the dentist; and his tooth brush. In between trips to the dental hospital, he has routine check ups at the dentist and so is very accustomed to the dentist chair, which, by the way, also makes a great plane runway! So far he has had strip crowns* applied to two of his bottom teeth and a third tooth has been reshaped to avoid him puncturing his lip. He has not required any anaesthetic. We will know exactly how many more teeth he can expect to get when x-rays are carried out after he turns 4. Keep your fingers crossed for a few more!

Since my original post we have had zero, yes ZERO negative comments from others, which gives me so much hope for the future, as one of my main concerns was the potential for bullying. As for Theo, he is taking it all in his stride. Here he is giving "thumbs up" in the dentist's chair...


Thank you for taking the time to read our story so far. 
For more information on Ectodermal Dysplasia visit the Ectodermal Dysplasia Society website 
and to find out more about Jeans for Genes Day or to make a donation click here.

Kate and Theo xx


*Paediatric strip crowns are not like adult crowns. They are formed using a tiny plastic mould filled with a composite material. The mould is then placed over the existing tooth to improve the appearance.

Sunday, 17 September 2017

10 Budget Ways To Grow Your Child's Library



These days our bookshelves are overflowing with beautiful children's books but this has not always been the case. When I was pregnant with Mini Reviewer, Izzie, I started to look for ways I could build up a little collection of books for her but without spending a fortune. Here are my tried and tested ways to grow your child's library on a budget...

Saturday, 16 September 2017

Bath Time Adventures with Cocobubble - Review & Giveaway



Cocobubble is a family business based in South Wales that is reinventing bath time with a range of child friendly bath bombs, soap paints and mini character soaps. Cocobubble also sell innovative activity bundles, eco friendly toys and, yep you guessed it, a bath time book! 

The Magical Wood is described as a bath time adventure book. It is made using a flexible, waterproof material so it can get splashed or even be fully immersed in the tub. Cocobubble also sell The Magical Wood bath bundle, which can be used along with the book to promote imaginative play and storytelling. We thought this sounded such an amazing way to brighten up any bath time.

As the Mini Reviewers have mild eczema, we have to be quite careful what products we use on their skin. We were pleased to find out that Cocobubble products are not only made in the UK, they are 100% vegan and gentle on skin. They are made from many natural ingredients and are free from parabens, mineral oils, SLS, SLES and phlalates. So of course we were happy to try out some of their bath time range.*

Wednesday, 13 September 2017

Lollies Blog Tour:The Prince of Pants #Lollies2017

Nothing quite beats a book that gets you giggling, so we are delighted to be taking part in the LAUGH OUT LOUD 2017 Book Awards Blog Tour. The Lollies were created by Scholastic to celebrate the funniest books for children and are awarded in three categories: Best Laugh Out Loud Picture Book; Best Laugh Out Loud Book for 6-8s; and Best Laugh Out Loud Book for 9-13s. The winning books will be announced early next year and are decided by children's votes. To view the shortlisted books and to place your vote visit the Lollies website.

Today we are over the moon to be featuring a very special Q&A with award winning duo, Alan MacDonald and Sarah McIntyre, the author and illustrator of The Prince of Pants. The Prince of Pants has been nominated in the Best Laugh Out Loud Picture Book Category. It is a very colourful and funny book about Prince Pip, who just loves pants! However, it's his birthday and all his pants have disappeared! How will he be able to celebrate with no pants? Well, that would be telling but what we can say is there are lots of pants to spot throughout the book and a glow-in-the-dark surprise at the end, which is sure to get everyone laughing out loud! The Mini Reviewers, who are big fans of this book, had such fun coming up with some questions for Sarah and Alan and you can read their pants-tastic interviews below...


Saturday, 9 September 2017

Read with Lottie - Review & Giveaway

Lottie Dolls have been on our radar for a while now. We first came across Fossil Hunter Lottie in the shop at The Natural History Museum in London and loved the concept of dolls that are fun yet educational. Then we discovered that Puffin had released a series of books featuring Lottie, Finn and some of their friends. So, when we were asked to review Lottie Dolls, we happily agreed because we just couldn't wait to read with Lottie!


If you take a look at the full Lottie Doll collection you will see that there are boy and girl dolls, as well as dolls with different hair and eye colours and skin tones. There is also a whole range of different accessories, so your doll could be anything from a ballerina to a fossil hunter. He or she could go fishing, ride a scooter or even gaze at the stars. The vision behind the dolls is that childhood should be an inclusive place and Lottie Dolls are designed to empower children to be themselves. The tagline Be bold, be brave, be you! is therefore very fitting.

Friday, 1 September 2017

Books to Inspire: Meet Lucy and Jack

It has been quite a while since I wrote a Books to Inspire post but you cannot get more inspirational than the story behind the Meet Lucy and Jack series. Just over 12 months ago I reviewed a very special book called "H is for Haemodialysis" written for children whose families are affected by kidney disease. It was the debut picture book of Anita and Simon Howell, who had been inspired by their own experiences of dealing with kidney disease and the impact it had upon their own family life raising two young children. Simon himself suffers from kidney failure and receives dialysis. He is currently waiting for a second kidney transplant.