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Blueberry Muffins

We have been very busy the past few weeks with the summer holidays but the other day I managed to scrape some time to make some tasty Blueberry muffins. I used a recipe from the “Hummingbird Bakery” cookbook which also contains my go to recipe for banana bread.

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The original recipe is for mixed berry muffins but I just used blueberries in mine.

The recipe makes 10-12 muffins

Ingredients

300g plain flour

155g caster sugar (plus extra for dusting)

1 tbsp baking powder

1/2 tsp bicarb of soda

1/4 tsp salt

250ml whole milk

2 large eggs

1 tsp vanilla essence

85g unsalted butter, melted

100g blueberries (I used fresh but you could use frozen)

12 hole muffin tray and cases

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Method

  1. Pre-heat the oven to 190 degrees and line the tin with muffin cases
  2. sift together the flour, caster sugar, baking powder and the bicarb of soda, add salt. Pour the milk into a separate jug with the eggs and vanilla essence and mix well.
  3. Make a well in the centre of the dry ingredients and mixing slowly with an electric mixer pour the milk mixture and continue to beat until combined fully in a smooth batter.
  4. Pour in the melted butter and beat to combine.
  5. Stir in the berries by hand making sure they are evenly spaced throughout the mixture
  6. Spoon the mixture into the muffin cases filling each one two thirds full.
  7. Sprinkle with sugar
  8. Bake for 25-30 mins (mine only took 22 minutes so keep an eye on them- they are ready when lightly brown and bounce back when lightly pressed)
  9. Leave in the tin for a short while then transfer to a wire tray to cool

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Manchester Cystic Fibrosis Parents and Carer’s evening and Joe update

Tuesday was a very busy day. Not only did Joseph have pre-school, we also had to go to our first Child Psychology appointment and Rob and I went to the Parent and carers CF evening for Manchester.

Joseph’s psychology appointment went well, it was an initial assessment where we talked about the issues we are having and the psychologist took notes, asked questions and decided whether they thought Joe would benefit from the psychologist support.

Without going into too much detail we discussed the issues Joseph has with food and mixed in with those issues are some problems with anxiety and “rituals” he performs as a means, we think, to cope with his anxiety.

In conclusion the psychologist thought we could benefit from further treatment, has suggested a possible referral to a speech and language therapist, has asked us to keep a diary of the issues and has put us on the 5 month waiting list to start some observations which will take place at home and in the preschool setting.

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So all in all it was a positive appointment, these issues are very complex and evidently it’s not going to be an overnight fix, but we feel better just knowing we have more support in the pipe line, and I feel like my concerns have been validated by a professional.

The Parents and carers CF Evening was successful too. As far as we are aware we were the only parents from Blackburn hospital to attend but I did recognise some of the staff from the Manchester CF team as Joseph has a clinic with them once a year for annual review.

We had talks on Research by Dr Alex Horsley who is the senior Lecturer and Consultant at Manchester Adult Cf Centre, Microbiology by Phillipa Burns the Microbiology Quality Lead, Director of Laboratory Medicine at Manchester and an Update on new treatments including Orkambi by Dr Anirban Maitra who is the Paediatric Respiratory Consultant and CF Director at RMCH (Royal Manchester children’s hospital)

Although the event was quite informal, the talks were very detailed and quite complicated- unfortunately that is the way with Cystic Fibrosis, it’s a lot to get your head around! Although I did not understand fully everything that was said, I definitely found the talks informative and it helped me to understand some big issues and processes more clearly. The following is a bit dry so I don’t blame you if you switch off!

In the Research talk by Dr Horsley I found it interesting to learn about the classification of CFTR genes (Cystic Fibrosis Transmembrane Conductance Regulator) and what the different classifications mean.

There are up to 2000 types of cystic fibrosis gene mutations known currently and more being found all the time. The genes are set into classifications which describe what happens at a cellular level that causes Cystic fibrosis.

From what I can gather in layman terms (I am not a scientist by any stretch of the imagination!) the proteins in the cell make channels that allow salt and water to be regulated in and out of the cell wall.

Class 1 mutations basically mean there is an error in the gene which means that the gene can’t make any or enough proteins to begin with.

Class 2 mutations mean the proteins get made but they look “odd” to the gene so the body breaks these proteins down.

Class 3 and 4 mutations mean the proteins get to the surface but can’t let anything through the cell wall.

And Class 5 mutations mean a few proteins get through but not enough for the body to function normally.

Around 66% of the population of people in the UK have two DF508 genes which are a class two mutation, and drugs like lumacaftor and Orkambi target the problems in this area, and the class 3 and 4 mutations, and this is where the majority of research is focused on making a change, as it affects the highest number of patients with CF, and is the area they have made the most headway on.

Joseph has a rare gene which I believe is a class 1 mutation, but I am not 100% sure of this and I am currently trying to gather further information. It is possible that it is so rare that they have yet to discover what classification it is and it may be impossible at this time to predict in any way how this mutation will affect him. All we know currently is that there is no research into class 1 mutations at the moment that Manchester knows of and that the current revolutionary drugs like kalydeco, lumacaftor  and orkambi will have no benefit to Joe if it is a class 1 mutation.

Dr Horsley also talked about the research process, how they get funding and explained why the research process is such a long slow business, the steps for starting a research study are as follows;

  1. Get an idea for study or medicine
  2. make a protocol- which means provide lots of evidence and a rationale and plan
  3. its sent to experts for review
  4. then for an ethics review
  5. then the MHRA (if a medicine)
  6. then the NHS Trust and CF Unit
  7. only then can patients be asked about the study.

The Microbiology talk was interesting but very difficult to understand with a lot of scientific talk! Microbiology is basically the study of micro organisms like bacteria, viruses and parasites) which obviously affect people with CF and cause problems like lung infections.

The microbiologists use the cough swabs and samples we and all other cf patients send in to look for microbes that may be problematic either by method of cultures- where they are grown on a petri dish, or through a microscope. It takes up to six days to grow the bacteria in the cultures and that is why it can sometimes take a while to see the results of your cough swab. The microorganisms that are grown from cough swabs and samples are then tested to see what antibiotic will be the best form of treatment.

Clever stuff.

Is your mind frazzled now? Ours certainly were!

The final talk was discussing why Orkambi has been refused in the UK, basically it comes down to the cost £104,000 per person PER YEAR. Orkambi only increased lung function by around 3% so the cost wasn’t seen as being worth it considering the small benefit in lung function. Arguments are that it isn’t all about lung function and that Orkambi helped in other ways such as increasing BMI in patients and that people on the trial of the drugs felt like they improved health wise.

Right, if you’re still reading this well done!

Hope it wasn’t too complicated…my son has CF and I still don’t really understand it but hey, we can only learn!

knowledge is power!

 

 

 

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Making mealtimes easier

Recently I have started listening to Podcasts, particularly when I go out for a walk in the evening to try and get a few more steps in on my Fitbit!

One of my favourites has been Bringing Up Betty- a Podcast about special needs parenting, it’s front woman is a lady called Sarah who has two children, her youngest is called Betty and she has a rare genetic disorder called Potocki-Shaffer Syndrome. The Podcasts partly tell the story of what life is like bringing up Betty and partly discuss a wide range of other issues in the world of special needs parenting.

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Betty- from bringing up Betty 

You can find the Bringing Up Betty website HERE  which has links to the Podcasts, or you can search for them in the I-tunes Podcast app.

Although I have enjoyed most of the Podcasts in particular I found her “Making Mealtimes Easier” episode really useful. In This episode she is in discussion with a Speech, language and feeding Therapist called Don Winkleman and they discuss a whole range of eating and feeding problems from picky eating right through to tube feeding in a light hearted yet very useful interview.

In fact, it was so good I took notes!

Joe, our son who has Cystic Fibrosis, has some issues regarding feeding and Gastrointestinal issues as I have mentioned in previous posts. He suffers from gastroesophageal reflux disease and possibly has some sensory issues around food although we are waiting to see a child psychologist about this as we are not sure wether a lot of his eating problems are physical, behavioural or psychological.

I just wanted to share with you some of the tips, advice and information I picked up from the Podcast as I think it would be helpful for other parents out there who have children with feeding problems, whether they have additional needs or not- many of these tips are useful for any parent when it comes to weaning, picky eaters or just making mealtimes easier for kids on a day to day basis.

  • The feeding therapist Don was very keen to mention EZPZ products as a way of helping children with eating problems or for babies who are going through weaning. They are a company that makes a range of products to encourage independent eating making mealtimes easier and less stressful for the child and the parent! You can visit their website HERE.category-happy
  • She is also an advocate of Food Art- presenting the food in a way that makes it fun and appetising for kids- this is a good way for picky eaters to become more engaged and open to new food. Obviously not every meal time will you have the time or inclination to make a masterpiece out of your toddlers dinner, but I think it’s a good way to introduce new foods or textures and to take anxiety out of mealtimes. Here are some food art pics to whet your appetite that I found on Pinterest! a9646303d507860843ff674548aef3bb679948dca045b61d45b5b4319a2720ce9b1fd696521425dcbfbb9cb4c497bc88470bc84dd1b575b27e70a71636000ef0
  • One of the tips she gives is to try preparing the same food in different ways. So for example if your child won’t eat carrots raw, instead of just thinking that they will never eat carrots try cooking them or presenting them in a different way- try steaming them, roasting them, grating them or mashing them before giving up on that food.
  • If your child has textural issues she suggests finding out what the texture is that they love best- for Joe it’s crunchy or dry food for example- and introduce first new foods with the same texture. When describing them to your child don’t tell them what the food is, just describe it as a plate of “crunchy” food or “smooth” food.
  • She advocates using positive language around foods. She asks you to imagine what people’s language and reaction is around food such as a birthday cake or a giant ice cream and compare that to how people talk about a salad and boiled chicken. Children pick up easily messages about the food they are about to eat from your tone of voice and body language.                               e4f02742a6ef1ad2206f6659d723ee5asad-salad
  • She suggests instead of trying to fix everything all at once try having a goal to work towards every month or few weeks, e.g this month we’re going to try two new vegetables or this month we’re going to try introducing a protein or a different texture.
  • She suggests having regular meal times where the whole family serves themselves from a selection in the middle of the table including the kids- that way the child can have a feeling of control over what they are eating but the parent or caregiver has ultimate control over what’s put on the table.
  • She reveals that a “normal” child will need to be introduced to a food 15 times before they are comfortable eating it. A child with additional needs such as autism may need to be exposed to a food 100’s of times before they feel safe trying it. It’s all about persistence.
  • Exposure to food includes serving the food, having it on the plate, watching others eat it and playing with the food.
  • She suggests that if your child has 20 foods or less that they will eat regularly then they are a problem eater, otherwise they are most likely a picky eater. She suggests that if a child has a meltdown when a certain type of food or new food is put on the plate, if they only eat a limited type of food or skip entire food groups or if they refuse food altogether despite hunger then that also suggests there is a problem.
  • One of the big issues with children who have a very limited amount of safe foods is that eventually they will get bored of eating even the safe foods and this in turn will make their list of safe foods smaller and smaller- this can ultimately lead to the need for tube feeding, which is why it is important to have early intervention.
  • She mentions specifically GERD (gastroesophageal reflux disease which Joe has) and recommends never forcing a child to swallow food that they have gagged on or regurgitated. This is because the food may have stomach acid on it which will taste disgusting and be painful to eat which will in turn possibly put the child off eating that food again. She suggests having a small bowl where the child can safely and hygienically spit food out into if they are gagging on it nearby at meal times. She also recommends keeping on top of anti-acid (Joe has omeprazole and gaviscon sachets) medication and ensuring that the dose is looked at regularly as it will need to be increased as the child grows.
  • Other tips for introducing new foods include; eat what your child is eating, if you are trying to get them to eat carrot sticks for example, you need to eat carrot sticks too- in front of them- so they can see you enjoying the food and can mimic how to eat it. A child with physical problems chewing and swallowing can be helped by letting them look in a mirror while eating.
  • She is also an advocate for playing with food and sensory play but suggests that play time and meal time are separate. For big occasions such as Christmas she suggests letting the child play with the types of food that you will be serving in the days and weeks beforehand so they can get used it it- rather than have them regurgitate it at the Christmas dinner table in front of great Aunt Fanny!
  • She also has some tips for relieving constipation, she suggests eating P Foods- pears, prunes, papaya, pineapple (if you can get them to eat it!), and to drink plenty of water- she says that you should half your child’s weight in lbs and that is the amount in ounces your child should drink  every day.  So if your child is 100lbs they should drink 50 oz of water a day.

Overall she suggests that our medical communities often don’t take feeding and eating issues seriously- we know it has taken a while for our doctors to realise that something wasn’t right with Joe’s eating and we are still struggling for help now. So if your child has problems with eating please keep persevering and asking for help .

Hope this has been useful to someone else out there and remember to give Bringing Up Betty a listen!

 

Update: Cystic Fibrosis, sunshine and nursery

2016 so far has not been the best year for us, although we have had some great moments and our two week Easter holiday was fantastic, health wise 2016 has been and is continuing to be a challenge.

Recently we have had to face a number of challenges, Joseph has been in and out of hospital with different viruses and infections but nothing in particular has come up on cough swabs. He is now currently coming to the end of another course of oral antibiotics which doesn’t seem to be working. He has a recurrent productive cough that will not go away, we have CF clinic next week so hopefully they will be able to check him over and sort him out there.

We have been looking forward to the warmer weather but now it’s here it has come with a new set of challenges! Joe does not seem to be able to cope well in the heat. As with all people with CF he loses a lot of salt through his sweat and this can cause complications in hot weather (please see THIS POST for more info on why people with CF need to take salt replacement) so we have experienced excessive sweating, confusion, vomiting and exhaustion all through the combination of Joe not being 100%, the hot weather and him being a toddler who runs around at full pelt regardless of how you try and calm him down! Another issue is that if he is excited he will not eat or drink which adds to the problem and so social get-togethers in the hot weather or in party environments his over-heating and exhaustion can be tricky to handle.

We have had issues with Joe’s nursery as well recently. They have not been giving him the standard of care we would expect even for a non-CF child, to cut a long story short we picked him up from nursery last week and he was barefoot, sun burnt and filthy with soil and snot smeared over his face and soil all over his hands. It is not recommended that children with CF go routing around in soil as it can contain nasty bacteria that cause chest infections in people with CF. I would not have been so concerned if they had at least washed his hands thoroughly after he had been digging in the mud, but there seemed a total lack of hygiene. Phone calls and a long email were sent to the nursery manager and hopefully his standard of care will improve from now on. Joe’s CF team are also going to go back in to nursery to give the staff more awareness training next week.

I believe part of the problem with nursery and a big challenge that is going to follow Joe for the whole of his life is that he doesn’t look like he has a disability. To all intents and purposes he looks and acts like a perfectly healthy little boy and of course that is how we would like him to be treated.

But it is also important for others to realise that although he looks healthy on the outside, a lot of time, effort and heart ache goes in to keeping him well enough so that he can appear the same as his peers and live as normal a life as possible. The nursery staff do not see the physiotherapy, inhalers, 15 doses of medications that he has to have before nursery starts at 8 am along with all the “normal” things you have to do to get ready in the morning! Only to repeat them again at night! They do not see the weekends spent in hospital, the clinic appointments, cough swabs, breathing exercises, they do not hear him coughing ALL NIGHT LONG. And I suppose in that way it is easy to forget that he has a condition that needs to be managed and that infection control is a serious issue!

So when I ask nursery to make sure his hands are clean and that he shouldn’t play in stagnant water and filth I think that’s not a lot to ask really in the grand scheme of the day!

Anyway…..rant over.

To top this all off Rob fell off his bike and broke his hand last week too! SO we’ve been having a grand old time- plus the fact we started potty training in the midst of it all!

Luckily potty training is going really well- it was something I was really worried about starting but I think Joe is ready and he has taken to it really quickly.

So, yeah, there’s an update on our life at the moment! The only way is up baby!

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Easter holidays

Rob, Joe and I have had a brilliant 2 weeks this Easter holiday. We previously have had a rough few months and decided to make the most of everyday that we were all well and the sun was shining!

Here are some photos of what we have been up to this holiday!

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We’ve done more sensory play with sand and dinosaurs!

We went to a food festival and for a big play and run around at Ribchester.

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We’ve had PJ days and a few lie-ins!

We’ve been to Billy Bob’s and Skipton Castle with Granny and Grandpa- lots of yummy food, sword fights and playing!

Rob and I had a fantastic night away at a beautiful country pub called the “Spread Eagle” at Sawley. Joe had a lovely time with Granny and Grandpa and a morning at nursery while me and Rob had a brilliant time walking round Clitheroe, looking round the shops and having dinner bed and breakfast at the hotel. It was a much needed re-charge for us after a long few months of illness, moving house and work.

We’ve been to Witton Park to play football, play on the park and have some really big muddy walks through the forest.

We’ve been out for lots of coffee and cake (and pulling funny faces!)

We had Nanny and Grandad come to visit and went to feed the animals and ride the tractors at Bowland Wild Boar Park- even wet trousers couldn’t stop Joe who soldiered bravely on wearing daddy’s shirt upside-down as some make shift dungarees!

IMG_6095[1]IMG_6096[1]IMG_6100[1]IMG_6101[1]We had great fun with Nanny and Grandad at Lytham St Anne’s walking on the blustery sand, going on all the rides at the pier and eating some very cold ice cream sheltering from the wind!

We had a fantastic day at Bolton Abbey picnicking and frolicking in the sunshine whilst enjoying the amazing scenery with Auntie Lynne, Uncle Ian and baby Owen!

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Joe and Baby Owen – best buddies!

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Nice gentle baby hugs!

We’ve been out for breakfast and milkshakes at Bashall Barn!

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For adventures and walks round the picturesque village of Waddington

We’ve even been on a boat!

The holiday is not quite over yet, but we have had an amazing time so far and have made lots of happy memories- it’s just what we needed and we may not necessarily feel well rested but we definitely feel happy and blessed!

Hope you’ve enjoyed seeing what we’ve been up to the past two weeks, and hope you’ve all had a great Easter holiday too!

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Coffee and walnut Bundt cake

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My favourite cake in the whole world is coffee and walnut cake, I used to love it when my Mom made them for Sunday buffets or birthdays, usually in a Victoria sandwich style with coffee butter cream frosting. Yum scrum!

We had some walnuts in from another recipe and the idea of making one of my own has been niggling at me all week. Today I succumbed to the idea, but had to improvise as I did not have enough butter to make the cake and butter cream.

So instead I made a Bundt cake with coffee glacé icing, sprinkled with crushed walnuts. I think it looks pretty impressive. It may not be my mom’s, but it will do!

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Ingredients 

CAKE

  • 200g plain flour
  • 200g caster sugar
  • 3 eggs
  • 2 tsp coffee granules mixed with 1 tablespoon boiling water
  • 50g walnut pieces
  • 25ml milk
  • 1 1/2 tsp baking powder
  • 200g butter (softened)

ICING

  • 200g icing sugar
  • 2 tsp coffee granules mixed with 1 tablespoon boiling water
  • sprinkling of chopped walnuts

TOOLS

  • Bundt tin (or garland/ ring mould)
  • pre heated oven 180 degrees centigrade
  • handheld or stand mixer
  • measuring scales
  • wire cooling tray

METHOD

  1. Preheat oven, grease your tin  and weigh out and sieve flour and baking powder- set aside.
  2. Beat the butter until creamy then add in the sugar, beat until fluffy.
  3. Add the eggs one at a time with a spoonful of the measured out flour and beat until combined.
  4. Stir in the coffee
  5. Fold in the remaining flour a bit at a time until fully combined.
  6. Add the milk if necessary to reach a soft dropping consistency.
  7. Fold in the chopped walnuts.
  8. Pour the mixture into your prepared tin and bake for 30 mins (after 20 mins I covered mine with foil to prevent the cake from over browning.
  9. Leave in the tin to cool for 10 mins then turn out onto a wire wrack to cool completely,
  10.  Meanwhile make the glacé icing- sift the icing sugar into a bowl, add the coffee and 1-3 tbsp of boiling water and mix until thick.
  11. When the cake is totally cool drizzle with the glacé icing and sprinkle with crushed walnuts
  12. Eat a giant piece with a nice cup of coffee!

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Sensory play: dinosaur land

Here is my first attempt at a sensory bin play box for Joe! It’s a dinosaur land complete with foamy swap, beach, rocky terrain, cave and snowy mountain!

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Dinosaur sensory play

The beach is made of lentils, the snow is flour, the rocky terrain is pebbles from the garden which I sterilised and the spooky swamp is just washing up liquid and water whisked with a touch of baking powder.

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The sensory box started as just a large deep roasting tin and a few plastic boxes from the recycling pile, the cave is an empty tub that had baking powder in (not pictured.)

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I used some fake flowers for greenery and then mini toy dinosaurs for the role play. Pretty easy but quite effective!

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Now, sensory play can get quite messy, so if playing outdoors is not an option make sure you play on wipe clean floors or put matting down, I put down large plastic bags and towels to protect the floor.

Joe appears to have some sensory problems, he doesn’t like getting dirty, he has problems with eating certain textures and only eats a very limited variety of foods, he doesn’t like touching things like foam or gloopy/slimy textures and he struggles with messy play wanting his hands to be wiped all the time. As a baby he never really went through the oral phase and was not one to put things in his mouth. He is also not keen on sand, dried rice and the feel of grass on his bare feet.

These sensory bins are an attempt to get him used to different textures and to overcome his fear of getting dirty. This is turn may help him with some of the textural aversion problems he has with food. IMG_5727[1]

Initially he said he didn’t want to play with it, but after a bit of coaxing and watching me play and touch the different items he got braver. The swamp was a no go and as soon as the bubbles touched his skin he got very agitated and wanted to wash his hands, but he got his hands stuck in to the flour. He was much more receptive when I got a bowl of clean water for the dinosaurs to wash themselves in!

Overall it was a positive experience, these things take a long time but I will definitely try and do some more sensory boxes in the future!

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Afterwards- things did get messy! 

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What I’m interested in this week

While I’ve been under the weather I’ve been given more opportunities to sit around and look at the internet! Here are some of the things that have caught my interest this week:

FITBIT 

Robin has treated me to a Fitbit-

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I’ve gone for a Fitbit One, it’s small and compact and clips onto your pocket or bra strap. The Fitbit is a wireless activity tracker which can record how many steps you’ve taken, floors you’ve climbed, distance you’ve travelled and calories burned in a day. It also can monitor your sleep patterns, has a clock and silent alarm plus if you download the app onto your phone you can also track how much water you drink and your food intake for the day.

It’s a great motivational tool, you can set your own goals, plus link up with friends and try and compete against them to see who can take the most steps. Some of my family have one and they give it a ringing endorsement so I was intrigued.

I’ve only had this for a few days,and I’ve been ill and not very active but already it’s quite addictive- its encouraging as it gets you to move about more in your everyday life without necessary having to do anything special like joining a gym or a class.

What with being ill and stressed out recently I thought it about time to start being a bit more active, get the endorphins going and pump some serotonin into my system! Hopefully being more active will keep me sane and well enough to look after my Joe, whilst also encouraging him to do more activity too!

Sensory play

I have been researching into some sensory play ideas for Joe to see if it will help with some of the issues he has around texture, plus he has been watching a lot of TV recently due to me being ill so I wanted to get back into learning and play again and be a bit more present in my parenting. SO this week I think I’m going to try out some sensory bins, here are a few of the ideas I found on-line that I thought might peek his interest:

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Space sensory tub

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Dinosaur small world 

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Self Care

One thing I have been focused on this week is the idea of self care. As a parent of a child with a disability, as with many parents, I find that I spend less and less time caring for myself. This may seem like a altruistic thing at first but I have soon come to realise you can’t fill a glass with an empty jug.

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By this I mean, that as a caregiver, you cannot give to others if you are not looking after your own needs first- simple basic needs like your mental health, eating right, hygiene, exercise, leisure and relaxation and socialising.

I have found this out first hand this year and have been left stressed out, exhausted mentally and physically and now my body has sent me some pretty serious signals to say “hey, you! slow down before you fall down!”

So I have been looking at ways to improve my self care and well being which will in turn make me a better person, mother and wife.

Here is one of the ideas I might try out: The self care coping tool box

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What kind of things do you think you would include in a coping tool box? (I’m thinking gin and tonic- lol!) Is it wrong that I’m most interested in decorating the box?!

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Art Therapy

I’ve also done quite a bit of research into using art as therapy- I’ve always liked the idea of doing an art journal but have never really gotten round to it, but I do practice art at least once a week with my art group and I find it very relaxing and creatively engaging. Here are some art therapy ideas I’ve been looking at:

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Self portraits- what goes on inside your head

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Expressive hand prints- your life in the palm of your hand

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Art journalling

And to finish, here is my favourite quote of the week:

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Hope you’re having a good week!

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Don’t get too close- you might catch it!

Hi everyone,

Everything has been a bit rubbish round here for the past….I don’t know…..FOREVER! The saga of the never ending chest infection/ ear infection/illness continues and now not only is Joe on his 4th week of extra antibiotics, coughing like a trooper, and not eating a lot (no change there then) I am also on antibiotics for a chest infection.

Joe is a seasoned pro at this illness malarkey so he just gets on with life and doesn’t seem to let it bother him too much, sure he coughs and coughs, he stops eating and he sleeps a lot, but when he’s awake he just pretends nothings wrong and runs around like the crazy toddler he is.

I on the other hand am not a perky bunny. I am not used to having chest infections and have spent the past week wanting to curl up into a ball and sleep forever- if I could actually sleep that would be a bonus. Not only have we had the usual chesty cough, snotty nose, aches and pains, sleepless nights, we’ve also had earache, tummy ache, nose bleeds, mouth ulcers and even sticky pink eye to deal with!

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not a happy bunny

I have been full of woe and self pity the past week especially, looking after a toddler is hard. Looking after a toddler who has a chest infection and cystic fibrosis and eating problems while you also have a chest infection and your eye is stuck together and your tongue is covered in ulcers is my definition of hell on Earth.

Luckily I have a wonderful husband who takes over the second he walks in the door, pretends that I look beautiful even though I know I look like an extra on the walking dead, steps over the piles of crap all over the house politely ignoring the mess and lets me crawl up into bed and hide away for a few hours- plus sleeps on the sofa so I can get some rest. (and also because he doesn’t want to catch something nasty off me.)

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Me-sprucing myself up before rob gets home

I am also very lucky to have Rob’s dad who has taken Joe for two mornings this week so I can curl up on the sofa and moan in peace. He has entered the plague zone twice and I am really hoping he’s not been infected too, plus he and Rob’s mum spent Easter Sunday afternoon in hospital with us- AGAIN after being invited round for what was cleverly disguised as Sunday lunch but actually turned out to be a trip out to the children’s observation unit! YAY for Easter!

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my front door

So all this lying around, moaning and coughing has got me thinking. Initially I was thinking things like “Why God hast thou forsaken me!!!!” and “Just let me die!” but after a few days I’ve had time to reflect.

Firstly I’ve been thinking about what a hero Joe is. His attitude to life is amazing. He has treatment after treatment, cough after cough, illness after illness and he never seems to get down or question it or wonder why life isn’t fair.( I know he hasn’t got much in the way of philosophical thought- he is only two and a half, but still, he just says matter of factly “I’ve got a cough” and then runs off to watch scooby doo.) When I am ill with a chest infection or cold I do feel really sad, not just because I feel sorry for myself, but because I know that Joe must feel like this a lot. And I know that when he gets older the way I feel when I feel a bit crappy is the way he might feel most days.

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And it just makes me love him even more.

Secondly I have been thinking about how much I take my health for granted when I am not ill. Just the ability to breathe through your nose, be able to walk a few steps without coughing, being able to swallow food without pain- these things are amazing and I never even think about how lucky I am until It’s not there any more.

Thirdly I’ve realised how reliant Joe and Rob are on me being fit and healthy. I often feel self conscious about being a stay at home mum, and feel like it is not a role that is valued very much in contemporary society.  But as I have been ill this week despite Rob’s best efforts I have watched our house fall apart around me, we have no clean clothes, there’s washing up to be done, there’s not enough food, don’t even talk about the bathroom! Joe has survived mainly on biscuits and has spent the majority of everyday watching TV. This is not a negative reflection on Rob by any means- he has been great but there is only so much one man can do in the few hours after work.  Joe’s ill and cant go to nursery but there is no one else to look after him in the day (apart from the two mornings grandpa has kindly given up this week) and even though I’ve been hardly able to stand I’ve still had to do Joe’s physio, medications, treatments, I’ve still had to make sure he’s washed and clothed and fed (ish), Iv’e still had to order his medications and take him out for fresh air and hug him when he’s upset because- who else can do it if not me? So it’s made me proud of the work I do everyday. I am not just a stay at home mom, I’m a cleaner, nurse, therapist, carer, advocate, educator, cook, handyman, counsellor.

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So I’ve decided that when I have eventually kicked this infection to the curb I’m going to try and value my health a bit more- mentally and physically. Rob has brought me a Fitbit so that I can try and be more active in the day, I’ve started my headspace mindfulness meditation again and I’m going to do my best to not get so stressed out and if I’m honest anxious and depressed about things- self care is just as important as the care I have to give to others.

Anyway, that was a super long post! thanks for reading if you still are!

 

 

 

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Easter so far!

Happy Easter everyone!

So far our Easter has involved baking

decorating mantelpieces

decorating rooms

seeing family

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and hot cross buns with bacon!

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What have you been up to so far this Easter weekend? Hope your’e having a great one!