The Lodger and Us

Just the other day myself, The Lodger and his Auntie were having lunch when he threw out a question that had his Auntie nearly spraying her cup of tea around the room. "Is Papa going to die tomorrow?" The Lodger innocently asked.  "What, of course not, why do you think that?" I replied. "Well, Papa said he'd be an old man tomorrow and it's his last day!" FYI Papa is retiring. It reminded me of the show Dinosaurs, were on Hurling Day the son-in-law hurled his mother in law off the cliff and the grandson really didn't like the idea of it! I've a feeling it's a show The Lodger would enjoy!  Dinosaurs I reassured The Lodger, explaining retirement and all was well... or so I thought.  Later that day, we were travelling across the country homeward bound and I got the grilling, I should've known to expect.  "Mum,  you said that Mother (his great-grandmother) died because she was old" Me: "Yes I di...

The Lodger is now very aware that people eat different things to him. At meal times he'll point out if we are having the same meal and mention any differences between them. He'll show off his counting skills too... 'one piece of bread', 'two tomatoes', 'three different foods on my plate'.  He's also very aware that there are food types he can't eat.  We've chosen to keep The Lodger on a healthy, balanced, nutritionally dense diet. After too many hours.. months, probably years stressing about different types of diets - low carb, high fat, high protein, ketogenic, the list goes on... We've settled on a nutritionally dense healthy diet for The Lodger.  Every few months we'll fill in a food diary to get it analysed by his dietitian to make sure he's getting everything he needs. There's probably not many people who use My Fitness Pal for their 4 year old but it's a very useful tool to plug in his meals and get immediate fe...

Today started like most other Saturdays, we had our breakfast and we discussed the plan for the day. The Lodger likes to know what is happening but in the same breath he doesn't like when plans change. Through lessons learned over the past few months, we only tell The Lodger plans for the day that are definitely happening.  But today, today was a Saturday. The to-do list for the morning had been made. We put on our jackets, T he Lodger carried the shopping bags and I picked up the car seat. I went to open the front door and realised my keys were missing!  After a little bit of panic that The Lodger was oblivious to, I found the spare car key and we used the back door to leave the house. This was met with many questions about the status of the front door but we moved past it and The Lodger helped carry the bags, as we made our way to the car. To my horror, the key I thought was the spare key was not for this car. I assessed the situation....

The Lodger has many people in his life who love him, care for him and support him. We are very fortunate to have a wonderful network of family and friends who without question got on board with our PWS rulebook. The Lodger has a team of superheroes who work with him in areas such as speech and language, occupational therapy, physiotherapy and not forgetting his teachers and preschool assistant in Playschool.  The Lodger at his most recent checkup was in the recommended zones for height and weight and his blood work came back perfect. This was great news to hear, as we are constantly stressing over 'Is he eating too much?', 'Is he eating enough?', 'Is he getting enough vitamins and nutrients?', 'Is he healthy?' We, as parents, are constantly thinking about his meals and snacks, planning ahead for changes in routine and ensuring that he is eating a very healthy diet. The Lodger is never given extra, never given food from someones else plat...

We're like the Who's in Whoville when it comes to Christmas. We love it.  I remember when I was pregnant with The Lodger dreaming of future Christmases, that would be filled with wonder and magic... and carrying on Christmas traditions my own parents started- The advent calendar, decorating the Christmas Tree, Santa leaving a trail of chocolate money all the way around the house, the Christmas stocking at the end of the bed, the excitement I shared with my sisters on Christmas morning, the gathering of family, the annual chocolate Santa and a selection box, the Christmas morning breakfast, mince pies and chocolate kimberley biscuits in the run up to the main day, Christmas dinner with the delicious smells of spiced beef and red cabbage wafting around the house, the tower of chocolate profiteroles covered in mars bar sauce, the Christmas Day games, the Christmas dinner leftovers to be enjoyed on Stephen's Day, the gathering of friends... The last three Christmases with...

Today, we visited a toy shop with The Lodger. We did this to see if there is anything that he would really love Santa to bring him. We’ve been reading the toy catalogue, showing him tv ads of toys he might like but so far, we are coming up short. The Lodger has only one Christmas wish request.... and that can't be bought in a shop!  The Lodger visiting a Christmas shop In classic Lodger style, he has set us a Christmas challenge.... Recently, The Lodger's Auntie asked him what was Santa bringing? The Lodger without hesitation replied  'Walk'. 'A walk?'  I asked. 'Yes!'  he said with the biggest smile on his face as he pointed to outside. I explained that Santa might be so busy that day, bringing gifts to all the good boys and girls all over the world, that he might not be able to bring The Lodger for a walk. I asked  'If Santa can't go for a walk, what else would you like?' 'Dog!'  The Lodger replied wit...

The first year after The Lodgers diagnosis every week there seemed to be something new that we would have to get our heads around as parents of somebody with Prader-Willi Syndrome (PWS).  All we could see was FOOD!! At birthdays there's cake. At Halloween there's trick or treating. At Christmas there's too much. At weddings there's food. At Easter there's chocolate. At family and friends get togethers there's food. Walking down the street, there's food! And then there's the things we enjoyed doing, baking and cooking, eating out in restaurants, going for a coffee down in the village, a takeaway when we didn't feel like cooking, picnics up the mountains, a trip to the cinema with popcorn, an ice-cream on a sunny day, a hot chocolate on a wintery day... the list goes on! In that first year, we enjoyed the last time we'd have our favourite cake on our birthday, a selection box at Christmas, an Easter egg, an ice-cream, a hot chocolate...

My phone beeped early this morning. I picked it up and smiled. There on the screen was a reminder that today was the 1st anniversary of the day The Lodger hugged back.  Since that day, I must have received a hug every waking hour. The Lodger wakes and hugs you, he hugs with all his strength, he hugs when he's really happy, when he's sad, before he goes to bed, to say goodbye,  he hugs you and means it.  The Lodger has severely low muscle tone and as a result, his milestones are delayed. Physiotherapy plays big role in his daily activity. He's almost two and a half years old and unfortunately he hasn't started growth hormone therapy yet, so every milestone reached is through his own determination.  The Lodger has been hugged everyday since day one. I often think how unbeknownst to us, while we were focusing on crawling and teaching him jigsaws, somewhere inside him, he was working towards hugging Mum and Dad back.  His latest skill is cruising...

This morning I woke up in a panic. I had one of those dreams that seemed so very realistic that I thought it was happening right at that moment. The Lodger was given an empty selection box with the task of completing a treasure hunt to fill it up with all its chocolate goods! Somewhere in the dream was the Easter Bunny without the PWS memo!!  If someone had ever told me that one day a dream featuring a selection box would cause me so much stress, I would never have believed it.  We've chosen to not give the Lodger any typical food treats. There's no biscuits/ice-cream/cake/chocolate/crisps/sweets in our house for him.  Our thinking on this is that if he never has it, he'll never miss it.  The Lodger is only two and I know there will be many food challenges for him to face as he grows older but for now all we can do is be prepared and make the healthiest choices.  As I was growing up, birthdays were always filled with Mums Chocolate Cake. Every year she m...

Sometimes its easy to forget that you do not have Prader-Willli Syndrome.   My son does but he's two. Yes I'm healthy, very healthy. In fact we rarely have bad food in the house. Frozen rubbish, processed ready meals never pass our  front door. Yet I still feel so guilty thinking about a bag of chips on the way home from a night out with the lads. Its stupid, its ridiculous.  My son wont know.  I'm not hurting him. I'm not causing him any harm. But still it always happens.  The guilt.  We often have to remind ourselves that we do not suffer from a potentially life threatening syndrome. That we are actually innocent in all of this. That we didn't cause this. Yet we punish ourselves. We subconsciously eat super healthy, we exercise regularly and we sneak a plain rice cake with a cup of tea late in the evening.  Prader willi syndrome is tough but I dont have it! Sometimes, as quite a food driven person pre PWS I forget this and forget to realise I...

The Lodger is small. He's 22 months old but is still fitting perfectly into his 12 month clothes. When I see him next to other kids his age, he's tiny!  We meet with the Dietician a few times in the year.  Yesterday was that day.  I'm always nervous before a visit to the Dietician. Has The Lodger grown? Has he put on enough weight? Has he put on any weight? Too much weight? Are we giving him enough food? Too much food? The right type of food? Is he on the right type of diet? Is he getting everything he needs nutritionally? Are we too strict? Are we doing the right thing? The Lodger gained in weight and height! We rejoiced! He's still on a low percentile but his Dietician is happy with his growth! Children with PWS often struggle at the start to put on weight and then around 2 years old they can rapidly gain weight. Research has recently shown that the rapid weight gain can start before the insatiable appetite begins.  It was five months since ...