signing, and one day, at around 15 months old he signed ‘more’ as I was making his Shaun the Sheep doll dance. Jed is now starting to comprehend more language and after a lot of hard work can produce a few words. Physically, Jed was very floppy. Severe reflux made it painful for him to lay flat or be on his tummy and sensory issues meant that sometimes even a loving touch meant pain. I trialled all sorts of touching pressure and massage and a wonderful OT we worked with helped me understand sensory processing issues a bit more and introduced me to vestibular system exercises.
I REMEMBER ENDLESSLY READING AND RESEARCHING AND ASKING SO MANY QUESTIONS. BUT I ALSO NEEDED TO CONSERVE ENERGY FOR JED SO I WEEDED OUT THE IMPORTANT ‘NEED TO KNOW NOW’ STUFF FROM THE WHAT IFS AND MAYBES. I documented all his daily vitals so that I could see patterns and I didn’t expend energy on worry. I tried to be practical and relaxed in finding solutions that could make the situation better or more tolerable for him. Josh and I both have a strong spiritual faith that has really kept us grounded throughout our challenges as a family. I’m a big believer in prayer and I pray for Jed and for wisdom and insight to help me give Jed the best opportunity and every chance to thrive. I keep thinking about this scripture that says, “Perhaps this is the moment for which you have been created.” In June this year, Jed had his submucosal cleft palate repaired by Dr David Gillett who did an amazing job. Jed’s cleft was discovered when he was 11 months old during an operation to remove his adenoids and partially his tonsils to help his sleep. He has multiple challenges regarding speech and language, but the palate repair was a practical piece of the puzzle that will give him the best opportunity to progress. He was not
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able to suck or blow through his mouth, but we are working on those things now. I have never been so preoccupied with bowel movements as I am now! Jed has multiple gastrointestinal issues so whether he has had a poo is a pivotal factor in the day. Hard poo, soft poo, runny poo, acid poo, no poo. I feel like a scientist! I have also recorded his liquid intake every day of his life so far, and weighed nappies on those low fluid intake days. The food he is offered is carefully tailored to ease gut pain, limit reflux, minimise choking. I try to make each bit of food offered nutritional and fun. I analyse the previous day. Did he have a good day? Is there anything practically I can help do to help him function better. Give him more quality to the day?
BEST INSIGHTS: You will be your child’s specialist. In some ways, you will know more than some of the medical specialists and therapists you will be dealing with. Be your child’s advocate. Talk and sing to your child. I narrate to Jed all the time – I describe the scenery as we go for a stroll in the pram. I discuss why the plants need sunlight and water, I make up silly songs about washing dishes. I tell him where we are going, why and give ‘play by play’ directions. I massage his muscles in the morning, give him deep pressure hugs and sing to him. I ask him questions and if he makes any attempt at a response, then I ask him another. I try to see a situation from his perspective and acknowledge what I perceive his feelings may be, then include him in working together to find a solution. You just do whatever it takes for your child to be at their best that day.
OUR FAVOURITE PLACES TO GO AS A FAMILY: The first time I ever heard Jed say, “woohoo!” was four months ago on a Friday when I reminded him that the next day was Saturday, our family day. We have so many lovely places close by to us. King’s Park, Perry Lakes, City Beach, Cottesloe Beach. Jed is interested in playgrounds now, so accessible ‘Jed friendly’ ones are always on the radar. If you see us out, more than likely we are humming, singing, dancing or just acting silly. Maybe we are singing a song you know, or maybe not – but please feel free to join in. Your child is unique. Celebrate the moment. Find the joy.
PRODUCTS WE LOVE: •
Comotomo bottles and Dr Brown’s Specialty Feeding bottles.
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SMALTUM Giraffes Weaning cups and Xsmall KeepCups – great for little hands that are a bit floppy.
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Yumbox – leak proof bento boxes – good for compartmentalising coloured foods or textures.
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ErgoPouch sleep suits.
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Babiator polarised sunglasses – great for light sensitivity and hard to break.
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Pureau Boxed Water – a staple in our house for drinking as Jed reacts with gastric distress to filtered boiled tap water and other bottled waters.
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Stokke Trip Trapp Chair – we won this awesome chair in a Source Kids competition and it was such a God send. We are getting a special Tomato soft liner to cup his bum.
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City Elite Baby Jogger – it has been so easy to modify to Jed’s needs.
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NutCase Helmets.
PEOPLE AND BUSINESSES WE LOVE: Dietician: Ingrid Roche, PMH Immunology and Advanced Dietitians Group Murdoch. This lady is amazing! She keeps up with Jed’s complex needs and really offers tailored care and helpful suggestions. Physio: Jenny Moore, Early Movers Physiotherapy and PMH EIT program. We met Jenny when Jed was six weeks old and had first been diagnosed. She was so lovely and understanding and practical. She inspired me to look beyond milestones but gave practical breakdowns to work on to get to the next level. Speech Cleft and Palate Pathologist Terry Washbourne and PMH Dental team. Ability Centre Team: Avril, Sue, Jess, Andrea. We have a long list of superstar doctors but a quick shout out to a few that have given us so much of their time: Dr Jon Silberstein, Neurologist; Dr Alexandra Taylor, Specialist Ophthalmologist; Dr Sharma, Gastroenterologist; PMH Dr Thacker, Gastroenterologist; PMH Dr Paula Holmes, Paediatrician. Kate Zanich took the beautiful photos. Her handsome son Leuwin is one of Jed’s little mates She is a photographer and owner of Leo & Spargo featured on Esty and Facebook.
SUMMER 2017
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