New Reflux Medication

Asa’s reflux seems worse than ever lately. To the point where I’m teary several times a day. I know the poor little lad can’t help it, and I feel so sorry for him. And for myself. And the furniture, carpets and the washing machine. Asa can vomit up to ten times a day. Yes, I know “all babies are sick”, but this is different. This is an illness: Gastro-oesophageal reflux disease (GORD).

A new online friend on Twitter, G, suggested a different medication for Asa to try. Her little boy, N, has experienced reflux and she is a pharmacist so has professional interest. Yesterday I took Asa back to the doctors to see about a different medication for him, Omeperazole. Thankfully the doctor agreed. Also, on the advice of G, my new friend, I also asked about a feed thickener for Asa’s milk / drinks which should help keep it down in his stomach (God willing!) . Again, the doctor agreed. Happy mama!

Today, Asa started his new meds. So far, he has not been sick today. It seems as though the combination of Omeperazole and Carobel (thickener) has already worked. The doctor warned it could take 2-3 weeks to find out if the new meds would be helpful. Only time will tell if it these meds really will make a difference.

Last Feeding Clinic!

Today Asa has been discharged from the feeding clinic! I am thrilled as it means Asa is eating ‘normally’ and the speech and language therapist and dietician have no concerns over his eating or dietary management. Considering his gross motor development stage is around 4-5 months (due primarily to him not being able to sit up unaided), he is able to eat baby food that is age appropriate – so he is currently 10 months old and he is eating baby jars for a 10 month old. The dietician said she would not have expected this and said Asa is doing very well. There are still some challenges with Asa’s feeding, such as him tolerating larger lumps and occasional gagging and almost choking, which I hope will improve with time. We have a few recommendations for Asa to be going on with:

–          Doidy cup for drinking (an open slanted cup)

–          Lateral placement (i.e. Directing the spoon to alternative sides of Asa’s mouth (so that he learns to chew properly)

–          Continue to offer a range of textures and tastes

–          Offer ‘bite and disolve’ finger food, such as Organix goodies ‘toddler crisps’

–          And finally, my least favourite: messy food play. Eww, gross! (I promise to share a few photos, one day! Please hold me to it!!)

 

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A good friend will often encourage you at times when it might be most needed. Or even just write you a random note for no reason. This evening, I found this post-it note on one of my kitchen units. Thank you Coral, for your encouragement and friendship! :-)

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Pigs, Family and Weaning: A Busy Few Days!

On Thursday (1st November), we headed to a Peppa Pig book reading and ‘meet Peppa’ event, as part of the Penarth Book Festival 2012. Jon had the afternoon off work and we kept it a surprise from Emelia until we were getting ready to go. She was so excited to meet her favourite cartoon character! John Sparkes, the narrator and voice for several of the characters in the TV show, read a few Peppa Pig stories before Peppa and George arrived! An orderly queue was formed, and Emelia and I joined the back of it whilst Jon gave Asa his bottle. Please forgive some of the fuzzy photos – we were under pressure to take a few photos knowing there was a queue behind us!!!

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Emelia with Peppa and George. We were expecting her to be a little nervous!
She’s a star!

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Emelia with Mr. Dinosaur. ROAR!!!!

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We all had a lovely time! Emelia sat nicely during the story time, and LOVED meeting Peppa and George! I must admit, I was somewhat dreading a room full of Peppa Pig loving toddlers, but all the children were great.

Towards the end of the event, I met an acquaintance I knew when Emelia was very little. We were talking about our older children, then about our recent additions, how they were etc. The usual polite chit chat. When talking about Asa, I told her that he has Down’s Syndrome. Telling people this news usually prompts a varied reaction, mostly positive. Today’s was one of the worst. “Oh, I’m sorry.” This was accompanied by “the face”. You probably know the face I’m referring to. That pitying, apologetic, head tilted, sometimes false look…

Excuse me, but why are you sorry? Is our son’s existence something to be apologetic for?! So, please tell me, why are you sorry? Because I’m not. Nor is Jon. Nor are our friends and family. Asa is healthy, happy, content, loved and wanted. Yes, when Asa was born we found the diagnosis of DS difficult to come to terms with. Initially. And yes, even now, we (ok, I – Lizz) may have the odd wobble. BUT PLEASE DO NOT APOLOGISE FOR THE BIRTH OR EXISTENCE OF OUR ADORABLE LITTLE BOY, OR FOR ANYTHING ABOUT HIM. Same goes for Emelia and any child.

The above is what I felt like saying. However, I simply mumbled something like, “No,  it’s ok.” Next time will be different… I fully understand that not everyone knows what to say to this kind of news. But how about ‘congratulations’, ‘he’s cute / gorgeous’, even ‘thanks for telling me’ or ‘how are you doing?’. But as the old saying goes, if you can’t say anything nice, don’t say anything at all.

I came across a great blog post when Asa was first born, about what to say when a child is born with Down’s syndrome. It’s not too long, and you can check it out here.

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After meeting Peppa Pig and battling through the horrendous rain, we headed to Barry Hospital where Ray is still recovering from his broken thigh/hip. Grandad Shaw hasn’t had too many cuddles with his grandson yet, due to his Parkinson’s, so tonight was a special night. I love our family. Not just our children, but the wider family too. We are incredibly blessed.

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On the 2nd November, Asa got to hang out with his great-grandad Lofthouse (that’s my grandad!).

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Yesterday (3rd November), we started Asa on his first taste of solid food. It wasn’t anything grand – just some baby rice – but Asa thought it a treat and gobbled it all up! Well done buddy! He is now 17 weeks, which is the earliest you can wean babies in the UK. He does seem ready. However, we’re also hoping it will help with the reflux. Asa struggles a lot with this and is very sicky; for hours after a feed he will continue to bring up small amounts. He has Aptamil Comfort milk formula which is much thicker and heavier than other milks; he also gaviscon in each milk feed plus three doses of ranitidine a day… It’s stressful at times and he always needs to be wearing a bib. The health visitor and dietitian have both given us the go-ahead to wean as normal, and we’re all hoping it will help weigh the milk down so it all stays firmly in his tummy.

I loved this weaning stage with Emelia and I’m excited too about weaning Asa. Today also went well. Keep it up Asa! (or should it be ‘keep it down’?!)

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Tonight (4th November), Jon and Asa are off to watch Cardiff City live on Sky at a friend’s house. I dressed Asa in his blue hoody, so he can show his support for the ‘Bluebirds’. I just hope the other lads don’t mind this junior fan joining them for the night! Meanwhile it’s a girly night for Emelia and I. We plan to watch fireworks from the balcony, wrapped up warm with a hot chocolate!

 Asa is off to watch Cardiff City with his daddy at a friend's house!
How cute is this hoody?! The baby’s pretty cute too ;-)