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.

Makaton Training

Today, Jon and I started our formal Makaton training. We have completed part one, and the second part is next Tuesday. I loved it! I don’t want to sound like I am bragging, but I find it quite easy to pick up Makaton, as I do in general with languages. Some signs are a bit obscure, but a lot of them make sense. The challenge now is to remember these signs, sign appropriately and sign consistently to Asa. I do feel a bit under pressure as the main carer of Asa. Jon doesn’t find Makaton as natural as I do, so I’m trying to gently encourage him… (Ok, more like on the spot tests, poor man!!)

A few people have asked me why we’re signing with Asa. Some people assume it is because of his hearing loss. There are a few reasons, and I’d love to share these with you, as well as some background information.

Makaton is a sign, symbol and speech language programme to help children and adults with their communication. Using signs does not replace speech, but used alongside normal speech, in spoken word order (unlike  BSL (British Sign Language), which uses a different word order). Using signs can help children with no or limited speech or speech that is unclear. Symbols can also be used to support communication in many different ways. Symbols match to a sign, and can be used to help those with no or limited speech or who are unable or prefer not to sign.

With BSL, you sign every word in the sentence. With Makaton, you generally only sign the key words. So in a sentence like “Look at the ball”, you would say the whole sentence but just sign ‘look’ and ‘ball’. It’s very important to remember to speak all words out loud and not just silently sign.

Jon and I would love to be able to teach some friends and family some signs to use with Asa. Please ask us if you have any questions or want to know more. It is our hope that we can host an informal coffee morning at our church to show a few signs to friends there, particularly those that volunteer in the crèche or Sunday school.

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You can get free Makaton resources from the Makaton charity website. Friends and family, please click HEREto browse the selection (PDF files). These are usually seasonal, plus some nursery rhymes and booklets.

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The following information is from the Makaton charity website:

Being able to communicate is one of the most important skills we need in life.  Almost everything we do involves communication; everyday tasks such as learning at school, asking for food and drink, sorting out problems, making friends and having fun.  These all rely on our ability to communicate with each other.

Makaton is a language programme using signs and symbols to help people to communicate.  It is designed to support spoken language and the signs and symbols are used with speech, in spoken word order.

With Makaton, children and adults can communicate straight away using signs and symbols.  Many people then drop the signs or symbols naturally at their own pace, as they develop speech.

For those who have experienced the frustration of being unable to communicate meaningfully or effectively, Makaton really can help.  Makaton takes away that frustration and enables individuals to connect with other people and the world around them.  This opens up all kinds of possibilities.

Makaton uses signs, symbols and speech to help people communicate.  Signs are used, with speech, in spoken word order.  This helps provide extra clues about what someone is saying.  Using signs can help people who have no speech or whose speech is unclear.  Using symbols can help people who have limited speech and those who cannot, or prefer not to sign.

Makaton is extremely flexible as it can be personalised to an individual’s needs and used at a level suitable for them.  It can be used to:

  • share thoughts, choices and emotions
  • label real objects, pictures, photos and places
  • take part in games and songs
  • listen to, read and tell stories
  • create recipes, menus and shopping lists
  • write letters and messages
  • help people find their way around public buildings

Today over 100,000 children and adults, use Makaton symbols and signs.  Most people start using Makaton as children then naturally stop using the signs and symbols as they no longer need them.  However, some people will need to use Makaton for their whole lives.

Happy First Birthday, Archie and Ethan!

Today, we were invited to celebrate our friends’ twins’ birthdays. Archie and Ethan are little miracle babies. Their mum and dad endured a difficult pregnancy, full of uncertainties – they even faced the possibility they could lose one or both babies. These babies were covered in prayer by many people and God brought these precious lives through various life-saving interventions, out of danger, and they were delivered safely a few weeks early – tiny, but fighting and stronger than expected. After only one week, mum and new twin babies were allowed home. How amazing is God?! He continues to answer prayer so mightily! Today we got to celebrate their first birthday and thank God for their lives.

 

20130511_094853Asa was given this adorable little outfit by his great Auntie Sarah. I love the slogan, ‘Perfect Little Person’. People may look at our baby and see a chromosome disorder, but we look and see Asa – our gorgeous, funny, happy little boy. He isn’t perfect because we all have sin in our life, but he is perfectly ours, perfectly formed and perfectly loved by a Creator God who doesn’t make mistakes.

20130511_164508Asa loved watching the other children bouncing away.

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Evie is Archie and Ethan’s big sister – she is almost three. I’ve heard it said that ‘friends don’t count chromosomes’ – Evie certaintly isn’t bothered as she cuddles Asa and plants a gentle kiss on his forhead!