Happy New Year – 2013

Today we went to Southerndown for a picnic. As it was too cold and windy to eat outside, we ate in the car. It was a bit awkward, especially feeding Asa, but it was an adventure! After our picnic, we thought we would move the car nearer to the beach, but it wouldn’t start. Some kind people helped up push it and Jon got it going again. Afraid that it wouldn’t start again, we decided to keep the car running and one of us stay in the car with Asa (it was freezing!) while the other took Emelia on the beach. Jon went out first and then we swapped. The sun was setting as we were walking on the beach. Sunsets and beaches are made for each other, like jelly and ice cream, hands and gloves, salt and vinegar – like Jon and I, and our two children. We just all go together.

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Today has been a lovely day, just the four of us spending quality time together, eating and laughing together and making memories… A great way to start the year! The rest of January will be busy – Asa has ten appointments, some of which are the new ‘Speak and Learn’ communication / speech therapy group for children with Down’s syndrome starting in a couple of weeks. Other appointments include ENT (Ear, Nose and Throat specialist) for Asa’s stridor, audiology review (MAP – multi-agency planning), Portage (psychology / child development service), Community Paediatrician, and physiotherapy to name a few!

We are looking forward to seeing what God will bring in 2013. We are feeling positive about the future – we’ve definitely ‘turned the corner’ and life is a lot less scary (for now!). We are counting our blessings and praising God for his goodness and faithfulness this far, and which we know will continue always.

Happy New Year, friends!

Asa’s First Physiotherapy Session

Today Asa had his first physiotherapy session at Llandough Hospital Children’s Centre. One of the most common characteristics of Down’s syndrome is hypotonia, or low muscle tone. This is why some babies with DS are ‘floppy’ at birth and in to their first few months. Low muscle tone doesn’t mean the muscles are necessarily weak, just that they are a bit more relaxed than they should be!

Clare, Asa’s special needs health visitor, put an automatic referral in for physio for him when she first came out to see us. I think most children with DS get an automatic referral to physio. Low muscle tone generally makes it harder for our little one’s to achieve some of the typical milestones in a child’s life, such as holding their head up steady, rolling over, sitting, crawling, standing and walking. It can affect any muscle and all muscles. You can even have low muscle tone in and around your mouth affecting speech, tongue protrusion and swallowing. The doctor has said this is probably the reason for Asa’s severe reflux. However with early support from trained professionals such as physiotherapists and speech and language therapists will give Asa the help he needs to reach these developmental milestones, and he will reach them – just in his own time.

This morning’s session went well. The physio has said that Asa’s tone is average for a child with DS, so it’s not great, but it’s not the worst she’s seen. She has told us that Asa has ‘very low’ muscle tone in his legs, which we already knew… Don’t worry Asa, we’ll work on that!!! We have been given some exercises to do with Asa, such as putting him on his side to play with a toy, bringing his hands to his feet and lots of tummy time, essential for all babies, but more so for babies with DS!

We are looking forward to working with our physiotherapist to help Asa’s muscles develop more strength, tone and coordination. If you ask Emelia why we go to physio for Asa, she’s tell you its because it will help Asa get stronger. She is such a bright little girl for a two and a half year old!

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Prayer points for our Christian friends:

– Pray for Asa’s muscles in general…

– Pray for the muscles in Asa’s abdomen, that he would be able to soon roll over and sit up

– Pray for the muscles in Asa’s legs and feet, that Asa would be able to crawl, walk and run well

– Pray for the muscles in Asa’s arms and hands, that he would soon be able to hold a toy and start reaching out for items in front of him

– Pray for the muscles in and around Asa’s mouth, that he would be able to develop effective communication and would soon start to make the usual baby babble noises

– Pray for the stomach muscles, that Asa’s reflux would soon disappear completely without medication – for God’s healing.

Thank you to every one of you who have prayed for Asa and our family. We’re really grateful.

Lizz & Jon x

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My handsome husband and beautiful children on a recent family trip to the Little Blue Deli in High Street, Barry. The LBD is a wonderful little place full of charm, good food and friendly staff. If you’re ever in this area, it’s well worth a visit. The American breakfast is simply wonderful…. Mmmm!

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Emelia’s favourite activity that night? Launching herself off the bottom step!