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!

Sadness yet Hope

Over the past week or so, the first line of this hymn has kept coming back to me time and time again: O Love that wilt not let me go”… However as I didn’t know the rest of the lyrics, I finally ‘googled’ it tonight. Oh, wow. This hymn could have been written by me if I was clever enough! It explains so much of how I am feeling (not all the time, but occasionally I allow the dark clouds to hang over my head) – the sadness, but also the hope and acknowledgement of God’s love, compassion and goodness.

Although it’s an old hymn, I love this new version by Indelible Grace – click here to listen.

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O Love That Wilt Not Let Me Go
George Matheson (1882)

O Love that wilt not let me go,
I rest my weary soul in thee;
I give thee back the life I owe;
That in thine ocean depths
Its flow may richer, fuller be.

O Light that followest all my way,
I yield my flickering torch to thee;
My heart restores its borrowed ray,
That in thy sunshine’s blaze
Its day may brighter, fairer be.

O Joy that seekest me through pain,
I cannot close my heart to thee;
I trace the rainbow through the rain,
And feel the promise is not vain,
That morn shall tearless be.

 O Cross that liftest up my head,
I dare not ask to fly from thee;
I lay in dust life’s glory dead,
And from the ground there blossoms red
Life that shall endless be.

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Some photos from Asa’s tummy time earlier this evening – he’s doing so well with this!

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