Hearing Test, April 2013

Why do I always get nervous attending the hospital for Asa’s hearing tests?!!

The old familiar ‘sicky stomach syndrome’ reared its head again as I drove to UHW, even though Jon and I suspected Asa’s hearing had improved. Walking in to the clinic, I was greeted by one of the audiologists who remembered Asa by name, immediately putting me at ease. Three minutes later we were called through to the testing room.

This time, the audiologists wanted to test Asa’s hearing without the use of the softband bone conductor, so they could build up a picture of the exact nature of his hearing loss. Today, he responded to sounds at 45 dB (decibels), which was the same as the last time in January. The difference between the two tests was that in January, Asa had worn his softband and today he didn’t. This shows that there is some improvement, however small, in Asa’s hearing. Normal speech is around 55 dB, although some speech sounds are quieter, such as ‘s’, ‘sh’, ‘th’, ‘f’ and higher in frequency. In other words, at the present time, Asa is responding to most sound levels and mid-range frequencies. Jon and I ‘test’ him at home regularly – one of us stands behind him, out of sight, and whisper ‘s’ or ‘sh’ and watch Asa’s reactions! He’ll be getting fed up of us sometimes. In fact, sometimes he doesn’t even respond to loud calls of ‘ASA’ – we think he’s protesting our amateur testing! :-)

The tymp test also showed his left ear is currently free of congestion (glue ear), but the right ear still remains congested although there may have been a tiny improvement. Glue ear can fluctuate though, particularly in Winter months. However, for now, we are praising God for these small improvements.

Asa’s next hearing test is the morning of July 16th.

Prayer points:

1. Praise God for the improvement in Asa’s hearing!

2. Pray that Asa’s hearing will continue to improve, that the glue ear completely resolves.

3. Pray that Asa’s speech will not be negatively impacted by his hearing loss.
(Other factors may affect speech too, so please join us in praying for Asa’s speech in general, that he would have good muscle tone to form the correct shapes and would be able to effectively communicate with everyone and be understood).

4. Pray that Jon and I would learn Makaton effectively and put it in to practice – we’re on a course in May – I’m excited!

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Thank you so much for your continued prayers for our little family :-)

Milestone Reached!

A few days ago, on the 6th March 2013, my baby boy, Asa, rolled over for the first time from his back to his stomach. The first time he attempted this new manoeuvre, he got his little arm stuck and boy, he howled! On the second attempt, he was more deliberate and intentional – and over he went easily, clearly pleased with himself. I was thrilled to have been there to witness this!

Asa loves tummy time, he always has done, and he is now rolling over almost every opportunity he gets – great fun during nappy change time or getting dressed… Little monkey!

So why am I writing about my baby rolling over? It’s a standard milestone right? Well yes, it is. But you see, Asa is 8 months old and he has Down’s syndrome. He has low muscle tone in general, particularly in his core and in his legs. So whilst this seems like an everyday ‘normal’ milestone – and it is – for Asa it’s a bigger deal, a bigger celebration. It has taken him a bit longer, a bit more determination and it’s been harder work to get to this point.

I am one proud mummy! I am looking forward to sharing with you all of Asa’s future achievements and milestones. We may have even heard Asa utter a few sounds this week, it’s difficult to pick up on these subtle sounds but I think we may have heard a ‘b’ and ‘n’ sound.

So, what milestone will be next, sitting? Babbling? Self feeding? Watch this space!!!!

Prayer points for Asa:

– Praise God for Asa’s new rolling skill.
– Pray his core muscles get stonger so he can learn to sit.
– Pray for his hearing to continue to improve – that God would fully heal him.
– Pray for his speech – that he’d start to ‘babble’ soon.

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!