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!

Tiptoe To The Edge

Tiptoe to the edge

I saw this picture on a friend’s Facebook wall recently… (I can’t therefore credit the artist here, although I can see ‘Freya’ written in the corner). I really want a copy of this picture!

To me, it’s a picture of God and I. He is the daddy bird and I am the baby bird. Since Asa was born, life (for me, anyway) has been lived in a bit of a fog, with muddied emotions, hurting hearts and challenged faith. But through it all we have known and experienced God’s presence. One of the hardest parts of our journey so far has been acknowledging Asa’s hearing loss. Now we can put on Asa’s softband without getting upset, we can focus on moving forward. Our family is still rather new to the world of Down’s syndrome, but the world is still beautiful, Asa is beautiful, as is Emelia. God is patiently waiting to show me what’s on offer. I’m starting to think it’s time I launched myself, to take flight and soar with my Saviour.

The Softband

This is Asa, rocking his softband bone conductor hearing aid (we tend to just call it a softband for short!). He got it on Monday 12th November 2012. I haven’t been able to write about it until now…

Asa softband

To be honest, it was difficult to accept his hearing loss in the beginning, and then when he had the band fitted last week, I felt physically sick driving to the hospital – in fact I cried most of the way. I prayed that Jon would surprise me by waiting at the hospital for me, that he would be able to get the time away from work. But alas, I was alone with my boy, pretending I was cool as the proverbial cucumber…

I knew I was going to struggle, and I knew I was being silly… However, one week on and we now accept that this is a part of him – at least for a short while until his ears are a little bit bigger to have conventional hearing aids. Hopefully he can have little blue ones in support of Cardiff City FC – his daddy’s favourite team! I’d quite like him to have pink glittery ones, but somehow I don’t think Asa will thank me for that when he’s bigger!

Asa has a moderate bilateral conductive hearing loss. I know, it’s a bit of a mouthful!

–  ‘Bilateral’ means the hearing loss is in both ears. Unilateral would mean a one-sided loss.

–  ‘Moderate’ is self explanatory really; there are four levels of deafness – mild, moderate, severe and profound, each level referring to the lowest decibel a person can hear. The audiologists can tell that at the moment he struggles to hear high pitch quiet sounds, such as: ‘s’, ‘th’, ‘f’, ‘sh’. We think it’s amazing really that they can tell this already!! Praise God for advances in technology and the advancement of science (science and God aren’t in opposition but that’s another topic!).

–  ‘Conductive’ means that nerves seem to be working fine and it is ‘glue ear’ which is stopping the sound waves passing through the ear effectively. The audiologist did a tympanometry test which showed the ear drums were not able to move freely to conduct the sound effectively to the three little bones in the middle ear (the stapes, incus and malleus), which suggests a build up of fluid in the middle ear. Most children with ‘glue ear’ will grow out of it around the age of 6 or 7; however, children with Down’s syndrome tend to grow out of it later and a few never do. People with DS tend to have smaller nasal passageways and Eustachian tubes in the ear, so are more prone to conditions like ‘glue ear’ as well as respiratory illnesses.

Ear diagram

Above is a diagram of the whole ear, taken from www.patient.co.uk. Asa’s ‘glue ear’ is in the middle ear, so between the ear drum and the cochlear. If the softband aid or the behind the ear conventional aids aren’t effective, then other options could include grommets or eventually T-tubes.

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We are praying that even though Asa is only little, that this early hearing intervention will help in developing effective speech in the coming months and years. Only time will tell, so we’re not worrying about it right now… (well, we’re trying to leave it all in God’s hands, but those who know me well will know how much I can worry!). For those of you who wish to join us in praying for Asa’s hearing and speech development, let Jon or I know :-)

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Some info for you on Bone conduction hearing aids, taken from the NHS Choices website:

“Bone conduction hearing aids are recommended for people with conductive hearing loss or for those who can’t wear a more conventional type of hearing aid. Bone conduction hearing aids vibrate in response to the sounds going into the microphone.The part of the hearing aid that vibrates is held against the bone behind the ear (mastoid) by a headband. The vibrations pass through the mastoid bone to the cochlea and are converted into sound in the usual way. They can be very effective but can be painful to wear for long periods.”

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Asa 17 weeks

This photo was taken by Sian Hampson. We adore this baby’s smile!

Looking Back, Looking Up.

I am behind with this blog. I am still catching up from a while ago – I scribble down notes, or make a quick rough draft in Microsoft Word, and finalise it when I can. Part of the problem is that Jon and I can’t decide on a name for the blog! Get your act together Lizz!

[Author’s note: We finally decided on Down With Asa, one of the first we ever thought of! Funny yet frustrating]

Tonight I have been working on the timeline of Asa’s life so far, from the pregnancy through to now. Simultaneously, I have also been working on the pieces of the puzzle that made up the prenatal potential diagnosis of Down Syndrome, through to receiving the confirmation a few days after Asa was born.

As a result, it has been an emotional night reflecting on Asa’s journey through the pregnancy and those early weeks in the Neonatal Unit at UHW. It always happens when I’m working on the blog. Going back over those memories that would prefer to stay hidden in the deep, dark place of my brain.

Tonight I’ve been reliving the moment we found out there was a possible problem and the awful statistics given to us that are forever burned into my heart. 50% chance of a chromosome abnormality, 10% chance of a heart defect (but no chromosome abnormality), 15% chance the baby would not survive (e.g. miscarriage or being stillborn), 25% chance of no complications and a typical, healthy baby. When we were first given these statistics, I saw them every time I closed my eyes, in bright yellow lights. It was awful. Now I am thankful that these memories are fading, and that God comforts us.

“He [God] tends his flock like a shepherd:
He gathers the lambs in his arms
and carries them close to his heart;
he gently leads those that have young.”

~ Isaiah 40 v 11

So while those horrible memories and statistics are at the forefront of my mind again as I work steadily on Asa’s story, we can move forward in the knowledge that both our children are perfect, healthy, and so very precious… Also in the knowledge that we have an awesome God who never, ever leaves us, and who is gently guiding us.