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 :-)

Hearing Review – MAP

This morning we had Asa’s audiology Multi-Agency Planning (MAP) meeting at UHW. After a stressful time stuck in traffic and trying to park (one of the car parks was closed and it was absolute chaos – I was in tears!), I took Asa in to the hospital while Jon tried to park. I didn’t think he would be able to join me, but two minutes before we were called in, he arrived – phew!

I was a little nervous, as you might expect from me(!). This was our first MAP and it was all so new to us. Having Jon there with Asa and I was such a blessing. He is such a strength to me, a calming influence – my pebble. (I once called him my rock, and he replied that he didn’t think that was the case, and that he was more like a pebble than a rock, so it has become our little joke!).

We met with the hearing doctor, speech therapist, teacher for the hearing impaired and two audiologists. Most of the people we had already met and they were so friendly and welcoming. We discussed Asa’s hearing, whether he is wearing the softband regularly, what sounds he was making, the use of Makaton and any concerns or questions. Also Cath, the teacher, gave her report. At the moment, Asa’s favourite (read: only!) sounds (other than crying, giggling and wind!) are the ‘raspberry’ and a long vowel, ‘ahhh’. Everyone seemed pleased that Asa was making small progress with his sounds and Lowri, the speech therapist, even thought she heard a ‘b’ sound from Asa that we’d never picked up before. Subtle sounds aren’t easy for us amateurs to pick up on!

We asked Dr Roberts, the hearing doctor, whether Asa might now be suitable for conventional behind the ear hearing aids. Upon examination we were informed that Asa’s ears are still too small and so it’s not feasible. I must admit I was rather disappointed. The softband does help Asa’s hearing, but it’s hard work – it gives quite a lot of feedback when knocked or rubbed, especially if Asa is on the floor or in his highchair. I have to adjust it regularly as sometimes Asa pulls it, or it slips out of position. He also, somehow, manages to turn it off on occasions! But for now, it is the softband or nothing, and as we want to help Asa as much as we can, we’ll continue with it until a time when Asa’s ears are big enough for the alternatives.

The doctor suggested we do an impromptu hearing test because Asa was sat up with minimal support. Off we trotted to the testing room. I’m glad I didn’t know that this test was on the cards as I would probably have been very nervous and I’d have worried about it the night before! Asa sat on my knee and the audiologists looked for a response from Asa to show that he had heard a variety of sounds. When he heard a sound, he was quite consistent in his response – he stilled, eyes widened and if he liked the sound he would smile and move his feet. He seems to prefer high pitch noises such as ‘sh’ and ‘s’ and he smiled consistently upon hearing these type of noises.

The second test the audiologists did was a tympanometry – a test to see how freely the ear drum vibrates to conduct sound to the inner ear. Asa had one in September which showed ‘glue ear’ in both ears, resulting in a moderate hearing loss. Today’s test showed one ear ‘glue ear’ as expected, whilst the other ear showed some ear drum movement which implies there is less ‘glue ear’ than a few months ago. We know that ‘glue ear’ fluctuates (i.e. can get worse and improve throughout the year), but we also know we have a healing God! We’re praying the ‘glue ear’ gets less and less over the coming months and will remain that way!

We went back to the meeting room to discuss the results. Today Asa heard sounds at 45 decibels, wearing the softband. We were thrilled with this! ‘Normal’ speech level is around 50 to 55 decibels, so this test shows that Asa is probably hearing a very good range of different sounds needed for speech. It is interesting that Asa responded so well to the higher pitched ‘soft’ sounds such as ‘sh’ because previously the audiologists thought that this was the pitch of hearing he most struggled with. We are praising God for such a good hearing test today.

PRAYER POINTS:
If you are a Christian reading this blog and pray to God, then please join us in praying for Asa’s hearing, that the ‘glue ear’ would decrease and that his hearing would improve in order to develop good speech.

Some photos of Asa enjoying his tea later on that day…

P1090823 P1090824I think Asa is quite proud of the mess… He certainly looks very contented!!!

 

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!

Facing Reality

This evening, Jon and I (along with Emelia and Asa!) met with Dr Roberts in our home. Dr Roberts’ name has come up several times since Asa has been born, so it was nice to finally meet her. She is the children’s hearing specialist. She went through the summary from Asa’s hearing test a few days ago and explained things to us again about the high pitch sounds. Asa will have more hearing tests in the future and these will build up a more comprehensive picture of where Asa’s hearing actually lies. *Gulp!*

The options we have for helping Asa’s hearing:

1. No intervention yet; watch for signs Asa can/can’t hear, monitor the hearing loss;

2. Hearing aids, which would involve fortnightly visits to UHW for the first year or so to check the fit, get new moulds as necessary and check they are working effectively. This option is only possible if Asa’s ear canals are big enough!

3. Softband bone conductor hearing aid. This is a bit like a hair band with a single hearing aid attached which sit behind the ear / on the skull to conduct sounds through the bone to the cochlear. It is easier to use for little ones.

Dr Roberts said that she’d leave us to make a decision and would likely contact us in a week or so to have another discussion about the way forward. I love that there is no pressure and the doctors and audiologists are willing to listen to the parents. Part of me does not want any intervention – just let Asa be a little baby, let us just enjoy him, no more medical appointments; I want it to go away. Another part of me wants what is best for him and the desire for him to be able to fully hear everything. And yet another part of me is concerned for his speech development and wants immediate action to help him!!!! We’ve been told that Asa’s hearing may get worse over the winter months due to coughs, colds and general congestion, and that this worsening may be temporary or may gradually get worse. *Another gulp!*

I am still finding the fact that Asa has a hearing loss in both ears quite difficult to come to terms with. I know that it’s not the end of the world. I keep remembering my wise friend Emily saying that, “yes, there’s a problem, but at least there is a solution to this particular problem,” and she’s so right. This problem can be helped. Plus God is in control of it all anyway.

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Our little Superman Poser!

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Tonight I’ve had a fab time reading my Bible. I haven’t picked it up as much as I’d like lately, but I’m blessed when I do! God’s word, the Bible, is living and is relatable even after thousands of years! Tonight I have been reading Nehemiah:

“…Do not grieve, for the joy of the Lord is your strength”… (8v10)

“Stand up and praise the Lord your God, who is from everlasting to everlasting. Blessed be your glorious name, and may it be exalted above all blessing and praise. You alone are the Lord. You made the heavens, even the highest heavens, and all their starry host, the earth and all that is on it, the seas and all that is in them. You give life to everything, and the multitudes of heaven worship you.” (9v5-6)

Every now and then I re-discover (or discover for the first time) a gem hidden in God’s word. This is one of my favourite passages. Chapter 8v10 is a rebuke. Those who were listening to Ezra and the Levites reading and teaching the Law realised the severity of their sins and were deeply grieved by them; but Nehemiah is saying to the people not to grieve their past sins, God has forgiven them – instead focus on God and He will strengthen us and be our joy. How apt for me. I find it hard to let go of the sin in my life and it upsets me that I continually fail God and those I love. But the joy of the Lord is my strength! He graciously upholds me when I mess up, which I do, with alarming frequency.

I love chapter 9, especially verses 5-6. It’s a reminder that God made (and makes) everything, He alone gives life. God didn’t make a mistake when He created our little Asa, nor did He with Emelia or any baby born. Nehemiah 9 is about the people of Israel, God’s special people, letting God down again and again. Yet God forgives time and again! I’m reminded of myself here, with alternating between faith and fear; sadness and joy; hope and despair. God understands and is faithful to forgive me, just like He did with the Israelites. This chapter demonstrates the compassion, grace, forgiveness, love and mercy of God…

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Oh God, how awesome You are that you love us so much! I praise You for being willing to forgive me even when I least deserve it. Not just once, but time, after time, after time!!!! I’m thankful for your grace and mercy, for You loving me, a broken and weak woman!