28th February 2015
My baby Princess has turned one! 525,600 minutes ago (or thereabouts), we welcomed her into this world after a trouble free pregnancy for her, although a pretty painful one for my hips! She was born in the caul (in her membranes) which is pretty rare and she definitely deserved that entrance as she is one in a million!
The news that our Princess was profoundly deaf stunned us emotionally and it's probably only now that we are beginning to work through how we feel and how her deafness effects us. However, despite all the negativity surrounding the diagnosis of a "special need", we are daily astounded by her joyfulness, intelligence and progress.
The Princess has a special talent for making people fall in love with her, I believe it is mostly to do with her amazing eye contact, she has "Deaf Eyes" which take in everything. You cannot sneak up on her or try to hide something when she is around, she sees it all and there no fooling her, even at this young age. Often people don't believe us that she is deaf because she is so receptive to the conversation and behaves so appropriately at all times, especially when people are telling funny stories - it's like she can feel which emotion to portray and she does it spectacularly.
Her first six days in the hearing world (with her CIs), has been astonishing. She can now hear clapping, clicking fingers, shouting, knocking and banging pots & toys. There may also have been reactions to squeaky doors, whistling and the Hoover. Although she hasn't shown emotion towards hearing any sounds yet, she is very curious and wants to know where the sound comes from and what it is, which is amazing progress and for which we are constantly thankful. We continue to hope that our Princess will receive enough hearing to hear speech so we can tell her (as well as sign to her), that we love her and maybe even one day we might be able to hear her beautiful voice say it in return!
Today, we sung & signed the "Happy Birthday Song" to Princess and she loved it all, I hope she maybe heard a little of it, but I will never know. What I do know is that we have really learnt the value of communication and I am so proud of my boys (7, 5 & 3) who are learning to sign for their sister too.
Today was an exhausting, but very special day as we celebrated her first birthday with family and friends - some quiet and relaxing celebrations at home, with some manic, ear-bursting celebrations at her party (part of which actually required her implants to be switched off!).
Here's to many more happy & healthy years to come and if she continues the way she has begun, our little Princess will have an amazing future ahead of her.
We love you, little Princess xx
Saturday 28 February 2015
Thursday 26 February 2015
Wow! What a day!
26th February 2015
I am amazed already by my little Princess. Four days activated and she responded repeatedly to her Grnadad making a sound behind her, she stopped playing and turned to him consistently each time. We are amazed by her!
As if that wasn't enough, later this afternoon, she was showing off her signing skills. In BSL I asked her where the lights were and she replied in sign by showing me the ceiling lights which were on in the kitchen. She signed "lights on" several times and showed my hubby them too when he asked.
People told us that CIs were miracles and we are already starting to see why they say it. I know that our journey will not always be smooth or easy, but we are loving the start of the ride!
I am amazed already by my little Princess. Four days activated and she responded repeatedly to her Grnadad making a sound behind her, she stopped playing and turned to him consistently each time. We are amazed by her!
As if that wasn't enough, later this afternoon, she was showing off her signing skills. In BSL I asked her where the lights were and she replied in sign by showing me the ceiling lights which were on in the kitchen. She signed "lights on" several times and showed my hubby them too when he asked.
People told us that CIs were miracles and we are already starting to see why they say it. I know that our journey will not always be smooth or easy, but we are loving the start of the ride!
Wednesday 25 February 2015
Happy International Cochlear Implant Day
25th February 2015
Well since it's International Cochlear Implant Day, I thought that I would check out some historical info on CIs (Cochlear Implants) and was very surprised at what I found.
Electrical stimulation of the auditory nerve began back in the 18th Century with Alessandro Volta, who connected a battery to two metal rods and inserted them into his ears! Further attempts occurred during the 18th & 19th centuries, showing continuous improvements, but no one could yet find a satisfactory solution to helping the hearing of those who were profoundly deaf.
Throughout the 1930s & 40s, interest grew and many more experiments were carried out, increasing as the years went on: 1950, 1957, 1964, 1966, 1971 & 1976 all saw research projects developing the idea of artificial electrical stimulation of the auditory nerve.
In 1972 the speech processor was developed and produced great results, leading to 1000s of devices being fitted in the 1970s & mid-80s. 1980 ensured access to sound by children, when the age limit criteria was lowered from 18 years to 2 yeas of age.
1984 saw the introduction of multi channel devices, increasing sound and speech perception for users.
Since then, development has produced very successful devices, producing high levels of sound recognition and speech perception amongst the Implant community. Results for patients now commonly include the development of normal speech and language and hearing test results surpassing those of their hearing peers! Many implanted children are now schooled in mainstream classrooms with minimal assistance required for them to reach their full potentials.
On a personal note, I am forever grateful for the gift of hearing which we have been able to give to our profoundly deaf princess, cochlear implants are a technological miracle and even two days after her activation we are already seeing results.
Today, we increased our Princess to program 2, increasing the volume inputted by 3%, which is obviously very gradual to allow her to adjust to this new sense and also hopefully prevent any fear or pain caused by excessive noise. Although she can still only hear very loud noises, we noticed more reactions today - knocking against wood, banging the saucepan and bashing plastic toys together all seemed to illicit responses today. The exhaustion however, continues and Princess is needing long naps throughout the day and extra sleep at night, shortening the time she has for listening, but this will pass and I have every faith in her ability to learn to listen & discern sound from her environment.
I do however, want to emphasise that our Princess is still Deaf and always will be.
Whilst CIs allow the user to hear when wearing the devices, they revert to their previous level of hearing once the devices are removed at various points throughout the day e.g. bath/shower, swimming, humid environments or bedtime. We desperately want to make our family bilingual (English & BSL), in order that we can always fully communicate with our Little Princess whether she is wearing her "Magic Ears" or not. My blog will touch on the challenges of hearing families learning BSL for a deaf child and how we will try to integrate into the Deaf community to ensure that our Princess will have links with both Deaf and Hearing peers, in order that she can decide herself how she wants to communicate in the future.
Well since it's International Cochlear Implant Day, I thought that I would check out some historical info on CIs (Cochlear Implants) and was very surprised at what I found.
Electrical stimulation of the auditory nerve began back in the 18th Century with Alessandro Volta, who connected a battery to two metal rods and inserted them into his ears! Further attempts occurred during the 18th & 19th centuries, showing continuous improvements, but no one could yet find a satisfactory solution to helping the hearing of those who were profoundly deaf.
Throughout the 1930s & 40s, interest grew and many more experiments were carried out, increasing as the years went on: 1950, 1957, 1964, 1966, 1971 & 1976 all saw research projects developing the idea of artificial electrical stimulation of the auditory nerve.
In 1972 the speech processor was developed and produced great results, leading to 1000s of devices being fitted in the 1970s & mid-80s. 1980 ensured access to sound by children, when the age limit criteria was lowered from 18 years to 2 yeas of age.
1984 saw the introduction of multi channel devices, increasing sound and speech perception for users.
Since then, development has produced very successful devices, producing high levels of sound recognition and speech perception amongst the Implant community. Results for patients now commonly include the development of normal speech and language and hearing test results surpassing those of their hearing peers! Many implanted children are now schooled in mainstream classrooms with minimal assistance required for them to reach their full potentials.
On a personal note, I am forever grateful for the gift of hearing which we have been able to give to our profoundly deaf princess, cochlear implants are a technological miracle and even two days after her activation we are already seeing results.
Today, we increased our Princess to program 2, increasing the volume inputted by 3%, which is obviously very gradual to allow her to adjust to this new sense and also hopefully prevent any fear or pain caused by excessive noise. Although she can still only hear very loud noises, we noticed more reactions today - knocking against wood, banging the saucepan and bashing plastic toys together all seemed to illicit responses today. The exhaustion however, continues and Princess is needing long naps throughout the day and extra sleep at night, shortening the time she has for listening, but this will pass and I have every faith in her ability to learn to listen & discern sound from her environment.
I do however, want to emphasise that our Princess is still Deaf and always will be.
Whilst CIs allow the user to hear when wearing the devices, they revert to their previous level of hearing once the devices are removed at various points throughout the day e.g. bath/shower, swimming, humid environments or bedtime. We desperately want to make our family bilingual (English & BSL), in order that we can always fully communicate with our Little Princess whether she is wearing her "Magic Ears" or not. My blog will touch on the challenges of hearing families learning BSL for a deaf child and how we will try to integrate into the Deaf community to ensure that our Princess will have links with both Deaf and Hearing peers, in order that she can decide herself how she wants to communicate in the future.
Tuesday 24 February 2015
Exhausted Princess
24th February 2015
This morning was relaxing - visiting some family & shopping for a certain little Princess's birthday which is coming very soon.
Today, we saw sound reactions to the kitchen bin slamming, banging pots and pans and also knocking on the dining room table. We are amazed already and it's only one day post activation!
However, this listening must take it's toll, as Princess was totally exhausted by this afternoon and slept for a few hours, got up, had a drink, played with her brothers, ate dinner and went back to bed. We had to waken her at 7.30pm for a bedtime bottle and to put on some PJs to make her more comfy. Needless to say, she went straight back to bed and is far away in the land of dreams as I write.
Tomorrow is the anniversary of the first cochlear implant, 60 years ago - Wow!
This morning was relaxing - visiting some family & shopping for a certain little Princess's birthday which is coming very soon.
Today, we saw sound reactions to the kitchen bin slamming, banging pots and pans and also knocking on the dining room table. We are amazed already and it's only one day post activation!
However, this listening must take it's toll, as Princess was totally exhausted by this afternoon and slept for a few hours, got up, had a drink, played with her brothers, ate dinner and went back to bed. We had to waken her at 7.30pm for a bedtime bottle and to put on some PJs to make her more comfy. Needless to say, she went straight back to bed and is far away in the land of dreams as I write.
Tomorrow is the anniversary of the first cochlear implant, 60 years ago - Wow!
Monday 23 February 2015
The first day of the rest of our lives
23rd February 2015..... It's a date which will be etched on my mind for the rest of time. It's the date my Little Princess first heard sound, through the miracle of cochlear implants.
Despite the fact that today started as any other Monday - packing school bags, hurrying the kids to eat their breakfast and get dressed for school, making packed lunches, sorting PE kits & school money envelopes. We managed to keep organised and leave our eldest two boys off at school, then our third son was taken to his grandparents house, before we travelled to the implant centre for what could turn out to be the most important day of our lives.
Princess is of course oblivious to everything, she will be 1 year old in a few days and she was born profoundly deaf in both ears, meaning that she couldn't even hear a jet engine if she was standing beside it. We tried hearing aids, but they were not powerful enough, so we all began learning BSL (British Sign Language) so that we could talk to our Princess. I am attending night classes to learn BSL and then I teach my hubby & kids what I have learned. I also take princess and the youngest of her brothers (3yrs old) to Sign2Music, where we learn more child-focussed signs, suitable for nursery rhymes and story time.
The last 12 months have been a rollercoaster ride for our family, Princess arrived a few days late after a non-eventful fourth pregnancy, looking absolutely perfect and after a few stumbles, I now realise she still is. Fourth babies get treated a little different and their mummies are allowed to make a few more decisions than perhaps is possible with those less experienced parents - meaning that we all went home in the evening after Princess's arrival at 10.51am. Of course that meant we didn't get screened for the newborn hearing test before we left.
Ten days of perfection followed, before we attended our first hearing test, only to be told, she had failed, but it was probably due to her ears still being wet after birth. We were then referred to the hospital for further testing, which happened a few weeks later. At this stage, we weren't worried at all, we were convinced we could see responses to sound, so we were sure Princess would pass her next test.
But...... She didn't.
Again, we assumed, it was nothing to worry about, kids fail tests all the time, then they pass the retest.
But...... She failed that too, in fact this time we were told that Princess had not shown any responses to any of the tests she had taken. I was on my own at the hospital with her and I didn't really understand what they were telling me. I knew it meant she had a problem with her hearing, but I didn't have a clue what lay ahead of us.
After managing to tell my husband, my parents & my in-laws, we realised we needed more information and managed to find support from NDCS (National Deaf Children's Society) thankfully! Which lead us to a local support group, Sound Friends. Talking to other parents helped us to feel supported and to realise that even if Princess could never hear a sound, she could still realise all her aspirations and lead a full life. We also found out information on the journey that lay ahead for us as parents, a family and integrating the Deaf and Hearing communities.
Anyway, over the next few months, we attended numerous NDCS & Sound Friends events allowing us to gain knowledge about deafness and options open to us. We attended the Regional Implant Centre several times for testing, including an MRI/CT scan at a local hospital which required a General Anaesthetic (something which every parent dreads).
Thankfully all the testing was completed successfully and we were told on 1st December 2014 that our Princess was a suitable candidate for cochlear implants - hurray!
Christmas was a wonderful time for us all, knowing that our family was complete and happy, all under one roof, it was all we had ever dreamed of. The only thing that was wrong was that our little Princess couldn't hear us, but she was young & she loved to babble so most people didn't notice there was a problem at all!
The New Year came and we were given 5th January 2015 as our date for bilateral implantation. Unfortunately this had to be postponed due to an infection risk, despite the total anticlimax, we were grateful that our daughter was not going to be exposed to any unnecessary risks. We were rescheduled for 19th January 2015, when Princess successfully underwent surgery for bilateral implantation of cochlear implants. She recovered very well and we were so happy with her progress, but we're always wondering if we had made the right choice for our Princess.
On 9th February, we were given all our equipment and shown how to maintain everything. From this day, Princess began wearing her external devices to allow her to get used to wearing them, although they would not be "switched on" until 23rd February. The next two weeks went very well, she didn't seem to mind wearing all her equipment and continued to show progress in her babbling and signing.
And that, is how we arrived at today, 23rd February 2015 - activation day!
Today was one of those days that although you know it's important, emotional, life-changing, you can't decide how you feel about it because it hasn't quite sunk in yet. Princess performed perfectly, reacting to each of the twelve frequencies in ear each and even turned to a drum and then investigated the hand dryers in the bathrooms later.
Now, it's time for much needed sleep after an exhilarating & exhausting day.
Goodnight xx
Despite the fact that today started as any other Monday - packing school bags, hurrying the kids to eat their breakfast and get dressed for school, making packed lunches, sorting PE kits & school money envelopes. We managed to keep organised and leave our eldest two boys off at school, then our third son was taken to his grandparents house, before we travelled to the implant centre for what could turn out to be the most important day of our lives.
Princess is of course oblivious to everything, she will be 1 year old in a few days and she was born profoundly deaf in both ears, meaning that she couldn't even hear a jet engine if she was standing beside it. We tried hearing aids, but they were not powerful enough, so we all began learning BSL (British Sign Language) so that we could talk to our Princess. I am attending night classes to learn BSL and then I teach my hubby & kids what I have learned. I also take princess and the youngest of her brothers (3yrs old) to Sign2Music, where we learn more child-focussed signs, suitable for nursery rhymes and story time.
The last 12 months have been a rollercoaster ride for our family, Princess arrived a few days late after a non-eventful fourth pregnancy, looking absolutely perfect and after a few stumbles, I now realise she still is. Fourth babies get treated a little different and their mummies are allowed to make a few more decisions than perhaps is possible with those less experienced parents - meaning that we all went home in the evening after Princess's arrival at 10.51am. Of course that meant we didn't get screened for the newborn hearing test before we left.
Ten days of perfection followed, before we attended our first hearing test, only to be told, she had failed, but it was probably due to her ears still being wet after birth. We were then referred to the hospital for further testing, which happened a few weeks later. At this stage, we weren't worried at all, we were convinced we could see responses to sound, so we were sure Princess would pass her next test.
But...... She didn't.
Again, we assumed, it was nothing to worry about, kids fail tests all the time, then they pass the retest.
But...... She failed that too, in fact this time we were told that Princess had not shown any responses to any of the tests she had taken. I was on my own at the hospital with her and I didn't really understand what they were telling me. I knew it meant she had a problem with her hearing, but I didn't have a clue what lay ahead of us.
After managing to tell my husband, my parents & my in-laws, we realised we needed more information and managed to find support from NDCS (National Deaf Children's Society) thankfully! Which lead us to a local support group, Sound Friends. Talking to other parents helped us to feel supported and to realise that even if Princess could never hear a sound, she could still realise all her aspirations and lead a full life. We also found out information on the journey that lay ahead for us as parents, a family and integrating the Deaf and Hearing communities.
Anyway, over the next few months, we attended numerous NDCS & Sound Friends events allowing us to gain knowledge about deafness and options open to us. We attended the Regional Implant Centre several times for testing, including an MRI/CT scan at a local hospital which required a General Anaesthetic (something which every parent dreads).
Thankfully all the testing was completed successfully and we were told on 1st December 2014 that our Princess was a suitable candidate for cochlear implants - hurray!
Christmas was a wonderful time for us all, knowing that our family was complete and happy, all under one roof, it was all we had ever dreamed of. The only thing that was wrong was that our little Princess couldn't hear us, but she was young & she loved to babble so most people didn't notice there was a problem at all!
The New Year came and we were given 5th January 2015 as our date for bilateral implantation. Unfortunately this had to be postponed due to an infection risk, despite the total anticlimax, we were grateful that our daughter was not going to be exposed to any unnecessary risks. We were rescheduled for 19th January 2015, when Princess successfully underwent surgery for bilateral implantation of cochlear implants. She recovered very well and we were so happy with her progress, but we're always wondering if we had made the right choice for our Princess.
On 9th February, we were given all our equipment and shown how to maintain everything. From this day, Princess began wearing her external devices to allow her to get used to wearing them, although they would not be "switched on" until 23rd February. The next two weeks went very well, she didn't seem to mind wearing all her equipment and continued to show progress in her babbling and signing.
And that, is how we arrived at today, 23rd February 2015 - activation day!
Today was one of those days that although you know it's important, emotional, life-changing, you can't decide how you feel about it because it hasn't quite sunk in yet. Princess performed perfectly, reacting to each of the twelve frequencies in ear each and even turned to a drum and then investigated the hand dryers in the bathrooms later.
Now, it's time for much needed sleep after an exhilarating & exhausting day.
Goodnight xx
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