Our Family

Our Family

Friday, 15 July 2016

All About The Boy

Its been a busy year so far for us. Lots of different things going on I could update you on but as the title suggests this particular post isn't about Robyn. It's about her brother Tyler.

It has been a really busy time for Tyler. He has finished up nursery now forever, which went very well. His teachers were all impressed with his reading skills and had a lot of very sweet things to say about him at his graduation ceremony. In typical Tyler fashion he was sure to tell us about his concerns for the nursery staff and how he was sure they would be sad once he was gone. It seems to have hit him a bit more in the last few weeks though now his holidays have begun and there have been a few occasions of him asking for his nursery friends or teacher.

We have managed to keep him fairly distracted though. He is very excited about starting school in August and has been to try on and buy his school uniform and shoes now. He knows his birthday is coming up and he is very excitedly looking forward to our holiday trip to London and LEGOLAND that we have planned. He has become a bit lego obsessed since xmas so it will be fantastic for him there. His other loves right now are ghostbusters and Ninjago so making for some very exciting lego building.



While these are all great things they aren't the point of the post. Tyler has had eating issues since around 20 months of age. Now at (almost) age 5 they continue. He is now back under the care of a consultant and dietician. Both of whom have exhausted their arsenal of helplines. He has been referred to CAMHS. Unfortunately in our area has a very long wait time to be seen. Tyler had his most recent appointment with his consultant yesterday and he has decided that Tyler is on the verge of needing to be admitted to deal with these issues. We argued that we couldn't cancel LEGOLAND so he has deferred a little and we have been given a month to see if an appointment at CAHMS can be found then he will be looking to admit him to our local hospital where we spent all those lovely months with Robyn. These kids like to keep me on my toes.



Its just another thing we need to look out for with Tyler as he moves into  school. We already have plans to discuss his homelife with his teacher at some point so she can get some idea of how it is for him. Not a lot of people see the knock on effect of being a young carer sibling, on his life. Having done some research into it recently though the figures for young carers falling behind at school due to their home situation are quite scary and the key in that seems to be teachers being unaware. And it seems of course like he doesn't do that much in the way of caring of course. He isn't changing nappies or bathing his sister for example but all the extra effort he puts into translating her signing for someone, being patient with her when she interferes with his toys/games, catches her when she is falling or even doesn't mind her grabbing at him all the time. All these little things add up. Tyler has developed an aversion to being touched by other children or having them in his space unless he initiates it as Robyn is always all over him, This came out in harmful ways several times at nursery.

One of the biggest thing that no one sees is the effect of Robyn's sleep patterns on Tyler. The night parties that are part of CHARGE can be disturbing to the sleep of all in the house. Most of all Tyler's. This is especially important to pass on to his teachers as its entirely unrealistic to expect he will be fully functioning and ready to learn on days when his sleep has been disturbed through the night. Understanding of his home life means he should be given a little leeway rather than being chastised over it. Other things as well may need to be considered like homework might not always be completed on time for example. If Robyn or Tyler have after school appointments at hospital that run late it may not always give us time to do things for the next days class. One of the key thins young carer groups always make clear is that carers should have a bit of leeway again on completion deadlines. Obviously this might not be a huge deal in the early days but may become more of an issue as time goes on.

So lots of scary and exciting times ahead for the young Mr. T. But to look at him playing with his Lego you would never know he had a care in the world.


Monday, 11 January 2016

Tribute to a Star. (No, not Bowie)

I do of course recognize the big whole left in the world by Bowie passing today but this post relates to someone I will miss much more. Someone who played a major role in my life by simply being herself. 

I don't tend to like new people, I am usually suspicious and wary. It tends to take a while for me to decide if I like someone, some of my best friends were people, who on first meeting I found irritating in some way. 

Chris-Ann was not one of those people. I met her at a toddler playgroup I took Tyler too when he was very young. There was nothing not to like about Chris-Ann, my very first impression and memories were a mad mop of blonde curls, the biggest smile you've ever seen and the craziest socks. The socks all had individual little spaces for each toe, and they were the craziest brightest pattern I have ever seen on socks. We attended that playgroup for a lot of months and every week she would wear another pair of these individual toe space socks. It became a running interest to me to see each week what kind of socks Chris-Ann would be wearing.

During that playgroup, (the original Rhyme and Sign before it moved to DDCA), in the library, I got my first ever introduction to Makaton. It seemed like a bit of fun at group and baby signing was meant to be good for Tyler's communication so we paid immense attention. Chris-Ann each week taught us various songs and made signing look so easy, my personal favorite was a song about a bunny digging his garden, she always said it was her favorite and would become very animated while singing it. Chris-Ann was also the very first person I ever heard say the words 'Mr. Tumble'. She was an avid fan.

During these groups Chris-Ann would also become very animated talking about her daughter, Andi-Mae. Andi-Mae was born with Down Syndrome, had struggled with early speech development and had found signing with Makaton a lifeline in communicating with her family. Chris-Ann told a particularly touching story of the day Andi-Mae first signed ball to her and how amazing it was to have her communicate that way. I had never met a parent of a child with Downs before (how sheltered was I back then?) and was amazed that they both seemed so full of life and happy and normal.

Had it not been for the twist my life took then I probably would have carried on in my little bubble of 'normal' and forgotten all about that group and the lady with the crazy socks. However right about this time I fell pregnant with Robyn and we found she would probably be born with Downs. (See my first entry for the details). I felt the fear of the unknown I'm sure most people would have in that position. And I racked through my brain for people to talk to with experience. Chris-Ann came to mind. I decided that at playgroup that Friday I would catch her at the end for a chat. However that conversation was never to happen. Personal circumstances in her life meant she had to take time off from everything. 

However I held on all the way through my pregnancy to that memory of how awesomely this lady and her daughter were getting on with life and how I could do that too. She truly inspired me to believe that I could do this.

Once Robyn was born things obviously took their own course for a while but once we got back into the swing of things we started attending playgroups where we would see Chris-Ann. It was around this time we learned she had cancer. And yet that wonderful personality still shone through. The first time she met Robyn she didn't want to talk about herself and her own problems, she wanted to hold Robyn, she wanted to chat about everything going on in our lives, she wanted to give me advice on how to manage things better with nurses and appointments. She always wanted to help anyway she could.

For a while it seemed the cancer was beaten but today i learned the sad news that Chris-Ann passed away last Friday.

There will never be a way for me to repay the inspiration she gave me during a scary pregnancy and some very hard early days. I can only hope that knowing she was loved and will always be remembered can bring some sort of peace to her family. I know that I will always be grateful to her for introducing us to a communication system for Robyn, and every time Robyn does new signs it will make me fondly remember that blonde mop, big smile and crazy socks.


Rest in Peace Chris-Ann, missed always.

Wednesday, 30 December 2015

Summary of 2015

It's been a busy few months since the last update. 

Robyn adapted really well to her Baha. However the first little while was eventful. The first one only lasted a few weeks before it was broken. Robyn decided it looked tasty and was caught chewing on it. The second suffered a similar fate. The third was a short term loan of a stronger Baha model which Robyn really seemed to dislike and would tolerate for shorter lengths of time during the day. This seemed to remedy when the second one was returned to us. Since then we have passed most of the issues we had early on. Robyn will occasionally try to put it in her mouth still but mostly this is for attention as she knows someone will come running. She will also be quite clear when she has had enough for one day or when the room or people she is with are too noisy for her as she will remove the whole band from her head and hand it to us. For the most part she seems to enjoy being able to hear though and will soon let us know when the battery has run out to have it fixed. 

Robyn loves an accessory and as the Baha has now become an everyday part of her look we decided to help her customise it to make it more unique. We have several soft bands that we ordered from this website here. Baha Headbands. 

                           Www.forwerd.net

Hello kitty band

My little pony band

Glitter band with sparkly band. 

We have also tried out several different modifications on the cover of the device itself. Here are a few of the ones we have liked best over the last few months. 














Aside from being pretty and fashionable the hearing aid itself has also shown to be helping Robyn's speech development. Unofficially Robyn can now say the words Daddy, Mum, and doggy. The third being very new and is a result of the arrival of Granny's new dog.  Possibly also a little bit to do with Paw Patrol. 

So we definitely have the beginnings of a talker. We also unofficially have a walker. It is definitely still a work in progress due to balance issues but Robyn can now take a large number of steps unaided indoors. She has not yet mastered getting to standing without something to pull up on but one step at a time. More often than not she will still choose to crawl for speed and safety rather than walk but we hope than beginning her new nursery will encourage her to choose walking more and more. She is still using her rollator for outdoors or any lengthy distances indoors or for anywhere unfamiliar. 

It has been a fun few months at home with Robyn full time since she was discharged from Armitstead nursery. The time now has come for Robyn to start at a local nursery for children with additional support needs. Robyn and I have been attending the nursery room one morning a week for the past two months so that the people and building and routine become familiar to Robyn. She has really enjoyed her sessions and made friends with all the other children in her room. The room is mostly makaton based and so should also bring her communication skills both verbal and signing on in leaps and bounds. 


It's also been an exciting for the young Mr. T. He will start school in August 2016 so we have been visiting to assess the schools in our local area. The one we have decided to enroll him in is our local catchment school which also has enhanced provision. This will hopefully mean that when the time comes Tyler and Robyn will be able to attend the same school. We also found out recently there is a good chance that two of Robyn's friends may start at the same school when she does so it would be great for the four of them to all be together.  He had some hard times too, when nursery went back after the summer holidays most of Tyler's friends had moved onto school. He missed them badly and it took him quite a long time to settle back into the routine. He has been enjoying school group at nursery, and learning lots of new things. He recognizes most letters now and can read certain words like his own name, and the names of his group friends. He can count to twenty with no mistakes and is learning a little about adding and subtracting. 


Both children were very excited for Xmas this year. Robyn learned lots of new makaton related to xmas including the signs for jingle bells and her favorite sign of reindeer. Tyler had his heart set on a Lego police station and Robyn was hoping for a wooden dollhouse. Santa was very kind and delivered both. Mum and Dad were also very kind and supplied lots of gifts too. 

All in all its been a very good year for us all. We bought our first house and have watched our gorgeous kids both make excellent steady progress in all their endeavors. We are definitely looking forward to 2016 and all of the new experiences it will bring




Happy New Year to everyone when it comes. 

Xx

Wednesday, 5 August 2015

MaHa - Mummy Was Right. (Baha Issued)

At the time of our TAC meeting in November 2014 I raised concerns that Robyn's hearing wasn't quite as good as it had been and was fluctuating quite a lot. However I was reassured that others were not seeing this same behaviour on a regular basis and that Robyn not responding to my calling her name was probably more related to being 2 rather than not hearing.

This seemed to be confirmed at our following two audiology appointments at least according to the official paperwork. The new audiologist was reporting that Robyn had almost completely normal hearing levels with a combination of both ears. However increasingly this is not what I was seeing at home, I also had some concerns about how the appointments were being conducted having moved away from an audiologist who was very familiar with Robyn and had been working with us since she was very young so had experienced first hand how loud Robyn's breathing used to be for example.

After raising my concerns again we were re referred to the consultant audiologist's clinic with our original audiologist doing the testing alongside our consultant. Mixed emotions about the results. Obviously we are not hoping for a hearing loss but also we were seriously concerned that Robyn was missing out on a lot.

The test returned results showing a 90dbl hearing loss. This places her hearing loss directly on the line between a severe hearing loss and a profound hear loss. For those unfamiliar with the scale hearing loss is measured on a scale from mild - moderate - severe - profound. So as you can see a very long way from the normal hearing levels previously recorded.

In a way I was glad that my instincts were correct and that I became 'that mum' pushing for things others didn't think she needed. But on the other hand we have now confirmed our child has a severe hearing loss which is really reducing her contact with the rest of the world. Having recently watched a hearing loss simulation video I was quite shocked by how little it shows she can actually hear. It also goes a long way to explain why Robyn's speech is very delayed for her age.

The good news of course is now we have a definitive result we can put in place a plan to help with it. Robyn has been issued with a BaHa (Bone anchored hearing aid). This works by bi-passing Robyn's ears altogether. The processor transmits sound directly into the skull and thus using vibration directly stimulates the cochlea and allows Robyn to hear sound. We know Robyn does have permanent hearing loss but at least part of the los is caused by glue ear which has built up again since her grommets have come out. A normal behind the ear hearing aid works by amplifying sound and if we used these on days when Robyn's glue ear has fluctuated and isn't so bad the hearing aids would be too loud and cause her discomfort. The Baha by passes this issue and so we don't have to worry about the noise being too loud on any given day. It is usually worn behind the ear to do this most effectively but works on any part of the skull which is handy as Robyn still spends a lot of time lying down due to her hypotonia and her proprioception sensory issues. This causes constant feedback noise if the BaHa is in the 'correct' position so we will make do with it being on the front of her head for now.

Robyn modelling her BaHa


Robyn will wear the Baha on a softband to begin with until we see how her hearing loss develops as she grows, it is quite common for hearing in CHARGE to deteriorate with age but it is also common for children to grow out of having glue ear so her hearing could also improve with time. We are reluctant to insert more grommets at this time as each time you do this it weakens the ear drum. It ws helpful to carry out the first occasion as it allowed us to determine that Robyn had glue ear as well as a permanent hearing loss but if the glue ear is likely to re occur after grommets as it has it is probably best to wait a while before we try it again.

If it becomes apparent that Robyn will need a BaHa permanently at some stage we would move to the more permanent version of attachment. Previously this involved an operation to attach what was essentially a screw into the skull with the end of this protruding from the skull just behind the ear. The processor would then clip onto this to work. Once in it was a permanent feature so even if the BaHa was no longer needed in future the patient would be left with the protruding attachment piece. More recently it has been changed. The connector is no longer protruding from the skull. The processor attaches with a magnet. One is placed under the skill on the skull behind the ear. When the processor is not attached the magnet is virtually invisible once the operation site has healed completely.

Obviously as it involves an operation it is not something that is rushed into so its probably a long way off if we ever need that but I thought people might be interested.

We have only had the BaHa since Friday so not even a full week yet but already we have noticed HUGE changes. Robyn responded to me calling her name for the first time that I ever really remember. And in those few days we are now regularly hearing the 'm' sound which we didn't have before and today for the first time we heard a 'g' sound. Amazing progress in 5 days. The processor does come unclipped from the band quite easily due to Robyn moving around quite carelessly but already she notices such a difference without it on that she immediately picks up the processor and crawls to me to have it reattached. She clearly loves beign able to hear what is going on round about her finally.

Sunday, 26 July 2015

Goodbye Armitstead, and hopefully hello.

Following on from the last post the last day of term at Armitstead Nursery had to roll round eventually. Very emotional for everyone involved knowing that Robyn has made so many friends at nursery and has been so well looked after there. We left our blog details with the nursery and we are hoping we can say hello to some new followers from there as I know a lot of the staff will miss following Robyn's journey everyday.


Its easy to see at a glance just how much progress Robyn made in her 18 months at Armitstead. In the first picture she is fully supported in her seating but has still slumped slightly to the side as she just didn't have the strength to hold herself upright, she would never have managed bearing weight on an angle like she is doing in the last picture. As well as her physical development but also in confidence and personality. I have loved reading back over all her notes in her workbook that the staff have left about all her little moments. Its  always good to know your child is the one known to have a 'happy dance'.

Aside from that when Robyn first started at nursery we had been signing with her for about a year and had not really had much in the way of her signing back to us. Now Robyn has a little over 100 signs she will regularly use to communicate with us. A huge part of that has come from the reinforcement of having other people in her life signing with her all the time, during every activity. Each of those ladies helped to encourage my girl to use her voice and we are truly thankful for that.

Even eating and drinking when she first started was a huge thing. She would barely eat solids or drink from a bottle but snack time and lunch time changed all that. Not only does Robyn love her food now she has also finally started to grow and allow us to stop worrying about her size and weight. 

18 months ago I would never have thought so much progress in such a short time would have been possible, but with the right input from some wonderful people who genuinely cared for her Robyn has made unbelievable progress.

Thank you to everyone at Armitstead, there are far too many to name them all but we wanted to say a special thank you to Lori and Natalie for everything. x








 
 









































 
 

 
 




 
 
 







Thursday, 14 May 2015

The Flaws in Doing too Well.

 

It was Team Around the Child Meeting time again today. It always impresses me when I first walk into the room just how many medical professionals my two year old can command to be in the same room at the same time.

Today that consisted of me, her paediatrician, a dietician, a case manager, the head teacher from her new nursery, an early years outreach worker, a Teacher of the Deaf, a physio, an OT, a SALT, a key nursery worker, her head nurse and her overall lead person. And there were two people missing that are usually in attendance.

As you can imagine its a very long meeting so that everyone can say their piece.

 On the whole those pieces were very good today, Robyn has come on leaps and bounds these last few months. She has become much stronger physically and has now taken a liking to walking with her rolator much more, even beginning to walk outside with it which until recently she wouldn't do, she would just stand and scream and refuse to take a step.

Her makaton has also come on very well, at home we have recorded her using around 80 signs but nursery have reported her using signs that we haven't seen at home so the true figure could be much higher. She is also linking signs together to make sentences completely independently. Some examples of this being today at nursery when she pulled me to the wall, pointed to a picture of herself and signed Robyn. Earlier in the week she was in her pram and signed to me 'look, picture, lady' to a picture on the wall of Tyler's nursery teacher. She understands lots and will follow instructions sometimes but most of the not following is down to being two and doing only what she wants rather than any developmental delay.



Her speech is still obviously behind but we again discussed the last audiology appointment where they felt we may need to go back to using the hearing aids. The SALT felt that this was showing in the lack of verbal improvement we are seeing and also contributing to how easily distractible Robyn can be in group work. Her next audiology appointment is scheduled for the next few weeks so  we will hopefully get a clearer answer soon.

Therapy wise most of her therapists are now only working with her in an advisory capacity within the nursery. Medically Robyn has been healthy for a very long time with no medical complications. And most of the rest of her workers are community based.

Robyn has been accepted for a place at a local nursery that caters for children with additional needs and the head teacher today discussed how they are planning to place her in their makaton based room with a view to moving between that room and the mainstream room  as and when appropriate. They seem very keen to have her as soon as they can. However with the fact that Robyn is a September birthday she doesn't qualify to start until January 2016. We don't qualify for two year funding under the new rules unfortunately

Most of the children in Robyn's peer group in the Armitstead nursery are all moving on in July which will leave her for the most part with no one left there to challenge her and push her development on. As a result of this and the fact that she really no longer needs such high input from most of her therapists the decision has been made to discharge her from the nursery when the current term ends in July. We should be thrilled of course but at the same time a bit disappointed that Robyn will have a bit of a gap and will need to readjust to being separated again in January. And also very sad we will have to leave all of her friends in Armitstead as she has had such an amazing time there for the last 18 months.



Great news, but also not so great.

Saturday, 28 March 2015

Perspective

Perspective is a strange thing. One persons really hard situation is someone else's everyday. It was never really anything I thought much about till I became a parent. Recently though its something I have thought a lot about.

I was pulling up to an audiology appointment last week and as I stopped the car I noticed a couple getting out of the car in the next parent and child space. At first I noticed them because I didn't see a child with them and was mentally tutting. Then the dad came round the car and I saw he was holding an infant carrier in his arm. The newborn inside the seat could only have been a few days old. I looked again at the parents and noticed they both looked a bit shell shocked as they walked across the car park and I had a bit of a flashback to a previous appointment of ours. Not one of Robyn's as you might expect but with Tyler.

Tyler failed his newborn hearing test in the hospital. Twice. We had to go into audiology a week later for more indepth testing. I had forgotten going to that appointment and being so worried that Tyler might be deaf in one ear. It felt like it would be the worst possible thing that could have happened to our baby, how would it change his life? How would we cope? If I had met me on that day now I would be unimpressed. Perspective now tells me that a child with deafness in one ear compared to the many complications we face now would have been a walk in the park. But almost 4 years ago it was something I couldn't comprehend at all.

I have decided to try to remember this more. Until recently other peoples perception of 'hard' bothered me a lot. People who for example count the time their child spent in NICU in number of days rather than weeks or months and talk about the feeding problems they had there. People who tell tragic tales of their child having a cold for the first time. People who talk about giving a dose of calpol like its hard drugs that will poison your child. All of these things used to bother me a lot. I tend to avoid these kinds of conversations if I can with people I don't know well as most of the time it looks like im being a competitive mum who wants attention or sympathy. And I do hate the sympathy. Mostly my point is to make people consider perspective the way that I now do.

Yes, your several days in NICU were very hard, I get that I really do. I understand wanting to talk about it. But talking about how hard it was to someone who spent almost 7 months in hospital when her baby was born isn't always the best idea. You had to tube feed, its rubbish isn't it? That month must have been really hard for you. I know that because the 13 months we spent doing it were awful. I was told once I was being irresponsible about my attitude to calpol being really great stuff. Its a side effect to my child being on IV morphine for the first month of her life. Calpol again doesn't really come close to the levels of damage the morphine and General anaesthetic could have done. Calpol is kids stuff from my point of view. Like I said these things aren't a sympathy vote tool, to me now they are just facts. I dealt with it all, but there is still a part of me that cant help but think, is that all you have to worry about sometimes. Like I said its all perspective I understand that.

Wouldn't it be nice to just take some time out every once in a while and consider a different point of view. If everyone could step out of their own problems for a little while and put others first. The world might be a much more understanding place. It might help people have more conversations that have empathy rather than sympathy or one-upmanship in them. And that can only be a good thing.