Another weekend

Published October 12, 2014 by swanfreddie

This weekend we had the best time. On Saturday we were all up early so we decided to go on an impromptu trip to the beach. Evie & Freddie quickly threw on some warm clothes and we jumped in the car. The sun was just rising as we arrived so we took a walk along the sand watching it. Evie and Freddie spent hours building sandcastles and having fun together. Then we came home and decided to watch a family dvd. Typically Evie and Freddie squabbled over what to watch but they did eventually agree. So we snuggled under blankets with hot chocolates all afternoon.
On Sunday we decided to stay home and bake cakes. Evie choose princess cakes and Freddie spiderman. While the cakes cooked Evie & Freddie went into the garden to play on their bikes and trampoline. In the aftermoon we did some arts & crafts and then watched another family dvd before bed.

But this weekend wasn’t real. It was just my dream weekend. A normal, relaxing family weekend.

Our weekend was very different to this. It was very set and scheduled and ruled by Freddie. Our weekend consisted of prepping and administering 14 daily doses of Freddie’s medicines, endless bib and nappy changes and feeding Freddie all his meals and milk. We did physio and tried to find different things to keep Freddie entertained…which is very hard  We tried to play games but Freddie kept crying and needing constant attention so we soon stopped playing them. We did put a family dvd on once Freddie went to bed but we paused it well over ten times to go and resettle him as he didn’t want to sleep. We never left the house as it’s just easier to stay home. Infact I can’t remember the last time we went out as a family.

This is a pretty standard weekend for us. It’s been the exact same routine for as long as I can remember. Medicines, food, milk, sleep at the same time every day. No opportunities to enjoy the family activities you want to. The things you imagine yourself doing with your children. I often think how nice it must be to just watch your children play together in the garden or sit with them and just watch a film together. What life must be like to not be constantly caring for a child. To be able to leave the house without forward thinking and planning. To not have to constantly be clock watching so you don’t miss medicine times.To just be able to be happy. To not be stressed and tired constantly. For life to not feel so hard.

I often go through times where I lose my acceptance of having a child with disabilities. Where I suddenly find it really difficult to manage. I often find myself watching Freddie wondering what he would of been like if he was born without a syndrome. What type of toys he would of liked and what he would of enjoyed doing. Would he of liked football and riding his bike? I wonder what his personality would be like and what his voice would sound like.
I will get my acceptance back. I will stop looking at Freddie and wanting to cry for him. For the life he won’t have. I will go back to being positive about the future Freddie has.
None of this means my love for Freddie changes. Freddie is an amazing little boy who brings a lot of happiness to our lives.
Life at the minute is just hard with Freddie. But it will get better.

 

 

Freddie starts school!

Published September 11, 2014 by swanfreddie

It has taken months of planning and endless meetings and paperwork to get everything in place ready for today…Freddie’s first day at school!

For 3 days a week Freddie will now be attending a school for children with severe and profound learning and physical difficulties. It’s an amazing school and we are really excited to see how much Freddie will progress being there. They have some great facilities he can access like the hydrotherapy pool and the sensory rooms.
Freddie’s school isn’t in the local area so i’m unable to take him there myself so instead he will be picked up and dropped off by a school mini bus.

So at 7.50am this morning Freddie had been fed, dressed, had his medicines and was outside in his pushchair awaiting the bus. And this was where the day got off to a horrible start!

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The school bus arrived and the plan was for Freddie’s pushchair to be strapped to the floor of the bus. But neither the driver nor the bus escort knew how to do this… How a company can be employed to transport vulnerable children to and from school and not even know how to secure them to the vehicle properly is ridiculous!! And leaves me massively anxious that they are not properly trained to look after Freddie while travelling to school.
Freddie was upset getting wheeled onto the bus as the ramp was very noisy and he struggles to cope with loud noises but after having to wait for 30 minutes!!!! for his bus driver to get him strapped to the vehicle(and even then they couldn’t work out how to use the right strap that they were supposed to) he was not a happy boy. Our neighbours weren’t happy either as the mini bus blocked off our road for 30 minutes while they sorted this out and there was a queue of traffic unable to get past! Not the best start to the day.

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Once at school Freddie sounds like he’s had a good day! He’s mainly spent today settling in to his new classroom. He’s been getting to know the children and all his teachers and having singing time. Other than getting upset at the noise the other children were making(think we may have to send his ear defenders in) he’s had a happy day.

He arrived home at 4.30 and after 10 minutes of the driver struggling to get the ramp to work to get him off the bus we were able to have a big cuddle. He was very tired and grumpy but soon cheered up once his music went on and he had a good dance!

 

I’m looking forward to seeing what he gets up to tomorrow and watching his progression through school!

 

 

Meet Casper

Published August 24, 2014 by swanfreddie

Making the decision to have another child was fairly hard for us to do. With Freddie being undiagnosed we weren’t able to know if Freddie’s syndrome could be passed on to any of our other children we decided to have. After 4 years of having Freddie we did eventually decide to go ahead and have another baby. I spent a lot of the pregnancy anxious and worried over whether or not this child would be born with the same syndrome as Freddie.

Giving birth to our new baby took quite a bit of planning. With Freddie having quite high care needs, being partial tube fed and having a strict medicine schedule it meant we would need somebody to be fully trained in all aspects of Freddie’s care and be able to look after him for a few days while I was in hospital. Our nearest family live 5 hours away so in order for one of them to come down and care for Freddie for us we asked for a planned induction of labour. The consultant agreed to do this and I went into hospital to be induced on 19th August.
Freddie’s absolutely gorgeous brother Casper finally enentered the world weighing 7.13lb on 20th August.

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When Freddie was born it was obvious that he had some health issues and had a lot of characteristic facial features of a child with a syndrome. So once Casper was born the first thing we did was make sure he didn’t have any of the signs Freddie was born with. We were hugely relieved when everything looked ok and we were finally able to enjoy having our baby.

Casper was breathing fairly strangely when he was born but the midwife’s seemed happy that it was ok and he just being a bit grumpy. But after a few hours the noise hadn’t stopped and he was reviewed by a paediatrician. She thought he seemed ok so he was left again for another few hours. After 5 hours the noises still hadn’t stopped and Casper did seem to be in a bit of discomfort so he was taken to the special care unit to be reviewed. And that is where he has stayed ever since.

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When Casper arrived on the special care unit his sats were low so he was put onto oxygen to help with his breathing. He’s had a rough couple of days and has been in a lot of pain. He’s currently being treated for a punctured lung and is being kept as comfortable as possible with morphine. He does seem to have improved over the past 24 hours although is still needing a fair amount of respiratory help.

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We have been assured that Casper will get better and his problems are in no way related to anything that Freddie has. Which is massively reassuringly for us, although we are still heartbroken that another one of our children has had a tough start to life. It’s very hard to know how we should be feeling at the minute, we are obviously upset that Casper is so poorly but at the same time feel we are lucky that he isn’t showing any signs of having a syndrome and he will get better, unlike Freddie, who is affected for life.

We are struggling to get to spend much time with Casper as Freddie won’t tolerate being in the special care unit as there are too many machine bleeping and babies crying so we are only able to spend less than an hour a day seeing him. Luckily he is being cared for amazingly well and we hope that he will get better very soon and we can get him home.
Freddie is unaware at the minute that he has a brother but hopefully by the end of the week Casper will be home and Freddie will get to meet him.

 

Freddie’s Upsee!

Published July 3, 2014 by swanfreddie

Today was a very exciting day in our house! After 4 years we finally got to see Freddie walking (kind of). With a little bit of help from an amazing harness called the Upsee, Freddie has been walking around the garden and playing football!! Something we never knew if Freddie would ever be able to do.

It’s massively important that we make sure Freddie uses the muscles in his legs. With him not being able to stand or walk his muscles haven’t had the chance to develop as they should of. He has a standing frame to use at home but he doesn’t tolerate being in it very much so we were really keen to see if he would enjoy spending time in the Upsee.

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It was amazing being able to see him stand up and kick a ball. The best part for me was just to hold his hand while he was walking. As a parent it’s a great feeling when your child takes their first steps, I used to love holding Freddie’s sisters hand when she was learning to walk and being able to do this with Freddie was so special.

I’m hoping that using this walking aid will help strengthen Freddie’s legs and core muscles and that one day it will lead to him taking steps unaided!

 

Schooling update

Published June 10, 2014 by swanfreddie

Since the beginning of the year there have been lots of meeting taking place about Freddie’s future education. He is due to begin full time education in September and we have been working with all of Freddie’s health professionals to try and work out what type of education setting will be best for him.

Due to Freddie’s learning difficulties one of the first things that had to be put in place was a statement of special needs. This is a formal document detailing a child’s learning difficulties and the help that will be given in school. Once a statement has been requested it takes around 6 months to complete.

The next step was to work out where we would like Freddie to go to school. There were a few choices that we had to think about. Firstly was to send him to a mainstream school.  Our second option was to send Freddie to a school for children with additional needs. Or thirdly opt for a dual placement, where Freddie would split his time between a mainstream school and an additional needs school.
Sending Freddie to mainstream school full time was definitely a no. We felt his learning difficulties were too severe for him to effectively learn in this type of environment, so going to a school for children with additional needs seemed like the best thing.
But over the past few months part of me has massively wanted to look into dual placement. The idea of allowing Freddie to spend some time in a mainstream school began to seem more appealing. From a learning point of view the addition needs school has everything Freddie needs, but part of me began to wonder if mainstream could offer Freddie something as well. Freddie loves being around other children, and is very sociable, and I began warming to the idea that maybe spending one day a week around mainstream children may be good for him.

So I decided to pursue the idea of a dual placement. This idea was discussed several times at the meetings about Freddie, and I was advised to apply for Freddie to have a place at both the mainstream and additional needs school. We would have to wait until Freddie’s statement was completed before we would hear if he had been accepted into the additional needs school(but we were told he should definitely get a place there) but we heard quite quickly that he had been given a place at the local mainstream school.
I was advised that the next step would be for me to go and meet with the mainstream schools senco(special educational needs co-ordinator) We had a good chat about Freddie, what he can and can’t do and what level of care he would need. I explained that I knew Freddie wouldn’t be able to learn on the same level as the other children but that I was hopeful that Freddie would still be able to gain something from attending this school.
I felt like everything was beginning to fall into place, he had his mainstream school place and we now just had to wait for the statement to be completed and hope that Freddie got his place at the additional needs school.

The call finally came today from the special education department. Freddie had been allocated a place at the additional needs school from September. The idea was that he would start off by doing 3 days a week at this school, and we would gradually increase this. We would now need to go and meet with the school and sort out all the arrangements.
But after confirming Freddie’s place at this school the lady then went on to tell me they felt it wasn’t in Freddie’s best interests to pursue the place at the mainstream school as well. They feel it would be better if Freddie just goes to the additional needs school full time, and maybe in the future, if they feel Freddie will benefit from it, then they may explore the idea of spending a few hours at the mainstream school. She explained I can pursue the dual placement if we wish but they don’t advise we do.

As the lady was explaining this to me my eyes filled with tears. That little bit of hope I had that Freddie could manage a few hours a week at a mainstream school, like other children, had been totally dashed. Once the conversation had finished and I put the phone down the tears came. The idea of Freddie being able to do a dual placement had been really important to me and I was so hopeful that everyone else would think Freddie could manage it, that maybe his needs weren’t that severe and he could manage at least a few hours a week in a mainstream environment.
The tears flowed more when 2 minutes after putting the phone down the postman delivered a letter inviting Freddie to go and spend some time at the mainstream school to get used to the environment and meet his new teacher and new classmates. Something that would be pointless him doing now.

I was looking forward to having 1 day a week were things could feel more ‘normal.’ Where both of my children could go to the same school. I was looking forward to 1 day a week being able to walk Freddie to school and help him hang his coat and bag on his peg like I did for his sister, the little things you do as a mum when your child first starts school. Instead he will be taken away in a taxi to his school, without his mum being there on his first day to help him. But Freddie won’t care about any of this! Just me.
I was really hoping our idea of doing dual placement would be supported and encouraged by all of Freddie’s professionals. I was hoping that they would be confident that Freddie would cope with being in a mainstream environment. And while they aren’t saying Freddie can never spend time there, they are saying for now it’s not advised.

So after a good cry I did manage to pull myself together! Time to focus on the positives. The additional needs school will be amazing for Freddie. They have some fantastic facilities including a hydrotherapy pool and a sensory room which Freddie will absolutely love. Who wouldn’t love to spend their school days relaxing in a hydrotherapy pool?! It may not quite be the journey we wanted Freddie to go on but I’m so excited that come September Freddie will have the opportunity to attend such a great school.

Freddie turns 4!

Published June 1, 2014 by swanfreddie

I love birthdays, particularly a child’s birthday. I love seeing the excitement on their faces when they are opening their presents and the way the day is so magical to them. When it’s Freddie’s sisters birthday we always make plans  to go somewhere nice for the day, we have a special tea, a big birthday cake and mounds of presents. But when it comes to Freddie’s birthday the day is very different.

Freddie has no understanding of what a birthday is which can make celebrating it hard. We don’t do the trips out with him as he doesn’t enjoy them, we can’t plan a special tea or have a birthday cake as he doesn’t enjoy food and buying presents for him is hard due to his developmental delays.
I spent the past few weeks leading up to Freddie’s birthday feeling a bit down over it. I wanted to give him the birthday he deserved, I wanted him to be able to have a special day. I spent too much time in the lead up to his birthday wondering what he would be like if he was born without a syndrome. Wondering what he would be like if he could walk and talk. Would he want a bike for his birthday and a big chocolate cake? Wondering how excited his face would look when he woke up and saw his presents.
But there’s only so long you can feel sorry for yourself for before you have to pick yourself up and carry on. So instead of moping and wondering what could of been with Freddie I tried to plan him the best day I could. So here is what we did for Freddie’s 4th birthday -

 

After searching and searching endless toy shops I managed to find 2 toys I hoped that Freddie would like. He was unable to unwrap the presents himself(I think next year we might be best to not wrap them) but his sister was more than happy to help him.  He got one toy that spins(Freddie’s favourite thing!) and shoots out balls when the top is pressed and the other was a car that shoots off when you press the button. Freddie isn’t able to press the buttons himself but he certainly enjoys watching them.

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To try and help Freddie gain an understanding of what a birthday is I made him a birthday sensory box. It was full of wrapping paper, bows, ribbon, party hats, candles, party blowers, balloons and streamers. He had a good rummage through that, exploring all the different items.

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Freddie loves balls and sitting on his trampoline. So we thought we would combine the two and fill the trampoline with all his balls. He loved sitting in the sunshine pushing all the balls around.

20140601_120030Seeing as Freddie is very limited to what food he can eat it is pointless giving him a birthday cake. So instead we tried to make him a sensory cake. Made with playdough, bouncy balls and sparkles!

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20140601_154916This is what he thought about his cake! -

But we did also make a chocolate cake for mum and dad to eat! He loved being sang happy birthday to, but definitely wasn’t going to even taste a little bit!

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Freddie played with his big soft blocks.

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One of  Freddie’s favourite things is a bath. He loves being in water and having a good splash. So we bought him fun things to have in his bath and some bath foam to get messy with.

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We then chilled out with some sensory lights and sounds before bed.

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So that’s another birthday done. Another year older. And while it may be another birthday passed with Freddie unable to walk or talk and while we will always feel a sense of sadness over this we are incredibly proud of the little boy he is growing up to be. Our little smiling Freddie, who has the ability to win over even the coldest of hearts.

Undiagnosed children’s day 2014

Published April 25, 2014 by swanfreddie

One thing I’ve found since having a child with no named syndrome is that it can be hard to give people any information on your child. When you have a named syndrome it can often be a lot easier for people to gain an understanding of your child. Having an undiagnosed child can be very hard to explain to other people and often people don’t like to ask too many questions. I personally don’t mind people asking me questions about Freddie, I’m more than happy to discuss him and help people gain an understanding of him.
Over the past few years I have been asked a lot of question and with it being undiagnosed children’s awareness day I thought I would write some of them down to help everyone gain a better understanding of Freddie and what being undiagnosed means. 

What is wrong with Freddie?
Freddie has a complex undiagnosed neurodevelopment syndrome. It causes him to have many problems which affects his whole body. He is severely mentally and physically delayed. Have a look at Freddie’s body map here to see what effects him where on his body.

What does being undiagnosed mean?
There are many syndromes that can effect children that most people have heard of. Probably the most well known is Down syndrome which occurs when a child has an extra chromosome 21. Being undiagnosed is surprisingly common and as many as 50%  of children with learning difficulties remain undiagnosed. 

There are many tests that can be done on a child to try and help find a diagnosis but often children remain undiagnosed if that condition is rare and harder to identify.

Does undiagnosed mean it’s not very serious?
This is something that a doctor said to me once and I found it surprising that they would think this. Just because a diagnosis can not be found does not mean it is not serious. In fact a lot of children I know who remain undiagnosed live with life threatening conditions and are very serious. Without having a firm diagnosis nobody can be sure what the future holds for the child or how serious the syndrome could be.

Will he get better?
Freddie will never become better. He may in time learn to walk and talk and will hopefully learn some more skills to enable him to become more independent but the likelihood is he will always need 24 hour care for his whole life. 

Why do you even want a diagnosis?
A lot of people often think getting a diagnosis for a child is labelling them. For me a diagnosis will provide us with crucial information on Freddie that could help us a lot. There are so many reasons why I feel it is important and even though I’m scared to know what syndrome he does have we will always do what we can to carry on searching for a diagnosis. 

  • Without a diagnosis it’s a lot harder to find support & somewhere to fit in. How can you find other people to understand what you are going through if you don’t know what it is? We were lucky to find swan uk(syndromes without a name) which is a support group for undiagnosed children. The children are all unique in their own way but we are all in the same boat.
  • Filling out forms becomes a nightmare, and with a disabled child there are a lot of forms to fill out! There’s always a box that asks for a diagnosis. Simply putting undiagnosed isn’t enough. There needs to be an explanation to go with that.
  • Trying to explain to other people what’s wrong with your child becomes hard & sometimes awkward. A lot of people assume that if your child isn’t diagnosed they will outgrow their problems.
  • Without a diagnosis we have no real idea what the future holds. I understand even with a diagnosis I won’t ever get an exact idea but to roughly know what to expect would help. It would stop the future being so scary & help us have some sort of sense of direction.
  • Our decision to have another child was very difficult without a diagnosis. We don’t know whether this child could have the same problems as Freddie.
  • If my daughter went on to have children we don’t know if her children could be affected.
  • When going to hospital appointments to meet new doctors you spent the whole appointment discussing Freddie’s problems as we can’t simply just name a syndrome.
  • A lot of undiagnosed children have to fight more to get the help & support they need. Without a diagnosis they tend to get pushed aside more.
  • Without a diagnosis a lot of people assume that it won’t be serious, when in fact it can be fatal.
  • Having a diagnosis would help me know if my Freddie’s condition is going to progress or deteriorate.
  • Getting travel insurance for an undiagnosed child is made a lot harder.
  • Some people assume a child is undiagnosed because the parents haven’t pushed for a diagnosis. That we’re somehow not making the effort.

Will Freddie ever walk or talk?
It is hard to say what Freddie will ever do development wise. He is showing some very positive signs that one day he will be able to walk. He is beginning to move his legs when held upright which is really encouraging. Freddie has low muscle tone in his mouth which will likely affect his ability to be able to talk. But it is hard to say what he will ever do and we like to remain positive and have heard some incredible stories of children as old as 10 learning to talk. 

What will the future hold for Freddie?
Without a diagnosis it is hard to say what the future will hold. We will continue to work hard with Freddie to help him achieve all that he can. If he goes on to walk and talk then that will be absolutely amazing but if he doesn’t we will work hard to give him independence in other ways. 

At the minute Freddie is doing really well. Despite having the odd chest infection he’s in pretty good health and we hope that will continue for the foreseeable future. There are some awful syndromes out there that unfortunately do limit a child’s life but we try to remain positive that Freddie will have a typical life expectancy and will go on to have a happy life.

Why does Freddie need a feeding tube?
Freddie has had a feeding tube since he was 8 weeks old. We have had a few different types now and you can read about them here. Freddie does struggle with eating and has a food aversion which means he can have a big dislike to certain food. We have worked hard to get Freddie to eat pureed meals. We try to give him 3 small pureed meals a day, which sometimes he will eat well, but other times he will refuse. Freddie also has a high calories milk which he drinks through a bottle throughout the day. Freddie doesn’t eat enough food orally throughout the day to continue to grow and thrive so we use the tube overnight to pump milk into Freddie to top up his calorie intake. We also use the tube throughout the day for Freddie’s 14 medicine doses and to give him water to make sure he stays hydrated. 

Why does Freddie take so many medicines?
 Freddie has taken medicines since he was a baby, but as he has grown we have had to add a lot more. He takes 4 different medicines to help control his reflux. His reflux can get very bad at times and greatly affects his ability to feed and causes him a lot of pain. Freddie takes 2 medicines to help control his epilepsy, which thankfully is very well controlled. We have a medicine to try and stop Freddie dribbling as much. Freddie dribbles a lot due to not swallowing so this medicine helps him to produce a little less saliva. Freddie also takes a medicine to stop him getting constipated. Due to his limited diet Freddie gets very constipated and causes him a lot of pain. 

Why does he have a bump on his head?
A lot of people comment on Freddie’s red lump on his forehead. We are often asked if he has bumped his head but it is actually related to his trigonocephaly. This is where the metopic (forehead) suture closes too early. 

Can Freddie see properly?
It’s hard to tell what Freddie can see. He regularly sees an opthalmologist to keep a check on how his eyes are developing. Freddie has an inturn in his left eye and they think he doesn’t see out of this eye properly which is the reason he wears glasses to try and strengthen this eye. They also suspect he suffers with cortical vision impairment so it is likely he doesn’t see the world as we do. But it is very hard to understand exactly what Freddie can see due to his lack of communication. 

His breathing is quite noisy, is he ok?
Freddie has always had noisy breathing and he is perfectly fine. As a baby he was diagnosed as having a stridor which is a high-pitched breathing sound. A stridor can be caused by a narrowed airway. As a baby he worried a lot of doctors with his breathing as it was very loud but as he has grown it has become quieter now but there are times when he can be very noisy, particularly if he is suffering with his chest aswell. 

If you have any questions you would like to ask about Freddie then please get in contact. I’m always happy to answer and share our experiences with you.

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The reason behind this blog post is because today is undiagnosed children’s awareness day. Before I had Freddie I never knew anything about disabled children and was unaware that children remain diagnosed. To get more information on undiagnosed children you look here at swan uk (syndromes without a name) website http://undiagnosed.org.uk/

You can also read more blogs about undiagnosed day over on the swan uk blog hop here http://undiagnosed.org.uk/archives/5674

 

 

 

 

 

 

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