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.

Here he is in action! -

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.





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.





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!



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!



Freddie played with his big soft blocks.



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.




20140601_161739 (1)



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






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.


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

You can also read more blogs about undiagnosed day over on the swan uk blog hop here








Published April 10, 2014 by swanfreddie

Today Freddie’s new bed was delivered. Freddie has needed a new bed for a long time but due to his physical difficulties he is unable to go into a regular bed. We have been lucky enough(or unlucky depending on how you look at it) to meet the nursing criteria to get a bed funded by the council.
Freddie currently sleeps in a cot and over the past year it has become increasingly difficult to lift Freddie in and out of it. Freddie’s new bed is very similar to a hospital bed. It has controls to move it up and down and you can tilt either end.

The moment the bed got delivered and assembled was bittersweet. Instead of the novelty, racing car bed designed for a 3 year old boy that I longed to give Freddie, we had a hospital bed. I know the bed is going to make life so much easier with Freddie. No more strain on my back lifting him in and out and being able to tilt the head end of his bed will come in really handy at helping to manage Freddie’s overnight reflux. But seeing the bed was horrible. It was another piece of equipment. Another piece of equipment for a disabled child. Lately I’ve been feeling quite suffocated by the amount of equipment and medical supplies we have. Everywhere you look there is something that Freddie needs. Something that Freddie needs to help keep him well and healthy.

Freddie’s bed


Freddie’s chair


Freddie’s bath chair


Freddie’s standing frame


Freddie’s pushchair


Freddie’s sleep system


Freddie’s walker


Freddie’s tube feeding supplies


Freddie’s daily medicines


Freddie’s pump


Having so much equipment in your house can be hard. Even though your incredibly grateful to have it all and that your child has everything he needs to help him thrive there’s a big part of you that would give anything to just get rid of it all. It can become quite overwhelming. Everywhere you turn in your house there is equipment. On top of all this we have other bit’s like glasses and splints. The glasses need cleaning constantly, the splints need checking and re-positioning frequently. Then there’s bibs that need changing every 30 minutes, a strict feeding schedule that needs to be followed, fluids that need to be put down his tube and stretches to be done. Every day seems like a never ending routine of caring.

Lately I’ve found myself wondering what life would be like to have a family without a disabled child. What do parents do if they aren’t busy with medicines, physio or hospital appointments? I wonder what it must be like to just go out for the day without having to pack a huge amount of supplies and plan the day to precision.
It’s not that I don’t love Freddie, because I do. I love him more than words can describe. But some days are hard. Some days you just want to say ‘enough.’ I’ve had enough of this disabled world.


Freddie’s news -

Published March 2, 2014 by swanfreddie


Yes! We are due our 3rd child in September! :)
We don’t know what the future will hold for baby number 3. With Freddie being undiagnosed it’s hard to know if any of our future children could be affected by the same syndrome Freddie has. Although we did have positive news lately when we met with Freddie’s geneticist. He feels confident that Freddie is probably a one off and any other children are unlikely  to be affected. Although he can never say for definite until Freddie has a diagnosis.
This news has made us feel a lot more positive that baby number 3 will be born healthy, although naturally we do still have a lot of worries and fears over it.

We don’t care if we have a boy or girl, if they have blonde or brown hair or green, blue or brown eyes, we are just hoping and praying that when our baby comes it’s born healthy and well and doesn’t have the huge list of problems Freddie has.

Feeding tube awareness week

Published February 9, 2014 by swanfreddie

This week is feeding tube awareness week. As a baby Freddies feeding tube was a massive part of his life, it was his way of staying alive. Without it I don’t know where he would be now.
Since birth Freddie was a bad eater, but for the first few weeks of his life I manged to get enough milk into him to keep him satisfied. At 8 weeks old Freddie  was hospitalised as he was very underweight and had blood in his nappies. He was diagnosed with a milk protein allergy and reflux. As his weight had dropped very low  we had to start feeding Freddie via an ng tube, an ng tube is placed up the child’s nose and goes into their stomach.

Freddie had always had problems sucking on his bottle but it was now becoming more obvious that the problem was so bad it was preventing Freddie from taking enough milk. The ng tube was only meant to be temporary. We expected it be there for a few days until the doctors could help Freddie learn how to feed from his bottle properly. Several different feeding specialists tried to show us different ways to feed Freddie but nothing worked. So after a few weeks in hospital we were discharged home with the ng tube in place.
Freddie3 IMG_0523 IMG_0333 IMG_0648Freddie would constantly pull the tube out. We would end up down the hospital nearly everyday getting it sorted.  Repassing it was so hard due to Freddie having such small nasal passages. He would have to be pinned to the hospital bed while the nurses tried to get the tube up his nose. He would turn blue as he struggled to breath and would get so distressed. The tape also irritated his face and his skin would go so sore.
IMG_0558 IMG_0556For us the ng tube was a bad experience. Freddies feeding wasn’t improving and we were advised to have a more permanent feeding tube put in. So in January 2011 Freddie had his first gastrostomy operation & had a peg inserted.


The peg made life alot easier. No more pinning my son to a hospital bed while nurses struggling to repass a tube, no more sore, burnt skin and no more tape covering up his beautiful face. But we didn’t like having the tube dangling around all the time. It became a bit of a pain, Freddie would pull at it & it kept getting caught on things and we became worried about it being pulled out. So 6 months after the peg operation we took the next step to have another operation to have a mickey button fitted.

Having the mickey button made life alot easier. We were so glad we made the decision to have it done.
Freddie’s feeding has improved so much over the past few years but we do still rely on the tube not just for food but for his fluids and medicines too.
To me and my family Freddie’s tube is so normal and it’s not a big deal. Although looking through the pictures of our ng tube days brings a lot of hard memories  back.

I do wonder where we would be without these tubes. Freddie simply couldn’t feed and without food he couldn’t thrive. So if he couldn’t thrive he simply couldn’t live. So to us the tubes are lifesavers.


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