Enough

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

20140410_140142

Freddie’s chair

20140410_105657

Freddie’s bath chair

20140410_145627

Freddie’s standing frame

20140410_145935

Freddie’s pushchair

20140410_150708

Freddie’s sleep system

20140410_141037

Freddie’s walker

20140410_150902

Freddie’s tube feeding supplies

 20140410_160510

Freddie’s daily medicines

20140410_110003

Freddie’s pump

20140410_163126

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

20140302_152216

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.

IMG_0653Peg

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.

SAMSUNG SAMSUNG
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.

Genetics

Published February 4, 2014 by swanfreddie

Since Freddie was a baby a team of genetic doctors have played a big role in trying to help find what syndrome Freddie has. They have done various different tests on Freddie but all have come back normal leaving him a bit of a mystery to them.

Today we had an appointment at the hospital to meet with the genetic team. Genetics appointments can be very full on and hard for parents to sit through and today’s was no different and I spent most of the appointment wanting to cover Freddie’s ears so he didn’t have to listen to all the things that were being said about him.

Alot was discussed in the appointment and it’s very hard to take everything in but here’s a quick overview of what happened -

I’ll start off with the negatives of the appointment – Freddie being stripped to his nappy while the doctor pointed out to us all of his dysmorphic features – and there was alot! Right from the tips of his toes to the top of his head. Every little detail of what is wrong with Freddie was pointed out, an incredibly hard thing for a parent to listen to about their child.  Hearing a doctor tell you your child’s brain is wired wrong and that they have major problems is just heartbreaking to listen to, even though deep down you already know it. But we appreciate all that was done is necessary in order to help find out what syndrome Freddie has and the doctor was very kind and thorough with Freddie.

And the positives – The doctor thinks it is unlikely that any future children we have will be affected and Freddie is just a one off! Which is amazing news for us and will also mean that it won’t be something that Evie carries and could pass on to her children. They obviously can’t tell us for sure until we have a firm diagnosis but it has given us some hope for the future.
Also the doctor is actually going to test Freddie for a specific syndrome!! It’s a new syndrome that has only recently been found but the doctor thinks Freddie has some traits of another of his patients who has just been diagnosed with it. Hes not massively hopefully Freddie has it but thinks its worth testing for. So we will hear back in 2-3 weeks if its positive or not. I don’t know anything about the syndrome but if Freddie does have it we know the other patient is a young adult so he has made it through childhood and his teenage years! And as we know alot of syndromes come with shortened life expectancy so this is a massive positive to us.

A possible new problem was also spotted with Freddie when he was being examined so we will need a referral to the appropriate team and the doctor took some photos of Freddie so he can show Freddie to his colleagues to see if they have any ideas of what syndrome Freddie could have.

The appointment was tough on all of us but particularly Freddie. He really doesn’t like being touched by anybody and was very upset during the examination. So to cheer him up we had a nice bubbly bath and are now having big snuggles before bed.

Our perfect little boy.

photo (10)

 

 

 

2013

Published December 31, 2013 by swanfreddie

2013 was another busy year for Freddie. He spent some time in hospital having an operation, he started school and moved to sunny Cornwall! It was another year full of hospital appointments, physiotherapy and tests. We even managed to squeezed in some fundraising and managed to raise over £2500 to help pay for much needed equipment for Freddie. But  it was mainly a year for smiling and making everyone who loves him very proud!
I am looking forward to seeing what 2014 will bring for Freddie. Will it be a year where he learns to walk ? say his first word? or take his first bite of solid food?  As long as he stays smiling and healthy it will be a good 2014.

 Here is Freddie’s 2013 in pictures-

P1000653 74319_10151175942877047_803226931_n 66426_10151176876022047_1104515686_n

934628_10151399929387047_1493973772_n

20130924_154106 20130918_161853 fred eye

904280_10151340501502047_1038255509_o

968956_10151398418107047_2101422406_n

1382841_10151647923292047_1215646191_n 1383701_10151636935792047_150721741_n

1064143_10151455242147047_1047631986_o (1)

1383816_10151678856347047_153127761_n

533996_10151342072807047_837547627_n 1005290_10153075442110651_220412039_n

freddie hair

935356_10151408988082047_1216884703_n

528300_456138271165565_1721236773_n

1063753_414546395324753_1166877927_o

999724_10151544432572047_813044430_n

1231263_444497402329652_1479069739_n

1454607_476672312445494_1178631280_n

999099_468039703308755_571069560_n

1450306_480042985441760_1294176561_n

Dear Santa

Published December 14, 2013 by swanfreddie

A few weeks ago Freddie’s big sister came to me and asked me how Santa would know what Freddie would want for Christmas if he can’t speak and tell anybody what he would like. She was a bit worried that he wouldn’t get any presents so being the amazing big sister that she is she decided to write a letter to Santa on Freddie’s behalf -

Image

Dear Santa,

Please can Freddie have a robot and please can Freddie have some lights and some books.

Love Evie (and lots of kisses because she loves Santa very much)

Perfect as he is

Published October 26, 2013 by swanfreddie

From quite a young age there were concerns over Freddie’s eyes. There were alot of questions over how much he could see so Freddie began having regular eye checks from 6 months old. He was found to be long sighted and have astigmatism and he also had an inturned eye. Freddie began wearing glasses when he was 16 months old to try and correct his eye problems. 2 years later he still wears glasses and his inturned eye has become worse. 

At his last eye examination his ophthalmologist was worried that his inturned eye was beginning to stop working so Freddie was only seeing through one eye which meant everything looked 2d to him rather than 3d. In order to help encourage Freddie’s eye to start working again we began patching Freddie’s good eye in the hope that his bad eye would switch back on. There were also concerns that Freddie had cortical vision impairment, which is a form of visual impairment that is caused by a brain problem rather than an eye problem. 

On Wednesday we went back to the ophthalmologist so they could look in more depth at Freddie’s sight. He said his eye is structurally ok but confirmed that it was likely Freddie’s bad eye had pretty much stopped working and confirmed that it did seem that he had cortical vision impairment. The decision was made to carry on patching Freddie’s good eye and keep using his glasses to try and strengthen his eyes. We also spoke about what to do about the way Freddie’s bad eye is inturned. The doctor said that there is an operation that can be done to straighten Freddie’s eye but the likelihood is that it will just eventually drift back to being inturned within a year. We were fine with this, we never had any plans to operate on Freddie for cosmetic reasons anyway, to us hes perfect as he is. But what the doctor said next shocked me. He told us he would be happy to operate for cosmetic reasons as we may find as Freddie’s grows older people may stop talking to him if he has an inturned eye!

REALLY?!

With all that we have been through, and continue to go through with him, the daily tasks to keep him healthy and happy we are now told that we should start thinking about how other people may view him? We are now supposed to consider putting a 3 year old through his 6th operation just incase other people won’t speak to him because of the way he looks!

I must admit though, lately it’s been something that’s been bothering me. Will perceptions of Freddie change as he grows up? As a baby and toddler (can I call him a toddler if hes never toddled?) hes always been very welcomed where ever we go. People have been very accepting of him. But as he grows up and becomes bigger will the acceptance continue? Will people still like the child who pulls hair, dribbles and spits his food everywhere in a few years time? Will people still think the child who is unable to feed themselves or use a toilet is cute? Will people still play and talk to the child who can’t talk back?  Will people still want to talk to the child with the inturned eye? 

The doctors comment has left me worrying over the future with Freddie. I always hoped as Freddie got older things would get easier for us but i’m now left wondering if it will only get harder. Will people accept Freddie as he grows physically into an older child while hes still remains mentally a baby. 

For the people who may decide that Freddie’s eye is so off putting that they can’t talk to him or his other problems bother them so much that they won’t interact with him, they should just know it’s their loss. If they can’t see past Freddie’s issues and see the smiley, happy, funny child who loves life then Freddie wouldn’t want to interact with you anyway. He only saves his smiles and laughs and cuddles for the best people who deserve them. 

So no doctor we will not be operating on our son for the sake of other people, we will not put him through the pain of his 6th operation purely for acceptance off people who don’t matter to us anyway. Anybody who loves or cares about Freddie will agree he’s perfect just the way he is. 

fred eye

Follow

Get every new post delivered to your Inbox.

Join 262 other followers