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All posts for the month March, 2012

Why a diagnosis is important to us

Published March 31, 2012 by swanfreddie

The day Freddie was born we knew he had syndrome of some type. We just didn’t know what kind. I never for one minute imagined we wouldn’t know what was wrong with him.
I can understand why alot of people would think that having a diagnosis isn’t really important. I’ve seen alot of people questioning the need for a diagnosis. For some people it’s not important but for us there are many reasons as to why it is.

  • Without a diagnosis it’s alot 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(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.
  • Filing out forms becomes a nightmare, and with a disabled child there are alot of forms to fill out! Theres 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 whats wrong with your child becomes hard & sometimes awkward. Alot of people assume that if your child isn’t diagnosed they will outgrow their problems.
  • Not having a diagnosis lead me to start thinking there was nothing wrong with Freddie & i was just a bad mum & it was all my fault.
  • 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.
  • If we ever wanted to have anymore children without a diagnosis we don’t know whether any more children will be affected.
  • 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 Freddies problems as we can’t simply just name a syndrome.
  • Alot 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 alot 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 childs condition is going to progress or deteriote.
  • Getting travel insurance for an undiagnosed child is made alot 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.

I’m sure the list could go on! For us we will always want a diagnosis of Freddies syndrome. The doctors think it will be unlikely so we may have to just come to terms with the fact that Freddie will remain a medical mystery. His own little syndrome unique to him.

 

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Physio

Published March 29, 2012 by swanfreddie

2 weeks ago at Freddies last physio session he was being a bit of a monkey & didn’t want to play. He was tired & grumpy & had no concentration so we didn’t really get any physio done. His epilepsy was playing up abit so that may have had an affect on him but I felt really disheartened.

Yesterday at physio was a different story, he was on top form! Physio commented at how happy & relaxed he was. (possibly due to his epilepsy meds being increased) We normally focus alot on work in his standing frame, but hes never really taken that well to it. The hope was he would stand in there for long periods of time but the most we could manage was 5 minutes but even that was a push. He’s now outgrown his current frame so we decided to try something else & get him to stand at the sofa. So with some help our physio sat Freddie on her knee & we put his favorite toy on the sofa & with a big push on his hips she got Freddie stood up, with his torso leaning against the sofa. He need his hips holding throughout but he did so well & he managed a good minute before he needed to rest his legs.

It was great to watch. I’m so proud of him. We have never been given any expections of Freddie. We have never been told he won’t walk or talk it’s just a case of lets wait & see but seeing him yesterday gave me real hope that one day he will! 

I can’t praise his physio enough. Shes fabulous with him. We have been let down alot by other nhs workers but his physio has always offered us so much support. As Freddie isn’t standing or crawling yet she is requesting he be sent for another hip scan to make sure nothing is being missed & also Freddies legs seem to have a mind of their own & constantly jerk & kick the floor so she wants that looking at too. More appointments for us but glad shes helping us to get things looked into. 

Hopefully one day in the future i’ll be blogging tell everyone how my fabulous son is stood at the sofa by himself! 

Tubes

Published March 24, 2012 by swanfreddie

Freddies been a tubie baby since 8 weeks old. I remember being in hospital with him and there were 3 nurses trying to get Freddie to take a bottle of milk. At this point I felt like the worlds worst mum. My son was losing weight because I couldn’t feed him. I remember thinking it must be something i’m doing wrong, maybe i’m not holding him in the right position or something. The 3 nurses also couldn’t get him to feed so next step was an ng tube down the nose. It will only be for a few days they kept telling me, just until he learns to feed..20 months & 2 ops later we now have a mickey button.

It was a hard journey in the begining. Freddie pulled the tube out constantly & as Freddie has such small nasal passages & went crazy when it needed to be repassed i left it to the experts to do, so we visited the hospital a good 4/5 times a week to get it repassed. We got to the stage where his face was covered in tape & his hands were in socks to stop him from pulling it out.

Then his face started to react to the tape & we ended up with a burnt, sore face.


For us the ng tube was a bad experience & as Freddies feeding wasn’t improving we were eagar to have a more permant feeding tube inserted. So in January 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 face & 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. 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 made life alot easier. So glad we made the decision to have it done. Freddies feeding has improved over the past few months but we do still rely heavily on the tube not just for food but for his medicines too.
To me and my family Freddies tubes are so normal & they are not a big deal. Although looking back through the pictures of our ng tube days bought alot of hard memories come flooding 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.

I have written this post as part of the #definenormal blogging challenge at http://www.justbringthechocolate.com/define-normal/

Sleep study results

Published March 20, 2012 by swanfreddie

Today has been fairly hectic! We started off with an appointment with the respiratory doctor in Alder Hey. Freddie had a sleep study a few weeks back & we were due to get the results. We had noticed pauses in Freddie breathing when asleep & it had also been noticed by a doctor during one of Freddies hospital stays. We were expecting the study to pick up maybe one or two pauses but we weren’t prepared to be told there were 28! The 28 weren’t through a whole nights sleep but just a few hours. Also they noticed when he was breathing he was struggling alot & he was having to work very hard to breath.
Freddie has a trigonacephaly (premature fusion of the metopic suture leading to a triangular shaped forehead) so is being monitored by the craniofacial team in Alder Hey. They have spoken to us about the possibility of operating on his skull(it’s a very horrible, full day operation which involves removing his skull & taking it all apart & rebuilding.) The results of this sleep study may further the need to do this operation. The respiratory doctor is going to be holding a meeting with the ENT doctors & the craniofacial team to discuss the sleep study results & see what the best route for Freddie will be.
Straight after that appointment we had to head to our next app of the day over in Chester to see our Paediatrician. We have just changed to a new paediatrician &  he seemed very nice. We told him that over the past few days Freddies epilepsy seems to have returned. It was decided that his medicines needed to be upped. His Epilim has gone up to 6ml twice a day & his clobazam up to 2ml twice a day. We just have to be careful that it doesn’t make Freddie too sleepy. Most of his other meds were upped to try & help control his reflux & dribbling a bit better.
Freddie is exhausted after today so i’ve just put him to bed. I felt horrible closing the door on him knowing he will stop breathing tonight in his sleep. I’m scared that he might just stop & not start again. The respiratory doctor assured me this would be very unlikely but it’s hard to not worry. Hes my baby after all.

Smile & carry on

Published March 17, 2012 by swanfreddie

When I blog most of it is about how hard life is with special needs child. I’m not going to lie & say it’s easy because it really isn’t but it isn’t all doom & gloom. We are generally a happy family. We do things a bit differently to the stereotypical family that people dream of having, but i’m sure every family has there only little unique ways of doing things. We are all different & unique. Life would be pretty boring if everybody you met was just like you.

Most of the time we are a happy family. We live our ‘normal’ life. We try not to dwell on what has happened to our Freddie as despite his problems he is a totally fab little boy who has taught us some amazing lessons. He has taught us to love in a way alot of people don’t know how to, he has taught us patience, he has taught us to appreciate the little things in life, he has taught us to celebrate the smallest achievements, he has taught us to fight for what we believe in & he has taught us who really is important in life.

Today we were living our ‘normal’ life doing ‘normal’ things. We were driving to the shops with Evie & Freddie sat in the back of the car. I turned around to pass Evie a toy she had asked for & I caught a glimpse of Freddie. I got that horrible but sadly frequent feeling in my heart when I saw him. That pain I feel that comes out of nowhere that I can’t control. It’s almost like out of nowhere you get a reminder about Freddie. A reminder that everythings not quite ‘normal’ That feeling hurts but most of the time I try to ignore it and carry on. You carry on because you have to. You carry on for the sake of your family.
There are constant reminders everywhere I look that make me realise that in our ‘normal’ world we are not quite ‘normal’ Seeing other children Freddies age can really hurt, seeing the type of toys he should be playing with & seeing brothers and sisters playing together like Evie & Freddie should, they are all a bit of a reminder of what we are missing out on. Everywhere there are little reminders but as time goes on it does become a bit easier to look at them and not dwell as much. I’ve become stronger & now most of the time I get one of my reminders it does still hurt but I then look at Freddie and smile and carry on just simply because I love him.

Letting Go

Published March 14, 2012 by swanfreddie

I wasn’t sure whether watching the BBC1 programme ‘Letting Go’ would be a wise thing to do. Clearly something that would be emotional for any parent with a child with special needs. I decided to give it a go but could barely see the screen for tears and was shaking the whole time.
Hearing other parents speak of their fears & hear how hard they are finding it makes me even more scared for the future. If I could be around for Freddie forever I would but unfortunately nobody knows what the future holds. I’m so scared to think where he would end up if nobody was around to care for him.
Hearing one family talk about the lack of support they get for their daughter made me so emotional. Hearing them say that “It seems the right outside support & care that indepant living requires only comes when there is a clear medical diagnosis” made me feel sick. What if Freddie never gets a diagnosis does this mean that he won’t be able to access enough care appropriate for his needs? Will he be left to struggle with everyday life?
Freddie might only be 21 months & there a possibility that he may never live to be old enough to need to leave home but if he does I hope by then the system has changed & there is enough support in place to do children like Freddie justice. The amount of fighting that parents have to do for their children is ridiculous and so draining & it’s about time appropriate measures were in place to make the process easier for everyone involved.
http://www.bbc.co.uk/iplayer/episode/b01dk4ch/Letting_Go/

Defining Normal

Published March 11, 2012 by swanfreddie

Like many special needs parents our house is begining to be over run with specialist equipment. After 21 months of seeing it all it just blends in. It’s normal. The meds, tubes, pump, syringes, bottles, milk, creams, chairs, bibs, specs, physio equipment, splints its all just normal. Possibly to other people who visit it us it isn’t but for us it’s so normal that it’s not a big deal anymore. Sometimes I even question if Freddies issues are really that bad as he is so normal to me.
One thing that other people may look at & think we are definatly not normal is our red box. It is what we take with us wherever we go. It hold all Freddies meds & bit & pieces that he needs. Epilim, Clobazam, Domperidone, Omeparole, Gaviscon, Movicol, Calpol, Neocate Active, teething gel & sachets, E45 cream, cooled boiled water, Hyoscine patches, Hydrocortisone cream, Toothbrush & paste, 2x thumb splints, syringes for meds, syringes for mic key button water change & feeding tube.
We keep everything in this box so that when we do have to go out we don’t have to spend ages gathering everything together. We then normally take another bag with nappies, wipes, spare clothes, alot of spare bibs, puree jar & feeding bib & glasses case. And another bag with feeding pump, giving set & spare mic-key button.

This box has lived on my kitchen worktop since Freddie was tiny. A normal everyday sight in my house, but for the majority of other people the site of so many meds could be a little daunting.

I do think we are in need of new snazzy meds box tho. Our red box is just an old celebrations choc tub. Maybe it’s time to update it a bit.

I have written this post as part of the #definenormal blogging challenge at http://www.justbringthechocolate.com/define-normal/