Sunday, 31 July 2016

A New Addition...

As you have read on this previous post "Big Brother" we were due to have a new addition to the family .....

On the 14th June 2016 Faith made her entrance into the world after what proved to be a very difficult , most painful labour and birth which resulted in me needing a LOT OF stitches! But despite all this she came out pink and crying...so different from my other children. When she was weighed the midwife looked very surprised and announced she was a hefty 10lb oz!  I remember asking her "are you sure?!" "Are the scales right?!" We had to be closely monitored because I had GBS and needed IV antibiotics to prevent Faith for becoming seriously ill. Apart from a low temperature and reluctance to feed she was deemed healthy and after much persuasion from me I convinced them to discharge us that night back to the comforts of our home!

While we were on the ward Faith underwent checks and found to have loose hips so referral to physio was made for a few wks time and then she had her new born screening....they said she had failed but as it had only been 6 hrs since her birth they said it was normal for them to fail and she would just be retested in a few wks time so we thought nothing of it and went home to enjoy every moment of being a family of 6. When Roo first saw her he was very wary and wouldn't come near her but gradually over the coming weeks he started to accept her although he does tend to ignore her majority of time only checking on her when she cries or needs a nappy change... the older two completely adore having a sister and fight over who turn it is to hold her!

Physio assessment at 4wks showed that her hips had rectified themselves and would not need treatment which was a relief...the same week we also had her repeated new born screening... they applied the wires and we waited while they did the testing... when the audiologist sat down I was fully expecting her to say all is fine and we would go home but it was not to be...she said the test had showed a significant hearing loss...as soon as she said those words it was as if time stopped, I could feel the tears in my eyes, sensing I needed a few mins she went out of the room and i just burst into tears...poor hubby didn't know how to react to my reaction, he had suspected Faith could have issues. Also it was only 4 wks since the birth so I was still very hormonal and cried at the slightest thing but being told that Faith was deaf I will admit that I was devestated. We had prepared ourselves for the possibility of Faith having the same as Roo as had to meet Roo genetics etc during the pregnancy but this was unexpected as our 3 boys are hearing so never ever thought she would have issues with her hearing.

Telling the older two was hard....Lucas has just accepted it but Leo was quite sad, a bit emotional, he had struggled with accepting Roo's issues and really wanted his sister to be like him and Lucas. But after explaining what was going to happen next and he knows what to expect as we are deaf ourselves so he has already experienced and once he got over the shock he has been fine since.

I found my reaction quite surprising to be honest... I remember when we first started the fertility treatment to start a family we were asked how we would feel if our child was born deaf and i remember at the time saying it didn't matter but as it was we went on to have 3 hearing children. I had expected the same for Faith so to be told she was deaf I got all upset and thought it was the end of the world but the more I think about it after speaking to other mums who have had hearing and deaf children they have felt the same as me and its not that we are upset that our kids are deaf , its being upset because at that instant the future you imagined for them was now going to be totally different. Myself and my husband know first hand how hard it was growing up in a hearing world, attending hearing schools and struggling to follow everything, the regular appointments , assessments, meetings, seeing parents fight endlessly to ensure we got the support we needed , to get the right hearing aids etc. This wasn't what I wanted for Faith. I already have regular appointments and meetings for Roo to ensure he continues to get the support he needs and to have to do it all with Faith was overwhelming.

We had another appointment last week for more testing this time to work out her levels of deafness and its come back borderline profoundly deaf  ( there are 5 levels - mild, moderate, severe, profound and total loss) . This means she needs strong hearing aids. We have been told that if they don't work we may need to consider cochlear implants to give her a chance to hear but we need to trail the hearing aids first to see how she reacts/copes. We have to see a paeditrician this week to discuss everything and get mould impressions made, aids ordered etc. I'm now accepting her deafness ...it's a new journey for us all but luckily there seems to be a lot of support out there as we have been referred to teacher of the deaf in our local area, speech therapy , NDCS and also I have the support of family and friends...

A new journey begins for us all alongside Roo's own journey...hence why I've changed the name of this blog as I will write about Faith's journey too. ..

Friday, 29 April 2016

Teamwork is important...

When we first started our journey we had a lot of referrals to many different departments to have so many different tests to find a diagnosis. We were warned that it may take some time but they would make sure we had the support and input from various professionals. At the centre of it all at the beginning was the paediatrician. It was them who said "yes there is something wrong with your child and we need to find out what " . They make all the referrals to the different departments and at first I thought how lucky we were that everything about Roo's care was co-ordinated, despite having no overall diagnosis.

Every time we went to see the paediatrician she would spend a long time with us going over everything that's been happening since she last saw us, every appointment was then written in a report which on the back had a huge list of the various names of professionals who were involved in a certain part of Roo's life.



The different professionals Roo is under at the moment....

But as the years have gone by I am noticing small changes...as more and more tests came back either normal or abnormal but leaving the professionals stumped, some of them started saying they could no longer help as they didn't know what was wrong leaving us to deal with certain things on our own. We had to fight for certain services, equipment that would make life easier but we got there in the end only because we persevered and didn't give up being a voice for our son.

Sometimes we get referred to certain professionals who then say after the first appointment , " we don't know what to do for the best, his understanding is limited so maybe it would be best to wait till he is older or you get a diagnosis and then they will discharge us. The person who made the original referral would redo it again but the same thing would happen and we just end up going round in circles. If I could afford to go private I would, but alas I cant and I am not sure if the NHS would accept a report from a private consultation as Ive heard of other mums going down this route only to be turned away by the NHS professionals who probably have a grudge against private input.

While most of Roo's care is co-ordinated we are finding that when we go to certain appointments they no longer have the regular input from the others so we end up having to explain everything , any new issues, new problems etc.

As a parent of your child, you would expect to be informed of all decisions concerning your child and we have always been informed and given options that we could decided what we wanted for the best but lately even that is starting to disappear...After trying to get a repeat prescription and was denied saying that it had been decided that a break was needed, that we would need to wait till an appointment over 5 wks away to discuss it, panic ensued and Roo's health nurse who is fantastic in getting in touch with various professionals, making referrals etc who tried to find out for us the reasons behind this decision. She agreed that it was unfair that the decision was made without consulting us, she even hinted that they were stuck and no longer knew what to do with Roo. Where did that leave us? Ive cried , stamped my feet, complained etc but only time will tell if they will listen to me. Despite being told at the beginning of the year that he would remain on the meds until the next appointment due to personal circumstances with my problematic pregnancy and they have gone back on their word and done the opposite all because his sleep study came back normal. So instead of taking it easy during the last month of my pregnancy I am now constantly stressed, upset seeing the toll its taking on Roo and the rest of us as a family. Its so frustrating as just because he is yet to get a diagnosis doesn't mean that he no longer needs the medication, that he no longer needs that bit of support , that it doesnt matter how much of an impact it has on his quality of life.

Being undiagnosed should not be a barrier to getting support, it should not mean that parents who already have a lot to deal with have to spend time constantly fighting to ensure their child gets what they badly need. It should not be up to the parents to do all the running around , to be the one trying to co ordinate their child's care and support.

This year SWAN UK has a Big Ambition - they want to ensure that every one of their families has the support they need , when they need it. They want it to be known that being "undiagnosed" isn't always temporary as the genetic causes of some conditions may never be known. Every child regardless of whether they have a diagnosis or not should be able to receive high quality co ordinated care and support both in hospital and at home.

To achieve this Big Ambition they need funding as their main grants from the Big Lottery end this year. So raising funds is essential.
You can also donate by texting SWAN11 £ ( any amount up to £10 ) to 70070