Daisy's Journey

The questions I get asked a lot is if I'm okay? how am I coping with it all? do we need anything.. Truthfully, I'm actually really great! I wasn't but as the days goes by it does get easier, trust me. As a mum of 2 its hard to even get a minute of peace to even think about anything, I guess that's a good thing though. as for people asking if we need anything.. I never ask for anything, as I hate asking people for things. Daisy is now 11 weeks old, She's a right little chubster, almost fully in 3/6 months clothes. She has a very strong neck and almost keeping her head up. she'll do it for a while and get tired and it'll just flop. She's constantly smiling at us, which is the best feeling in the world for a mum of a daughter who is deaf. We had another first tonight and Daisy actually laughed for the first time. I didn't think we'd ever hear her laugh just yet, but clearly acting like a prat does the trick! She is getting such a litt...

7th April 2017 Sat in bed tonight with a massive smile across my face! Feel like we could finally be getting somewhere for Daisy. After worrying about this anti-viral medicine (valganciclovir) and how it was going to effect Daisy. We actually got told today by Dr Hackett that Daisy won't be needing the anti-viral medicine. To some people you might be thinking why is this a relief shouldn't Daisy have this? The answer to that is no she shouldn't. Daisy's ear's can not get any better, she is profoundly deaf in both ears. Not even hearing aids work for her. So even if she took this Anti-viral medicine, It wouldn't help her hearing at all. She would still be profoundly deaf. If her hearing loss was at 60% then yes the valganciclovir would be given to her straight away preventing it to get any worse. But Daisy's hearing is already at its worst, so the anti-viral medicine is just pointless to give to Daisy. She is also not symptomatic to any other signs tha...

I am so very annoyed!! Due to Daisy having CMV, Which caused her to have the hearing loss. There is a anti-viral medicine that babies can have who have CMV before their 4 weeks old. With Daisy not being diagnosed with CMV until 6 weeks, we was way out of the time bracket! This medicine can't cure the infection, but it can slow its progress and limit the possibility of serious damage. Ganciclovir  is an antiviral medicine often used to treat CMV. An oral form called valganciclovir is often used. However, it can't be prescribed during pregnancy. Ganciclovir can cause several side effects, the main one being bone marrow suppression. Bone marrow is the spongy material at the centre of some bones. It produces the stem cells that produce blood cells and platelets. Suppressed bone marrow can lead to a low white blood cell count, which increases the risk of serious bacterial infection. Low levels of platelets can cause increased bleeding, and a lack of red blood cells can c...

29th March 2017 Its actually been a very quite week for us, just one hospital appointment to get Daisy's new moulds fitted in for her hearing aids. We have they to get them changed every 2 weeks, due to how fast she is growing! so as soon as we fit some in, we have to create new moulds straight away. Hearing aids are a nightmare to keep in when the moulds are to small for her ears, we try to keep them in as much as possible but sometimes it's just impossible! specially now that daisy is more active. But we do try our best, I think the longest we've kept in them so far is 5 hours.. which is good going for most people.  There's still no improvement on the hearing side with these hearing aids. A little bit of me just thinks what's the point in trying to keep these hearing aids in when they don't work! But I'm keeping calm and cool about it all, and just trying my very best for daisy. Amelia, doesn't quite understand why daisy has to have hea...

Cytomegalovirus (CMV) is a common virus that belongs to the herpes family of viruses.  It's spread through bodily fluids, such as saliva and urine, and can be passed on through close contact with young children, such as when changing nappies. Most cases of CMV don't cause symptoms. If you do have symptoms, they're often similar to flu or Glandular fever , and include a high temperature (fever), sore throat t and swollen glands. You can get CMV at any age, but many people are first infected during childhood and are unaware they've been infected. When you develop a CMV infection for the first time, it's known as primary CMV. It's thought that 50-80% of adults in the UK are infected with CMV. Once you've been infected, the CMV virus stays in your body for the rest of your life, but in most cases it remains inactive and doesn't cause further problems. Congenital CMV If a pregnant woman has an active CMV infection, the virus can be passed to her u...

Monday 20th March Today was our consultation meeting with ENT. To discuss how Daisy has developed her hearing loss, what stages are we going to be taking, and any questions we may have. There was the consultant, a community paediatrician, Ivan and 2 nurses. We pretty much know what has caused her hearing loss and this is CMV! CMV   or cytomegalovirus is a common virus that can infect anyone; it is harmless to most people but can be very dangerous to unborn babies.  Congenital   CMV   causes more birth defects and deaths than Down’s syndrome, Toxoplasmosis, Spina Bifida or Rubella, yet no one has really heard of it until it affects a member of your family!  About 1 of every 5 children born with the virus will develop permanent problems due to the infection – nearly 1000 babies every year. These problems include hearing loss, physical and motor impairment, seizures, autism, learning difficulties and visual impairment.  I wasn't aware I had this illne...

Sorry I haven't blogged in a few days, I' ve been so busy as its been my birthday. I just wanted a weekend of smiles and to not think about anything that is going on. But I'm back and I'm ready to finally keep you all up to speed on what is happening. Friday 17th March was hearing aids fitting day. We was already warned that the hearing aids may not work, due to how severe Daisy's hearing loss was, so we wasn't getting our hopes up, but there was that slight hope in our hearts that maybe it may do something even if it is very slight.  Ivan and Mandy the Audioloigist's at Cannock, programed the hearing aids and then fitted them to Daisy's ears. Which daisy did not like, but once they were in she settled back off to sleep.  The moment of truth came when they finally turned them on, Bradley was calling Daisy's name, there was no response. I still had a sleeping baby in my arms. Ivan the head of audiologist clapped as loud as he could,...