Daisy's Journey

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,...

15th March 2017 Due to daisy having CMV,  we had to go get her eyes tested to make sure nothing was wrong.. The worry that there could possibly be some sort of sight loss was horrible! When we got to Stoke hospital we was greeted by a lovely women who put some drops into Daisy's eyes to make her pupils enlarged, this allows the doctor to look properly into her eyes.  Daisy broke her little heart while putting these drops in! Worst thing in the world is seeing your children cry.  But once they had finished putting drops in she soon went back off to sleep.  We then had to wait 20 minutes before we could see the eye doctor, to ensure the drops did their job.  More waiting... Dr Jospeh, explained what she was about to do and what she was looking for. The results to the eye test was fantastic news!! Daisy's eye sight was healthy for a 6 week baby. I was completely over the moon. We have to go back in 3 months for another check up, but this is standard anyway wi...

14th March 2017 Dr Clark got us an appointment with a pediatrician today over a stoke hospital. Due to Daisy's hearing being caused by COngenital CMV from when I pregnant, it comes with other symptoms that we need to get checked. ( I will talk about what CMV is in another blog very soon ) .  We got there at 9:30am. Got greeted by a lovely nurse who we handed a letter to off Dr Clark explaining what had been going on in recent weeks with D aisy. We were put into a cubical where we had to answer some questions about D aisy, she got weighed which she is now 10lb 9oz. which is a really good sign , she is c ontinuing to put on weight .   We then got greeted by the pediatrician , who didn't really have a clue why we was there, he thought we was there for D aisy's hearing when we wasn't! W e was there for a check up on C onge nital CMV.   H e asked a few questions about D aisy's overall health. which as far as I am concerned is perfect. The...

March 10th 2017 I'm currently sat in a boxed room, with my 6 week old daughter all wired up for her screening test to be done by the audiologist!  She's just finished the left ear and there wasn't a response  I think we kind of know what the outcome is going to be after she's done her right ear.   But I am still thinking positive! There's so much that can be done these days to help young children to hear. This is definitely going to be an eye opener for us and the family... Two hours later, we have a result of no response in both ears, which I knew anyway. Sat there trying to take in everything the audiologist is saying and I'm literally just staring at her and nothing is going in!! There is so much information to take in, its a good job my mum comes with us as she repeats it all back to me after, but in little bits at a time. So the audiologist also took molds today of D aisy's ears, which will be sent off for her hearing aids, which they will ...

27th January 2017 I gave birth to our second very beautiful little girl, Daisy.   We couldn't be any happier with the family we had created.   At just 14 hours old D aisy had failed her newborn screening, there was no response in both ears. The women carrying out these tests reassured me that it was completely normal for babies to fail there first newborn screening, especially when they are early      (Daisy was 2 weeks early ). We got told to go back to Burton hospital on the 29th which would make Daisy 3 days old already. 29th January 2017 I was sitting in the corridor waiting to be seen by the audiologist, feeling very confident that Daisy would pass her newborn screening and we wouldn't have to go back to another hospital for a very long time. Sitting in the room, quite as a mouse, with Daisy l ying in my arms while she has the newborn screening tests done I was just thinking that everything was going to be f...