Daisy's Journey

Currently sat in a side room with Bradley while Daisy is laying right in front of us on the bed fast asleep. We finally got the go ahead for the hearing test! Daisy no longer has fluid behind the ears. Daisy got sedated at 9:50 and went off to sleep at 9:57 fastest they've had yet to go to sleep. We have the audiologist currently in the room setting Daisy up with all the wires  etc.. she looks so peaceful! But don't know what I'm going to do for a few hours while she's having this test. Best thing about today is that we will find out if Daisy needs cochlear implants or if a hearing aid can work if it was higher setting. But he said more than likely she'll need cochlear implants because of it being cmv that caused this. 10:10 and the test has begun. Mine and Bradley's ears are going crazy already because we can hear the noises that are going into Daisy's ears. Our tummys are rumblings as we've had no breakfast just a cup of tea. Can't sto...

Daisy is now 6 months old. A very happy chunky baby. Still not sitting up, but were getting there. Her head control is a lot better now, pretty much perfect! which we are super proud of! She tries her hardest to pull herself up and sit up by herself, I think in a few weeks time we will be there. She so much better on her tummy now. A few of yous messaged me and gave me some advice about putting a towel/blanket rolled up under her chest when on tummy time. first few attempts didn't go to plan Daisy just screamed. But now she can do it without a blanket under her. Her Bumbo has worked wonders for her head control and strengthening her back. So thanks again for the advice. She has now learnt how to roll, doesn't like rolling from her back to front but does do it as long as there's' toys around her. But mastered to front to back roll! Daisy was surprising everyone with her babbling, as most babies with profound hearing stop at a certain age, and even though da...

Today we went for a hearing test at Nottingham. Also today we got sent away and didn't end up having the hearing test... Last night I couldn't sleep one bit. I was so nervous for Daisy to have this hearing test as she was being sedated. I know a lot of people get sedated, but with her being so young I was worrying. Anyway... I gave her, her last bottle at 4:30 as she had to have finished her milk at 5 and wasn't allowed another bottle until after she came back around after the sedation. She was very good drank her 9oz bottle and went back off to sleep. My alarm went off at 6am and oh my, wasn't I tired. I hardly slept anyway as I think it must of been 2:45 when I finally went to sleep and getting up at 4am to change Daisy's nappy and feed her, I think it was about 5:15 by the time I went back off to sleep. We got to Nottingham at 8:15 and by this time Daisy was awake and it had been 4 hours since her last bottle. she was full of smiles for the nurse's...

29th June 2017, we received a phone call from Nottingham. We are finally getting closer to our daisy hearing soon! We have a hearing test on the 25th July at Nottingham Queens hospital. This test to see what sort of hearing Daisy actually has. At the moment they have only tested to 90hz ( I think that is right ) so on this test they will be doing on the 25th will be testing much higher. Daisy will need to be sedated for this test. Hoping for a really good news, that she passes the level of hearing etc. for what she needs for cochlear implants. When we first started this journey, they warned up it was long process, they are right. Everyday we are constantly checking the post, phones for any emails or missed calls. It is literally horrible! They also warned us that we would have so many hospital appointments, there about that too. I cant even count how many times we have been to a hospital and in fact how many different hospitals we have been too. We don't mind at all, not if i...

Any of you mummy's or daddy's ever thought that something you thought was impossible could actually be something real?  Well we think something is going on with Daisy's right ear! More than likely going to be nothing but I guess we keep hoping there might be something there. Every time I put the right hearing aid in she just changes, I can't even describe it! She straight away try's to look for the sound, (well we think she does) and she lets out the biggest smiles and giggles with it in. The left ear there is nothing at all,no smiles no giggles. We can make her laugh and smile without them in but it's hard work!  When we went to see mandy one of many of our audiologist's to sort out Daisy's new pink hearing aids she also thought what I was thinking for weeks! She told us it could be nothing at all, or it could be a slight hearing with it in, even though she failed all hearing tests. Or it could be there is some stimulation in the right ear which is...

Our teddy picnic was a huge success! Close family and friends turned up to help spread awareness and they generously donated money towards the CMV Action charity. So far we have raised £120 which is more than I could have hoped for. Some people have donated straight to the site also. We started the day by eating our picnic as everyone started to arrive. While waiting for everyone to finish eating a few people started playing football games. Once everyone was ready we had a game of rounders which I think my team won. Then we played guess the sweets in the jar which Kerry won. And then we played a game of football to end a great afternoon! We are trying to find other ways to raise money before the month is up for CMV, so my mum is hoping to do a bake off week at her work, where her work colleagues will pay a £1+ towards the cake they would like to eat. Mum also did this for national deaf awareness week and raised £150. We are hoping to be able to schedule a fun day at o...

Just wanted to take this time to actually thank everyone for being so kind and lovely towards me and my family! The lovely emails and comments I get from you all are truly amazing. These two charity's have a big space in my heart, the amount of help we have had off the people who run the charity has been amazing for us. Helping us along the way of our journey, answering any questions we may have, helping us make our decisions easier.  I just can't thank them enough!  I  also just can't thank everyone enough for their love and support for us. I truly am grateful to have such wonderful family and friends around us. I have also made quite a few friends since making this blog who have also been a massive help. Speaking to people who have been on the same journey as we are on, is very reassuring! My email is always open to people who want to chat about anything, I may not have been on this journey for very long, but 4 months seems to have be a life time for us a...