Quick update..
Daisy is now 16 weeks old. She is a right chunky monkey weighing in at bang on 15lbs. Nothing like my first Amelia-Lily, who was always so tiny and still is.
We also had a letter about Daisy's ECG that she needs. Dr Thomas referred her to county hospital. We got a letter one morning to tell us to just turn up any day Monday - Friday between these times. while I was reading it I had a phone call from county hospital, for them to tell me that they cant carry out the ECG on Daisy as she is to young. so we need to go Birmingham children's hospital or hopefully stoke if they do it. On the phone I probably sounded really rude to her, which I did apologise for. I just didn't understand why they would send a letter out ( knowing her age ) and then ring me saying they cant do it. Doesn't make much sense if you ask me.
On the same day I had a phone call of Dr Hackett who is from heartland hospital in Birmingham, and he confirmed that Daisy was born with congenital CMV. Which we knew already but we needed to tick it off the list of things we needed to know for sure.
I do have a few concerns about Daisy. She not very strong with her neck. She is, but only to a point. I don't know if it is because she is a lazy baby, or she actually struggles in general. But when on her tummy she literally face plants the floor and doesn't lift it up. I was thinking if it was because she is deaf and there nothing to make her lift her head up to. Like babies who have full hearing, would lift their head up to sound, and you calling there name etc.. Daisy is no go. She holds her head a lot better the last few days while sitting on my lap and holding her up right on my shoulder. But there is always that thought at the back of my head that maybe CMV has something to do it aswell. We will soon find out I guess.
Daisy is a proper little chatter box now! Which we didn't think we'd ever hear. You get told your child is deaf you just think they wont be like a normal baby I guess. But when the teacher of the deaf came out she was very surprised that Daisy was still cooing etc.. Which is very good sign for her! makes me think maybe she can hear something with the hearing aids, but I guess we will never know. I keep going with the hearing aids as much as I can, just hoping she can hear some sort of sound. I cant wait for her pretty pink hearing aids to come, instead of boring beige.
we are not just waiting to hear from a few Doctors for when Daisy is 6 months old which isn't far away! 2 months will soon fly by. She needs another eye test next month in June. july/August time she'll be having her hearing test over at Nottingham hospital, she's also back over to heartland hospital to see a Pysio and Dr Hackett again. We also see our ENT consultant over at county hospital again. So many hospital. I should keep a tally of all the different hospitals we have to go to this year.
I bet Daisy's thinks oh I'm here again.
Not much has been happening really at the moment. We had an appointment with Dr Oso on Monday 22nd may. I can honestly say it was most pointless appointment we have had yet. Is that bad of me to say that? We waited longer to see him, than the time we was actually in the room with him. We thought this appointment might be the results from Daisy's MRI Scan. But for some unknown reason no results have been sent over yet. typical! We was worried it might of got lost from when we had the cyber attack at the hospitals, as it happened just an hour half after we had left the hospital! I hope they have them because I don't think I could go through it again, with trying to get her to sleep and making sure she doesn't move in the MRI Scan. Complete nightmare but worth all the stress in the end hopefully.
We also had a letter about Daisy's ECG that she needs. Dr Thomas referred her to county hospital. We got a letter one morning to tell us to just turn up any day Monday - Friday between these times. while I was reading it I had a phone call from county hospital, for them to tell me that they cant carry out the ECG on Daisy as she is to young. so we need to go Birmingham children's hospital or hopefully stoke if they do it. On the phone I probably sounded really rude to her, which I did apologise for. I just didn't understand why they would send a letter out ( knowing her age ) and then ring me saying they cant do it. Doesn't make much sense if you ask me.
On the same day I had a phone call of Dr Hackett who is from heartland hospital in Birmingham, and he confirmed that Daisy was born with congenital CMV. Which we knew already but we needed to tick it off the list of things we needed to know for sure.
I do have a few concerns about Daisy. She not very strong with her neck. She is, but only to a point. I don't know if it is because she is a lazy baby, or she actually struggles in general. But when on her tummy she literally face plants the floor and doesn't lift it up. I was thinking if it was because she is deaf and there nothing to make her lift her head up to. Like babies who have full hearing, would lift their head up to sound, and you calling there name etc.. Daisy is no go. She holds her head a lot better the last few days while sitting on my lap and holding her up right on my shoulder. But there is always that thought at the back of my head that maybe CMV has something to do it aswell. We will soon find out I guess.
I have just brought her a chair that goes on the floor, abit like a bumbo but a lot prettier. I will keep going with that and see how she does. It might just be me worrying and me pairing her up with her sister who was very advanced for her age.
Daisy is a proper little chatter box now! Which we didn't think we'd ever hear. You get told your child is deaf you just think they wont be like a normal baby I guess. But when the teacher of the deaf came out she was very surprised that Daisy was still cooing etc.. Which is very good sign for her! makes me think maybe she can hear something with the hearing aids, but I guess we will never know. I keep going with the hearing aids as much as I can, just hoping she can hear some sort of sound. I cant wait for her pretty pink hearing aids to come, instead of boring beige. we are not just waiting to hear from a few Doctors for when Daisy is 6 months old which isn't far away! 2 months will soon fly by. She needs another eye test next month in June. july/August time she'll be having her hearing test over at Nottingham hospital, she's also back over to heartland hospital to see a Pysio and Dr Hackett again. We also see our ENT consultant over at county hospital again. So many hospital. I should keep a tally of all the different hospitals we have to go to this year.
I bet Daisy's thinks oh I'm here again.
She's a little trooper and I couldn't be any more proud of her and how well she is doing with everyone poking there fingers and gadgets down her ears.
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