Mireya means Miracle

Thank you everyone for your kind lovely words when we posted about Mireya’s diagnosis of Rubinstein-Taybi Syndrome it honestly means so much to us. We posted just to raise awareness and let people know how she was getting on as a lot of messages we was getting it’s easier this way to update. We would like to say a huge thank you to all the trustees at the Showman’s Children’s Charity who have agreed to help fund Mireya’s Speech Therapy. We honestly can't thank them all enough for this. This last few week we have really felt the pressure and feel like we have been hitting our heads against a brick wall with no one knowing about Rubinstein-Taybi and not wanting to help Mireya it really has been difficult. Until Sunday 26th May i found another parent who's 4yr old has RTS on Instagram so i started messaging her she give me lots of advice and also added me to privately closed closed for people with RTS i added a post asking if anyone else had a children with the full EP300 gen...

We are starting the blog again as a lot of people are asking questions on whats happening with Mireya now and how she is getting on and we thank everyone that asks about our little girl. Since having Our second beautiful baby. We have had a lot going on lots of hospital appointments, admissions to hospital and not really know where to turn for help and still looking for someone that will take Mireya's case on but least now we know what is the problem and we won't stop until we have got our beautiful little Miracle all the help and care she needs. Finding out the diagnosis    We had a appointment at Sheffield children’s hospital on 28th February following a lot of blood tests Mireya had in December 2018 to try find out why Mireya wasn’t growing. We sat down me, Braiden, my mam and Nanny Lyn to get the result. The consultant explained that he would need to refer us to a genetics specialist as he didn’t know or heard of the problem before and it’s very rare only 1 in 125,000 ...

I haven’t updated or wrote anything in a while as Mireya has and is still continuing to do so well since having her heart surgery. We have been enjoying every single moment of her and living a normal life with her. She may still be small but she is defiantly mighty. She is trying to walk standing on her own hitting all her milestones for her corrected age and we could not be prouder of our little miracle. We even got a little get away with my lovely Mam, dad  and James to Tenerife which Mireya loved just as much as us. On Thursday 6th September we got up excited to go away and just as we was getting ready to leave I got a unexpected phone call from Leeds hospital it was the liver consultants secretary to book Mireya in for surgery to remove the cyst that was found on my 20 week scan on Thursday 13th September I was in complete shock and broke down cause I just didn’t expect it as last we heard they was reviewing the cyst again. I give the phone to Braiden to talk as i couldn...

Last 3 days have been long, emotional but at the end rewarding. On Thursday morning Mireya had de-satted a few times but this was due to her body inside been to warm and she was unable to settle. The nurses/doctors have been so shocked at Mireya cause she has been on that many sedation medications she should have been still and relaxed but Mireya been Mireya kept them on their toes she was still kicking and arms going everywhere trying to get the tubes out and three nurses had to hold her down. So they had to give her a really strong medication which paralysis the body just so she would settle to let her body rest and heal. On Friday she had a big desat it scared me she had to have a little bit of help from the nurses but after about 2-3mins she was back to herself as if nothing had happened. The doctors decided she wasn’t liking the ventilator tube so took the tube out to see how she would be then. And no one could believe it she was lovely and settled the best she has been since op...

I’m starting this post from the moment I opened my eyes at 5:15am I just stared at our beautiful little girl praying that today was the day she was going to have the operation that will be the making of her. I got dressed packed the campbed away and then Braiden come at 6am then followed was my mam & dad, jade, nanny Lyn and Emma all come to be there for us both and Mireya. They was there the day she was born and all there for another big day in our little miracles life. At 7:55am the nurse come for us to take Mireya to the theatre every kissed her and then we walked to the theatre me and braiden took our baby girl in. I sat her on my knee and a mask was placed over her mouth and nose and within 20 seconds she was a asleep we laid her on the bed &  both give her a kiss  and then walked out. It was the hardest thing we have ever had to do walk away and leave our little girl there. We went back to the ward got our things and took them to the car until we get our paren...

I haven’t updated since last week cause it’s been one big emotional rollercoaster for us.  Last Tuesday (22/5/18) we took Mireya in to LGI for her operation to be done on Wednesday (23/5/18). All was good Wednesday morning there was a bed in the intensive care unit and she was 2nd case to go to theatre. The surgeon and the anaesthetist had been and spoken to us all consent forms was signed and we was just waiting for them to call for her. 20minutes before surgery unfortunately a poorly baby had been fetched in and took the last intensive care bed that was empty for Mireya so the operation got cancelled. We was absolutely gutted emotions was running high but that poorly baby needed it and we got told we could bring Mireya home and wait for another date. we packed our things and come home awaiting a phone call. We have now been given Wednesday 30th May for Mireya to have the operation and she is 1st case so this means the operation is in the morning. So if there is a bed Wednesday...

Mireya’s operation got moved again from Tuesday 22nd  to Wednesday 23rd May. Yesterday (21/5/18) We was on nerve ends waiting for another phone call to cancel the operation again every time the phone rang we just was so nervous cause we didn’t want it to be the hospital. But the call didn’t come. Then reality really kicked in 😬 we are going in hospital and our baby girl is having the surgery. So this morning (22/5/18) I woke up at 5:30 and that was me up waiting for 8:30am to ring the ward to see what time they wanted Mireya in. Time was going so slow but eventually we got to 8:30 and rang the ward and they was a bed available and we had to be at the hospital for 2pm. When we got here Mireya had observations done and then we met the surgeon. Mireya’s operation is gonna be tomorrow afternoon and will be 6 hours long and then we are unable to see her for 2hours after while they sort her out and get her comfortable in intensive care unit. But the surgeon will ring us as soon as su...