sorry it’s been a while since I have updated the blog. We have had lots of appointments lots of hurdles and a lot of up and down days but onwards and upwards. Our 2 little girls are the sunshine of our lives 🎀🎀
In July Mireya had another hearing test, she still has lose of hearing in her right ear but there going to leave it till November and then if its still the same then we will have to discuss Grommets or Hearing Aids.
We then had another eye test for Mireya and her vision in her right eye is very long sighter and slightly long sighted in her left eye so she now has glasses and we think she looks even more beautiful with them. They have give her glasses now to try provent her eyes getting worse or possible lazy eye. Since putting the glasses on in the opticians she hasn’t touched them she knows she can see better with them. As we walked out the opticians our eyes filled with tears watching her look at everything completely different as if it was the first time she had see the trees the buildings family members it was lovely the way she reacted to everything.
We Then had another big week coming up with the trip to London to see the Genetics consultant who knows about RTS and hopefully will be able to help us with more test and referrals to top specialists in all different fields that mireya needs help in. So we took Vienna to my sister for her first sleepover with the Grays and I was so great full that she had Vienna so we could concentrate on Mireya and made it a lot easy thank you Jaime 😘
So 15th august me, braiden, Mireya, my mam & nanny Lyn jumped on a train to the big city. We went to Guys hospital to meet genetics consultant we went in and straight away he started telling us more than we had been told and explained things others wasn’t able to tell us. This appointment was so positive for us and it was nice to hear it all from someone that had seen and knows about other cases of Rubinstein Taybi Syndrome. He did say before we went into the appointment he thought Mireya was going to be in the bottom 30% of cases but after seeing and reviewing everything he thinks she is doing fantastic and actually in the top 30%☺️
He is happy with Mireya progress and said we have got a few steady years now so we will see us on a yearly basis but if we need him for anything at all to contact him and he will see Mireya.
After the trip to London we finally got referrals through for physio, allergy clinic, dermatology all what we have been waiting for since may and the doctor we seen lost the referrals and forgot to re do them all 🙈 after phone all different departments and finally the health visitor putting a complaint in and re doing the referrals.
While waiting for these appointments 2 days before the physio appointment Mireya finally held on to her walker and walked up the trailer. again we cried happy tears to a lot of parents this is just normal but for us this is just a big massive milestone. We just couldn’t believe it as we got told she might not walk till she is 3/5 year old.
When we went to physio they was very impressed with her standing and cruising around the furniture and offered Mireya to try a walking aid a lot of RTS children have the aid to help support them and stop them getting frustrated not been able to do something. So they fetched the Kaye walker in and tried Mireya. They couldn’t believe it straight away she took to it. They normal don’t let you bring it home straight away as they need to see fully that they can use it correctly but they was that impressed with how she took to it we was aloud to bring it home straight away. It was white with black dots on like something off dalmations so I give it a little make over and made it nice and pink for her. She has been fantastic on it.
Our only issue again as been shoes we have tried everywhere to get size 15 with hard soles but as there so small there is only pram shoes with soft sole. So a good friend of my sister sent me some pictures of ways to make some for her. So I went and bought some soles and braiden cut and glued them to mireyas shoes and there perfect so she now has some shoes.
Mireya’s nursery are holding a funday in aid of the Showman’s Children’s Charity this is so good that they are support this charity. We are so thankful and great ful to the nursery they have been absolutely fantastic with Mireya and helping her so much in her development.
Mireyas speech therapy is coming on fantastic she now can sign More, Food, thank you. She has the understanding of no, stop, wait, go, quick, eat & finished when we do these signs she shows facial expressions or sounds that we know she understands.
The next couple months are gonna be full on as we have lot more appointments and therapy’s.
Vienna and Mireya are a little pair of characters now and fighting over toys. Vienna has took a liking to mireyas glasses and she whips them off at every chance when Mireya is passing her. Vienna is such a happy content baby and we are blessed with our two beautiful baby girls.
We would like to thank everyone again for all your continued support it really means so much to us all 😘
In July Mireya had another hearing test, she still has lose of hearing in her right ear but there going to leave it till November and then if its still the same then we will have to discuss Grommets or Hearing Aids.
We then had another eye test for Mireya and her vision in her right eye is very long sighter and slightly long sighted in her left eye so she now has glasses and we think she looks even more beautiful with them. They have give her glasses now to try provent her eyes getting worse or possible lazy eye. Since putting the glasses on in the opticians she hasn’t touched them she knows she can see better with them. As we walked out the opticians our eyes filled with tears watching her look at everything completely different as if it was the first time she had see the trees the buildings family members it was lovely the way she reacted to everything.
We Then had another big week coming up with the trip to London to see the Genetics consultant who knows about RTS and hopefully will be able to help us with more test and referrals to top specialists in all different fields that mireya needs help in. So we took Vienna to my sister for her first sleepover with the Grays and I was so great full that she had Vienna so we could concentrate on Mireya and made it a lot easy thank you Jaime 😘
So 15th august me, braiden, Mireya, my mam & nanny Lyn jumped on a train to the big city. We went to Guys hospital to meet genetics consultant we went in and straight away he started telling us more than we had been told and explained things others wasn’t able to tell us. This appointment was so positive for us and it was nice to hear it all from someone that had seen and knows about other cases of Rubinstein Taybi Syndrome. He did say before we went into the appointment he thought Mireya was going to be in the bottom 30% of cases but after seeing and reviewing everything he thinks she is doing fantastic and actually in the top 30%☺️
He is happy with Mireya progress and said we have got a few steady years now so we will see us on a yearly basis but if we need him for anything at all to contact him and he will see Mireya.
After the trip to London we finally got referrals through for physio, allergy clinic, dermatology all what we have been waiting for since may and the doctor we seen lost the referrals and forgot to re do them all 🙈 after phone all different departments and finally the health visitor putting a complaint in and re doing the referrals.
While waiting for these appointments 2 days before the physio appointment Mireya finally held on to her walker and walked up the trailer. again we cried happy tears to a lot of parents this is just normal but for us this is just a big massive milestone. We just couldn’t believe it as we got told she might not walk till she is 3/5 year old.
When we went to physio they was very impressed with her standing and cruising around the furniture and offered Mireya to try a walking aid a lot of RTS children have the aid to help support them and stop them getting frustrated not been able to do something. So they fetched the Kaye walker in and tried Mireya. They couldn’t believe it straight away she took to it. They normal don’t let you bring it home straight away as they need to see fully that they can use it correctly but they was that impressed with how she took to it we was aloud to bring it home straight away. It was white with black dots on like something off dalmations so I give it a little make over and made it nice and pink for her. She has been fantastic on it.
Our only issue again as been shoes we have tried everywhere to get size 15 with hard soles but as there so small there is only pram shoes with soft sole. So a good friend of my sister sent me some pictures of ways to make some for her. So I went and bought some soles and braiden cut and glued them to mireyas shoes and there perfect so she now has some shoes.
Mireya’s nursery are holding a funday in aid of the Showman’s Children’s Charity this is so good that they are support this charity. We are so thankful and great ful to the nursery they have been absolutely fantastic with Mireya and helping her so much in her development.
Mireyas speech therapy is coming on fantastic she now can sign More, Food, thank you. She has the understanding of no, stop, wait, go, quick, eat & finished when we do these signs she shows facial expressions or sounds that we know she understands.
The next couple months are gonna be full on as we have lot more appointments and therapy’s.
Vienna and Mireya are a little pair of characters now and fighting over toys. Vienna has took a liking to mireyas glasses and she whips them off at every chance when Mireya is passing her. Vienna is such a happy content baby and we are blessed with our two beautiful baby girls.
We would like to thank everyone again for all your continued support it really means so much to us all 😘
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