Hi
We have been a bit busy lately. Mummy is organising a Clothes Swap and Pamper evening with her friend Louise and to publicise it she has done a couple of interviews. Mummies friend works at the Chester Chronicle, Gil, and she wrote a lovely article about me. You can see it here. The Daily Post then used the article as well. Here is this article.
The day just got busier yesterday with Mummy doing two radio interviews, one for Marcher Sound and one for BBC Radio Wales. We really hope all the publicity encourages people to come to the Clothes Swap on 20 June at Glanrafon School. If anyone wants more information there is a website explaining it all.
On Tuesday I went into hospital for my second eye operation. Everyone was really nice and Mr Chandna the eye surgeon said it went well. My eyes are a bit red now but everyone says that they look much better. I will ask Mummy to put a picture on here when my eyes are not quite so red!
Big hugs to everyone
Isaac x
Saturday, 6 June 2009
Friday, 15 May 2009
Clothes Swap and Pamper Evening
Hi
My Mummy is currently organising a Clothes Swap and Pamper Evening to raise more money for Moebius Research Trust. Here are the details - I hope you can come (i will be in bed though!).
We are hosting a clothes swap and pamper evening in aid of Moebius Research Trust and North West Cancer Research Fund - so come along and swap your unwanted clothes for someone else’s and create a whole new wardrobe!
Saturday June 20th
Doors open 6.30pm (last entry 7.45pm) - 10pm
Ysgol Glanrafon, Mold
£7.50 in advance (£10 on door)
Inspirational guest speaker, Olivia Stefanino, will open the event. Prepare to be amazed as she demonstrates the power of the mind!
Please bring along at least one good quality item of clothing (accessories also welcome) by 7.45 pm at the latest.
Tickets can be purchased by emailing enquiries@claritypa.co.uk or calling Ceri on 07971 983028 or Louise on 07881 581871.
If you can't attend could you help by letting other people know about this event.
Many thanks
Isaac xx
Monday, 13 April 2009
Eye op latest!
Hi
Sorry I have been quiet lately. Mummy had a call a couple of weeks ago to say they could operate the next day on my eyes! That was a big surprise but it was good because Mummy did not have so long to worry about me. I was asleep a lot of the time so I have told Mummy she can write on here.
The operation was really scary but we were pleased that his eye op was finally taking place. All went well with the anasthetic and intubation which was our main concern, as there have been reported complications with people who have Moebius. This part of the op was great and his anaethatist was lovely. She spent a lot of time explaining everything before the op. The op was not as it should have been however. His surgeon is wonderful but he got a little surprise when he looked at Isaac's eyes as the muscle that was over tight was already in the position he had been planning to move it to. This meant he could not do what he had planned and instead injected botox into the muscle to weaken it. This is only a short acting solution and over the next few weeks he will be monitored and the surgeon will the re-operate in 6 weeks (ish). He will use the information gathered over the new position, as his eyes move, so he can move the muscles and hopefully achieve straight eyes. Fingers crossed. So all in all we will be back to the hospital again and hopefully all will go well.
Isaac is still not walking but now he is two he is as feisty as any two year old but with the added frustration that he cannot walk yet. This is causing some problems, especially in nice weather. We want to be outside but activities are limited for those children of his age who cannot walk and then there is the problem with the sun and his inability to squint!!!! If anyone has any experiences of this and can offer a solution I would be very grateful. He refuses to wear sun glasses or hats so this is hard.
We have been putting eye drops in following his op (8 times a day in each eye) and the positives are that he has shown us he can close his eyes really tightly when he chooses.
Have a lovely Easter and we will give you some updates when we have them. Once again thank you for all your support.
Ceri & Isaac xxx
Sorry I have been quiet lately. Mummy had a call a couple of weeks ago to say they could operate the next day on my eyes! That was a big surprise but it was good because Mummy did not have so long to worry about me. I was asleep a lot of the time so I have told Mummy she can write on here.
The operation was really scary but we were pleased that his eye op was finally taking place. All went well with the anasthetic and intubation which was our main concern, as there have been reported complications with people who have Moebius. This part of the op was great and his anaethatist was lovely. She spent a lot of time explaining everything before the op. The op was not as it should have been however. His surgeon is wonderful but he got a little surprise when he looked at Isaac's eyes as the muscle that was over tight was already in the position he had been planning to move it to. This meant he could not do what he had planned and instead injected botox into the muscle to weaken it. This is only a short acting solution and over the next few weeks he will be monitored and the surgeon will the re-operate in 6 weeks (ish). He will use the information gathered over the new position, as his eyes move, so he can move the muscles and hopefully achieve straight eyes. Fingers crossed. So all in all we will be back to the hospital again and hopefully all will go well.
Isaac is still not walking but now he is two he is as feisty as any two year old but with the added frustration that he cannot walk yet. This is causing some problems, especially in nice weather. We want to be outside but activities are limited for those children of his age who cannot walk and then there is the problem with the sun and his inability to squint!!!! If anyone has any experiences of this and can offer a solution I would be very grateful. He refuses to wear sun glasses or hats so this is hard.
We have been putting eye drops in following his op (8 times a day in each eye) and the positives are that he has shown us he can close his eyes really tightly when he chooses.
Have a lovely Easter and we will give you some updates when we have them. Once again thank you for all your support.
Ceri & Isaac xxx
Friday, 27 February 2009
Delay disapointment!
Hi
Today I had my eye operation cancelled. I was supposed to have it on Tuesday but unfortunately my surgeon's Daddy is poorly and so he has cancelled all his appointments for the next month. Mummy and Daddy are really disappointed as they said they were really nervous about my operation but they were excited too that I would soon have lovely straight eyes.
I don't know when it will be now as they are not going to even look at a new date until he is back at the end of March. It would have been nice to have straight eyes for my birthday in April but hopefully it can still be done before I start playgroup.
I am still enjoying my standing and walking and take a few more steps every day. I can crawl up to the top of the stairs in our house now. Mummy keeps the door shut so I can't go up on my own but as soon as someone opens it I crawl through so fast it is hard for them to stop me. Ha ha.
Take care and big hugs
Isaac xxx
Today I had my eye operation cancelled. I was supposed to have it on Tuesday but unfortunately my surgeon's Daddy is poorly and so he has cancelled all his appointments for the next month. Mummy and Daddy are really disappointed as they said they were really nervous about my operation but they were excited too that I would soon have lovely straight eyes.
I don't know when it will be now as they are not going to even look at a new date until he is back at the end of March. It would have been nice to have straight eyes for my birthday in April but hopefully it can still be done before I start playgroup.
I am still enjoying my standing and walking and take a few more steps every day. I can crawl up to the top of the stairs in our house now. Mummy keeps the door shut so I can't go up on my own but as soon as someone opens it I crawl through so fast it is hard for them to stop me. Ha ha.
Take care and big hugs
Isaac xxx
Thursday, 5 February 2009
With tiny steps....
Hi
This week I surprised Mummy and Daddy by taking tiny steps. I decided I wanted to do this in my own time so have kept everyone waiting but now I feel ready to take some steps - only when I hold onto something of course! I especially like holding onto the bath and then walking to the other end and nocking toys into it. It is great fun.
Other tiny steps were made to reach our fundraising target. We still have a long way to go but it all helps and Glanrafon school in Mold kindly adopted the Moebius Research Trust as their charity last term and in such a short time raised £550! It was so kind of everyone. I went with my Mummy and Daddy to school to collect the cheque and met lots of the children who helped raise the money. It was lovely.
A big cuddle to everyone who has been helping to raise money for the research into why people like me can't smile.
It is only a couple of weeks until I have my eye operation to straighten my eyes. Mummy says I will still only see through one eye at a time but they will hopefully look much straighter. We are going to stay in holspital for a night so I can make some friends with the nice nurses and doctors. The doctor says I might need another operation after this one but hopefully it will be ok.
I hope you are enjoying the snow. I tasted some for the first time yesterday - it was lovely and cold. A nice surprise.
Big hugs
Isaac
This week I surprised Mummy and Daddy by taking tiny steps. I decided I wanted to do this in my own time so have kept everyone waiting but now I feel ready to take some steps - only when I hold onto something of course! I especially like holding onto the bath and then walking to the other end and nocking toys into it. It is great fun.
Other tiny steps were made to reach our fundraising target. We still have a long way to go but it all helps and Glanrafon school in Mold kindly adopted the Moebius Research Trust as their charity last term and in such a short time raised £550! It was so kind of everyone. I went with my Mummy and Daddy to school to collect the cheque and met lots of the children who helped raise the money. It was lovely.
A big cuddle to everyone who has been helping to raise money for the research into why people like me can't smile.
It is only a couple of weeks until I have my eye operation to straighten my eyes. Mummy says I will still only see through one eye at a time but they will hopefully look much straighter. We are going to stay in holspital for a night so I can make some friends with the nice nurses and doctors. The doctor says I might need another operation after this one but hopefully it will be ok.
I hope you are enjoying the snow. I tasted some for the first time yesterday - it was lovely and cold. A nice surprise.
Big hugs
Isaac
Monday, 19 January 2009
My new bike
Hi
For Christmas I got a lovely new bike that my Mummy or Daddy can push me in until I am big enough to ride it on my own. I like going riding on my bike with my big brother. He also has a bike but he can ride his all on his own.
On Sunday we went to the park and took my brother's class monkey, Meic, who was staying with us for the weekend!
I hope you are all ok.
Love Isaac
xxx
Sunday, 28 December 2008
Happy Christmas and a Happy New Year!
It has been a year since my Mummy and Daddy were told I had Moebius Syndrome and My Mummy has asked if she can write in my blog so as it was Christmas I thought I would let her.
During the last twelve month's we have learned more than we ever wanted about a rare condition. We have spoken to many consultants and Doctors and have had to become mini experts so much so that the consultants often ask us for our opinion! We would love to meet a Consultant who knows about the condition as a whole but unfortunately it is a complex syndrome that involves lots of people who are experts in their bit. Who knows maybe in 2009 we can help establish a centre of excellence that will allow us to see the whole picture and consultants will have seen more than one or two people previously which would give them a knowledge base to draw upon.
12 month's on and Isaac is still unable to give us a toothy grin. He has his tiny 'smile' that gives him dimples on one side of his face and considering how little his eyes can move has a mischievous look that can bring a tear to your eye. Isaac is now able to show his emotions in other ways. Only this morning he reached out to give me a cuddle and moments like that are priceless. He also has developed a love for pulling hair which is not always wanted at 2am! He could not sleep the other night and so we brought him into bed but instead he just kept crawling on top of me and giggling whilst he pulled my hair.
Christmas passed him by and it took several days to open his presents. I think next year might make more of an impact. He loved his presents but just wanted to eat the wrapping paper!
The first few month's of 2009 are already busy with lots of scheduled appointments and on March 3rd Isaac will have his eye operation to straighten his eyes. A date to look forward to with excitement and dread in equal measures.
The kindness people have shown during the past year has been lovely and just a few of the highlights include a beautiful Carrol service held by the Mold lodge who raised over £200. A local village, Cilcain, have been lovely and supportive over the past year as have Glanrafon School who kindly raised money for the Trust over the last term. Kindness has been shown by so many people and we are very grateful to everyone for their help both in terms of support and fundraising.
A photographer, Sebastian, recently visited the local Jo Jingles group we go to and to be honest I found the experience quite hard as Isaac is not always the most photogenic because of the lack of expression. It is also hard to see the cheeky grins on the other children and know that that moment is forever captured. Sebastian was great and the photos he produced captured Isaac beautifully. One of his photos is above. When Sebastian found out about Isaac's condition he kindly gave the photo's as a Christmas gift so I can use them as thank you cards. If you want to learn more about his photography you can visit his site at www.stellaphotography.co.uk.
Wishing you all a wonderful New Year and big cuddles off Isaac.
Ceri xxx
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