PostPals, as most of you should know by now, is a small charity which does great work by encouraging everyday folk to do a simple thing - send a card to a sick child (and or their siblings). It seems like a tiny gesture, and yet as a parent of children with health problems I can only try to say how important that gesture is. At the end of the day, when Tom is really tired from school and Kesia is struggling to be the "good" sister, the sight of a card or letter (even occasionally parcel) turns what could be a very long, miserable evening into one full of smiles.
And all they ask of me is that I update all those wonderful people... I missed my August update, and all of a sudden here is the September one!
I'm going to summarise the summer. I think that the reason I didn't update August is that it felt very long, very sad and sharing that was just too hard. I also had to keep a detailed account for Zack's school and that just emptied me. We got through it without major incidents. I was able to avoid any hospital appointments with Tom, and Cherry Trees ( www.cherry-trees.co.uk ) and Challengers ( www.disability-challengers.org ) made life possible.
And so into September!!!
First, September was Childhood Cancer Awareness month. In my world that means a lot. Many of my Facebook friends are personally affected by childhood cancer, as I have been and continue to be despite Tom's good health in that regard. In the US, 46 children are diagnosed with cancer each day. Here in the UK, it's 6. 6 babies every day, whose parents are told, "Your baby has cancer". That's not rare. It's simply not talked about.
Most of these children (amazing, and normal at the same time) will undergo chemotherapy and lose their hair. They take this with enormous fortitude, as they do all the awful side effects of cancer treatment. And so last month, 46 Mommas in the states got together to raise money, and to raise awareness! With many leading television channels in attendance they shaved their heads! What they did is awesome, and I am full of wonder and love for them. www.46mommas.com
I am not that brave, but I want to do something!!! Why am I so vain about my hair - goodness knows! but one of those fabulous cancer mums suggested something that I can do, that feels big to me, and that I hope can help a child somewhere! I have very long hair, and what I am hoping to do is cut it all off to donate. My hope is that my pony tail will contribut to making a wig for a child suffering from hair loss. Be it through cancer treatment or something else. My secret hope is that my hair could be part of a "happy wig" - maybe pink or glittery... something a little special for a special girl. So I'm looking, and I hope to get something sorted out sooner rather than later, especially in terms of fundraising. Again, I'm not sure where the money will go - but it needs to be helping raise awareness of childhood cancer. That's where my heart is.
Phew! Now on to update you all about my Tom!!
We've had a busy month. Tom started school in the juniors which has been a tough transition. School have on the whole been really good, but it's difficult to remember how hard he finds schoolwork when he engages so readily in the classroom. He's been having a lot of nightmares and not been happy about going to school so I explored the possibility of special school. I'm really happy to report that as a result, the local special school is going to be working closely in partnership with the Greville. They are hoping to exchange students on a regular basis, exchange teaching methods and ideas which will directly help Tom with his literacy. What's more, they are offering to give Tom some hydrotherapy which is fantastic as we are battling pain during the day as well as at night now.
Tom's also started riding with the RDA (www.rda.org.uk) which he is loving and which I hope will strengthen him enough to alleviate some of that pain.
Feeding is a nightmare right now and I'm trying very hard not to let it bother me too much. The only thing he wants to eat is chips and with Kesia at home it's very hard to justify making chips daily, only for him. Thank goodness once again for the tube, and for the blenderized diet! This week has been dominated by sardines and spinach, and he is looking nice and healthy! Small oily fish, that's what I say!
We had some really good news last week as we went to Tom's yearly cardiology check up. He was fantastic about the ECHO, and Dr. Derrick is very happy with the state of his heart. As he says, his pulmonary valve is no longer there, so there is leakage, but his heart is doing really well, much the same as last year. That's really good news, as surgery is therefore not on the horizon yet. Long may that last!!
We also saw the haemophilia doctor while we were there - another check up - who was very concerned to learn that a minor surgery was planned for Tom at our local hospital. She told me that although Tom was probably going to be fine, his bleeding disorder is such that the local hospital does not have the resources to deal with a possible bleed. I have to say, I'm quite pleased that this will now be done at GOSH because the local team had not given the bleeding issues any thought - I had had to remind them. It's nothing huge - Tom just needs his man bits to be brought down where they belong!! Again something I've been keeping an eye on for five years, knowing that it is a common issue in Noonan syndrome. At least it's getting dealt with now!
In other news, Kesia has started psychotherapy and seems to be doing well on it.. I'm tired as it takes a lot of time in the week but happy to be doing something proactive for her. She had a crazy week at the end of September when she attended a glitzy ceremony to collect her WellChild Award (for Caring Child) which I think will have left her with some amazing memories. it was truly moving to be able to focus so much time, appreciation and love on her and her alone.
One last piece of big news for those of you still reading this epic!! Together with a few friends, we are launching a new support group for people affected by Noonan Syndrome. It is called Noonan UK, and is a chapter of TNSSG ( www.noonan-syndrome.org ) who provide such amazing support in the states. We have a facebook page of the same name, and will eventually look to becoming a charity once we are raising enough money. We've already had contact from new families and are hoping to get UK families together very soon.
Thank you all for those wonderful cards... Wendy whose homemade card are stunning, Dottie the dalmation who provides giggles galore, Jane and Percy as always, and all those of you who have sent cards, letters and gifts.
Thank you PostPals!
And all they ask of me is that I update all those wonderful people... I missed my August update, and all of a sudden here is the September one!
I'm going to summarise the summer. I think that the reason I didn't update August is that it felt very long, very sad and sharing that was just too hard. I also had to keep a detailed account for Zack's school and that just emptied me. We got through it without major incidents. I was able to avoid any hospital appointments with Tom, and Cherry Trees ( www.cherry-trees.co.uk ) and Challengers ( www.disability-challengers.org ) made life possible.
And so into September!!!
First, September was Childhood Cancer Awareness month. In my world that means a lot. Many of my Facebook friends are personally affected by childhood cancer, as I have been and continue to be despite Tom's good health in that regard. In the US, 46 children are diagnosed with cancer each day. Here in the UK, it's 6. 6 babies every day, whose parents are told, "Your baby has cancer". That's not rare. It's simply not talked about.
Most of these children (amazing, and normal at the same time) will undergo chemotherapy and lose their hair. They take this with enormous fortitude, as they do all the awful side effects of cancer treatment. And so last month, 46 Mommas in the states got together to raise money, and to raise awareness! With many leading television channels in attendance they shaved their heads! What they did is awesome, and I am full of wonder and love for them. www.46mommas.com
I am not that brave, but I want to do something!!! Why am I so vain about my hair - goodness knows! but one of those fabulous cancer mums suggested something that I can do, that feels big to me, and that I hope can help a child somewhere! I have very long hair, and what I am hoping to do is cut it all off to donate. My hope is that my pony tail will contribut to making a wig for a child suffering from hair loss. Be it through cancer treatment or something else. My secret hope is that my hair could be part of a "happy wig" - maybe pink or glittery... something a little special for a special girl. So I'm looking, and I hope to get something sorted out sooner rather than later, especially in terms of fundraising. Again, I'm not sure where the money will go - but it needs to be helping raise awareness of childhood cancer. That's where my heart is.
Phew! Now on to update you all about my Tom!!
We've had a busy month. Tom started school in the juniors which has been a tough transition. School have on the whole been really good, but it's difficult to remember how hard he finds schoolwork when he engages so readily in the classroom. He's been having a lot of nightmares and not been happy about going to school so I explored the possibility of special school. I'm really happy to report that as a result, the local special school is going to be working closely in partnership with the Greville. They are hoping to exchange students on a regular basis, exchange teaching methods and ideas which will directly help Tom with his literacy. What's more, they are offering to give Tom some hydrotherapy which is fantastic as we are battling pain during the day as well as at night now.
Tom's also started riding with the RDA (www.rda.org.uk) which he is loving and which I hope will strengthen him enough to alleviate some of that pain.
Feeding is a nightmare right now and I'm trying very hard not to let it bother me too much. The only thing he wants to eat is chips and with Kesia at home it's very hard to justify making chips daily, only for him. Thank goodness once again for the tube, and for the blenderized diet! This week has been dominated by sardines and spinach, and he is looking nice and healthy! Small oily fish, that's what I say!
We had some really good news last week as we went to Tom's yearly cardiology check up. He was fantastic about the ECHO, and Dr. Derrick is very happy with the state of his heart. As he says, his pulmonary valve is no longer there, so there is leakage, but his heart is doing really well, much the same as last year. That's really good news, as surgery is therefore not on the horizon yet. Long may that last!!
We also saw the haemophilia doctor while we were there - another check up - who was very concerned to learn that a minor surgery was planned for Tom at our local hospital. She told me that although Tom was probably going to be fine, his bleeding disorder is such that the local hospital does not have the resources to deal with a possible bleed. I have to say, I'm quite pleased that this will now be done at GOSH because the local team had not given the bleeding issues any thought - I had had to remind them. It's nothing huge - Tom just needs his man bits to be brought down where they belong!! Again something I've been keeping an eye on for five years, knowing that it is a common issue in Noonan syndrome. At least it's getting dealt with now!
In other news, Kesia has started psychotherapy and seems to be doing well on it.. I'm tired as it takes a lot of time in the week but happy to be doing something proactive for her. She had a crazy week at the end of September when she attended a glitzy ceremony to collect her WellChild Award (for Caring Child) which I think will have left her with some amazing memories. it was truly moving to be able to focus so much time, appreciation and love on her and her alone.
One last piece of big news for those of you still reading this epic!! Together with a few friends, we are launching a new support group for people affected by Noonan Syndrome. It is called Noonan UK, and is a chapter of TNSSG ( www.noonan-syndrome.org ) who provide such amazing support in the states. We have a facebook page of the same name, and will eventually look to becoming a charity once we are raising enough money. We've already had contact from new families and are hoping to get UK families together very soon.
Thank you all for those wonderful cards... Wendy whose homemade card are stunning, Dottie the dalmation who provides giggles galore, Jane and Percy as always, and all those of you who have sent cards, letters and gifts.
Thank you PostPals!
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