nanny-anne.blogspot.com
SWAN SongsA blog about the highs and lows of caring for a child who was born with an undiagnosed genetic condition- Syndrome Without A Name (SWAN)
http://nanny-anne.blogspot.com/
A blog about the highs and lows of caring for a child who was born with an undiagnosed genetic condition- Syndrome Without A Name (SWAN)
http://nanny-anne.blogspot.com/
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SWAN Songs | nanny-anne.blogspot.com Reviews
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A blog about the highs and lows of caring for a child who was born with an undiagnosed genetic condition- Syndrome Without A Name (SWAN)
nanny-anne.blogspot.com
SWAN Songs : March 2014
https://nanny-anne.blogspot.com/2014_03_01_archive.html
OUR FEEL GOOD FRIDAYS VIDEO. Saturday, 29 March 2014. A MOTHER LIKE YOU. As I can’t talk yet I can’t tell you myself. But until that day comes I’ve got Nanny to help. I want people to know all the things that you do. And how glad that I am for a Mother like you. When I was born you calmly accepted. Things were not going to be quite as expected. The doctors they said there would be things I won’t do. But they did not account for a Mother like you. They could not dismiss you, try as they might,. At snack t...
SWAN Songs : April 2014
https://nanny-anne.blogspot.com/2014_04_01_archive.html
OUR FEEL GOOD FRIDAYS VIDEO. Thursday, 24 April 2014. IF YOU'RE HAPPY AND YOU KNOW IT. Ever since I watched the fabulous SWAN Video. I have had the Happy Song running through my head at various times of the day. I love the concept behind the video. Disability in all of it’s many forms is often portrayed as something sad and yet the thing that often strikes people most upon meeting Jess for the first time is. Of course Jess is happy. Yes it is a mystery. As to what caused Jess’s brain to stop develo...
SWAN Songs : LETTING GO
https://nanny-anne.blogspot.com/2015/04/letting-go.html
OUR FEEL GOOD FRIDAYS VIDEO. Monday, 13 April 2015. Hello again, thank you for joining me, it’s been a while:-. I wrote a post about change not so long ago, well now for some more. Some good and some not so good. All in some way contributing to me not really having much thought for writing at the time, but here I am again so let me start at the beginning, which according to Maria in the Sound of Music “is a very good place to start”! To quote yet another song LET IT GO……. Monday, April 13, 2015. Parents ...
SWAN Songs : November 2013
https://nanny-anne.blogspot.com/2013_11_01_archive.html
OUR FEEL GOOD FRIDAYS VIDEO. Thursday, 28 November 2013. Christmas for Natalie’s 3 year old Sister Jessica is a different matter. Due to her global developmental delay and the fact that she is non verbal, Christmas can become quite a challenge. Not for her to be honest but for us. The challenge usually begins with the gift. Would spend ages talking to their ‘baby’ and pretending to feed and change it etc. Jess has a baby doll. She spends ages chewing it’s hands or feet. 8220; Can I help you? 8220; That&#...
SWAN Songs : April 2015
https://nanny-anne.blogspot.com/2015_04_01_archive.html
OUR FEEL GOOD FRIDAYS VIDEO. Sunday, 19 April 2015. Once upon a time there lived a couple who had a young child. This child was the apple of their eye, clever and bright and they wished they could have another so that the child could have a baby Brother or Sister. Imagine their joy when they found out that their wish had come true. The baby was born a healthy weight and with no complications. The family were so excited Mother and baby were soon allowed home. NOTHING, absolutely NOTHING could have prepare...
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Little Blip: The Oxygen Junkie - Guest Post.
http://mumtochromoboy.blogspot.com/2012/04/oxygen-junkie-guest-post.html
A blog about parenting a little boy with a rare genetic disorder. Tuesday, 17 April 2012. The Oxygen Junkie - Guest Post. Fran aka The Oxygen Junkie has kindly written a blog post about Max and Disability Rocks. Fran may be only 14 but she is wise beyond her years. She has recently got through to the final 3 in the Amnesty International Young Journalist of the year. We are very proud of her and wish her good luck for the final on the 8th May. This is the post Fran wrote for her blog. After having a bit o...
Little Blip: No answers
http://mumtochromoboy.blogspot.com/2012/03/no-answers.html
A blog about parenting a little boy with a rare genetic disorder. Friday, 2 March 2012. I don't know the answer to " why". Is it behavioural? How do we stop it? Friday, March 02, 2012. 3 March 2012 at 12:09. 4 March 2012 at 04:07. Thank you its good to know we are not alone with this. Promise to write more soon xx. 8 March 2012 at 06:58. He may get better .or worse.with puberty. is tough. If you tried the. Etc approaches then maybe you need to consider medication? What communcication does Max have? On 24...
Little Blip: February 2012
http://mumtochromoboy.blogspot.com/2012_02_01_archive.html
A blog about parenting a little boy with a rare genetic disorder. Tuesday, 21 February 2012. Floppy, bendy boy aged 2. Tuesday, February 21, 2012. Subscribe to: Posts (Atom). Just Bring the Chocolate. Thank you for the freedom. My Research Study: Autoethnography of Parenting a Daughter whose Complex Disability was Diagnosed in her Adulthood. Looking for a shooting star. A BIRTHDAY WISH FOR MY DAUGHTER. The Oxygen Junkie - Guest Post. Small step,giant leap. Maxs development progresses at Max Speed, in Max...
Little Blip: Define Normal
http://mumtochromoboy.blogspot.com/2012/03/define-normal.html
A blog about parenting a little boy with a rare genetic disorder. Monday, 12 March 2012. What is "Normal" well to Max its many things including. Eating ice cream and chips at the same time. Standing naked on the bedroom windowsill. Carrying a dog thrower around despite not owning a dog. Talking to random strangers about their dogs, motorbikes, cars and anything else that has captured his imagination at that moment in time. Being given a " golden Handshake" from Mainstream school at age 6. Have to say he ...
Little Blip: Acceptance or hope?
http://mumtochromoboy.blogspot.com/2012/04/acceptance-or-hope.html
A blog about parenting a little boy with a rare genetic disorder. Monday, 2 April 2012. I can remember experiencing a variety of different emotions. They ranged from fear, what did this mean? Would he ever walk? Where did we fit in? Max aged 2 years. Monday, April 02, 2012. 16 April 2012 at 10:02. 18 April 2012 at 23:23. You are right Kristen we have to fight so hard for our kids as they cant fight for themselves. I would love to write.a blog post about Max and Tyler and their similarities:-). Those of y...
Little Blip: One in a Million
http://mumtochromoboy.blogspot.com/2012/03/one-in-million.html
A blog about parenting a little boy with a rare genetic disorder. Friday, 23 March 2012. One in a Million. Last weekend we travelled to Birmingham to meet up with a group of other families with children with Chromosome 16 variations. We were fortunate to have two members of the Swiss research team in attendance. Professor Jacquemont and Anne Maillard had kindly agreed to do a presentation about their research findings into copy number variations (CNV) on chromosome 16. Friday, March 23, 2012. Poor loves&...
Little Blip: Life goes on
http://mumtochromoboy.blogspot.com/2012/03/life-goes-on.html
A blog about parenting a little boy with a rare genetic disorder. Tuesday, 27 March 2012. So life goes on and we both seemed to have recovered our joie de vivre, put our heads firmly back in the sand and got on with caring for Max, planning for Disability Rocks and the many other jobs that occupy our time. Every day is a bonus when things are good. The card Max wrote for me at school was the icing on the cake! Tuesday, March 27, 2012. Subscribe to: Post Comments (Atom). Just Bring the Chocolate. On 24 th...
Little Blip: The First Post
http://mumtochromoboy.blogspot.com/2012/02/first-post.html
A blog about parenting a little boy with a rare genetic disorder. Tuesday, 21 February 2012. Floppy, bendy boy aged 2. Tuesday, February 21, 2012. 18 March 2012 at 17:11. Sorry it took so long to find what it was, I hope you get outside help and support too. 16 April 2012 at 00:32. Will be following your blog with interest. My son has chromosome 22q11 deletion, which is more common but still complex and there remains a lack of awareness xx. Subscribe to: Post Comments (Atom). Just Bring the Chocolate.
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Nanny Andperforms
Friday, December 1, 2006. The Talk pages were getting too big - it's archived here - comedy ringtones. Talk:Reagan Archive 2004 06 27 and here - Mindy Vega. Talk:Reagan Archive 2004 07 19. - Nextel ringtones. Sparky/Sparky 19:04, 19 Jul 2004. Reagan and the Berlin Wall. Being an inhabitant of East Germany, I find the following sentence inapprobriate and offensive:. The sentence gives the expression, that he teared the wall down, while we consider Ronald Reagan's role. In this part of history as secondary.
SWAN Songs
OUR FEEL GOOD FRIDAYS VIDEO. Monday, 1 February 2016. A BIRTHDAY WISH FOR MY DAUGHTER. Parents stress a lot over their children’s Birthdays. When they are younger it is often the party that causes the most stress but even then there is still that most important thing of all to get right. THE PRESENT. To see the look on your child’s face when they open their present is priceless (assuming of course that you have got it right! Hearing her youngest Daughter say “Happy Birthday”. Sadly I am not like any of t...
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