C/O 8 Field Terrace
Phillipstown
New Tredegar
Gwent
NP24 6BX
United Kingdom

NB: this is a forwarding address for the Pal, we do NOT disclose home addresses

Email Pal

Courtenay P's Parents/Guardians

Sharon and Andrew

Courtenay P's Siblings

Tyanna (21/06/2003) She is a very talkative little girl. She likes looking at picture books and lives and breathes High School Musical. She has convinced herself that she's going to marry Ryan when she is older. Apart from HSM, Hannah Montanna and iCarly comes a very close second. She also likes playing with her Pepper Pig toys and watching it on tv. Tyanna has Neurofibromatosis Type 1 and global developmental delays.
Cameron (02/02/2002) He is a quiet little boy and doesn't mix much. He enjoys drawing, reading and playing with Lego. He also enjoys creating his own models from household junk. He likes watching Scooby Doo and Ben 10. Cameron has Aspergers Syndrome.

Courtenay P's Interests

Football and supports Liverpool FC, Scouts, reading, writing letters, making new friends, watching WWE on TV and playing on her DS

Courtenay P's Favourite Colour

Red

Is Courtenay P able to read?

Yes

Is Courtenay P able to use hands?

Yes

Is Courtenay P visually/hearing impaired?

No

Does Courtenay P suffer from any developmental delay?

No

Story written 2008

Courtenay was born on the 3rd October 1999. From the age of around 2 months, I noticed that her head was to one side. I asked the GP at her baby clinic and he told me that there was no need to worry, it was just a lack of head control, and at the time I accepted this. When she reached the age of one year her head was still to the one side and she was sleeping less and less. Her behaviour was also getting worse. She had brown patches but I didn't think anything of it because I had them and so did her 2 other sisters and my Mum. I revisited my GP and insisted on a referral to the hospital, the paediatrician there put her problem down to glue ear and said she was purposely putting her head to the side because she was shy Courtenay is anything but shy!

I left it at this though deep down I knew there was something wrong and I didn't know what. For the next 3 years it was the same. I was wary of going back to my GP because he said i was an over protective mother due to my other children also having problems at the time. Then in December 2003 I was taken into hospital doubled over in severe pain at first and I was thought to have appendicitis. The doctors did an ultrasound scan followed by a CT scan. They found a big tumour attached to my pelvis, spine and travelling down my right leg. It was thought to be malignant and I was transferred to the Royal Marsden hospital in London. There I was diagnosed with Neurofibromatosis.

This set the ball rolling and everything started to slot into place. The whole family were referred to a geneticist and tested for NF1. Courtenay and her 2 sisters were also diagnosed with NF. It was such a relief to find out that I was not going mad and the children’s problems were not all in my head. First Courtenay's oldest sister was late sitting, walking, and had problems feeding. She was very underweight and small for her age. She also had lots of cafe-au-late spots, but they were overlooked. I was told I was worrying about nothing and it was normal for first time mums. Secondly, Courtenay’s behaviour was put down partly to our parenting and her neck was over looked. Armed with new knowledge, I visited her (thankfully new) GP. He took me seriously and suspected scoliosis and organised X-rays which confirmed this. Her spine is S shaped and her hips are lopsided causing her head tilt. Since then everything has gotten better for us and we have more support from doctors etc. Courtenay tries not to let this restrict her when playing football, but she is not able to play for longer than 10 minutes due to the pain. Her doctors allow her to play football but she has to take it easy, no saving goals etc. Courtenay will probably have her brace next year, even sooner if it progresses.

Regarding Courtenay’s younger sister Tyanna, luckily after my diagnosis she had support from the start. She has developmental delay and attends a main stream school with one to one support.

Having 3 other siblings with special needs and also having problems myself, it takes its toll on Courtenay and her behaviour can be challenging. She can be aggressive to her siblings but is always very remorseful because she often does it on impulse without thinking. She often comes home from school upset because she so often has to play alone at break times. Courtenay is a loveable, chatty and very funny little girl and would love to make new friends to exchange letters with. She is always writing me letters and posting them under my bedroom door.

Update 11th July 2010

Courtenay has had a much better month this month than the last. She has still been in a lot of pain some nights but has coped much better. She is still waiting for an appointment to see someone about doing bone density tests to see if her bones are more brittle than usual. She has had 4 broken bones in 2 years which is a lot and they have broken so easily - the last her toe she broke during her sleep and even she doesn't know how she has done it. Apparently some people with NF can have more brittle bones than usual.

Courtenay is due to see her specialist on 3rd August - she was due on 27th July but the date was postponed by the hospital.

We all loved meeting you at the Post Pal party last month; it was so nice to put faces to names. We all had such a lovely time and we can't thank you all enough for making us feel so welcome.

Courtenay has had a lovely break with her Grandparents in Aberystwyth and it did her the world of good, she really had a lovely time. We had to collect her a few days early because she was going away with the school the day later, so she came home on the Thursday. I only had one night with her and then she was away again. Thank goodness though this was only for 2 nights!

Thank you so much everyone who sent the children letters - Sarah H, Fleur R, Jodie, Sarah G, Seth, Kate W, and Susan C. Courtenay also had a letter from St Joseph's Catholic College in Swindon. The teacher, Liz Howell, had heard about Post Pals during a Year 7 assembly. They thought it would be nice to write to a person on Post Pals and said that they chose Courtenay because she didn't live too far away from them. Lots of the students wrote to Courtenay. So thank you to Liz H, Mileigh L, Mitchell S, Kyle, Megan Louise P, Gaby, Gino, Reagan, Lionel P, Angel L, Sebastiao, Olavo, Aneshka S, Jay, Macvil, Rosalia and everyone else at Post Pals.

Update 22nd June 2010

Thank you everyone for Tyanna's cards and gifts. To LAURA - Tyanna loved the princess gifts, she's a little Diva!

Hopefully we will see you all at the Post Pals party on Saturday. We will do our upmost best to get there. It is a long way for us (an 8 hour round trip) and Courtenay has not been well this week, but I'm sure this will cheer her up no end.

Update 8th June 2010

Courtenay had an appointment with her orthopaedic doctor today. She had more x-rays of her spine because he is concerned that she is developing a hump on one side. The x-rays show that the 'S' shaped curve is stable and hasn't got any worse. There is a curve the other way that he wants to keep an eye on, but is happy with at present. There is nothing he can do to help with the pain and he said that we just have to give her paracetemol, which don't really help.

He is unsure weather the reason for her head tilting is muscular or because of the scoliosis. I just wish they could make their minds up because one doctor is saying one thing and another is saying another thing.

She doesn't have to go back to see this doctor for another 6 - 12 months. Luckily though, she smiles and jokes through it all.

Thanks for all the parcels and letters sent to Courtenay and her siblings, they really love reading the letters and cards.

Update 11th April 2010

Sorry we haven't updated for a while - I have been at the Royal Marsden Hospital in Surrey for an operation.

This hasn't been a good month for Courtenay as she has been in a lot of pain and we are waiting for her to see someone about it. I have also had lots of hospital appointments in London which is a 4 hour drive each way from where we live and I am gone all day for them. This has had an affect on Courtenay because she is aware of something going on. I have also been an inpatient at the Marsden and Courtenay has missed me a great deal and because it is so far away from us she has been unable to visit, but we kept in touch by telephone so that helped a little.

Courtenay has also broken another bone (her little toe) and we are asking for bone density tests or something similar to be done. This is the 4th bone in 2 and a half years. We are unsure weather the NF could have something to do with it as she hadn't even bumped her foot, she just woke up with it hurting and x-rays showed the break. She loves the crutches though.

Thank you for the letters and gifts that have been sent to the children, you have no idea how much a letter cheers them up. Thanks so much everyone.

Update 12th February 2010

Sorry I’ve not updated for a while but Courtenay has had a really good month. She is coping with the pain a lot better and doing lots of after school activities. She is coming on really well at school and has none of the learning difficulties that can be associated with NF. She still has lots of visits with her physio but is at last seeing an improvement.

Thank you so much for the birthday cards etc for Courtenay's siblings, Chelsea and Cameron. They loved them. Thanks also the Valentine gifts; they were a lovely idea too.

Thank you very much from us all.

Update 20th December 2009

Courtenay has had an up and down month. She has had another bad episode of tonsillitis and other infections. She has been sick a lot and missed a lot of school.

She has been in a lot of pain with her back but due to other illnesses she has been unable to go to her physio.

She was chosen to be a monkey in the school play and she was very funny doing her monkey dance and had the audience laughing.

She was picked to sing in the school choir and visited churches and nursing homes to sing carols.

She is due to see her specialist on the 23rd December. We will update you on that in the next update.

Also thank you very much for all the cards and parcels that have been sent to Courtenay and her siblings. They loved the elf and reindeer letters, its adding to the Christmas magic and excitement for them.

So a very big thank you to everyone and we wish everyone at Post Pals and all of Courtenay’s friends a very Happy Christmas and a very happy New Year.

Update 4th November 2009

Courtenay hasn't had a good month. She had her arm put back in plaster due to breaking her thumb and she had the plaster off last Thursday. She has also had tonsillitis as well so she’s had a bad month.

A big thank you to all the gifts and cards that Courtenay has received over the last couple of weeks, especially those from overseas.

Since Courtenay has been back in school she’s been doing really well, although she doesn’t like her new teacher.

Tyanna has gone Micheal Jackson mad. When she gets up in the morning and comes home from school, she switches MTV on and sits patiently in front of the TV until his records come on. When they come on she dances and sings. Last Friday i took her, Cameron and Courtenay to see the new Michael Jackson film "This is it". The cinema was packed (of empty seats) there were just six of us in the cinema. We as a family are getting a bit fed up now because Tyanna has told us that she wants to marry him as well!

Chelsea is in her GCSE year and says that she’s going to stay on a year, but we’re not sure what she wants to do for a career. Maybe she will decide what she’s going to do before September.

Thanks again for all your support where Courtenay is concerned.

Update 19th August 2009

We hope that everyone is having a great summer holiday and enjoying themselves.

Courtenay’s holiday started with a bang as she finished school on the Friday and broke her arm on the Saturday, so the best part of the Saturday night we were in the local A+E department having her arm set in plaster.

As she was due to go on holiday with her grandparents, she was worried that she wouldn’t be able to go in the swimming pool, but the doctor told her the plaster would only be on her arm for three weeks. She was vey happy about this. Three weeks later, as promised by the doctor, her plaster came off. She was told that it was only slightly broken but she needed to take care with her arm for two weeks.

I took Courtenay and her grandparents (plus their dog) to the caravan park. Courtenay had a fantastic time doing everything that she wanted to do, such as swimming and dancing. She even did kareoke. On the 15th of August i took her eldest sister Chelsea up to the caravan for the night, as we thought it would be a good idea to go up the night before i brought everyone home because of the travelling distance.

Hope everyone enjoys the rest of their holidays.

Update 20th July 2009

Courtenay has had another fall and broken her right arm. She did it on the first day of the school holidays. Sadly she can't go into any pools etc.

Update 6th July 2009

Courtenay had an accident on the third day of our holiday in Bulgaria. She ran through the patio door as there were no safety stickers on the windows or patio doors. She ended up cutting all her knee and elbow which resulted in her using a wheelchair for the last 10 days of the holiday. Courtenay didn’t enjoy the rest of the holiday at all.

She was rushed to the nearest paramedic station where she had her cuts seen to and glued and bandaged. She would have had them stitched if she hadn’t been so stressed. When she got back to the hotel there was no concern about her injuries. We were presented with a bill for the window (300 levs) which we weren’t happy about and we also had to pay out for the hire of the wheelchair. We are claiming back medical bills from the insurance.

Before this happened Courtenay was a very happy child who was in the pool all day and running around with the friends that she had made. After the accident, she was in a wheelchair for 10 days and she was bored because she couldn’t run around and do what she wanted to do.

On the plane back home we were diverted to Birmingham due to pilot error – he basically overshot the runway. Courtenay was allocated an extra two seats due to her injuries, but ended up having one extra seat. She had to sit with her legs across Sharon which wasn’t comfortable for either of them at all and we finally got in to Cardiff 5 hours later via bus.

Where Courtenay’s back is concerned, she is attending physio to strenghten the musles. She has to go back to Newport to see the specialist at the end of the month, so i will keep you posted.

Last Saturday, Courtenay, Chelsea, Cameron and Tyanna, were involved in the local carnival. Chelsea and Courtenay were lady in waiting and flower girls on the head float. Cameron and Tyanna were dressed up as pirates on the third float and they all looked fabulous in their costumes.

A big thank you to all of the support, letters, etc, that Courtenay and the rest of my children receive from Post Pals.

Update 15th June 2009

We have just arrived back after 2 weeks in Bulgaria with Courtenay and her siblings. We had a horrendous time as Courtenay ran through a glass patio door that she thought was closed because there were no warning stickers on it. She suffered bad cuts to her knee and elbow and she had to be rushed to hospital and then return daily for treatment. She spent the last 11 days of the holiday wheelchair bound and couldn't enjoy the beach or the pool etc. I felt really bad for Courtenay because she was so looking forward to this, but she is also lucky as it could have been a lot worse.

Update 20th May 2009

Courtenay has had a great deal of pain with her back and neck this month and because of this her behaviour is beginning to deteriate. At her hospital visit we were advised that Courtenay should have a series of physio therapy sessions to try and strenghten her back muscles. If this fails then Courtenay will have to have an MRI scan. After that we will be told what treatment she will be having. Due to this constant pain she has been advised to finish football and she didnt like that news at all.

Courtenay has been very excited the last couple of weeks because we’re going as a family to Bulgeria for 2 weeks. She has been trying to organise the areoplane seeting arrangements.

Courtenays' mam is very nervous at the moment because she doesn’t like dentists and she has to go to the University Hospital of Wales to have a
wisdom tooth removed tomorrow.

A very big thank you to all of Courtenay’s friends on Post Pals for all their support, love and best wishes.

Update 6th May 2009

Courtenay has not been well this week and is home from school because she has had a very bad chest infection and been staying in bed mostly. It has knocked the stuffing out of her leaving her with no energy.

Her doctor has also told her that she can no longer play in football matches. This has greatly upset her because she was so limited as to what she was allowed to participate in. On the good side, he has told her that she can take part in light practices but has to refrain from the match at the end of practice.

Update 13th April 2009

Courtenay has had a good month, although her behaviour is deteriorating due to the pain she is in. Courtenay has to go back to the hospital on the 24th April to have a further check up. Hopefully we will find out what is happening with treatment this time.

We are trying to keep Courtenay as active as possible. If the weather is fine she goes to her friends and plays on the trampoline or Sharon takes her for walks etc. Courtenay's sister Tyanna has started Brownies too and enjoys it very much. She is only five and gets tired very easy though.

I took Courtenay, Cameron and Tyanna out on Tuesday. They didn’t know where they were going. I told them we were going to get Sharon's birthday present. They soon changed their attitude when I pulled up outside KFC. The three of them enjoyed it very much and they enjoyed Adventure land even better. Courtenay has had a fairly good school holiday so far and hopefully the rest of the holiday will be just as fine.

Thank you to everyone for their kind support regarding Courtenay and a happy belated Easter to you all.

Update 1st April 2009

Thank you very much to Sarah Gilligan for your lovely letter and activity packs, it was very nice of you to think of us. It will give us lots to do over the Easter holidays.

Update 26th March 2009

Thank you to whoever sent Courtenay the teddy bear. She has been in so much pain this month and having a hard time of it. She's needed lots of cuddles. The teddy bear really cheered her up.

Luckily, complaining about her postponed appointment did the job for once and they have rushed her an appointment through for the 27th. I will keep you posted with the results.

Update 17th March 2009

Courtenay has had a problematic month which has affected her behaviour. She has been suffering from a lot of pain in her back and neck. The specialist in Newport had to cancel Courtenay's appointment because of annual leave. This appointment was pushed through as a matter of urgency because of the pain that Courtenay is having. We were told that a new appointment would be sent out as soon as possible. Both Courtenay’s mother and I were very annoyed over the matter and we made a complaint, so hopefully we will hear something soon. The scan that Courtenay had on her tummy went ok and we will know the results when she sees the doctor.

Courtenay’s Nan has bought a new puppy which they’ve called Taffy. Courtenay has spent quite a lot of time at her Nan’s since the new puppy arrived. She loves having the puppy on her lap and stroking it. The puppy was allowed out for the first time last week. It is getting carried more than it is walking at the moment. I think it will be a different story when the puppy gets bigger. Sharon went out and bought it some squeaky toys last week - they will drive Sharon’s father mad. Sharon’s father was also taken into hospital at the weekend which upset Courtenay very much.

Update 3rd February 2009

Courtenay has had a good month considering she is in a great deal of pain with her back. Although she is in pain, Courtenay is trying to keep as active as she can by playing football. She has an ultrasound on 13th February in Caerphilly hospital. We will let you know the results as soon as we receive any feedback from the hospital.

Courtenay, Cameron, Tyanna, Sharon and I, went to see Aladdin with the school to Cardiff’s New Theatre. We had brilliant seats and we all enjoyed it. Peter Barlow from Coronation Street played the part of Jafar the evil Wizard and he did a good job as well. The pantomime was in 3D which was very effective; it made us jump in some parts of the play, but we all enjoyed it just the same. We got home to New Tredegar around 6.00pm and very tired.

Courtenay is doing really well in school, especially with her reading. She is in front of the rest of her class in this subject. She gets on very well with her teacher and he always has good things to say about her. She is also doing really well with her violin class in school and she was very excited when she found out that Sharon and I had bought her a violin of her own. A couple of weeks ago, along with a few of her class mates, she entered a dance competition which was held at her elder sisters Comprehensive school. She did very well and they are supposed to be doing another one shortly.

On 31^st January we went to McDonalds and then we went to a local Kids Adventure Land for Cameron’s 7th Birthday. Courtenay, Cameron and Tyanna were very tired when they got home, but they enjoyed themselves very much.

A big thank you to all of Courtenay’s friends at Post Pals for all their support love and letters.

Update 1st January 2009

Courtenay has had a much better few months. The pain has not been so bad and she has handled her emotions much better.

At the beginning of December she had an appointment with her paediatrician. The doctor thinks that it is important for her to have an ultra sound scan on her kidneys. She also needs another type of scan to check for tumours in her tummy. The doctor is also trying to rush her spinal doctor, due to the decline in her condition. She has also recommended that we and Courtenay take another course with Courtenay's psychologist.

Courtenay has had a very busy and exciting month. She was fantastic in her school play. She had the part of cuddly dog. Courtenay also had another concert with her Brownie troop. She was dressed as Elvis and we all fell about laughing at her in her outfit. She even borrowed her sister Chelsea's guitar to look the part.

Christmas was a very busy day in our house hold. Courtenay woke the entire family at 4am and would not go back to sleep. We eventually gave in to her nagging at 5:45am. Courtenay was thrilled because she had a laptop and Wii from Santa; we hid the laptop until later on in the day.

For New Years Eve we allowed her to see in the New Year but this backfired as she got wound up and didn't go to sleep until 3.00 am.

Courtenay's parents would like to thank all of the Post Pals that sent Christmas cards and gifts to both Courtenay and the rest of her siblings. The children loved the letters from Santa's reindeers as it helped to keep the magic alive and build up the excitement until Christmas day.

HAPPY NEW YEAR to you all!

Update 22nd December 2008

Thank you everyone so much for the lovely cards, letters and gifts that were sent to Courtenay P and her siblings. They especially loved the letters from Santa's reindeers. It is keeping them so excited. I'd like to wish everyone a very Happy Christmas and lots of prayers for everyone.

Update 8th November 2008

This month has been both up and down for Courtenay. She has been in a lot of pain this month due to her scoliosis. The pain has been very intense which has caused Courtenay to lose sleep and this has been very difficult for her.

In turn, understandably, this caused her behaviour to deteriorate which has caused her to be very aggressive and bad tempered towards her siblings.

To give Courtenay and her siblings a break she went to stay with her Auntie for a couple of days which she really enjoyed.

This month also has ups. On October 3rd Courtenay celebrated her 9th birthday. She enjoyed reading the letters and cards that she received from Post Pals. She even took them to school to show her friends and teacher.

She had fun at her school Halloween disco. She dressed as a little devil and looked very cute in her outfit.

Thank you once again for your kindness towards Courtenay.

Update 30th September 2008

Courtenay’s had a very good month so far. She came back from her grandmother's house in Northern Spain to rain drenched Cardiff. Courtenay started back to school and has got a new teacher. She doesn't like him very much because he tells her off every now and then for getting her numbers the wrong way round (her number 5's). I had a talk to her teacher this morning about the matter and apparently Courtenay isn't the only member of her class that is having problems. Apart from that she is doing great. Courtenay is in the top band for spelling and reading and is getting on great with her school mates.

Courtenay is now in Brownies and two weeks ago, along with around fifteen other girls, she enrolled. This was a special enrolment because they had to enrol in sign language. This was a major achievement for Courtenay because of the complexity of sign language alphabet. She accomplished this with flying colours.

Two weeks ago Courtenay got to stay at her cousins on a sleep over. She enjoyed this very much because she got to stay up extremely late - until 3.00am. When she got up on the Saturday morning she had a chocolate breakfast, so she was most probably mental for the majority of the Saturday morning!

In football her uncle Adrian (her football coach) informed me that Courtenay would make a fantastic winger because she is fast with the ball. She is doing really well in football and this year so far she has won two trophies. The way she is going we will have to have a shelf just for her trophies!

Sharon had to go up to Guys hospital in London on Thursday for her results of her biopsy. Everything was fine; in fact the doctor was very impressed with Sharon’s weight loss. Her weight was causing Sharon a great deal of discomfort, especially where the tumour is situated (in Sharon’s back). Her doctor is that impressed and happy with Sharon that she doesn't want to see her for another nine months. Good news all round. The only problem that occurred was the transport side of things. Guys hospital would not supply Sharon any transport this time round and told her that she had to provide her own transport. This meant that Sharon had to get up at 4am to be in Cardiff to catch public transport to London. Sharon didn't get back home until 10.30pm Thursday night which meant she was extremely tired.

Update 10th August 2008

We have just got back from Alcudia. We had a fun packed two weeks and went to lots of different places, such as the beach and hydro park. Sharon went paragliding while we were at the beach. This was my wedding anniversary present because it was something that she wanted to do and she enjoyed it very much. At the end of the first week Sharon and I took Courtenay and Cameron to Hydro Park where there were at least 10 different kinds of slides, a wave pool, and about 6 different pools.

Courtenay had a tough time during the second week because she had blisters on her shoulders. She had to stay out of the pool and sea for a few days until they dried up. We made lots of new friends and the weather was very hot. In the evenings we saw tribute bands to the Jackson Five, Spice Girls and High School Musical. The Jackson Five had Courtenay up on the stage with them and called her the sixth member of the Jackson’s.

On 24^th August, Sharon and Courtenay are going back to Spain to spend two weeks with my mother and step father at their home. Courtenay is looking forward to this as she will be able to have one to one attention with Sharon and see my mother.

Thanks for all your support and friendliness towards Courtenay. She would like to thank everyone for their cards, letters and presents. She loves receiving it and reading her mail. She keeps it all in her keep sake box. She was also thrilled when Kim from the Nintendo magazine wrote to her (Kim also has Neurofibromatosis) and told her that if she drew a picture of her favourite Nintendo character she would print it in the magazine. Courtenay drew a picture of SpongeBob SquarePants and Kim kept her promise and printed the picture. We were all very proud of her. This was a brilliant achievement for Courtenay because she has never had anything printed before.

Update 12th July 2008

On 13^th June Courtenay went on a school trip to Drayton Manor. She was so brave as she went on all the thrill rides and wasn’t the least bit scared. The only rides she didn’t go on were the ones she was too small for. She had a brilliant time and bought lots of joke gifts to play on people during the journey home, including fake snot and dog poo YUK!!

On 20^th June I (Courtenay’s mum) had to go into hospital for surgery on my foot (a removal of a NF tumour). Luckily it was day surgery so I was home the same day. Courtenay was great trying to look after me; she was fetching things for me over the weekend. I was in a lot of pain and I had to go back to the hospital with a blood clot in my leg. Over the next week I was back and forth to the hospital for scans.

It was Tyanna’s birthday on 21^st June and so Courtenay’s dad took them to McDonalds in Newport. From there he took Courtenay and her two sisters and cousin to a local adventure play centre. They were gone the majority of the day and Courtenay had a great time and let off a lot of steam.

On 26^th June I had to go to the Royal Marsden hospital in London (which is a four hour car journey from New Tredegar) for a biopsy on the tumour in my pelvis. It was difficult for Courtenay as I had to leave her and she is very clingy to me. She had the driver in stitches when he picked me up.

Whilst I was in hospital Courtenay had another football presentation where she was awarded another trophy. It was presented to her by Darcy Blake who plays football for Cardiff City Football Club. He lives in the same town as us. Courtenay was very proud of herself and so were the rest of her family. Courtenay doesn’t let the NF and Scoliosis get her down.

We are hoping the next month will be a better one as currently I have to inject myself with blood thinners on a daily basis. We are awaiting the results of my biopsy from Royal Marsden too. Courtenay has really tried to look after me this month and she has taken it in her stride when she’s had to be left with relatives while I’ve been in hospital. She is excited about the school summer holidays and I’m sure she’ll be keeping everyone entertained and she hasn’t lost her smile.

Thank you to everyone for Courtenay’s post, you have been so kind and she is thrilled to receive it.

Update 4th June 2008

Courtenay has been thrilled with all the kind letters and cards that people have sent her. She has especially loved the handmade ones with her name on. It has been keeping her busy trying to reply to all the letters. She enjoys reading them to me and it’s also helping with her reading. So thank you for accepting Courtenay on the Post Pals site, it has been so lovely to see her face light up every time she has post.

On 7^th May Courtenay had an appointment with her psychologist. There isn’t much she can do to help us at the moment because we insisted from the start that we didn’t want Courtenay to have medication unless we had a 100% diagnosis for the ADHD or things worsened.  Now we don’t have to see her for 6 – 12 months because we decided to go along with the behavioural therapy option at home. We strongly believe this is better for Courtenay as she needs consistency.

On 17^th May Courtenay’s brother, Cameron, had his official diagnosis for Asperger’s Syndrome. This didn’t come as a shock as his autism specialist already said she was 99% certain he had it and it was just a case of one more person going to see him in a school setting to confirm for sure. In a way it is a relief to get it in writing because we feel we have closure and know why Cameron behaves as he does. He is a lovely little boy just a little different. Rough play as other boys his ages do frighten him as he prefers his own company. It also helps because he can get the extra help at school.

On 19^th May Courtenay played in a football tournament although she could only manage 2 minutes of play due to pain. Despite this, her team ‘The Wasps’ won the whole tournament and each child came home with their own trophy. Courtenay came into the house grinning from ear to ear, she was over the moon and we were so proud of her.

On 27^th May Courtenay had an appointment with her paediatrician. She informed us that she was still unsure whether Courtenay’s behaviour is due to ADHD. We are frustrated at this as at the end of the day we’d like closure and a diagnosis for Courtenay’s sake. It’s not fair on her being shipped back and forth. Despite this she agrees that Courtenay does have very bad behavioural problems that she says are probably due to the Neurofibromatosis. She wants us to go to child behavioural classes which I refused. I’ve done about 5 so far; they don’t help and are not suitable for Courtenay because her behaviour is not always her fault. We find the behavioural therapy we did with her psychologist is far, far better for her. Courtenay thrives on one to one attention, we try our best with this but it is not always easy because having all 4 children with special needs and having a lot of problems due to NF myself, it is hard to split our time. Courtenay recognises when her behaviour is out of control and when calmed down she always apologises and feels really bad about it.

Courtenay started Brownies on 28^th May. They were starting a group near us and she wanted to join although was a little concerned that it may be too girly for her as she is a tom boy! She is already a member of the scouts, football, youth club and after school club, so she is a busy little girl! She loved it though and it all her fears were quashed. Courtenay was the most chatty and energetic but her leaders were brilliant with her. They were trying to organise a summer trip out and asked Courtenay where she wanted them to take her and she said Spain! I’ve taught her well! She enjoyed the whole session and can’t wait to go back next week.