C/O 'Nearbeck'
Rake Lane
Ulverstone
Cumbria
LA12 0HB
United Kingdom

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

Email Pal

Milly P's Parents/Guardians

Vicky and Simon

Milly P's Siblings

Pal Alice

Milly P's Interests

Horses and riding, reading, veggie gardening, fashion and wants to be a fashion journalist, editor or designer.

Milly P's Favourite Colour

Pink

Is Milly P able to read?

Yes

Is Milly P able to use hands?

Yes

Is Milly P visually/hearing impaired?

No

Does Milly P suffer from any developmental delay?

No

Favourite type of post?

Email and long handwritten letters especially with stickers on them!

Story written 2007

Milly was diagnosed with a rare craniofacial condition (Crouzon's Syndrome) at 11 weeks old, after a plea from her parents to find out what was wrong. Milly had been described as "normal" despite numerous problems.

BIG SHOCK for all of Milly's family but Milly receives excellent care at Great Ormond Street Hospital, where she has also had several surgeries. Her treatment is ongoing, but highly unpredictable. Despite frequent hospital stays and having to sleep with a CPAP mask (to keep the airway open) Milly remains a ray of sunshine to all who meet her. 

Milly has a sister, Alice who sadly suffers from type 1 diabetes. Milly enjoys family walks with our labrador and also loves to ride when able. 

Unfortunately, Milly has missed lots of school in the past years and some times gets 'down' about her illness (but still with a smile). We are anticipating more major surgery in 2007 and thought that some letters would give her something to focus on. Milly's ambition is to be a fashion journalist and report from a top fashion show.

Update 17th March 2010

Milly continues to do well both medically and socially, despite being passed from pillar to post on a weekly, if not daily, basis. She was unsettled during February, but seems to have come through that and is enjoying me being at home at the moment. After delaying for several months, I had a phone call pressing for a surgery date and we have agreed, in principle, that she'll go back into GOSH on 17th May for what should be only a few days. With all that is going on with Alice, I have a suspicion that may have to change again but we'll see.

She has been invited to attend a siblings day, during the Easter holidays, at Alice's oncology unit which I think will be useful to her. It is a fun day based on exploring feelings about having a brother or sister with cancer and what that means to them. I think it will be good for her to meet other siblings and hopefully, discuss any fears she has.

Milly is totally devoted to her hamster at the moment. He has become her 'baby' and she spends all her spare time fussing with him. He is so cute and has never bitten (or tried to) and he even comes to his name... perhaps he thinks he's a dog?!

She was thrilled to receive a 'fashion doodle book' from Kate D, a 'Milly' key ring from B Carson and the bunny from Sarah (sorry about the mix up there)! She has also had an 'Angel of Hope' requested by Emma Stone, which is hanging off her bookcase. Sarah, Claire, Tracy and Jane have all sent post also. I'm fairly convinced that there is more... but lack of a list (naughty daddy) prevents me from thanking you. If you have sent something, then thank you. It will have got here; it's just that as with many things in life, my husband doesn't acknowledge the jobs he can't see. It's one of the things that infuriate me when I'm away. Poor excuse, but THANK YOU anyway. It will have made Milly's life that bit easier as she spends time with various friends and family which, however well meaning, isn't the same as being home with me.

Update 17th February 2010

With all that is going on with Alice, Milly has had an unsettled month. Her own surgery is indefinitely on hold although we don't see that as a major problem. I'm not particularly keen to put another child in for surgery; it gets harder and harder leaving them. Milly is doing well health wise, and although overdue for all the regular things - eyes, speech and dental, I'm not too concerned and am hoping that they will all just wait in the background. Her breathing at night hasn't got any worse and with spring coming it should only improve leaving the CPAP machine tucked in the bedside cupboard - yippee.

Milly was tested for bone marrow donation for her sister and was unexpectedly very upset that she wasn't a match. She understands that Alice needs more treatment, but only that. Her bigger concern is that I will have to go away again and this is highly likely. She has now spent over 2 years been passed around and I'm torn about leaving her again. We'd all love to take some time out, put life on hold, and whiz off on holiday somewhere, but it's just not possible. Even if we could get insurance (Alice is currently declined), Simon has no time to take from his job. It would seem that there is no place for a senior staff member who needs time off every other week and he is feeling the pressure, torn between spending precious time at home and bringing in the money that keeps us going. His holiday last year was used entirely at the hospital.

Thanks to all who continue to support Milly. The fabulous 'Milly' things from B Carson, Tez, Heather, Viks, Post Pals, Heated bunny lady (Helen?), Laura the Elf, Kate D, Erin, Helen, the Wolfes from Cowes, Sophie B, Claire, Clare, Munchang School, Sally, Milly P (how worried should I be that there are two Milly Ps), Marjolijn, Wendy, Clare, Karen, Michelle and finally but not least Vickie for the Chinese New Year gift of a TIGER adoption - I never knew that Milly was a Tiger, but it figures! Just today, Milly received a gorgeous 'Milly' cushion in the post - no name (naughty you) but it was posted from TS18, so whoever you are, thank you.

Update 10th January 2010

Milly's month has been a mixed bag. She missed the last week of term for hospital appointments herself, then was left with various friends while we travelled with Alice for her scan results, spent 2 nights in 'overnight accommodation' while Alice had surgery and a few nights with grandparents. Needless to say, she is totally mixed up and highly emotional.

Hearing that her sister's cancer is still there has unsettled her and she can be difficult to handle at times. Living where we do means that once you leave hospital, you get a obligatory phone call to see 'how you're coping' and that's that. They all seem perfectly nice, but act as if they are reading from a training manual or something. There is nothing in terms of support for Alice or myself and nothing for siblings either, unless we want to travel 2 hours to AH for a 30 minute slot. Rather defeats the object I think. Thankfully, we do have a wonderful Rainbow Trust worker who is worth her weight in gold.

With all that is going on with Alice, we haven't got any lists - written, mental or otherwise, but I do need to say a huge thank you to the lady who sent the enormous box of crafting supplies for the girls. They were made up - highlight of their week, no month, and they have both been making cards since. We do have your name and address somewhere, so you will get a thank you at some point! Before Christmas, Milly received two pony books from a gentleman who I believe owns a book store - what a lovely thought that was, she is reading 'Ride by Moonlight' now. She received a planner diary from the Wolfes in Cowes - thank you. Also, to Milly's Elf (and I can't remember your name which is so annoying), but thank you so much. I have taken photos and it is possible that somewhere all of the names and addresses will tumble out for me to prompt letters in return. I can only apologise for the numerous forgotten acknowledgements.

Update 13th December 2009

Milly remains well and is actually excited about getting back down to GOSH to do her socialising thing! She seems to have forgotten the impending surgery and is just, well, bouncing about everything GOSH. She's such a good advert for the hospital. I'm unsure that she will feel the same way when she wakes with her palate stitched together!

Anyway, this next week is purely for various tests and standard things and the surgery is not until January. I think that because she has grown up with it, it really doesn't feel abnormal.

I promised that I wouldn't do it last month and yet I have... again. The list was started with good intentions, lost and never re-started, so it's down to my brain, which isn't exactly efficient at the moment. Still ... I know that Milly has had lots of good wishes from various Effingham villagers and loves all the different postcards, Post Pals themselves - love the bathbomb and haven't opened the little Christmas package, Jude, Lydia, Tez, Kate Dee, Jane and Percy the Poodle (gorgeous pup) and a chap whose name I just can't recall (but you'll know it's YOU we're thinking of)! Milly has also had some Christmas cards starting to arrive and again, I haven't got a list for those, but THANK YOU. They prompted me to be a good mum and I have sewn a felt snowman to each end of a ribbon and made a card holder for her room. Alice and Milly both received a fabulous surprise from the Thomas Ball Children's Charity which I can't mention as, once again, they're not getting them until Christmas Day. However, I know that they will be absolutely thrilled when they see the boxes and their contents!

To all of those I've missed - SORRY. Big, huge SORRY! I must get a 'thank you' system sorted. New Year's Resolution perhaps?

Update 13th September 2009

I haven't actually seen much of Milly, other than to return home briefly to accompany her to school on the first day of the new school year.

The new eye ointment she has been given is much thicker than her old stuff, but she has managed to get herself into the routine of applying it three times a day, which is a huge step forward (assuming she's doing it properly)! She is growing into a very independent young lady and I'm very proud of the way she is dealing with me being away so much. 

Milly is very excited about going on the 'Dreamflight' trip to Florida this year. We were supposed to go a year ago but with Alice's worsening situation, we had to cancel (and lost our money). She doesn't have any concerns about going 'alone' (there are helpers, but no one she knows). I'm amazed that she is so mature, but perhaps all the years of surgeries have given her that attitude.

She also sent me an email to tell me that she'd applied for Head Girl of the primary department at school. With serious academic competition in the year, it is unlikely that she'll get noticed, but I'm so proud of her for having a go. Once over, she'd have shrunk away from such things and it's lovely that she has the confidence to try. She's also signed up for netball, running club and choir (she loves singing).

We will be due in GOSH for checks before Christmas and they are going to do any necessary scans and x-rays at that point, ready for her surgery in early January. She is again, undisturbed by this and just hoping for a December date so that we can do Christmas shopping at the same time. Confessions of a Shopaholic… watch out, there's a Milly about!

As I'm not at home and Milly is staying with a variety of people, the thank you list may be a little lacking and I apologise if you're missing, but here goes… Emma Stone (who spoils Milly), Marjolyn, Percy the Poodle, Kate Dee, Tracy, Anna, Tez, Michelle, Adriana (UT), Chy (UT), Rachel (UT), Karen, Annie, June Junko, Helen B and last, but not least, her partner in fashion design, Lydia!

Update 23rd August 2009

Milly had a lovely birthday with all of us taking her out shopping for a couple of hours. She got a much longed for digital camera (a very nice one) and also some Sylvannian things and a new Wii game, so she was very lucky. 

Milly has also been invited on 'Dreamflight' to Florida in October and while delighted, is sad that Alice isn't able to join her.

Update July 2009

Milly has had an uneventful couple of months. She remained at home with friends and grandparents while I was away with Alice in June and has been living down in Liverpool with me for the last few weeks since school broke up. She will be going back home on Sunday with Simon and is booked in for a summer art course next week (at school) and then will be off to 'Over the Wall' camp from Sunday 2nd. Then, she is doing another weeks activity at the Lakeside YMCA, so she's thankfully occupied for a little while. The poor thing has spent hours and hours watching Alice's drips... eating pre-packed sarnies and amusing herself. As a treat, I took her to have her ears pierced last Saturday and also to have her hair styled in Liverpool city centre. We also managed a little mother-daughter lunch which felt like a luxury for us both.

Simon looked after Alice while I drove down to London with Milly. She had been having headaches and her eye had appeared quite swollen at times, so we were keen to get her checked out. After a little upset at Alder Hey, we went to GOSH and generally, all is okay. She does need a little surgery doing to remove some teeth and some plates in her jaw, but apart from that we were relieved that nothing is going wrong. They are quite happy to wait until later in the year when we're not as committed to being in Liverpool. Milly, being Milly, was very matter of fact about it and requested that the surgery 'please be in December so that I can do my Christmas shopping afterwards'! 

Thank you to those who continue to write to Milly - she's had some lovely letters and cards this last month or so, along with some fabulous little packages. As with Alice, I have been hopeless and haven't got a 'thank you' list (we were organised ONCE), but must say 'thank you' to Lydia who has now sent Milly two packages and I know that we haven't managed to thank you yet. She loves the latest fashion design set.

Update 11th May 2009

Milly's sister Alice (their Mum will of course be with Alice) is being admitted to Alder Hey hospital and is expected to be in for quite a while. Both girls will be needing lots of TLC.

For the short term, Milly's care is being transferred up to Alder Hey as we do need to get her seen and it is just not working with trying to keep up to speed at two hospitals. We don't plan for this to be a permanent move as we are very happy with our team at GOSH and Milly is very comfortable there. We just need to get a few things looked at and this is the best way to do it for Milly.

Update 28th April 2009

Milly has had a trying few months, first with me being away with Alice, and latterly with quite bad headaches and a problem with her eyes as they have become quite bloodshot and swollen. It could simply be a result of returning to school and having lots of board / written work to do, something that we seldom did in home educating! Once we get Alice sorted, we need to get down to GOSH, as we also have to look at her teeth which are just horrendous!

We enjoyed a family break at Malcolm Sargent House in Scotland, where we were well looked after by their wonderful team. I think that Milly is struggling with the sudden drop in attention due to a combination of returning to school and also having to deal with her sister's illness, which has to take priority at the moment. She enjoyed having her own little 'fan club' while we were there - they make everyone feel so special.

Milly, like Alice, received the most beautiful hand stitched quilt from Love Quilts UK. I have taken pictures and at some point will load them up and post one on this site. She was made up to be included as Alice tends to get the attention in our house. If you are a cross stitching fan (I am, but am hopelessly slow) then have a look on their website and get stitching - http://www.lovequiltsuk.com/.  Despite the fact that Milly has had a good spell now, we know how quickly the situation can turn and we also know that Milly will require more major surgery in the future. We are just extremely thankful that for the moment, we only have to contend with one child in and out of hospital.

As usual, completely useless mother (me) hasn't managed to check any post 'in' and therefore doesn't have an itemised thank you list  I seem to be making a habit of this, but please, know that every single letter, card, package is so appreciated and so eagerly opened. Thank you.

Update 31st January 2009

I can't really comment too much on Milly this month, as I haven't been with her! I am still in Liverpool with Alice at the moment, so Milly has been cared for primarily by her grandparents. I am so pleased that her return to the world of school seems to have gone well. She has settled in well, is popular with her friends, and has done exceptionally well in the internal exams. I'm very proud of her for having such a mature attitude and accepting why I'm not there at the moment. She is such an adaptable child.

We are not down in GOSH until March time, so have a nice break until then and I'm hoping that we can all relax in February and do very little. There’s something so lovely about lounging around in PJs until midday in the half term.

Milly was particularly upset to lose her hamster, Lola, on the day I came away with Alice. Lola was a Christmas present and was such a lovely nature. She had a rectal prolapse (lovely) and despite spending a small fortune at the vets, which we didn't have, there was nothing that could be done to save her. It was quite sad to leave Milly with an empty rotastak and no little Lola!

Milly has been telling me over the phone about various cards and letters received, plus I think that she has had a couple of packages. I am living in hope that someone will have noted these down, and as with Alice, I will update again once we are home next weekend. Thanks to all of you who continue to think of Milly. It's so nice that she isn't forgotten as both of our girls have had to cope with so much in the last couple of years.

Have a good February everyone!

Update 5th January 2009

Milly had her 'MOT' at Great Ormond Street mid-month. We are not looking at any non-urgent things until we have got Alice back on her feet and, thankfully, there is nothing needing immediate attention. We will be back down in a few months time. In the meantime, we have been referred to a regional orthodontic team to help with her rather odd jaw/mouth/tooth arrangement and we have also been given access to a local speech therapist as Milly's speech isn't always clear. Just need to find the time to go!

Milly attended the GOSH Christmas party while we were down in London and was delighted to meet George Sampson (winner of Britain's got talent). She was also interviewed by the BBC about her Christmas card which has become a best seller and made an enormous £50,000 for the hospital - amazing! You can find the interview online at http://news.bbc.co.uk/1/hi/health/7777738.stm - we're very proud of her being such a good little fundraiser. Totally overshadowed my Peruvian efforts! 

Christmas was a particularly exciting time for both the girls, although Milly tore the packaging clear in a matter of minutes, whereas it took Alice 3 days to open everything! So many people had put a great deal of time and effort into sending things, particularly Elves Kate D and Lorna. Thank you so much for your wonderful boxes - they were packed to the brim with little (and not so little) packages and Milly is currently designing her latest fashion range! THANK YOU WONDERFUL ELVES!

Marjolijn sent a fabulous package full of crafty treats for the girls - I now realize for their birthdays, but I had put it under the tree and so it joined the Christmas list! The name stickers are absolutely fantastic and are appearing everywhere - books, letters, fridge, etc! 

'Stitches of Love' sent an absolutely beautiful hand stitched cushion for Milly with individual designs from around the world. It has centre place on her bed and looks super. Thank you so much - Milly has made a card to thank you but we seem to have mislaid your address and details. Please email them so that we can thank you personally.

Thoughtful Pal post, including some fab cards, exciting gifts and funny emails, came from Despina, Erin & Kyle, Karen, Julie Barrett, Rachel, Charlotte, Marjolijn, June Junko, Viks, Post Pals, Sarah, Daisy the Dog, Karen Reece May, Stacey, Becky and Julie. As with Alice's update, if anyone is missing from this list, it is more than likely that the package was pinched at the door and taken into hiding without me knowing (although I have told them NOT to)!

The month ahead looks to be difficult for Milly, as Alice starts daily treatment in Liverpool and we'll be away from her. We also decided to put Milly back into school as I'm just not able to give her the time she deserves at the moment. So, she goes back into school this Thursday and I'm praying that it goes smoothly for her, particularly given the situation at home. I am confident that she is academically able and also know that the teacher she is going to be with is kind and caring (Alice previously had her). Fingers crossed! 

There is no package or card more special than the other - each unique delivery brings its own joy and if they were all the same, the magic would be lost. So, big or small post - thank you to each and every one of you and 'HAPPY NEW YEAR'.

Update 26th November 2008

Milly has had a couple of visits down to GOSH in the last month, one social and one medical! Both times have coincided with Alice being due in Alder Hey, so I've been driving between the two hospitals rather than home and the hospital. Our car is quickly gathering the miles! Milly continues to be well and we just have some further appointments the week after next (week of 8th Dec) and then we'll have had a full MOT and can either rest or plan from there! Thankfully, problems in Crouzon's generally develop fairly slowly and therefore give plenty of warning, allowing time for surgical planning. Given our situation with Alice at the moment, this is a positive.

Milly continues to receive post, although it is obvious that Alice is in the pole position! Just for a change, I've kind of misplaced, okay - lost, the list. Kate D did send a very special present for both of the girls and they were over the moon. Alice is using it constantly at the moment - in bed, in hospital, in the car... thank you, and I'm sure that Milly will manage to acquire it for her forthcoming visit to GOSH! 

As for me, I've just completed a 10 day challenge in Peru, for Great Ormond Street Hospital. With various events and my sponsorship, I think that I've raised around £11,000 for them, which I'm very pleased with. Having agreed to this over a year ago, it was extremely difficult to know whether to go or not, but the 10 days fitted with Alice's 'off treatment' days, Milly is stable and I had so much money resting on it. I found it quite difficult to detach myself from what was going on at home and spent a lot of time holding back the tears. It was the hardest thing I've ever done, but I'm so glad that I did... it kind of proves that you can make yourself do anything if you really want to.

This will probably be our last update before Xmas so - 'HAVE YOURSELF A MERRY LITTLE CHRISTMAS' x x x

Update September 2008

Milly is plodding along nicely, although I haven't actually seen her all week. She has had to spend a huge amount of time with grandparents and friends as the reality of Alice's situation unfolds. She has no major problems at the moment and is not due down at GOSH until another 8 weeks which is good. We could do with a quiet period for Milly so as to get Alice sorted.

The attention Alice is now receiving, along with my time (which was once only for Milly) has had an effect on her. Her behaviour is a little bad at times and she spends a lot of time asking me if I still love her. I guess it's just hard for her after been number 1 for 10 years to suddenly be demoted.

Thanks to those who continue to write to Milly, she does love her letters.

Update 18th August 2008

Milly has had a good July/August. Her surgery went really well and she is back to normal. As we can't go to our local hospital (due to the Alice saga), I ended up taking the stitches out myself and she was VERY good about it. Especially as some of them had crusted into her scalp - ARGH!

Milly went off to 'Over the Wall' camp at the end of July and had the most fabulous time. She met some new friends, some friends from last year and a couple of volunteers. They are just incredibly amazing and I always cry when we drive away. The girls are full of chatter and obviously have the time of their lives. You can go to 'Over the Wall' and link to photos of the kids at http://www.otw.org.uk - select the 'photo' link. 

We were planning to spend a week camping after collecting the girls, but unfortunately, Alice felt ill within about 4 hours of arriving back at our tent, and although recovering, Milly then wasn't well and we ended up packing up and coming home early. Illness under canvas doesn't mix! We are fortunate in having 5 days booked in Scotland from this coming Saturday at Malcolm Sargent House. We’ve never been and don't know what to expect - excited and nervous at the same time!  

It is Milly's birthday tomorrow (19th Aug) and we are having family around for a little tea. She'll be 10, which is frightening, as she is still so 'little girly' in many ways. Milly has a nice surprise for her birthday (that is not weather reliant, thankfully) and I'll be busy baking a cake later! She had some friends for tea on Saturday and amazingly, it was sunny and they got to play in the garden. Birthday cards are arriving, but I'm keeping them all for tomorrow, so thank you if you've sent one!

Thanks to all of Milly's supporters - Vik's grandma (how lovely), Becky (Crafting Friends), Karen, Maria, Despina, Linda, Jenn, Jane B, Sarah and baby Jared (aww), Marja, Claire (Cardmaking forum), Post Pal team, Maddie (Crafting Friends), Jeanette, Marjolyn, Hannah & Hayley Thorn, Helen (Crafting Friends), June Junko, Katy Dee and also to Sammy, Abbi & Brittany from the Church Group, Boulder City, USA.  She just loves receiving her mail.

Update 2nd July 2008

Milly had a surgery yesterday at GOSH and is already almost back to her usual cheeky self. Her head is a little sore, but she's fine about it and enjoying being down here, back in the limelight (minus her sister, I think)! Milly is also having her annual 'MOT' this week down at GOSH so we've managed to make it a productive visit. I am enjoying the luxury of GOSH in comparison to RMCH, which is Victorian.

Both girls are going to Over the Wall camp on 27th of this month. They were lucky enough to go last year and now she knows what to expect, Milly is mega excited. She is planning which outfits to take for disco night, etc. I am going to camp nearby again so that I'm around if needed - I can't bear the thought of been 300 miles away in a panic! 

Again, as we're in London, our 'thank you list' is at home and so I can't recall the people individually. Just thank you to all. Kate D for the fab crafty set - already half done. A special thanks to Viks, who has managed to master the art of sending a card to GOSH to arrive while the patient is still there (it requires real skill) - I was amazed and Milly delighted!

Update 16th May 2008

Milly's head hasn't improved, so she is going to be admitted on June 16th for surgery to sort it out. In typical Milly fashion, she is excited about seeing her 'friends' down there. I'm hoping to do the trip with her as I can't think of sending her with anyone else! Thankfully, it should be a good point in Alice's treatment and it'll also be nice for me to spend some time with Milly who has been playing second fiddle lately. There is no great plan for her teeth; it's really a case of encouraging her to put up with them for the minute.

Milly has done little in the way of formal school work these last few months, but we've done lots and lots on a practical level. As Alice is at home so much, we have been looking into the make up of cells, and following the journey of a cancer cell and how the chemo actually works. It’s interesting stuff for all of us.

Alice and Milly are both being bridesmaids at the end of this month. They have beautiful ivory sequined bodices and tulle skirts. Alice is going to collect her wig next week, so we're hopeful that she will feel like a princess and have a very memorable day. 

I competed in the annual 'Keswick to Barrow Walk' on Saturday 10th and managed to complete the full 40 mile walk, raising around £1,000 for Clic Sargent Childhood Cancer. I'm hoping to raise around £5,000 doing the Inca Trek for GOSH in November and I've already raised thousands for 'Jeans for Genes', so next on my 'hit list' will be fund raising for 'Over the Wall’ (OTW) and for 'Postpals' ... watch this space!

Update 1st April 2008

Milly has had a busy month. She has managed three visits to GOSH in the last 4 weeks! We are waiting for the results from her contrast CT but assume that there is nothing too horrible going on as they normally contact you sooner if there's a problem! She has been living with her Nan & Grandad while Alice is in hospital and this week is spending time with a close family friend to give us a little breather!

Her teeth are giving us concern as they are literally sprouting out all over, quite suddenly! We're due down in GOSH again for a sleep study shortly, so we'll have a chat about that then. I have managed to miss all of this years visits so far!

As with Alice, I owe any 'Milly supporters' an apology. I simply haven't had my act together this month, so many cards slipped through the net - I will endeavour to do better in the coming months. To all who bothered to send something to Milly, 'thank you'. Those I did 'clock in' were cards from Eloise and Jenn, a Bratz doll from Kate Dee and the sweetie factory shop for the candy bags which were a huge hit, an Easter bunny from Martin, Jackie & Jamie and a beautiful hand knit, pink hat from ? (again - I am so, so sorry. We lost the contact and so can't even thank you). Whoever you are, the hat fits perfectly, is gorgeous and will be well loved! The e-cards from Marie are always a hit - thanks. Milly was also the chosen one for a card circle this month and we had some absolutely exquisite hand made cards arriving (too good for the board) and put my pathetic attempts to shame. Thank you very much - we loved them all, especially the 'fashion' one! I can only apologise again to those I haven't thanked - lets hope that I get my act together!

Milly is doing the Race for Life with Alice and a group of friends (plus us Mums) soon too.

Update 27th February 2008

Milly has had a quiet month on the health front. Daddy will be taking her down to GOSH next week for a meeting with the craniofacial team and other appointments. She has been really good about me being away with Alice and is enjoying spending time with her Nan. Home education has become baking, knitting and sewing with Nan or orienteering, walking and bird spotting with Grandad. Milly's 'Mother's Day Card' design can be purchased on the Jeans for Genes website and she'll also be featuring in some literature to support this year's appeal. 

Special thanks to Julie and Joe & Sam who sent very generous gifts to both girls - Milly was thrilled. Also to Joyce from E J Crafts in Ulverston who provided a 'Mother's Day card kit' for Milly to make (I'm not supposed to know yet)! We have also had lots of cards including ones from Helen F, Viks, Dawn (Vik's mum), Julie and Denise Workman (USA). Cat (pal Gaby's sister) sent a lovely long letter which Milly will be responding to. Apologies to anyone missed - I did leave instructions to keep track of any letters and post, but you know what men are like! THANKS also to Erin F & family, Over the Wall, Jeans for Genes and GOSH for their support. Last, but not least, to Viks for all the 'middle of the night' text conversations!

Update 24th Februrary 2008

Milly is due in GOSH the week after next - her dad is taking her as I think I'll be tied up with Alice. They want her down to check this scar thing (open wounds from the frame last year) as they are concerned that it is going to spread into a bone infection if they don't do something. I am praying that they can do a 'quick fix job' on her as I really don't want a grafting thing going on at the moment.

Update Februrary 2008

Milly's sister Alice has been diagnosed with Hodgkins Lymphoma and been admitted to Manchester Children’s Hospital. She now has her own page which can be found here. Milly's nan is taking over looking after Milly and taking her to hospital appointments to Great Ormond Street etc. It’s a tough time for all the family.

Update 30th January 2008

Sorry for not updating for a while. We have been a little busy with Alice. Things are not much better for her, but she is now having various tests and procedures at the hospital, so we do at least feel we're moving forward. She is at school, but struggling and we are just trying to keep her positive.

The Child of Courage awards were lovely, but many of us parents felt it was a huge PR exercise. The service was emotional and we had had a tear in our eye when Milly was presented with her award. We had lunch in the House of Lords and sat next to the Bill's Lisa Maxwell who is gorgeous, and Julie Cowell who was just such a genuinely lovely lady. Milly described it as the best day of her life after meeting Shayne Ward. Alice received a 'Bobby Bear' from Lisa's partner, Paul, on her birthday that weekend and a card from Julie Cowell - how nice is that? A week later, we were invited to the GOSH Christmas party and Milly and Alice were introduced to Sir Paul McCartney - 'Paul who?’ is what Milly said! We travelled back first class from Euston, after Milly showed her huge medal to the train manager and announced in a large voice 'Don't you know who I am?!’

We had a lovely Christmas Day... in Lapland! We had kept it quiet from the girls until quite late so they were really thrilled. After last year, we just thought 'to heck with the expense' and went. By the end of day two, Milly was whizzing down the mountain with parallel skis... no fear! Alice was a little more cautious, but made good progress and it was just nice to do a family thing together. 

We arrived home to some lovely cards and gifts for the children - thank you so much to all of you PALs (too many to name individually). Many of you included Alice - she was especially thrilled with her Take That CD and H.S.M. DVD from her Christmas Elf, Nicola. There were many handmade cards among them and it's lovely to know that so many people took the time to send something to our girls. THANK YOU again. 

Milly's head still isn't healing - our appointment is soon, so we'll discuss what the options are there. She is also having a few problems with her teeth - this is very common in Crouzon's kids. Due to her restricted jaw, her teeth are coming through in double rows. It's never really bothered her before, but lately she's been complaining her mouth aches and we think it's because it is now adult teeth trying to push in. There simply isn't the space! We know that this is normally addressed with reconstructive surgery once the teeth are all through, but don't know what can be done at this stage. We're keen to avoid any major surgery for a while - another question on my list, I think!

I am continuing to home educate Milly and she loves it. I really don't know if we'll ever send her back to school. It was initially a short term solution but now that she's into it, it's wonderful. She has more surgery ahead and home educating gives us a greater flexibility. She is much more confident and now mixes with a far wider spectrum of people than any school could ever present. Milly is taking me to her annual 'parent and child' Pony Club day next week - watch this space!!  

As usual, an essay rather than an update! THANK YOU TO EVERYONE once again!

Update 7th December 2007

A quick update for this month as we are back between visits to London. Milly has been down at GOSH this last week (all okay) and we are due back there next week, but for something rather exciting this time - we heard a few weeks ago that Milly has won a Woman's Own 'Child of Courage' award. It should be a wonderful occasion, but has been slighted marred by them adding the label 'beating the bullies' to Milly's picture. Unfortunately, the local press picked up on this and a few unkind stories resulted. Milly was heartbroken about the 'bullying' label as she has never been bullied and our town folk are very supportive of her. I have managed to shield her from the negative press, so please don't mention it. Onward and upward!

I have committed and signed to do the Inca Trek for Great Ormond Street in November of next year. Read my fitness (unfitness?) blog at http://goshmum.blogspot.com/ - it is intended to be light hearted and also has links to recent articles about Milly. 

Alice is much worse. A further visit to our consultant resulted in her being added to a '6 month waiting list' for therapy - that'll be helpful, won't it. She is still not at school and we are now considering home education for her too. I simply can't bear to watch my previously happy and healthy so unhappy. She has lost so much weight that she looks terrible and is constantly crying. My respite now comes at 6.30 in the mornings when I go to the gym, prior to Simon heading off to the office!

Thanks for all the support and particularly for those who continue to include Alice. I think that Milly is on a high with all the attention she is receiving at the moment and it is so easy for Alice to feel pushed out. We have acted as an 'elf' this year and the girls each contributed a little pocket money towards the gifts to send to our Pal. It was a valuable lesson for them to be giving as well as receiving! 

Thanks to Kate Dee, Aasiyah, Karen (Dorset) and the Post Pals team for your lovely cards. Becky Butler also sent a lovely letter to Milly, and Jessica sent one to Alice. Denise from the USA sent Milly a lovely letter with a picture of her cat, Frankie. Thank you so much. Thanks to Sera (Bambino) for the sparkly Xmas Garland too!

Wishing all the Pals, supporters and the Post Pals team a very happy Christmas time xxx

Update 30th October 2007

Milly spent a few days down at GOSH in the middle of the month. She had a full 'MOT' done and most is looking good. She was generally tolerant of the procedures and managed scans and x-rays without sedation, which is so much easier for all concerned. The 'down side' was that her breathing is still not quite right and we may be looking back to CPAP which isn't wonderful. She had to have a tube camera inserted up her nose and down her throat which she just hated - this wasn't a nice procedure and she had to be held down (bad mother)! Her big scar is healing well (at last) but with all the infections it has left quite a noticeable bald bit - her surgeon has said that they will be able to do something about this once she has finished all surgeries at around 18. Until then, it's Alice bands!

Milly has been asked to do some publicity for the forthcoming book 'The Remarkable Story of GOSH' which is been published shortly - she has a short story within it. We have been involved with the press office in London and Milly is very excited about it all. We celebrated Jeans for Genes Day with a coffee afternoon and managed to raise almost £1,000 in 3 hours! Literally the day before, we were asked if we would allow the media to use our 'fundraiser' to raise awareness of J4G. We agreed and the resulting BBC interview can be seen here (just a pity that you can't edit Mum out) - I thought that you might all like to see Milly 'in the flesh'!  http://www.bbc.co.uk/mediaselector/check/player/nol/newsid_7030000/newsid_7030900?redirect=7030945.stm&news=1&bbram=1&nbwm=1&bbwm=1&nbram=1  

Alice is still not well. We are now seeing various doctors with her. She seems to have turned into a complete wreck and won't be left anywhere for even a minute - she worries that I'm not going to turn up for her. On the rare days when she makes it into school, they call for me to collect her at around lunch as she makes herself ill, which then makes her sicker because of her diabetes. I think that years of me being away with Milly is starting to affect her and I'm making a huge effort to have one to one time with her every Saturday. She claims that she loves school and doesn't want to move elsewhere so we are trying various confidence boosters with her, but don't really know what else to do. Thanks to those of you who include Alice, most diabetic children would be the main focus in a family unit, but unfortunately that isn't the case for Alice.

Milly has had lots of smiley post this month! Thank you to Kate Dee, Nicole D, Karen (IOW), Karen (Dorset) and Josie Lovell. Milly received some lovely letters from Taylor, Emily, Caitlin & Sophie. Denise from OH, USA also sent a lovely letter - thank you. Thank you so much to Jade for Milly's Bratz belt and choccy lolly - she loves the belt! Thanks also to the two Karen's!

Alice got some beautiful cards from Kate Dee and one from the Post Pals team (hand made by 'Nanny Joycey') - thank you for including her. Alice was also included by Sophie & Collette from Scotland with some lovely letters - if you write again with contact addresses, Alice would very much like to respond. She was also thrilled to receive a lovely package from Emilia - thanks so much.

Update 1st October 2007

Milly is very well. We'll be in London from the 16th to 19th October, and as we are having 'the full monty', we are hoping that all the results will be good and we can relax a bit. We are holding a 'Jeans for Genes' open day at our house this week. Now Milly is at home, she manages to get to the post before me! Thanks go to Kate, Karen and Josie for some lovely cards. Milly was absolutely made up to receive a 'Milly' cat this morning, from the Post Pals team - thank you so much. 'Milly mk2' is now snug in Milly's bed, ready for tonight!

Alice on the other hand is still having a bit of a rough time. We just can't seem to get her levels sorted out and this is resulting in her having stomach cramps/headaches and generally being all over the spot. We are waiting for some results back from the hospital for her. Alice is trying very hard at school, but doesn't like to make a fuss, so tends to carry on even when she's not feeling right. Thanks to Kate Dee for sending Alice a lovely card - she was really thrilled with it!

I have joined a gym (with an aim!) I am thinking of doing the GOSH overseas challenge next year (I'll be 40) and know that in my current state I'd be lucky to make it up the aircraft steps. Milly will have been a patient 'at' Great Ormond Street for 10 years next year! Watch this space!

Update 11th September 2007

Milly continues to be well and we are still learning together, at home. We have had our appointments at GOSH re-scheduled for the week of 15th October, which is dragging it out a little. We are very keen to get her checked. The main scar is looking better, although she is very aware of the bald bit. Fortunately, girls can wear all kinds of wonderful styles and we try to cover it as best as we can. We're staying for 3 nights and also having a sleep study as her breathing is 'not right' at night time. We are hoping that she won't have to go back to CPAP. It will actually be nice to see all our friends at GOSH as we have never had such a long break from there (not that it isn't a good thing)! We will update after our hospital visit.

Alice is now back at school after a rough patch. She started secondary school this week, but is having night time hypos which are resulting in her feeling rough the following day. Her diabetes has been all over the spot and she really wasn't very well. We are now starting 'carb counting', which is a little like WeightWatchers, but for life! I'm confused about it so I don't know how Alice will manage to work it out. 

Milly had some lovely birthday cards from Vicky, Ritra, Becky, Kat, Katie D, a beautiful 'Bambi card' from Julie Barrett, a gorgeous butterfly card with 'MILLY' on it from Cathe and a great card from Post Pals (beautifully made by Carol). Thank you! Thanks also to Kate Dee for sending Alice a card - she loves it when she gets something!

A big thank you to the following people for their lovely gifts: Becky Butler for the Gel pens (they have been well used!) Katie Dee for a very exciting package - she loves the nail factory! Kat for the cuddly bear and top, Sue for the lip-gloss, and lastly, thanks for the cocktail set from Sera - Bambino Baby.

Update 12th August 2007

July was a good month for us... we had a weeks family holiday and we all enjoyed a break together in the sun, doing very little! Milly wore swimming goggles for the first time ever (she has never had the bone there to support them) and insisted that they were fine, despite the red marks! We remain cautious. 

The girls both went off to the 'Over The Wall' camp at the end of July for the first time.  Alice was a little nervous about it all and clung to us until we left, waving until the last second. Milly on the other hand, was off and she didn't even wave (sob)!! I worried all week, but any concerns disappeared when we collected them - both had the 'best week of their lives' (in their own words). Both of our girls had been able to talk to other children (without adults around) about their conditions and treatment. Milly said that in 'lights out time', her group had all been swapping hospital stories, who had had the biggest ops, etc, etc!! Both bonded with a few of the volunteers (who were wonderful) and Milly in particular, was very sad to leave one of the girls. When I collected the girls we took advantage of the good weather and camped in Bournemouth for a few days. I managed to clock up 1600 miles on my car in that one week with dropping off/collecting!!

Milly's favourite nurse from GOSH came to stay with us for a few days (strictly against protocol, but we won't tell) and she enjoyed a few days touring the Lake District with us and generally being at Milly's beck and call!! She is one of those kinds of nurses who made the bad days bearable. 

The scar... well we're a little concerned about her scar line over her skull which has parted in places and become infected. We are using a local antibiotic at the moment but it is a slight concern that it doesn't want to knit back together properly. Thankfully, we can deal with this at a local level for the time being. Scar, MRI, ENT and Opth are all soon, so it will be good to get an overview of how things are going. We are hoping that Milly will have a good surgery free period!

Alice has been diabetic for one year next Sunday (Milly's birthday). She had to have her annual big bloods taken and after 4 failed attempts (on 2 visits) they are now looking at doing it under anaesthetic when she has some deeply rooted, extra teeth removed. 

It's Milly's birthday next Sunday and she has chosen to have a pony gymkhana, which the local stable are arranging for her. So, no frilly frocks this year - she has a pair of pink jodhpurs for the big day!

Milly features on the Great British Duck Race 'Post Pals page' - please click on the link below and help support this wonderful cause. I can't imagine how dull life in hospital would have been without Post Pals -

http://www.thegreatbritishduckrace.co.uk/charitypage.php?charity=368  

Thanks to 'Deofina', Becky Butler for a fab book, Jasmin for another great letter, Karen from Dorset, Estelle, Collette, Kate W and finally (but not least) to Kate D. Unfortunately, Milly mixed the cards up on a couple of gifts, so now we're not absolutely sure who sent what (sorry)! However, the 'dress up doll' set has been played with continuously and she insists that it was Kate who sent it (but I'm not sure which one), foot treatments applied and nails painted - you know who you are! I am going to make a huge effort to get to the postman before Milly, who now hangs around the door each morning. No doubt (as always) I've managed to miss someone out - sorry. Continued thanks to all the wonderful girls at POST PALS!

Update 3rd July 2007

Milly has had a wonderful, non-eventful month! Our appointments for GOSH have been put back so no trekking down to London. We couldn't make our local appointments either due to having to be elsewhere, so we haven't seen the inside of anywhere remotely medical for the first month in over a year! We are enjoying our time together home educating and are amazed by just how much you can fit into a day! Our corn is now about 2 - 3 feet tall and growing!

Milly and Alice are both going on an 'Over the Wall Camp' this summer. It's an organization for children with health problems and we were given the info via GOSH. After Milly was invited, we were told that Alice also qualifies as she too, has a chronic condition. I initially felt guilty as I know that there are far worse off than our kids, but we were assured that they are there for all these kids. As Simon needs to work (to feed us), I'm going to take the girls and then spend the week camping close by (paranoid Mum) with our dog - I'll take a few good books. I'm not too sure how I'll cope - I've never really left Milly. The girls on the other hand are very excited! 

Alice went on her first trip away with school for 3 nights in June and managed her diabetes perfectly - we were really proud of her! AND FINALLY... we (Mum and Dad) took our first night away together last weekend (without children) and made good use of the hotel... sleeping!

Thanks to Pam for all the email jokes, Leslie from California (great card) and Kate W (Postpals) for a fab girly card. Thanks also to Karen from Bournemouth, Annie from Staplehurst and to Jasmine - Milly loves your letters! We plan to add them to our Postpal wall which is (at last) in progress! Not forgetting Kate D again - thank you! Also, a lovely friendship bracelet - thank you Post Pals! 

Update 4th June 2007

The first half of May was a bit rough and Milly ended up back in hospital before the operation date as her skull was becoming badly infected. Eventually, they gave us some stronger antibiotics which kept things under control until the frame was removed. It cleared up in the following week or so.

So now, we have this new little girl and it's taking some getting used to. I think Milly is rather fed up with everyone telling her 'how much better she looks' - Milly never had any issues with her looks. Even the Consultant walked in after the frame was removed and said 'Well Mum, what do you think? It's a great job isn't it', to which I was speechless. The surgery was done for medical reasons only and had it been purely for looks, we'd rather have kept our 'old Milly'!

Anyway, we got back home for half term which was nice for Alice and we have done lots of girly things together (like painting toe nails and massages, etc).  We did a family meal at Pizza Hut on Milly's first weekend home and stuffed our faces, and let the girls have the ice cream factory (an issue with Alice's diabetes as there's so many sweets). When we got home we all piled into bed together and watched a movie! Then, the next day, it was a shopping spree for Milly at Next - she can actually put clothes over her head again, and a few bits for Alice (Mum, as usual got nothing).  

Our veggies are coming along and I feel a 'really good mother' (infrequent feeling)! We have now moved the corn, the potatoes and the onions out into the garden plot, and the tomato plants are ready to move on into their grow bags. Milly is really enjoying this gardening lark and I can't believe that we've never tried it before - it's so relaxing!

We are due back down at GOSH for more scans and also a hearing test. Unfortunately, Milly's hearing seems to have taken a dive since the frame and she simply doesn't hear me half of the time. However, after all the things that could have gone wrong, the hearing is a small one and I refuse to get too worried about it. She has always had a problem with her hearing and if it's got worse, then so be it! We are keen to get the second lot of scans done, if only to confirm that her skull isn't going to 'fall apart' on us! 

Thank you to Kate Dee for the new postcard collections... we love them! Thank you also for another lovely letter from Jasmine, one from a new pal called Bethany and some really nice letters from Milford-on-Sea Primary School - we loved hearing from you. Thanks to Susan who has just been to London (modelling) for the letter and an email from a cool guy called Michael who also has Crouzons. WOW - a fabulous pack arrived with gifts for BOTH girls - they were thrilled and it took us a while to work it out who it was from (especially as John Lewis wouldn't disclose the sender when I called)! 

As usual - a life story and not simply an update! THANKS AS ALWAYS TO POSTPALS & ALL (especially the ones I've inadvertently forgotten to mention)!

Update 1st May 2007

Milly's scar is healing well, although it is still giving her grief. The screws are becoming embedded in her scalp with crustiness... only another 2 weeks to go! We (I) am a bit concerned about all the scars she'll be left with (she has 10 bolt holes into her scalp and five pin holes through her face) but I suppose that in the scheme of things, it doesn't matter. We're told that they should fade?! We have told Milly that she can have a night out when she is out of hospital and she has chosen to go to Pizza Hut (and not the nice little Italian down the road) - such class!!   

We had a lovely surprise on Tuesday... a letter from 'Blue Peter'! They have awarded Milly a badge for bravery! She is thrilled and is wearing the badge all day (and all night, actually!) We have always watched the show and entered many competitions (unsuccessfully) so this is so lovely - a fabulous 'pick-u-up'! 

We have marked out our vegetable plot this week. Our seeds are (hopefully) growing under the protection of the propagators and the whole thing has been really therapeutic for both me and Milly!

We received a picture postcard from Australia and one from America. Jasmin sent a lovely card with a bracelet which Milly loves, so thank you! To Katie D – thank you for yet more surprises and another lovely card!

Update 20th April 2007

Well, we managed to get home for Easter! It was short lived as Milly developed an infection. Our quiet weekend ended up with us packing (the just unpacked) suitcases and driving 300 miles back to GOSH! We have just got home again (fingers crossed) and are now washing her scars twice daily in a special antibiotic scrub. She is a bit negative about the whole thing at the moment - I think that she has just had enough of it. We had to stop at a motorway services to use the little girls room and it was just horrendous, with lots of pointing and staring - people are SO rude! It's such a long drive, especially as she can't relax with the frame being in the way. The screw and pin sites into her skull are itching and her scar is now bleeding and very tender - it's becoming harder to keep them clean. Alice was gutted that I missed her first day back at school as it's been 2 months since I managed to get there... I am making a huge effort to get there today!!

On a more positive note, while we were back in hospital we had a visit from Kevin Telfer. Kevin is the author of 'The remarkable story of Great Ormond Street Hospital', which will be published later this year. Milly entered a competition earlier in the year to write about her experiences in hospital and Kevin came up to the ward to let Milly know that she has won the competition and her story will be published in his book. We are so proud of her as it was all her own work and ideas. It will be a lovely tribute to all at GOSH, as she wrote about how much she loves it there! 

It seems that we also have a budding artist as she also had a call from Harriet in fund-raising at GOSH. Harriet informed Milly that her stocking picture (drawn with Mark Speight from SMart TV) has been selected to be printed onto the 'GOSH Xmas Charity Mug' in this years fund raising catalogue. Needless to say, all of our friends and family will be receiving one, and we're thrilled that Milly is helping to raise funds for a very deserving cause.

Update 8th April 2007

We have been home for a couple of days now and it feels SO good! Milly managed to fall off a chair yesterday and just caught herself with her hands, so we are now following her around everywhere! We are back at GOSH in a couple of weeks for a check, and then surgery is scheduled for the 14th May to remove the frame (which is just a minor op). It's taking us all some time to adjust to the 'new Milly' as she is looking very different. Easter is interesting this year as Milly can't really eat very much and Alice is diabetic... it will do Mum some good!

As we can't get out 'in public', we have decided to try and plant our own little vegetable garden. We have a plot marked out - any simple ideas from green-fingered readers would be welcomed!

We are so glad to have 'found' Post Pals - it has made such a difference to Milly. It became a joke at GOSH that there is an official 'Milly P fan club' as she received so much post. It really gave her a focus each day and we'd keep back any letters to use as distraction during medical procedures (sneaky of us)! Thanks to all - now we are home all the stickers, books, nail enamel, etc are out! A favourite in hospital had to be the 'Bratz Balloon' - I think it was because she couldn't really do anything and it was just good to look at (and we named her!) We had to deflate her to get her home and now we are taking her to the local florists to be re-inflated! Milly got some beautiful cards including a hand made collection from Kate D which we are going to frame for Milly's bedroom wall!

Update 28th March 2007

Milly's surgery went ahead early on 5th March and by teatime we had her back in the HDU. It was a bit of a shock to collect her as she looked so very bad - a little as if she'd been in a boxing match and lost. The surgery was said to have gone well although she was very weak for a while as she'd lost a lot of blood (grateful thanks here to all those blood donors!) Her eyes were swollen shut for about 10 days and she couldn't really eat either so was on milk feeds nasally, which really upset her. I read so many stories to her during that first bit!

Things are so much better now. We're still down at GOSH but hoping to go home next week for some peace and quiet as you know how busy hospitals can be. Milly has been going to the school down here with Alice (who came down last week) and that is helping to fill her day a little. 

She loves all the post and it has become a ritual for her to wait for the ward post every day - she shouts out ‘here it is!’ We pray that there is something for her as she gets so excited by it! We have had lots of wonderful things sent and over 140 cards now (from friends, family and post pals) - her room is the most colourful in the whole ward if not the hospital. Milly has received some lovely and thoughtful gifts ranging from a huge Bratz balloon, to books, stickers and cuddly toys. She also got some beauty bits and spent the evening painting the nurses nails!!!

We'll update once home again - just to say thank you to every one. It is so wonderful to see the excitement receiving post brings... a great distraction! THANK YOU TO ALL.

Update 2nd March 2007

Milly hasn’t had a good week - assessments, bloods, scans etc have left Milly feeling a little nervous. She had a bad meeting with our psychologist who opened a can of worms that Milly had not even thought about prior! All ready for surgery on Monday now - thankfully, we're the only ones on the list so we won't be hanging around all day. I feel sick but we know it's got to be done. 

On a serious note, if you're the praying type then do so on Monday for Milly. The consent was just awful (as they always are) and it's only really hitting us all now. Luckily for Milly, she's blissfully unaware of the risks and thinks of it as just another op. We were relieved to see Great Ormond Street listed as 'exceptional standards' in the otherwise depressing report on the UK's Children's hospital.

Thanks should go to Saffron from Mevagissy who sent Milly her very first Post Pal letter and now also to Anna Mae (who I believe is a post pal herself) and finally for a beautiful card from Kate Dee (hand made with love we think)!  Milly has decided that once she's home around Easter, we're going to create a 'Post Pals wall' and decorate it with any cards and letters she receives.

Update 24th February 2007

Milly is due to go into GOSH next week for pre-op assessments, prior to RED frame surgery on 5th March. We're all dreading the surgery, but know that we've got to go with it. She'll have her facial bones broken and attached to an external frame device in an attempt to 'pull the face forwards'. The bolts will then be turned each day to lengthen the bones, with the frame staying on for around 3 months. This will hopefully release some of the pressure on her eyes as they currently dislocate which is very distressing, and also we hope it will improve her breathing so we can reduce the CPAP rate. Unfortunately, this won't have long lasting results and we'll be looking at repeating it in a few years time.  We'll be away from home for about 3 - 4 weeks, so any post will cheer Milly up! 

Milly is leaving school this week to be home educated. She misses so much school already and despite starting 'ahead' of others, is slowly getting behind. Unfortunately, the school just isn't able to give us the support that we all need and we've decided (after much debate) that Milly will be best at home for the time being. She is having a little tea party to say goodbye to her friends, but we're hopeful that they'll keep in touch with us. Alice is having a hard time with her diabetes as her blood sugars are all over (I think that she's worrying about us going away). It's horrible to think of leaving her, but we're hopeful that she can move down to GOSH with us after the initial week. 

Milly was invited down to 'Dancing on Ice' last weekend and we'd love to say a big thank you to 'Hannah Thomas' from ITV who made it possible. She didn't get to meet Kyran and Melanie who she supports, but it was good just to be part of it!