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, Bratz dolls, and wants to be a fashion journalist.

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?

Long handwritten letters

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 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

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!