Tuesday, April 8, 2008 3:35 PM CDT

Update on our precious Angel who is poorly is hospital - 8 days now today ----

Jasmin did great Saturday night and Sunday – she stayed on 35xygen (o2) all day and night, then Monday she did even better and got to 28xygen via nasal canulars – which is nicer for her as no mask. But at 4pm she got real bad diahorrea – terrible, unstoppable – so feeds stopped and dioralite put in it’s place.

Well they put her on to same 28xygen at bedtime as she is a mouth breather so mask better for her that nasal cannular –well within 75 minutes her oxygen saturations (sats) had plummeted and she was then requiring 80xygen to gain 92 sats! Physio came in and we did a major hard session on Jasmin chest to try to get out her secretions to pump up her sats – but didn’t work, she sounded really dry – she was totally unrouseable so we called in the doctor – who took some blood for a blood gas – and this result was fast done and good – so although she was ‘ out of it’ asleep and requiring a high level of oxygen her in and outtake was very good – so this was a relief. Jasmin slept through all of the physio and blood taking – i personally was in bits with fear! They did not give her her evening feed as not good to have full gut and conjusted lungs so she went back onto iv fluid maintance as they call it overnight.

Jasmin just seems to be totally exhausted – but exhaustion cannot be taken lightly with her and her condition – this can be as fatal as a pneumonia – if she just cannot manage to have the strength to continue.... Jasmin was put on a different oxygen system – can’t think of name, something like non-re-breath – which is more intense --- she had this for an hour to regain her sats on 802, which worked then she was put back onto humidified oxygen which is better as not so arid. Jasmin then continued to sleep all night and didn’t wake until 2.30pm. She woke very pale and shattered bless her. She just rested throughout the rest of the day – i just suctioned her when she coughed – i asked that they didn’t do intense physio on her chest today as she was bruised from 7 days on intense pummelling on her little chest! Poor little lamb had so much physio insult! Needed I know but today she really needed just to rest and regain some energy. This morning we were able to get her O2 down to 40nd give her a full normal feed – she slept most of day as i said then woke with a smile – bless her!!! Put dvd on for her and she giggled! Jasmin is the bravest little girl – she just gets on with it, it should put so many people in this world to shame!

She did her own coughing and i suctioned out lots of gunk which is great, then I left her with Dave as we had agreed that he would stay with her in hospital tonight and I would go home. Gosh so hard! I left a huge list for him, nurses and doctors and have texted him continually! Poor man! Jasmin at this time has had to have her O2 increased to 60 but if she gets to 80hen Dave will let me know and i shall go back to the hospital to be with him to oversee her care from there.

Life is fragile – Embrace it!!!!

Saturday, April 5, 2008 4:35 PM CDT

Jasmin had a slight crackle in her chest mid-afternoon on Monday which I treated with physiotherapy and suctioned – first time in ages had to do that. Later that evening she had another crackle – again same treatment but gave her some oxygen to help her and she went to sleep at 8pm. At 1am she was coughing and I went to her and she sounded like Darth Vader! Huge crackles in her chest, real bubbling. I did some physio and suction, gave her a salbutamol nebuliser and then oxygen, gave up to max 5 litres I have at home but could not stabilise her so I had to call an ambulance. The paramedics came very quickly and Jasmin had oxygens saturation (sats) of just 87. They gave her another nebuliser with another drug in plus put on a higher load of oxygen and stabilised her then we went with them to Gloucester Hospitaln- The Childrens Centre.

They immediately put Jasmin on to IV anti-biotics with a canular in a vein her one hand, and 80% oxygen quickly and put her into the High Dependency Unit (HDU). They also put her onto IV fluid and stopped her peg feeding as this can cause problems if stomach full and lungs not working well. They then put a line into her artery in her wrist to get blood from as this is gives a better reading of ‘blood gases’ which is her air intake and carbon dioxide outtake.
The next morning – things were very bad – they said that Jasmin may have to go to Intensive Care (ICU) again as last year! We were petrified. Loads of Doctors came to see her including the ICU doctors and an Anethestist – there is on Peadiatric ICU at Gloucester, so the Adult ICU team would intubate her then have her transferred. They only thing that stopped that was that her ‘blood gases’ came back good. Although she was on 80% oxygen and had a high respitory rate her gases result saved her from ICU.

Jasmin continued on 60-80% oxygen for the next two days and they gave her 2 hourly nebulisers, physio every 3 hours and reduced her anti-biotics to 2 from 4 after finding from their cultures that she has (still) pseudomonas in her lungs and also now e-coli!

Jasmin’s canular then failed and trying to find a new vein was a struggle – but they got one in the same hand but in the wrist – this then gave up today so she now has one in her foot.

Well, today Saturday... she is on 40% oxygen and is coping well – she continues to have chest physio 4 times per 24 hours and she is coughing well and she has had alot of suction and this is getting a huge amount of secretions out. Jasmin is exhausted today from all this suction – she has been very relaxed and sleepy all day.

She needs another 5 days of the IV anti-biotics and of course needs to come off oxygen before they would let us bring her home.

So – we hope and pray that she stays going forwards in this battle.

Tuesday, March 25, 2008 3:02 PM CDT

Hello Springtime!

?? Big question mark there for us in the UK, as one day sunny then next hailstones! But I defo think Spring is here, as Dave has mowed the lawns today – partly due to the one day of good weather and the other reason as we have 4 dogs with us this weeks, so in short grass Dog poop is easier to see!! We are dog sitting my parents two dogs as why are on hols! So we now have Honey, Darcy, Bruiser and Cola!! 3 Bitches and one dog – all ‘done’ thank goodness!!!

Jasmin May is doing so fabulously we can’t tell you! She is a happy little girl with lots of life in her, if you get too close she will still ‘bop’ you one! She still retains her stamina! Go Jazzy!

Dave is still happy at the very prestigious Lygon Arms, Broadway, where parking you car is something that others do for you! Oh how the other half live! Lol!

Dave and I have joined a local health club which is totally brilliant – it is big and offers about 60 classes a week, a huge gym, spinning classes, 25 metre pool, sauna, steam and 2 spas! How cool – this is the first time in 13 years that Dave and I have had to ‘pay’ to club membership as he has always managed a local club or we have had contacts – so this is the big deal! Well, fortunately we both love it loads – lots of classes, spinning (Daves Fave) and huge gym and lots of relaxation afterwards, so we have found that we have been going about 3-5 times a week! – Defo getting our monies worth hey! I personally love it for the mental well being that it gives me -- the Body Combat class is wonderful – you kick and punch hell out of anything that you imagine - my image is MPS always! Hate it!!

Want some big news? Well, Jasmin is going back to school for 17 hours a week from April 1st! Not our decision initially – long story! But that will be great for her – and her carer Juliane will be her one to one whilst she at school.

Jasmin now has a ‘sleep system’ - this is a system that keeps her body in the right position over night so that her vulnerable hips stay well basically. For more information please email me.

Our nephews and nieces are all well – we have our new born Joe James who is now 9 weeks old and totally gorgeous – I have only seen him on photo’s sadly but from what I have seen he is adorable. Little Ted is doing good, crawling about the place and nearly walking now. Mia has started ballet classes – which is amazing as she as clumsy as Aunt Ria! But she is doing well thankfully. Leila is just her lovely little individual-self – she is soooo sweet I cannot tell you! Sadly both Mia and Leila have just had Chicken Pox and poor Leila had it really bad, all got infected and she was on anti-biotics but the worse was she got it in her one eye and it looked like she had been scalded it was that bad! Fortunately she is now getting over that and there is no scaring.

There have been some upsets within our mps friend with their dear children – so bear a thought or prayer for them please if you would.

I have also adopted a new little sister – Vibeke – she is 26 and is from Norway, Vibeke has mps6 – she is great fun, we message each other allot – visit her site if your wish Vibeke


So for now I leave you with good news Chez Heap!
Love Ria, Dave and Jazzy May xxxx

Tuesday, March 25, 2008 3:02 PM CDT

Hello Springtime!

?? Big question mark there for us in the UK, as one day sunny then next hailstones! But I defo think Spring is here, as Dave has mowed the lawns today – partly due to the one day of good weather and the other reason as we have 4 dogs with us this weeks, so in short grass Dog poop is easier to see!! We are dog sitting my parents two dogs as why are on hols! So we now have Honey, Darcy, Bruiser and Cola!! 3 Bitches and one dog – all ‘done’ thank goodness!!!

Jasmin May is doing so fabulously we can’t tell you! She is a happy little girl with lots of life in her, if you get too close she will still ‘bop’ you one! She still retains her stamina! Go Jazzy!

Dave is still happy at the very prestigious Lygon Arms, Broadway, where parking you car is something that others do for you! Oh how the other half live! Lol!

Dave and I have joined a local health club which is totally brilliant – it is big and offers about 60 classes a week, a huge gym, spinning classes, 25 metre pool, sauna, steam and 2 spas! How cool – this is the first time in 13 years that Dave and I have had to ‘pay’ to club membership as he has always managed a local club or we have had contacts – so this is the big deal! Well, fortunately we both love it loads – lots of classes, spinning (Daves Fave) and huge gym and lots of relaxation afterwards, so we have found that we have been going about 3-5 times a week! – Defo getting our monies worth hey! I personally love it for the mental well being that it gives me -- the Body Combat class is wonderful – you kick and punch hell out of anything that you imagine - my image is MPS always! Hate it!!

Want some big news? Well, Jasmin is going back to school for 17 hours a week from April 1st! Not our decision initially – long story! But that will be great for her – and her carer Juliane will be her one to one whilst she at school.

Jasmin now has a ‘sleep system’ - this is a system that keeps her body in the right position over night so that her vulnerable hips stay well basically. For more information please email me.

Our nephews and nieces are all well – we have our new born Joe James who is now 9 weeks old and totally gorgeous – I have only seen him on photo’s sadly but from what I have seen he is adorable. Little Ted is doing good, crawling about the place and nearly walking now. Mia has started ballet classes – which is amazing as she as clumsy as Aunt Ria! But she is doing well thankfully. Leila is just her lovely little individual-self – she is soooo sweet I cannot tell you! Sadly both Mia and Leila have just had Chicken Pox and poor Leila had it really bad, all got infected and she was on anti-biotics but the worse was she got it in her one eye and it looked like she had been scalded it was that bad! Fortunately she is now getting over that and there is no scaring.

There have been some upsets within our mps friend with their dear children – so bear a thought or prayer for them please if you would.

I have also adopted a new little sister – Vibeke – she is 26 and is from Norway, Vibeke has mps6 – she is great fun, we message each other allot – visit her site if your wish http://www.caringbridge.org/europe/vibeke/


So for now I leave you with good news Chez Heap!
Love Ria, Dave and Jazzy May xxxx

Wednesday, January 30, 2008 12:02 AM CST

Hello to all you Friends and Family and New Visitors,
Well January has been a roller coaster month emotionally for us all here. We have gained and lost, been worried and relieved.

GAIN – we gained a lovely new nephew on the 17th January – little Joe James Carruthers was brought to us by Kath & Jimmy – their first child. Although a difficult birth, the little man is fit and healthy and is doing well. Dave has had the delight in seeing him, but Jasmin and I have yet to meet him as they live so far away, but have seen his photo and he is gorgeous. Huge congratulations to Kath and Jimmy!

LOST – our friend Michelle Craig lost her darling son Aaron on the 29th January to Sanfilippo disease aged just 14 years. Aaron had been very poorly over the last few weeks and he gained his Angel Wings whilst in terminal care at Acorns Hospice, Birmingham. We sent our thoughts and prayers to Michelle, Aide and their sons Liam and Ryan as they learn to cope without Aaron in their physical daily lives. This is Aarons website if you wish to visit and maybe leave a message for the Craig family -http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=aaroncraig

Juliane took Jasmin to Gloucester Cathedral to light a candle today for Aaron, and I lit a candle in the house to honour his memory. I lit two others alongside Aarons – one for hope for Jasmin and another for hope for our friend Imogen. Imogen is my childhood friend Karen’s 6 year old daughter who suffers with Cystic Fibrosis. Immy has been in hospital for a few weeks now but they are coming home today thankfully. Imogen’s care will continue at home under the instruction of her brilliant mother using intravenous drugs via her port in her side, and regular intensive physio sessions on her chest. Immy is vulnerable to infection so we hope and pray that she stays well.

WORRY- Jasmin had a visit to hospital last week to – a suspected Deep vein thrombosis in her groin! This was thought of by her paediatrician as her thigh, knee and calf was swollen, she had also had a few bouts of crying, which is unheard of for Jazzy, so pain was suspected. Alongside this Jasmin has had awful diahorrea again and one night even vomited – which scared Dave and I as this could result in an aspirational pneumonia if she swallowed any.

RELIEF -The results for the DVT gave her the all clear thankfully – but we are still non the wiser as to her, and we managed her bout of vomiting rapidly with suction so no harm done to her lungs.

There is so much illness going on MPS and other disabled children right now, it is all so challenging for their wonderful parents and for the amazing children. We send lots of positive thoughts and pray for all of the families that have so much going on in their lives right now.

To leave you on a happy note – Jasmin May is incredibly smiley right now, she is just a happy girl! No crying for 5 days, just smiles and giggles – so beautiful.

She had her hearing tested at home with her wonderful audiologist Chris and teacher of the deaf Jenny- and they found that Jasmin hearing had improved so much that she doesn't need her hearing aides now!

Also, after much research with Jasmin OT Ruth, we now have a super comfy armchair for Jasmin in then lounge, that give her support, reclines, tilts and is cosy - she loves it!

Plus, Will Brodie our darling little buddy in Brum – is having ERT from home soon! How cool is that – no more 8 hours long sits in hospital! Such a relief for Laura and Dave.

Thank you to everyone that has been in contact with us so much recently to check on us, we really appreciate your time and care.

Please do leave a message to let us know that you have dropped by.

Much love,
Ria, Dave and Jazzy xxxx

Wednesday, January 9, 2008 12:34 AM CST

Hi - Happy New Year to you all from each of us!

A brief update for you....

All is great in the Heap household I am delighted to report! Jasmin is well and happy, lots of smiles for us which is wonderful.

Just before Christmas Jasmin had a procedure done to change her feeding tube to a neat button - this means that she no longer has a long tube hanging our of her tummy - she now has a neat 'button' where I attach a tube to feed then can take it off afterwards. Much better astetically and also saves us worrying about pulling on it when dressing her. She had it done without anethestetic, they simply cut it on the outside and pushed it through so she had to 'pass' the 'washer' type thing on the inside. No I have not noticed it - if you know Jasmin poo then you will know why!! hee hee!

We had a lovely Christmas at home with my parents. My brother and sister and their families came to visit us in the morning then it was a nice peaceful afternoon/evening opening gifts with Jasmin. Jasmin received so many superb presents, toys, clothes and smellies galour! Lucky girl!

Between Christmas and New Year, Dave’s parents came to stay so we had a lovely ‘Christmas Day’ together – lots more eating and gifts!

THERE ARE NEW PHOTOS ABOVE HERE ON A SLIDE SHOW - HOPE YOU ENJOY THEM.

Jasmin, me, Mum, sister Vikki and her daughters Mia and Leila went to Birmingham NIA on the 27th December to see CBeebies Live! It was great fun - Jasmin really enjoyed it - she was waving her fibre optic wand about like crazy! She especially loved seeing the Teletubbies and smiled all through their performance. She saw the Tweenies, Postman Pat, Fireman Sam and many more. Mia and Leila were delighted too - they obviously thought these characters are real so were so excited bless them. Me, Mum and Vik had a great sing-a-long too - bearing in mind we all watch kids tv more than adults! Ha-Ha!

Dave and I had a quiet New Years Eve – we were asleep in bed by ten! Boring old gits hey!

Now we are looking forward to the new arrival which is due on 14th January – Kath & Jimmy’s first child! Very exciting! Another niece or nephew for us to spoil!

Can i ask for some thoughts or prayers to go out to our dear friend Michelle and her family who have a darling son Aaron who has the same condition as Jasmin, poor Aaron is terribly sick right now - click here to read about Aaron – please leave Shell and Aide a message of support. http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=aaroncraig

Take care
Love, Ria Dave and Jasmin May xx

Tuesday, December 18, 2007 9:28 AM CST

Hi – sorry a month has passed and I didn’t even notice! Time flies – especially fast when all is good, and all is so good I’m delighted to report.

Jasmin May is amazing! She continues to stay incredibly well, happy and full of gorgeous smiles. Jasmin has struggled with asthma in the last month – a new thing to add to the list! Well no to be honest, she doesn’t struggle with it as much as Mummy does, – I find it really hard to work out a wheeze, but can recognise a crackle anytime!? I’m getting there – asthma is a whole lot easier if you have a child who can tell you they are struggling to breath, but for those who can’t tell you probably notice it a little later so need to respond somewhat harsher. Anyway, Jasmin is on a steroid inhaler twice a day plus ventalin when required. Other than the Asthma I’m delighted to say she is doing FAB! We are sooooo, sooooo pleased! 10 months ago she had a death threat over her and now, against all the odds, she has surpassed everything and is again a beautiful, happy, busy, active little girl. Dave and I are so proud of her and everything that she has conquered.

December has been a busy month for Christmas parties – not for Dave and I but for Jasmin – she has been a very, very busy girl with festivities left right and centre! Santa is well her case! Jasmin loves the parties, she went to the James Hopkins Trust party, CADCAF party, school party and has a party a Acorns hospice tomorrow too where there will be a real reindeer there. Jasmin dances in her wheelchair – if I put my legs either side of her footplates I can swing her from side to side, whilst holding her hands and swinging those too – she loves it – she even won musical statues! Leila won with her too – both of them – but to be fair neither of them knew they had to keep still! Was funny! I took Mia and Leila to some of the parties with Jasmin, they are such good girls, I’m so proud of them, they don’t even notice disabled children as different from their life of knowing Jasmin they just see it as normal – this is such a blessing.

Another bit of GREAT news – my brother Neil, wife Kellie and baby Ted move back into their home after 6 months out after being flooded! So brilliant they are home for Xmas.
My sister in law Kath is due to give birth in less than a month! Wow another one to add to the niece/nephew list and my sister is expecting baby number 3 in the summer too! All go on the baby front hey!

We are at home for Christmas, my parents will be with us for the day, my brother and sister and families will be coming to visit in the morning before going to their in-laws for lunch. Dave’s parents are with us on the 30th, and have just spent a lovely couple of days with us and they brought Dave’s Nana too, so lovely to have her to stay with us. Nana helped me catch up with my knitting and ironing, bless her – I pray that I am as fit and able as her when I get to her ripe age!

Dave is very happy still at the Lygon Arms – a perfect retreat for this time of year as it is so historic and boast lots of real fires! I’m good although I have a ‘freaky eye’ as Dave says – my right pupil is fully dilated and will not retract – it’s called Homes-Adie pupil – not a worry at all just means I have one pupil bigger than the other! Spooky!! Hee hee!

Incase I don’t get to update before Christmas – We all wish you a very merry Christmas and peaceful New Year. Sending out, at this poignant time, prayers to our very special friends with MPS children, some of which have suffered and are suffering this winter period. We also send prayers to those who have lost their loved ones and think of them during them during this time.

Please leave messages to let us know you have visited – it is so nice to know you have been with us.

Love,
Ria, Dave and Jasmin
XXXX

Sunday, November 11, 2007 3:31 AM CST

Hi

More great news.... Jasmin continues to do so brilliantly - she has not had a chest infection now since April! We get some crackles and wheezes but they are quickly treated with home physio and ventalin. We haven't used the oxygen for many many month now! Yippee!!!

Jasmin has been going into school with Juliana twice a week for about a 4 hour stint, where she is loving her new class and the sensory time that she has there. From Monday she will also attend a music therapy session in school - her favourite.

We saw Jasmins consultant paediatrician and the chest paediatrician last week and they were thrilled with Jasmins progress. Jasmin has been given a steriod inhaler as they found that she has mild asthma, but they are looking at weaning her off the bi-daily steroid that she had been taking since January.

We have an appointment next week to see the surgeon who fitted Jazzy's gastostromy tube in a view to possibly changing the g-tube to a 'miki button' (easier and more astitically pleasing) and maybe doing a fundiplication - this is tying her stomach so that no food can go down but more importantly none can come up - with this op done Jasmin could hopefully then come off two of her daily medications and it would stop any reflux which is a cause of pneumonia.

Monday (tomw) Jasmin is going to Acorns hospice til Friday to be pampered!

All is very good with Dave and I - today we are celebrating 13 years of being together! Time flies...

Please leave us a message to let us know that you have visited,
Love to all,
Ria, Dave and Jazzy
xxxxx

Thursday, October 25, 2007 3:07 PM CDT

Hi All

Everything is totally great right now -Yippee Well.. she's done it...yep been outta Intensive Care now for 8 whole months - 8 months since we were told she was going to pass...they asked for 6 months post ICU ... hey she's given em 8 and still strong!!!! Wow, Jasmin May Heap is a miracle child. When she was in Icu, it was the first time Dave and I prayed in church together and it worked! I will never say a bad word against our Lord again, he helped save our precious baby. He could and would never be able to rectify her condition, it's geneitic and there from when conceived, but he was there to cradle her to health when it was most needed.

Jasmin is a very happy,smiley girl and has been to school for 4 hours in one day per week for the last 3 weeks for sensory sessions.

Too be totally honest it is really hard to get her to school, due to the fact that she is so often neutropenic, is very tired or had bad diriahorrea so she goes when we feel is best and right for her. When she does go she had a super time - she has been changed, on our request, to a PMLD class (mental and physically disabled children)as we feel that this slower way of life would be more beneficial to her with lots of sensory and such like activities.

Her joinyt birthday party and our 10th wedding anniversary celebration was so lovely, so wonderful to have those special people in our life with us on that day. Huge thank you to everyone that was able to join us and masses of thanks for the generous gifts that your gave.

With the money that Jasmin received for her birthday we were able to purchase for her room a 19 inch flat screen TV with built in DVD and free view, on a double arm bracket so that she can view it from where ever she is in her room.

Jasmin continues to be well - thank you Angels!- the only underlying problem is her blood count which is continually bad, she, at this time is just off being neutropenic again. There seem to be no answers to his issue - they say it could just know be Jasmins 'norm'??? not sure on that one - but as long as she is smiling and happy and that chest is clear we celebrate!

Thank you for being there, please leave messages for us - your messages are a huge support to us! God Bless.

Much Love
Ria, Dave and Princess Jazzy May XX

Saturday, September 8, 2007 12:12 AM CDT

Hi – We’ve had a really busy few weeks!

THE WEDDING
We’ve been up north to stay with Dave’s parents, where we went to his sister, Kath’s wedding to Jimmy. It was a really wonderful day, Kath looked a complete picture, and managed to squeeze her sweet baby bump into a gorgeous dress... and you couldn’t even tell she was 20 weeks pregnant! Lucky devil! I looked bigger than her! Jasmin was as good as gold – as always, she looked so pretty in her new dress and diamante tiara in her hair. She smiled for the camera and we have some smashing photos of her – I’ll add to site as soon as I can! (Or as soon as Kim can, lol!). We thoroughly enjoyed our stay in North Wales, it was great to see all of the family; we hadn’t been up since October last year! This was due to Jasmins unwellness. On the Sunday, Jean & Mike laid on a big bbq for everyone, and on Monday we went to visit Nana’s new abode, which is super.

LONDON
Dave and I had a fabulous time in the big city. We did all the site-seeing stuff, ate out and Grease the musical was brilliant! It was so lovely to have that time away together; it was the first time we’d left Jasmin since she came out of ICU. Jazzy was well spoilt whilst we were away as she had her Grandparents, Jean & Mike with her, nursing care from our dear Juliana and stayed overnight at Acorns hospice.

DAVE’S GOT A JOB!
Yep, from Monday he’s back in the working community! He’s got the post of Spa Manager at the 5 star Lygon Arms Hotel! Here’s the link to it – have a look through the photos, it’s very posh! http://www.lhw.com/property.aspx?propertyid=604&ext=Glgnrms&gclid=CODH3O-i640CFRt6EAodpHlvug He’s really delighted to get the role, as he really wanted the job. It’s just 30 minutes travel from the house, which is much better for him than the previous 45 minutes on the motorway. Dave’s been home now for 9 weeks – which isn’t bad is it, before landing the position that he wanted?! Be sad not to see him all day though, we’ve had a really nice couple of months together, but needs must!

HOLIDAY
We’re now home, after a lovely week away in Burnham-on-sea where we were blessed with sunshine! We were so lucky to have a week of heat after the horrible summer that we’ve had here! We stayed in a nice spacious caravan with disabled access throughout – this holiday was donated to us by the Cheltenham Lions Club – huge thanks to them for this welcome break. The Lions club own the caravan at Lakeside Park in Burnham on sea and give free weeks breaks to those who need it. Joy, our Acorns hospice co-ordinator told us about it and put us forward for a holiday. It was a really super small site beside a gorgeous lake with lots of swans and ducks. The beach was nearby, and the lovely coastal resort of Brean just 5 miles away, where we went one day as you can drive your car onto the beach there, which was loads easier for us with Jasmin. My parents joined us for 3 days which was smashing. Jasmin rode her tricycle one day, and she was really happy and lively.

ILLNESS
However, whilst there we found that Jasmin has Gingivitis - bright red, swollen gums and been bleeding. Jasmin had increased secretions too and I had to suction her a few times and the sputum was still clear but turning white and allot thicker - this concerned me as was worried a chest infection maybe on its way. Not good news with her white blood cell count so low. We were away when noticed it - rang my paediatrition Dr Motion and she said to get her to a GP and get GP to ring her whilst we were there so she could have a say in the medication for Jasmin. The GP confirmed gingivitis and said start of a poss. chest infection. Jasmin then started 2 anti-biotics, one for the gums and the other a general one to cover the chest. (Not a 'big gun' one for pseudomonas at this time as sputum still clear). Sputum sample sent in and a mouth swab too. Fortunately her chest has remained clear but she had diarreahoa before the anti-biotics, and since starting it is awful! Today (Saturday) she has had 4 massive lots of pure liquid just this morning! I've given imodium twice and have got her on constant pump feed of dioralite. She’s still very lively and not happy about having to sit still for this long pump feed but I can’t let her lie on the floor and be free as it’s too high risk of her rolling about and pulling her feed pump out! Swings and roundabouts hey!

HANDMADE CARDS BY RIA
I’ve got a little website for my handmade cards http://journals.aol.co.uk/riaheap/handmade-cards-by-ria/ PLEASE VISIT AND PLACE AN ORDER.

BIRTHDAY AND ANNIVERSARY
On the 30th September we are holding a celebration at the local village hall to celebrate Jasmins 9th birthday (2nd October) and our 10th Wedding Anniversary (11th October). This will be a great milestone for us after the chaotic, emotional, scary year that we have had with Jasmins health, so we’re marking the two special occasions with a joint afternoon party.

THOUGHTS
Please spare some thoughts and/or prayers for our darling MPS children friends who have been unwell recently – Georgia, Will , Aaron, Lucas and Jesse to name a few have all had a really tough time lately with seizure activity and other horrid MPS problems. I have also become friendly with another MPS Mum friend, Jen who has just very recently received diagnosis of her son Ben who has MPS111c; poor Jen is suffering the terrible rollercoaster following diagnosis. Our love goes to each of those precious children and their brave parents.

DON’T FORGET TO SIGN THE GUEST BOOK SO WE KNOW YOU’VE VISITED
MUCH LOVE xxxx

Wednesday, August 15, 2007 4:12 PM CDT

Hi – hope everyone is ok

Jasmin has had a swollen knee and calve for the past week – we took her to the children’s centre at Gloucester Hospital – they x-rayed her knee and I asked them to do her hip too. After that 8 hour wait which I put about in the last journal, where we went home without an answer;-

Well, the swelling remained and we got a follow up Orthopaedic apt for Jasmin, we saw a great consultant there called Dr Henderson he brilliant. Firstly he was very angry that the orthopaedic guy who saw us and let go with no answers! He said there were no notes from him about Jasmin??!! Guessing that first guy didn’t look at Jasmins hip x-ray at all as Dr Henderson was not happy with what he saw and promptly rang our specialist Dr Wraith. Dr W said that Jasmin has Avascular Necrosis of the femoral head (the hip ball) (link below)
http://www.zimmer.co.uk/z/ctl/op/global/action/1/id/7997/template/PC/navid/632
it's similar to Perthes disease in normal/healthy children -this is why he things possibly the knee/calf swollen - sometimes shows itself in other areas when there's a problem in the hip. Pain killers and anti-inflam she has to take. This is acute so should go away in time, but the hip ball will always be abnormal in shape and this is more than likely re-occur – it’s sadly common in mps children. How glad am I that I asked for a hip
x-ray!!!

Jasmins blood results were no better - ALL results were very low - bone marrow suppressed still – they were on the rise but now they are falling again??? - but no idea why as have already changed the Septrin anti-biotic to azithromicine??!! Something else is causing this but we don’t know what! Her neutrofils have really dropped; she's just off being neutropenic again!!

Dr Motion her consultant paediatrician is coming to see her tomorrow afternoon, so see what her plan for Jasmin is then.

Jasmin also has the worse diahorrea ever! It's just water at the moment - poor little Princess Jazzy. This maybe because she’s on so much calpol and nurofen for her leg, but she gets runs bad when things aren’t right with her too.

Jasmin, in herself, is wonderful, happy and smiley – she’s been very tired lately – this probably because of her hip or as she’s slightly anaemic. Today we took her to Acorns hospice for a swim in the hydro pool, Dave and I went in with her and Ali, the physio was on the side. Well, first off Jasmin was pretty floppy but then she got quite confident and was kicking her legs, which was wonderful to see, then I held her very loosely and she swam! She had a swim body aide on, but she propelled herself through the water moving her arms and legs. She loved it! It was such a wonderful sight! Ali took lots of photo’s of Jasmin, which we’ve seen and are great, once I get them e-mailed over I’ll load them on here so you can all see.

The weekend after next is Dave’s sister, Kath’s wedding to Jimmy which we’re looking forward to – I’m reading a poem which I wrote for them and Dave’s a witness. The following week Dave and I go to London’s Westend to see Grease and stay overnight at a hotel. The following week to that we are going to Burnham on sea for the week the 3 of us. My parents are coming to stay there with us too for a few days.
Let’s hope we get some sunshine for all of these times!

It’s rain, rain, rain here again now. Last week we had lovely weather and on Saturday we got the paddling pool out for Jasmin, filled it with warm water, all of us go in and she did a big runny pooh in it! So, emptied and then re-filled!! Jasmin really loved it in the paddling pool, splashed out loads and moved herself around on the slippery bottom, it was so hot, brilliant afternoon.

Other news – Leila our niece has finally mastered walking – the infamous bum shuffler has taken to her feet yippee!! My sister in law, Kellie has gone back to work after maternity leave so little Ted joins Mia and Leila (nieces) with Mum for 3 days a week. Blimey my Mum is bionic! Mia is a real card – she’s so grown up for her age with her comments. Mum rang me to tell me Neil (my brother’s) house had flooded for the second time - Mia heard this, she said to me ‘Aunt Ria, who opened the door and let the water in this time!?!?!?’ – Bless! Innocence is great isn’t it! Kath, Dave’s sister is expecting! Baby is due in January – so we’ll be Aunt and Uncle again. Let’s hope she does grow too much in the next 10 days or her wedding gown won’t fit!

My oldest friend Hazel who I’ve known since I was 5, had a beautiful healthy baby boy called Daniel Caelan Pinnock, and... I was there at the birth! A magical experience.

Dave is still at home with Jasmin and I – and secretly we love it! So great to have so much time together! He’s got some stuff in the pipeline and ideas on the future, and has sorted out us financially so we’ve no panic on in that department for the foreseeable future, but we’re being careful with our spends. I’ve gone back to work at Hatherley Manor Hotel one day a week, which is really good, I’m writing a new website for them and have full reign which is really exciting.

Jasmin has grown loads! She had a dress ready for Kath’s wedding and I tried it on her this week and it doesn’t fit her! So we had to take a trip to Next to get her a new one – age 11-12! Also we got her a nice summer outfit – hope get some summer r I’m taking it back lol! Got new swim suit for her too which is fuchsia pink and looks great on her.

We had a kind donation from Becky of Equilibrium beauty salon which paid for an awning to go over Jasmins decking outside her bedroom – it looks so great and is a wonderful shady area for her. Many, many thanks to Becky.

We are now looking into getting a comfy special armchair for Jasmin – they have one at the Acorns Hospice and Jasmin loves it, she looks so comfortable in it, it has a harness and the leg bit raises up which is great for Jazzy as she always like to have her feet up. We’re going to look into charity funding for this as they are about £1200.00!

Right, think that’s all for now – hope this finds you all well – please leave us messages in the guestbook, so lovely to hear that you’ve visited.

Love to all,
Ria, Dave and Jasmin xxx

Sunday, August 5, 2007 2:54 PM CDT

Hi,

Today has been an awful day! Spent 8 hours at the 'wonderful' (not) Gloucester Hospital as Jasmin had an unexplained swollen knee, thigh and calf - x-rays, bloods and lots of stupid doctors found no cause! Ahh just what we wanted to hear after 8 long boring hours!

Then to top it all Jasmins blood results were poor again - neutrofils lowers - but not to neutropenic level and red clotting cells, the platlets are down from 98 to 56! WHY!?!?!

I've put all the details on the MPS forums in a hope that my friends there - the real MPS experts, will know more!

Jasmin and I spent last week at Acorns Hospice due to the floods and water crisis in our county. Which was basically no running water! Back on now, but can't drink it only wash clothes and bodies in it! Been 2 weeks since the terrible flooding now, all clear now but so many people lost their homes, including my brother and his family. Dave has been stocking up twice a day from the 'drive in' water distribution centres! He's obssessed with it now, can't drive out without having to stop to get water - we've got SO much now in the shed!

That's all I've got to say right now - I'm too annoyed about our 8 hour wait at hospital to type anymore!Sorry.

Jasmin and I (Ria) were on TV last week! Clink on the link and watch please,http://www.itvlocal.com/central/news/?player=CEN_News_26&void=85658

Please leave us message. Much Love.

Ria, Dave and Princess Jasmin
XX

Wednesday, July 25, 2007 3:09 AM CDT

Thank you to everyone that has been checking up on us as we are in the middle of the country most horrific flooding for 60 years.

We are fine - our house is on high ground fortunately, we lost power for a few hours but luckily this was saved by the heroic efforts of the emergency services and the army who save the power plant from flooding.

We do not have running water - this may not be resumed for 7-14 days! On the streets there are water bowsers which we can collect water from which needs boiling before drinking. There is water on sale in the shops but this is on ration, as is the bottles being handed out by the army across the county.

My brother, Neil and his family lost their home to the floods 4 weeks ago, and this time with it being so bad the water rose even higher into their property destroying all of the work done to try to start it’s restoration. Neil, Kellie and Baby Edward are living in temporary accommodation in the centre of the city.

My sister Vikki, came just 2 mls from loosing her house to the floods - she can only get to her home boat right now. She, her husband and the children are staying with my parents until they have full access to their house.

All of the family are safe which is the main thing and have a roof over our heads.

The water problem has caused some chaos - children have vandalised some of the water bowsers! There has been some looting (robbing) of the empty flood ridden houses and there has been panic buying of essential items from the supermarkets. Some people have been very greedy with the water - many taking far too much from the bowsers leaving none for others.

This is the website for our local newspaper where if you flick back through the mass of updates you will see video footage and images from around our sodden county. www.thisisgloucestershire.co.uk


This is a disaster.

Jasmin is totally unware of the water problems thankfully - we are managing pretty well to survive without running water. Re-using washing up / personal washing water in the toilet cistern for flushing. Washing clothes is obviously a no-go area - fortunately a dear friend nearby is serviced with a stream water supply so has offered to wash Jasmins clothes for us - this is a blessing as Jasmin has had diahorrea badly and her trousers have suffered - no hand washing can get these clean.

Many thanks for your messages - keep them coming - good to hear from you all

Sunday, July 15, 2007 2:47 PM CDT

Hi Everyone!

What is it with the weather in this country right now???? I’ve never encountered so much rain before! Dave says it’s good for the garden! Hummm, but not so good for me and Jazzy catching some sun rays though!!

All is going well with us - Jasmins last blood count showed that her Neutropenia has now gone - Yippee!!! Her platelets are also on the way up which is brilliant too. So this confirms that it was the Septrin drug - cannot believe a drug that was supposed to aide Jazzy has caused her such a bad time!?!?!? Drugs - wish everything could be mended homoeopathically .

In the past week Jasmin has been not controlling her swallowing of saliva too well, so we’ve had some crackles and wheezes to manage - she’s coughing well on her own which is marvellous though.

Jasmin has been so so so incredibly happy in the last week - not sure what brought on these amazing smiles, giggles and vocal noises, but they're here and we love them!!

We spent last week mainly at Acorns hospice, Worcester with the fantastic team there. Dave joined us for one night as he was busy having to sign on the job queue and paint the dining room! Finally at the end of last week he agreed a settlement with his old firm for a severance package which we were happy with. Not sure of his complete plans for the future at this time, he may retrain or if the right job comes up go for that. Whatever he decides I’m behind him 100%.

Next week we return to Acorns!! I know, last week was a cancellation so they offered us some time there and this week we have scheduled in. Dave will again join us for the final night, Wednesday. He’s got stuff to do at home plus there’s the dogs to consider.

I spent the majority of my time last week at Acorns making cards - and I sold loads to the nurses and staff whilst I was there too - bonus! I’ve got a few orders in and the cards I have made sell very quickly which is keeping me very busy. So if you have anything you want made please do let me know - £1.50 a card, 6x4 size with envelope, made with lots of love and attention by me!

My brother now is living with his family in a flat temporarily whilst they sort out his house from the major flood damage that was done. Blimey you wouldn’t believe how bad it was.

Dave and I are proud to announce that we are to become an Auntie and Uncle again! Yes, Kathryn (Dave’s sister) and her fiancé Jimmy are expecting their first at the end of the year. Best wishes to them both. It’s their wedding next month too so lots going on in the Heap/Carruthers household right now!

Short but sweet my posting,Love to you all, keep leaving messages please so we know you’ve been around!

Ria XX

Tuesday, July 3, 2007 1:14 AM CDT

Hi, well I’ve so much to put in this update; I don’t know where to start!

***Jasmin looks incredibly well and is lively and interacting superbly however she recently had some horrid red mark, blistering and bruising appear on her outer thigh – a Dermatologist ruled out any skin complaint but her blood tests were abnormally low. This was a complete bolt from the blue as she looks so great??!!

The blood results showed Bone Marrow Suppression which basically mean that her bone marrow is not producing enough white blood cells for immunity, defence and clotting. Her platelets (the white blotting cell) are currently 73 but should be between 150-4000, so she is at risk of severe bruising and bleeding. Her neutrofils (the immunity and defence white cells) are .7 but should be over 1. With these neutrofils being so low she is classed as being neutropenic. This means her vital defences against infection and to fight infection are incredibly poor. The reason for the bone marrow suppression is thought to be caused by her long term anti-biotic, Septrin poisoning her bone marrow – this is a rare side effect. We’ve stopped this drug now and replaced it. It’ll take more blood tests to confirm if this is caused by the Septrin and hopefully nothing worse. It can take around 6 weeks for the cells reproduce and level out – so we’re in for the long haul on this one.

We have been told to monitor her with vigilance and if she suffers a prolonged raised temperature or general level of unwellness she would need to be admitted to hospital with urgency. When you are neutropenic you can go from having a slight temperature to deaths door incredibly rapidly.
Jasmin has incurred a couple of high temperatures but ibufren has brought it down straight away – but this may well be due to the fact that she has a nasty tonsillitis – again!

Generally as a whole, she seems well but last night she was tossing and turning noticeably uncomfortable for a long while, no temperature, but she wasn’t settled, so I gave her a painkiller and she drifted off to sleep. We just have to remain on our toes here.

***Dave has just had bad news with his job; his contract is not being continued with the takeover of his leisure club which is a HUGE blow. He is so strong, brave and positive handling this, I’m so very proud of him.

***We had a peaceful week away in Devon with Dave’s parents, sadly it was very wet but it was nice to have some quality time together.

***During that week there was a vast amount flooding across England due to the torrential and prolonged rain – tragically my brother Neil, his wife Kellie and our gorgeous Nephew Teddy’s home was flooded badly, they were waist deep in brook water and sewage. They are currently in temporary accommodation whilst trying to get their home sorted but it’s going to take months. The whole house needs electrical re-wiring, re-plastering, everything re-placing– the list goes on! Neil also lost his car to the water which he’d only bought 3 days earlier!

***Our lovely young nieces Mia and Leila, enjoyed their first trip overseas last month with my sister, her husband and my parents– Mia, bless her, thought she was flying to Spain in the spotty plane with Auntie Mable and Pippin the dog from the TV show ‘Come Outside!’ and she thought she should travel in her car seat as she’d be more’comfy!’ – 3 going on 33 that one! Leila is finally standing up – she is an avid bum shuffler and can get from A to B on her backside in record time. My sister will be delighted when Leila finally makes the transition to her feet as she will finally get to keep the backside in Leila’s trousers!!

*** Last weekend we spent in Northampton at the MPS Conference. It was so lovely to see all of the families that we know and to meet many new ones. The atmosphere was relaxed and it was great for everyone to feel ‘normal’ as no-one batted an eyelid at the kids shouting, screaming and generally running wild. I was really pleased to get to meet the Polish Professor who discovered and did the clinical trials on genistein, I learnt that he was also an MPS Dad. I’ve always said us MPS parents know best!!
The lectures were excellent, informative and some incredibly emotional as parents delivered their experiences to us. They were so brave. We were pleased that Juliana, Jasmins carer could join and attend the conference lectures on the Saturday and meet many families and gain a further insight into MPS.

Sadly it continued to rain so it put a bit of a dampener (excuse the pun!) on the funfair that was laid on in the grounds for us to enjoy. It was a huge conference, the biggest I’ve attended. Our dinner dance was hosted in a marquee to accommodate the masses. The MPS society did a good job in their organisation and provision for the children with trips and child care although the crèche facility did not prove totally suitable for the older children that were unable to attend the trips.

***We currently have a new nurse allocated to us for 4 hours a week, Linda. Mel has been in providing care for us for the past 4 years but sadly has had to temporarily stop due to her sister having cancer and her needing to dedicate time to aide her and her family through this terrible time. Linda is a wonderful nurse, she is a nurse during the day at a local special school and is currently nominated for an award in Gloucestershire for her achievements – Go Linda! We’ve voted for you!

***Coming up in August we have Daves sister, Kath’s wedding to Jimmy where Dave is a witness and I’ve to do a reading! Bit scared of that!! Also, Dave and I will be going to the West end in London to see Grease the musical, then at the start of September we have a week away at the coast. Fingers firmly crossed that Jasmins health enables us to do all of these things.

***I cannot end without mentioning our wonderful parents – without them I don’t know where we’d be or how we would cope. My poor parents came back from their restful week in the sun to face and deal with all of these blows that have hit our family – they have spent so much time helping out and re-house Neil and his family and have had to take on their boisterous dog aptly named Bruiser, and also be there to aide our needs with Jasmin -they’ll be needing another holiday soon! Dave’s parents have just house sat for us, Mike sorted out Daves car which required 4 new tyres, and with my Dad spent a day repaired our leaking bathroom and poor Jean spent an entire day at the laundrette doing our laundry as our washing machine packed in. We salute you all, you are the best!

***Right well I think I’ve covered everything – All-in-all it has been, and still is, a very emotional, trying time for us as a family, but I know that we will get through this. Dave and I would like to thank you all for your continued support and we are very grateful to be in your thoughts and prayers.

Ria xx

Monday, June 4, 2007 5:56 AM CDT

Hi – Everything with Jasmin is wonderful!

Her growing strength continues to amaze us all. Just this morning she had sat herself up in bed and was giggling and smiling, she was moving around so much I struggled to keep her feeding line in! A small price to pay for such fantastic activity from our precious miracle child! Trying to get her medication down the tube is a task now as Jasmin ‘helps’ every time! She grabs the syringes and insists on holding my hand as I try to administer her medications/feeds! This is understandably a very messy process – but I’m happy to be mopping up the mess all day long just to have Jasmin so active.

At the weekend we took Jasmin to the local Agricultural college open day where she loved watching the dog and horse exhibitions, she viewed from her wheelchair then we sat her on a blanket on the grass and she was really lively and happy watching the animals. It was a fantastic trip out.
Jasmins bowels have slowed right down?? Thursday morning was the first time in months that she had not woken with chronic diahorrea?? She didn’t go until Saturday but the consistency was the best it’d been for months. AND...I hadn’t even started her on the new soya feed?!?!? Well... we’re, as I said, now on the soya feed which amazingly has more vitamins and minerals in than the dairy based feed?!?! However it doesn’t have any fibre in as they don’t make a soya feed with fibre?? Since Saturday she hasn’t poo’d again?? I’ll wait until tomorrow before adding any Movicol into her system. I hate it when that happens as it’s so hard to judge whether they changes are successful.

Today I reduced the Clobazam (epilepsy drug) down by another ml, to 5ml – we are weaning this down by just a ml per month – so in 5 months it should be out finally! So now I’m monitoring if there are any changes with Jasmin due to the reduction in medication and change to soya feed. I don’t like doing more than one alternation in one go really as it’s hard to work out what is because of what, but the clobazam has been being weaned for 2 months now so this is ongoing, and the soya I felt was right to introduce to aide her bowels. Enough poo talk for now hey?!?!

Jasmin sits up unaided all of the time now! She goes from lying flat to sitting up by herself with complete ease – stomach muscles of a body builder!! She will stay sitting up playing with her toys for hours! She is soooo much stronger – this is very evident as she will push me out of the way, and grab at me when she wants me to move or wants my attention – a bit of the ‘old’ Jazzy shining through there! Her personality is really showing itself again so much she is a very determined girl; she will roll around and stretch to get to any toys/items that she wants. She is not at all drowsy like she was for weeks after coming home from hospital, she is bright eyed and incredibly alert. Really on the ball. I think this is a combination of her clobazam having been reduced gradually over the past couple of months (it has a sedative effect) and her own determination and strength. Occasionally she’ll have a ‘tired day’ when she’ll nap for a hour or so during the day or just want to ‘chill’ out lying down peacefully – but most of the time she’s ‘up and at ‘em!’

Jasmin will sit in the armchair or on the settee with her feet firmly on the floor, sitting so straight; she has also come up to standing with my support a few times!! She giggles when she’s stood up as she loves it.

This weekend we are going to Acorns hospice again – Friday & Saturday nights, Dave will be joining us for the whole time this visit as it’s the weekend and he’s not working. I’m really looking forward to a lie in! Mind you I don’t get up till between 6-7 a.m. each day now as Jasmin sleeps so brilliantly! (Hate to tempt fate here!!) – So I get to sleep ALL night, EVERY night! This is totally amazing after so many, many years of not sleeping at all. When I look back and think of those nights where I struggled to get a mere 2 hours sleep in I wonder how on earth I coped???

Update on our MPS friends: I’m delighted to report that dear Ciara Bennett is now home from hospital after her terrible chest infection.

My lovely friend Laura and her wonderful son Will (MPS11, Hunters) came to visit us last Wednesday; it was wonderful to see them. Laura was a brilliant support and sanity to us when Jasmin was in Birmingham ICU, which is near to Laura’s home, she & her husband Dave took us out and brought lots of goodies. Will is such a darling; he has the most infectious laugh! He is very active and into things only still when he’s cuddling him Mummy or watching his DVD player. He’s hilarious with his DVD player as he rewinds it over and over to his favourite bit! Laura raised lots of money on the 15th May for MPS with the Walk for Will that she arranged – well done Laura. Will is having surgery on the 12th June to have his port fitted ready for ERT which starts on the 13th (the port gives IV access for the drugs which is easier than continually trying find a vein) – keep Will in your prayers at this time as any anaesthetic is a worry with MPS children. ERT is now in the UK! A revolution for our Hunters children to help them. It’s a weekly treatment done in the hospital, a very long day for both child and parent every single week of the year. Good luck Will!

Scotty (MPS11, Hunters) successfully had his port fitted on Thursday! Yippee! Scotty has been having ERT for a long while now with access through his veins; this should make the process much more comfortable for him in the future, and allot less stress for his smashing Mommy Kim who incidentally travels absolutely miles every Thursday for his ERT. (Thanks to Kim for the collages of the photos page, you clever thing you!) XX

Lots of families worldwide did their bit for MPS Awareness day, with interviews with their local newspapers and some TV news reports.

It is the bi-annual MPS conference at the end of June which we will be attending with Jasmin. Our other UK MPS friends will be going too so it’ll be lovely to all get together as a group. We’ve decided not to allow Jasmin to attend the daily trips out but for her to stay in the hotel crèche with a carer – think this is best as I’m not confident about her being away from me for 8 hours for two days. With Jasmin being within the hotel we will be able to see her during the breaks, and also she will be able to go outside and on walks too. Juliana (Jasmins wonderful carer) is coming for the conference on the Saturday.

Before we go to the conference, we are having a week away down in North Devon at Croyde a lovely small seaside resort with Dave’s parents, which we’re looking forward to very much. My parents and family are going to Minorca later this month, a trip that we’d arranged to take Jasmin on pre-ICU, but after that episode a holiday out of the UK is a terrifying thought, so Mums taking the rest of family instead, and has promised to bring some sunshine back for us!

Hope you are all keeping well – please sign the guest book, we love to read your messages XXX

Friday, May 25, 2007 9:46 AM CDT

Hi –

Jasmin continues to gain strength – on Sunday she rolled right over, starting on her back and ending on her back! She pulls herself to sitting position most of the time now, and has great interest in playing with her toys and is ‘turning’ her books again! Quite amazing!

Her consultant paediatrician came to see her yesterday and was nothing short of amazed at how great Jasmin looks and how strong she is. When we saw physio this week she too was shocked at how good Jasmins legs and ankles were. All good stuff! A far cry from 10 weeks ago hey?!

We are going to change Jasmins feed to a soya based feed rather than the dairy one that she currently has. Jasmin was on a soya diet for 2 years prior to having her tube fitted, then they gave us this feed, and to be honest I really didn’t think about whether it was dairy or soya. That time was a difficulty transition in itself so the base of the feed was miles off my thoughts. Anyway, now with Jasmins diahorrea being so so bad, and it burning her skin until it’s raw and sometimes bleeding I addressed the feed content, and have spoken with the dietician who is going to change it over to soya for me. This dairy diet that Jasmin is on may also be the cause of her skin irritations – she is so vulnerable to sores and pressure marks.

We had an Orthotics appointment at Jasmins school this week – this was the first time she’d been back into school since picu in February – and what a huge welcome she received, it was wonderful. It took us 2 hours to get from one side of the school to the other as people stopped us every few steps to speak, hug and kiss Jasmin. Back to orthotics – well because of Jasmins tender skin she is having her splints lined in lambs wool (!!) and is also getting a pair of special boots again lined in lambs wool. This lining will help protect her sensitive skin and also give her warmth as from the knees down she is often freezing, along with her hands. I know put leg warmers on Jasmins lower legs to give extra warmth – she looks a real hip dude!

This month Dave and I both celebrated our birthday – which was incredibly special for us as we had our beautiful darling girl with us, something a couple of months ago was in doubt. Getting our cards with Daddy / Mummy on was such an emotional time for each of us.

I must tell you what Dave got me for my birthday cos it’s fab... a theatre trip to Londons Westend to see Grease the musical, staying overnight at a hotel nearby!!! We go in August, so exciting – but it’ll be the first time that we’ve left Jasmin overnight since she was so ill!! Fingers crossed she will be able to stay at Acorns hospice whilst we are away.

Please can I ask for continued prayers for little Ciara Bennett who remains in hospital with chest problems, she has pseudomas bacteria like Jasmin had.

Please let us know that you have visited by leaving us a note in the guest book,

Much love
Ria xx

Tuesday, May 15, 2007 12:27 AM CDT

Tuesday 15th May 2007 – International MPS Awareness Day

Well I’m delighted to inform you that Jasmin is doing absolutely brilliantly!

Jazzy’s really happy and getting very strong. She is now able to sit up on her own unaided for quite a long period of time; sometimes she’ll pull herself up to sitting from lying down! She is taking great interest in things and interacting really well. It is a pleasure to sit and read with her, this is the first time in her life I’ve been able to do this – the first time she’s ever stayed still long enough! It’s wonderful.

Now that Jasmin is much slower and now unable to walk our life has changed dramatically. There’s allot more planning of getting from A-B now that Jasmins off her feet, and lifting from one seat to another can be a very long winded process as I have to get the mobile hoist out if I’m in any other room than her bedroom. Sometimes I just lift her, but she’s heavy and my back is a bad from so much lifting and carrying. It’s a real tragedy that Jasmin became immobile so very rapidly following her chest problems and time in PICU (paediatric intensive care) in Jan & Feb. She has walked 10 steps since then, but then got another chest infection and since then say 3 weeks ago she’s off her feet again. Maybe, she’ll get there, I’m not giving up hope by a long way but I’m not getting my hopes up either as it’s a long way to fall when your expectations are high and not met!

Jasmin still has chronic diahorrea daily, maybe 4-6 times some days, which I treat with Imodium. Since the anti-biotic for her last chest infection finished it has been a little bit better. Jasmin had a weird rash come out on her nose and on her hands between her thumb and first finger, it was like she’d been burnt – I checked out the medication and thought she may have had a photosensitive reaction with one of her drugs – and we’d quite a sunny spell here in April (there’s a thing hey?!) – anyway it was still there when we went to Acorns hospice last week so they got they’re GP to see Jasmin and he didn’t think it was a sun reaction, he gave her a better antihistamine as she was on piriton but this made her very, very sleepy, and he gave her a cream called diprobase. Well, a week or so on it’s cleared on her nose but her hands are still quite red at times??????

Yeah our second visit to Acorns hospice, Worcester was brilliant; I was much more relaxed this time than the last time. Dave was able to stay with me on the Sunday night, he worked Monday so didn’t stay Monday night, it adds another 30 minutes to his already 40 minute journey. Jasmin enjoyed the hydro pool at Acorns where the physio, Ali took her for the first time; it was a wonderful thing to see Jasmin back in the water after so long. Our water babe back in the pool. I for some reason thought that once she was back in the water she’d just swim off (with floats of course) like she always has done, but she didn’t – this hit me quite hard, a sort of confirmation that her immobility was definite thing. That was a sad realisation for me.

There has been allot of sadness concerning the children recently – on our first visit to Acorns we met a gorgeous 2 year girl who had mouth cancer, sadly when we went this time she was in the ‘special bedroom’ having passed away 3 days prior. Last week was my friend Jayne’s sons Jake, 1st anniversary of his death - he passed at the age of just 10. He has a stone in the memorial stream at Acorns Hospice which I’ve visited each time I’ve been. Also, poor little Ciara Bennett has been very, very ill lately – please keep her in your thoughts and prayers, her Mummy Alicia is amazing looking after two children with Sanfilippo disease, their website is www.caringbridge.org/ca/bennettboys

We did have a very happy fun weekend this weekend just gone as it was Daves birthday – it was great being all together, lots of presents to open, our nieces visited, and my parents for Roast Dinner on Sunday, all really good.
Please see the new photo’s on our gallery at www.23hq.com/Ria - also on the photo page there will be some new images coming soon on the photo’s page -My sweet friend Kim W is going to load them in a collage format when she gets time, as I’m just awful at that sort of thing!

Well, here’s hoping and praying for good health to continue for Jasmin. Keep leaving us messages – lovely to hear from you always,

Ria xxxx

Monday, April 23, 2007 5:51 AM CDT

Hi,

Jasmin is getting so much better! YIPPEE!!!

Yes, over the course of the last week or so our little Princess has managed to get on top of her chest infection and gain quite allot of strength too!

Over the weekend her chest was crackling with upper airway secretions and the base of her lungs clear - which is totally brilliant news. I dropped the physio sessions down to just twice a day now and that is working well, and keeping the secretions under control. Jasmin is still taking the anti-biotic Cipro, she has another week to go on that - it's a 3 week course which is vital due to vunerability to pseudomonas infection. The sputum results did confirm that her current infection was again that dreaded pseudomonas but the colomysin and the cipro seem to have sorted it - fingers firmly crossed as still need to do another sputum test at the end of the treatment to clarify that it has gone.

Pseudomonas lives in her chest and is colonised in her throat and nose. It lays dormant, like a volcano, until there are increased secretions then it grows and comes into a full blown infection, it loves the dampness of the secretions in the chest and so it is vital that we try to keep Jasmins chest as secretion (crackle) free as possible so that the pseudomonas cannot feast and grow.

Jasmins diahorrea has been rife still though - Friday she had 7 bouts of it! Her little bottom was bleeding from the soreness caused by the rancid poo. We were given metanium cream for it, and after a few days it cleared it up beautifully. I'd not heard of it before but you can buy it in the chemist as its a babys nappy rash cream - it's brill, highly recommended to all you with children in nappies prone to a sore botty! I've upped the imodium dosage to 10ml a time now and can use up to 4 times a day - which I have had to. Last night at 2am Jasmin was wriggling about and I found that she'd had the runs and her bed was soaked in it, poor angel.

Jasmin never moans or crys about anything that she incurrs - a complete inspiration to the rest of us who complain at the slightest thing hey! Lesson to us all there! But...Jasmin did cry last week when her bottom was so dreadfully sore and raw - broke my heart to see her so upset.

We had a wonderful weekend - Daves parents Jean & Mike came to stay and Dave and Mike built Jasmin the most beautiful deck outside of her bedroom, complete with ramped access. Now, we can take Jasmin outdoors directly through her french doors, and if necessary can even get her bed out there too.

We had a BBQ Sunday and my parents and nieces joined us and Daves parents - it was lovely to all be together. It is brilliant that our parents get along so wonderfully together - this envy of many of my friends I know. We are fortunate that we can enjoy such special times with Jasmin as a familoy unit -everyone mucks in and we have lots of laughs.

Jasmin showed us that she was re-gaining some of her old strength back as she sat up unaided, lay back down then pulled herself up again, time and time again. She enjoyed her Nana and Nanny both reading to her over the weekend, and she was so alert, touching the pages of the book and turning them whilst making sounds like she was trying to speak! Amazing!!!! Jasmin loves sitting on the swinging chair in the garden, she had three feeds on it over the weekend whilst cuddled up next to Nana - if was comical when Jean stopped swinging the chair, Jasmin would protest with a noise and start swinging her own legs until Jean started the swinging again! Jasmins never lost her spirit.

We hope that this is the way forward now - one day at a time always, but it is nice to think that we are heading out of illness for the time being and hope that this will remain for a good long period.

The weather has been superb here most of April (bar today when it's raining, typical hey!), and Jasmin has spent a fair amount of it outdoors in the garden, she relaxs on her sun-lounger like a true proffessional bather! From this she is sporting a gorgeous bronzed face and looks the picture of health - can she get more beautiful???!!!

Thanks for all of your love, messages, prayers and support everyone.

Ria X

Monday, April 16, 2007 4:06 AM CDT

Hi there,

Been ages since I updated, sorry – been crazy busy and also my laptop broke so not been able to get online I’m afraid. Anyway I’m back now so here’s what’s been going on with Jasmin recently;

Jasmin at the moment sadly has a chest infection, she has been prescribed Ciproxin, a strong anti-biotic which treats the pseudomonas bacteria which is probably the infection that she has due to the fact that she’s colonised with it. She is on a whooping dose of this drug – 13.6ml twice a day! I worked out that currently Jasmin has 150ml of drugs a day! And that’s before we give her any Imodium for her bowels or paracetamol that she may need! Amazing how she copes with it all, such a truly amazing little girl.
I have been doing physio on Jasmins chest 3 times a day with suction, often more often depending on how crackly her chest is.

Last week I had to put her on oxygen overnight, the first time she has been back on it since leaving hospital 6 weeks ago. Jasmin didn’t stay on it after that as she was holding her own well in air, but it was a God sent having the oxygen at home and enabling me to help her straight away.

Dave and I chose to care for Jasmin, through her chest infection at home, and we were supported by Jasmins Consultant Paediatrician Dr Sara Motion, and Respiatory Specialist Jackie Mitten. We also had one of the hospitals physiotherapist, Sarah come to the house three days to treat Jasmin. Dr Motion wanted Jasmin to have the physio come twice a day to Jasmin, but it turned out that that’s not allowed! Apparently, a physio can only come into the community once a week! Jasmin was lucky apparently to have had Sarah come to the house 3 times and this was only because the hospital was quiet, and if Jasmin required physio more than once a week then she would be in hospital with access to physio! This I think is totally ludicrous as it costs the NHS £300 per night to accommodate a child and probably just £60 a day for two Physio sessions in the home???? Where’s the logic in that I ask you???!!!

On Friday Jasmin seemed to turn the corner with her infection, she was clearing her crackles and secretions herself with coughing (which she was not doing before), she has become very wheezy though (which probably the instigation of the coughing) so I’ve been using a ventalin inhaler with her. Jasmin has been very alert and smiley all weekend bless her, tired though but allot more active than she has been in a long time, she has been reaching out with her arms and hands for things, and when lay on the floor she’s been rolling over onto her side and back again.

The other week we had our first trip to Acorns Children’s Hospice, Worcester where I stayed with Jasmin for two nights. It was a wonderful experience. The nurses are just brilliant and the atmosphere is home from home. Jasmin enjoyed a Jacuzzi bath each day, walks round the beautiful gardens and loved lying on the water bed in the sensory room. I stayed in the apartment on-site which is equally lovely, quiet and relaxing with all the facilities needed for a restful stay.

We have our wheelchair assisted car now, a Fiat Doblo high roof which is a complete blessing as I can get out and about with Jasmin with total ease using the winch and ramp. Jasmin looks like a real Princess looking out of the windows from her wheelchair and she smiles the whole time she’s travelling.

We went to the MPS clinic too at Bristol Children’s Hospital – which was a nightmare, that hospital has NO parking and only 3 disabled spaces!!! It was awful trying to get parked and the clinic was running 40 minutes late and there was no sign of any one from the MPS Society which was bitterly disappointing, as usually it’s at Frenchay hospital, Bristol where the parking is great and it’s a private clinic with lots of MPS advocacy and a cup of tea! Hey ho! Another NHS blip it seems! Well we saw Dr Ed Wraith, MPS Specialist and Dr Phil Jardine, Neuro specialist – they were both delighted to see Jasmin looking so well after her terrible ordeal in PICU. They changed only slightly her drugs, and were happy to retain her as she is as she seemed to be doing so well. Sadly, her chest changed 8 days later and the infection came.

That’s about it to date – I’ll update again very soon.

Love Ria xx

Saturday, March 17, 2007 1:52 PM CDT

Friday - Hi Everyone,

We're home after 5 days in the local hospital. I'm so pleased but also feel exhausted and flat as a pancake from this week.

It has been another crap time there where no-one makes a bloody decision or sticks with it. I told them today that we were going home - there is NO WAY I'm spending the weekend there with them on skelton staffing and no answers til after the weekend!!

Bascially, long story short;

* Diahorrea still lots, been on half feeds and dioralite for days,

* Tests on poo said no bacterial virus.

* The tests for a viral infection haven't come back yet but they can't treat viral anyway just gotta let it run its course.

* Today Birmingham metabolic doctor said to REMOVE the Domperidone (anti-reflux drug) as it's a drug that makes stuff run through gut quicker!! (Erm ...why didn't my hospital remove this on Monday when we went in?????)

* I'm to give Jasmin full feeds again in hope that she retains some of the goodness as theres more goodness in that than in dioralite.

* I can use Imodium from Monday once they've seen if the domperidone removal is effective.

* If problems over the weekend then I can take her back in but as I know what they'd do if there was porblems and I was in there - there's nothing I cant do here at home.

Later afternoon/Early evening Jasmin had bad diahorrea twice poor thing. So I gave her 200ml of diaoralite instead of an evening feed.


Saturday

Jasmin slept great but woke this morning with terrible runs again and she wasn't weeing this morning so after a slow normal breakfast feed I gave her 400ml of dioralite slowly, then a another normal feed but slowly at 2.30pm - then she wee'd!!! Hooray!!!

No more runs to date (7pm!!).

Fingers x'd removing the domeridone will make a difference and the runs will stay away.

Only time will tell.

Jasmin has been really happy today, lots of smiles and giggles , we took her out in her wheelchair this afternoon for a lovely walk in the sunshine too which she enjoyed. Then my sister, nieces and Dad came to visit.

Tomorrow is Mothers Day - Happy Mothers Day to Mum and to Dave's Mum from all of us AND it's my wonderful Mum's birthday too - so a BIG Happy Birthday to you Mum.

Love to you all
Ria xxxx

Wednesday, March 14, 2007 8:27 AM CDT

Hi

Peadiatrian spoke to neuro in Bristol and Ed's team in Mancester yesterday and the overall oppinion was that these movements are primarily involuntary and Clobazam controls these unvolentary movements (excuse spelling - typing in haste as just back for an hour before back to hospital - out tomorrow hopefully). So... with reducing the Clobazam the movements have gone quite mad - reduced as Clobazam increases secretions so needed to reduce to protect her lungs - however need to slightly increase now to control the movements. If the movements were mild I'dnot treat but they are far too great and affect Jasmins life quality badly - yesterday they were so bad she kept wacking her head on the side of the bed, poor thing.

So the plan is to retain a baseline of 8mg of Clobazam, not use Keppra at all and retain the sodium valp at the dose that we had before.

Yesterday an x-ray was done of Jasmins tummy as she still has terrible runs (10 days now!) and her stomach is HUGE! I've had to move her PEG clasp down again this morning to accommodate the swelling. They said the xray was clear and it's just gas caused by the diahorrea. They stil haven't had the stool sample back from the lab yet to say if its a stomach bacterial infection!?!? But they 'think' it's probably a bug and when you get the runs then the tummy swells with gas?? So... she needs to 'break wind' lots to get rid of it! The physio actually came and showed me the movements required to get Jasmin to fart!

Jasmin is shattered today - slept all night and in and out of sleep today.

We are not in a dangerous place with her at the moment, as I'm sure that the new plan of medicine for the fits/movements is the right one, but she is suffering with her belly still.

Finger crossed all will be sorted and we can come home tomorrow - I want to be back home with my babay for Mothers Day this Sunday!

Much love XXXX

Tuesday, March 13, 2007 7:41 AM CDT

Thank you guys for your messages, prayers and thoughts.

I THINK I'M GOING MAD!!!!!!!!!!!!!!!

I can't believe we're back in hospital!!! Admitted yesterday due to uncontrolled seizure activity.

I've just popped back home again to shower, Jasmin has Juliana our wonderful carer with her for an hour or so, enabling me to get a break.

Jasmins seizure activity has been frequent since they started weaning down her clobazam, plus she's had the runs badly for a week plus a tonsilitus.

The tonsilitus is still there so the anti-biotic hasn't worked - must be viral - so they are using a deflam spray to ease her painful throat. Jasmin is on dirolite (spelling?) via her PEG not feed to keep her runs at bay and keep her hydrated.

The seizure acivity... well... everyone is tyring to work together on a plan for Jasmins epilepsy care - it's very confusing as she is jerking most of the time, has many involentary movements but the EEG was pretty normal?????!!!!! Yesterday they gave her 3 different emergency drugs for fit which should have knocked her out but didn't - the movements got much worse!?!? So, they are looking at this 'clinically' as they can't leave Jasmin jerky and moving so frantically.

The Birmingham metabolic team are thinking that the many of the movements are possibly not eplilepsy but they are unsure as Sanfilippo EEG are often inaccurate plus they need to have her controlled so they need to use eplilepsy drugs to do so.

SEE WHY I'M GOING MAD?!?!?!?!?!?!

ARGH!!!!!!!!!!!!!!

Ria XXX

Friday, March 9, 2007 7:24 AM CST

You are not going to believe this but Princess Jasmin has tonisilitus!!!

Took her to the doctors surgery this afternoon, as she's had increased drooling and her chest got abit crackly, I've had to suction her for the last two days, which I haven't hardly done since she's been home from hospital, she was also sort of chewing alot (but obviously chewing nothing as she's nil by mouth) Plus she's had diahorrea bad for three days, and her jerky seizure activity is rife as they wean her around with medication ... anyway the doctor said yes she had a sore throat which is what I told I thought was wrong with her(!) then he said he wanted her seen at the childrens unit at the hospital!

So I took her and they confirmed a tonsilitus and commented on her constant jerkiness - they gave her anti-biotics (amoxyicillin) for the tonsils and said that as we were obviously very experienced caring for Jasmin that we could take her home (she said normally with a child that jerky with obvious seizure activity they'd keep her in!) Hey, they had no chance of us stopping I can tell you after the last 2 visits!!!

One of her two epilepsy medications has been reduced but they need add in another - the Metabolic doctors at Birmingham mentioned Keppra

My theory on how Jasmin got this infection is;

As they've weaned her off one of the epiliepsy meds and not added in another yet she has increased activity - with seizure activity so reflexes are hindered ie bowels and swallowing and I think that savila (which is full of bugs) has pooled in her throat as she hasn't been up to swallowing it and caused the infection. What a nightmare roundabout!

I've spoken to the Metabolic Doctor in Birmingham who cared for her when she was in ICU, she had increased her Sodium Valporate to the max for her weight so she's on 21ml's of it twice at day now!

This afternoon Jasmin has had chronic diahorrea - it was pure water pouring from her little body - she is now asleep, looks very pale and is obviously shattered. My poor baby.

On a plus - I need a plus right now! I've had 19 orders for Mothering Sunday Cards! How sweet are all of my friends and they haven't even seen my designs, obviously they trust me, bless them all.

Will keep you all up to date
Much love
Ria
XXX

Monday, March 5, 2007 6:40 AM CST

Hi Everyone - LIFE IS GREAT!!!

Jasmin walked 10 steps yesterday!!!!!!!!!!!!!!!!!!

She kept trying to stand up so I held her and let her stand,she wobbled for a while then very slowy moved her feet and slowly walked 10 steps!!!!!!!!!!!!!!!!!!!!!!!!!!! I was sooooooooooooooooooo delighted that after so long she remembered to move her feet and had the strength to manage it. Amazing miracle child!

Jasmin is doing so amazingly well - we still pray hard for her, as you all do and embrace every single day we have the pleasure of her company. Jasmins chest is still clear!!!!! She's amazed all of the professionals - Go Jasmin!!

I'm going to give up my one-day-a-week job in marketing for a hotel - been there nearly 14 years and they still don't pay compasionate leave?!! But anyway, I just can't do it due to my commitment to Jasmins needs and primarily my wanting to be with my baby. Plus, I've changed as a person - my vocation is not making money for the 'fat cats' - here's my plan ....

I've decided to make hand-made greeting cards - I'm quite artist and pretty good with words, so I decided that as I'm not going to go back to work I'm going to be creative! I'm going to use a lot of pressed flowers and leaves from my gardens, involve nature and also Angels (I'm very spiritual) and basically make my designs and wording about life appreciation. The aim is that I make my creations ready for the 15th May for MPS Awareness Day sell them to friends and family (and forum members LOL!) giving 50f the proceeds to the MPS society, retaining the other 50or more card, equipment etc and a little pocket money for myself! From there, if they are well received I plan to continue to make themand sell them locally and Mum even mentioned Ebay and doing wedding invitations!?! What d'you think??

Dave's gone back to work today after 6 weeks, he's sad not to be home with us, but rang this morning and said all is going real well, and he had a lovely welcome back reception from his staff.

So all is GREAT here - Thank you all for your continued support, love and messages - so appreciated XXXXX

Wednesday, February 21, 2007 10:22 AM CST

GOOD MORNING EVERYONE - and what a good, no what a ‘great’ morning it is. Every morning, every day is just perfect now that we have our Princess home.

Jasmin graces us with lots of beautiful smiles each day, especially of a morning, she looks so pleased to see us, but she’ll ever know how delighted we are to see her!

Jazz’s chest has remained totally clear, wheeze and crackle free since Friday - Yippee! I still do physio on it daily regardless so to keep anything lingering at bay. Jazz loves the hand massage that I do on her, yesterday she fell to sleep as I did it, so she must find it relaxing. She has started using her hands abit now, as she wasn’t moving them, but now she occasionally will hold things or pick something up.

Yesterday Jasmins height adjustable bath was fitted - YIPEE-YI-YI-YAY!! Huge thanks goes out to Jean my Mum-in-law for battling for this over the last few weeks for us. The hard-standing is now in place at the front of the house and the ramp into the porch done, just the hoist and front door adaptations to go now.

Again I have read through the amazing messages in Jasmins guest book that we received over the last month or so and I glowed and cried at the kindness, love and thought that each massage gave. It feels wonderful to know we are thought of so highly and loved so dearly, Those messages were such a great boast and comfort to us.

I hope that you enjoyed the slide show of photos of Jasmin - yes they are very recent just Friday - she looks amazing doesn’t she considering all she’s been through! Big thanks to Kim for putting the slideshow together for me and for making Jasmins website so sparkly XXX

The palliative care team have visited to discuss a home care plan of support and respite in the home using a team of nurses, hopefully we will be fortunate with the hours that we receive from them, as it is much needed now that Jasmin won’t be returning to school.

We have had quite a few visitors but have had to let everyone know that if they have a cold or any bugs not to come as we have been advised to keep Jasmin out of ‘germs way’, which makes perfect sense. Hopefully Dave and I will stay well also!

I’ve got a good routine now in place for Jasmin
* The morning starts with a feed and a concoction of 6 medicines, followed by vitamins and genistein (slow wean back in) a Nystatin mouth care, bed bath, teeth cleaning with suction after each little brush so Jasmin doesn’t swallow any.
* An hour after her feed I do physio on her chest, feet and hands - using suction as required.
* Colomysin is then given via a compressor &a face mask which takes about 15 minutes.
* Lunchtime is a feed followed by another medication & a Nystatin mouth care
* Teatime feed & Nystatin mouth care
* Evening medication is another array of 5 syringes of medication followed by a supper feed, teeth cleaning with suction after each little brush again, Nystatin mouth care then sleep medication then… BED!
* In between all of this all of the equipment needs cleaning &, drying, medication and feed need measuring, and I do physio whenever I hear a wheeze or crackle on Jasmins chest and suction if she coughs.

Busy life - but I’m totally confident with the whole thing now and am happy to with nasal and mouth suction which I’m getting so much better at now, I go real deep down onto her lung and can whip out the secretions pretty quickly now!!!

All is good - I treasure every day that I have with my wonderful daughter and perfect husband.

Love Ria XX

Friday, February 16, 2007 2:33 PM CST

We're home!

After a long month between 2 hospitals on an emotional rollercoaster from hell, I am delighted to say we brought our beautiful girl home today. This is a very special day as over the last 3 weeks we thought we may never bring our darling girl home again.

Jasmin is looking superb considering the terrible illness that she has suffered. She beat all of the odds and survived, bringing sunshine to ours lives with her stamina and fight. We are so very proud of her.

We departed from hospital quick smart this morning desperate to get back home. It's take ages to sort through the masses of medication, housing it and creating a new agenda for its administration. Drawing up Jasmins medication this evening has taken ages.

Along with medication to find a home for, there are boxes of syringes, suction catheters, gloves and a compressor machine for the colomysine drug complete with masks and piping.

This afternoon Jasmin sat on the sofa with her feet up playing her her fibre optic lights and smiling - such a lovely sight. My brother Neil, Kellie and the new baby Ted came to visit today - I lay Ted across Jasmins lap and her lay there sleeping and Jasmin didn't move at all she seemed quite happy to have her sweet cousin snuggled with her.

Jasmin was sounding quite chesty - after my intense physio lessons I was confident in diagnosing, with my stethascope, that it was upper airway seretions and I treated her promptly removing all of the sputum with nasal suction - afterwards she was as clear as a bell - how thrilled was I!?!? The respitory specialist Jackie came today and I showed her the sputum that I sucked out (I saved it for her to see as it seemed quite thick and was a creamy colour)Jackie said that it was ok, but if it turned a greeny colour then I should contact the hospital asap as it would be a sign on infection. Also, to keep an eye on the volume of secretions that were produced.

The oxygen came today so we were then trained in the use of the concentrator machine, backup cylinders and portable cylinders. More to accommodate too.

Jasmins two smallest fingers are quite bent, clawed I noticed - another area to perform regular physio on - this is simplyn stretching out her fingers using a cream or oil.
Jasmins now wearing her feet splints for periods during the day now that she has had her canulas removed from her feet. I need to ensure that I do daily physio on these too as they're pretty crooked from her being immobile for so long and unable to wear her splints.

The next week is full of appointments with professionals at our house creating care plans, checking and organising things for Jasmin - there is so much to get our heads around at the moment.

I'm so glad that Dave is able to be here with us - being together is so precious and needed, after our terrible nightmare journey. It's also important to have him here as he is a great help sorting everything out,and we have lots to learn from the professionals coming to see us and help us. This is another learning curve.

We have again evolved as people - we did this after diagnosis initially and have grown in the five years since that, but now we have turned another corner, this episode has brought even closer as a couple, family and unit, we appreciate each other even more than we ever have done.

I'll update with some photo's very soon
Love
Ria XX

Thursday, February 15, 2007 7:35 AM CST

Thursday 15th February

HI!
I'm in the school room at Gloucester Hospital, the teacher has kindly allowed me to use the computer so that I can read Jasmins guest book and update her webpage.

We arrived back here on Monday evening by ambulance from Birmingham. It was lovely to be back on home turf.

Jasmin is still coping excellently in air and has now not needed oxygen for ONE WEEK!!! She looks super; bright eyes and pretty smiles. She had an x-ray of her chest and all is clear which is fantastic news.

Jazzy has been very 'jerky' for the last couple of days, signs of seizure activity which Dave and I thought maybe because of the alterations in her epilepsy medication BUT it came to light today that the nurses here had only been giving her one dose of Clobazam (anti-convulsate) per day instead of two! For goodness sake!

Whilst we are here in hospital social services and the county council have work going on at our house with regard to a hard-standing outside with ramped access into the house, plus power ready for the hoist and hi-lo bath in Jasmins room/bathroom. My super Mother-in-Law Jean has spend many hours chasing up these things as they were promised 12 months ago?!?!?!? It's been a nightmare for her but she's got the ball rolling and now the hoist and bath ar finally ordered(!?!) and should be installed in 4-6 weeks - better late than never!

The respitatory specialist here is super and has spent the morning with us discussing and teaching us about oxygen in the home, which will be installed in a few days. We will also received CPR training (Dave knows this but I'm rusty). Jasmins medication list is a monster! We are going to yet again re-organise the cupboards to accommodate the medicine. The metabolic dietician at Birmingham changed Jasmins feed from pediasure to Tentrini multi-fibre whilst we were there, saying that this is far more suitable for Jasmins age/weight so this has now been arranged for home delivery to us. Taling about weight Jasmin lost quite abit whilst she's been unwell but hopefully now that she's back on full feeds she'll gain some weight.

Tomorrow we are planning to go home!! A whole month since first admitted to hospital - and we can't wait! There's still things to sort out at home with regard to help/care for Jasmin whilst she's at home - we don't think she'll return to school this year or ever?? We really need to keep her infection free and being around other children with colds/bugs could be very dangerous for her. so with keeping Jasmin at home its essential to get some nursing care to help us.

We are visiting a local hospice 'Acorns' in Worcester next Thursday for a look around, with a view to us being able to stay there with Jasmin for a break. Thye have a flat on site that Dave and I can stay in whilst Jasmin is cared for by nurses, and we can spend as much or a little time with her as we choose. It will be good for us to be able to use their facilities with Jasmin like the sensory room and hydrotherapy pool.

So, it's just 'one more sleep' until home!!! I'll update then,
Much love to you all
Ria XXXX

Saturday, February 10, 2007 4:23 AM CST

Saturday 10th February 2007

Hello Everyone,

Sorry not updated for such a long, long time but not been able to get online for nearly a week due to connection problems.

Jasmins week has been so very progressive, all in the right direction. She came off oxygen gradually which was aided by a steroid every other day, and for the last three days has been in just air, no oxygen bar a short stint the other evening. It’s so wonderful to see her beautiful face without an oxygen mask on it. She is doing so well, we’ve had lots of smiles and hand holding. Jasmin is still weak as expected from her ordeal, but seems happy lying in her bed watching TV and also the heavy snow that we’ve had in Birmingham through the window. Yesterday the snow was so bad that it took Daves parents 5 hours to get back to Gloucester which is usually an hour trip!

Next week, the initial plan is for us to be moved back to Gloucester Hospital for a while then hopefully back home.

When home and forever, Jasmin will need to have Colomysn drug twice daily, an antibiotic daily and steroids every other day to protect her lungs, keep the pseudomonas and bugs at bay and to keep her airways open to keep her off oxygen.

We pray that she will stay well, as we know that another infection could land us back to square one. The hope is that Jasmin stays well for 6 months so that she can regain some strength, if not and an infection comes then this would be very bad news.

Acorns, the hospice in Worcester 30 minutes from us have given Jasmin a place for respite stays, the lady came to the hospital to meet with us. We are delighted to have this facility as if Dave and I need a break we can be guaranteed nursing care for Jasmin which is essential with all of her medical needs.

A million thank yous to you all for your messages, kindness and prayers during this horrid, scary journey.

ON MONDAY 5TH FEBRUARY WE WERE BLESSED WITH A NEW NEPHEW, OUR FIRST, EDWARD JOSHUA HARRIS BOND - A BEAUTIFUL SON TO MY BROTHER NEIL AND SISTER-IN-LAW KELLIE - 'TEDDY' WEIGHED A WHOOPING 9LB 51/2ONZES! OUCH! LUCKILY BY C-SECTION!!!
THANK YOU NE & KEL FOR MAKING US PROUD AUNT AND UNCLE xx

Sunday, February 4, 2007 2:28 PM CST

Sunday 4th January

Jasmin had a good night, her resps were high and sats low so they got the physio in at 4am to work on her and the sorted out her levels. Today she remained on her oxygen mask all day as she was incredibly tired out. I gave her a bed bath and put her hair onto plaits, she looked beautiful.

We met with the metabolic consultant again today, he gave us a full honest picture of everything. The respitory physician had been to see Jasmin and reported back to him that she thought that Jasmin definatly had chronic lung damage which was evident by the presance of the pseudomonas bacteria and Jasmins inability to recover. This is irreversable damage that will shorten Jasmins already short life. Heart-breaking news. The consultant said that enevitably Jasmins death will be caused by the lung damage and infection.

The plan right now is to hope that Jasmin improves her breathing so that she can eventually come home with oxygen to aid her if she struggles or gets another infection. They plan for her to have daily anti-biotics to control (cannot eliminate) the pseudomonas and another anti-biotic 3 times a week to cover her against other bugs. The hope is that Jasmin stays infection free for 6 months where in that time the lungs cannot ever be repaired but it would give her time to become stronger to deal with other infections. If she does get another infection within that time we would most likely be back to where we have been in the last three weeks fighting for her life, then again discussing her life quality if this is going to recurr so quickly.

However if Jasmin deteriorates from this point they will put her onto intubation ventilator in ICU and give aggressive physio sucking out the secretions, While under general anethetic they would do a CT scan of her lungs and can see the lung damage - this will be most likely her last chance to recover and tough descsions on our part regarding Jasmins life quality will be required.

We know that we are living on borrowed time right now, not knowing how long we have with our precious child. Our hearts are totally shattered, but we are desperately trying to be strong and praying hard that Jasmin will recover from this episode so that at leaast we can take her home and have some quality time with her in hope that infection stays away so we can keep her for longer.

Tomorrow, our nephew arrives, my brothers baby by c-section (as baby is breach) a very happy day after a long wait for him and his wife following two miscarriages - we are full of love already for this special little baby. Our love and best wishes go to Neil and Kellie tommorow.

Thank you to you all for your wonderful messages of support, love and prayers - we are so grateful and appreciate it hugely.

Sunday, February 4, 2007 2:22 AM CST

Sorry that I have not updated the website for a couple of days. It’s been a very tough week.
Jasmin was not progressing at all, she was on Bi-PAP all of the time and not absorbing any food. The Metabolic Doctor stopped her having chloral hydrate mid-week as in two Sanfillipo children it had caused breathing difficulties, prolonged sleepiness and affected the gut with inability to absorb food.

On Friday we met again with the Metabolic Doctor who was honest with us that he feared that Jasmin was not getting any better and crucial action maybe required to help her - he said that they’d re-intubated her then give her a huge blast of Physio and hope that they could clear her chest and also give her a CT scan to see what the lungs look like - this was all they could do for Jasmin. There are fears that she may have lung damage as she has the pseudomos bug in there which only attacks unfit lungs. If she recovers from this terrible episode then it could return if there is lung damage, the hope is that Jasmin could stay well for 6 months following this, if she keeps getting ill and into the same situation monthly then this would need to be addressed for her own comfort and life quality.

Jasmin that afternoon came off the ventilator and onto an oxygen mask - they were going to try to wean Jasmin from ventilation for a couple of hours at a time and see how she coped, before the above actions were considered. Jasmin kept her oxygen mask on for an hour whilst we were with her, she was wakeful smiling, and bright eyed and coping ok on the mask.

Early Saturday morning when I rang ICU they informed me that Jasmin had stayed on just oxygen mask ALL NIGHT! And, currently she had NO MASK at all!!! Oh My God what a turnaround, this was quite unbelievable. Dave and I were in shock!

We went to see her an hour later and she still remained maskless, she looked tired though but was not struggling with her breathing. We were moved back on to high dependency ward and Jasmin totalled 6 hours on her own breathing without oxygen, then her sats dipped so she went back onto the oxygen mask, just a low level to help her and she’s had that on since.

This morning (Sunday) I’ve rang to check on her and they said she had had a good night although her sats dropped in the night and they called the Physio into clear her chest.

Things look better, but Dave and I are still very afraid and taking it slowly as we’ve bee in this position before. The fears lay with going backwards again, this may prove that Jasmin may never be able to recover from this illness as the Doctor has told us.

Still hoping and praying for small steps in the right direction each day.

Thursday, February 1, 2007 2:57 AM CST

Wednesday 31st Januaury

Jasmin was tried on the oxygen mask again today but her oxygen saturations dropped so she was put back onto C-PAP ventilator straight away.

Jasmin is not absorbing any feed. She is only being fed 5ml per hour plus some medicines via her feeding tube but they aspirate her stomach every few hours and its all still there. The dietician has given her a new forumla to try which is easier to digest.

She was on Bi-PAP venitlator overnight.
Before we left her she woke, bright eyes and smiles so so beautiful.

I rang ICU early this morning (Thu 1st Feb) and she had a very unsettled nght. They again tried her on oxygen mask and C-PAP but both didn't work as sats dropped so she is on Bi-PAP again.

During the night she started to absorb some feed but now that has stopped as she had a stomach full on the last two aspirates. The dietician has further plans so we'll discuss these today

Tuesday, January 30, 2007 1:55 PM CST

Monday 29th January (Happy Birthday Kath!)

Today was a ‘good’ day compared with yesterdays turmoil and upset. Jasmin had a settled night, she maintained good oxygen saturation (sats) levels and respitary rate.

We met with 3 metabolic doctors today, we’d met with one last week, they are strongly involved in Jasmins care now which is wonderful as she is being cared for as a Sanfillipo child not a ‘healthy’ kid. Therefore expectations are not so high and it is understood more healing time is required.

This morning Jasmin had an EEG (brain scan) where abnormal activity was established but not abnormal to a MPS3 child. Her anti-convulsion medication is to be altered as Clobazam has a side effect of increased saliva, which is a major hazard to Jasmin as she struggles to clear her own secretions.

An X-ray of Jasmins chest was done which found that her pneumonia is slightly better but each lung has a large consolidation of secretions. The repair for this is more intense Physio. They are using a new piece of equipment called a cough-assist which pumps air into Jasmins lungs then pulls it out, therefore hopefully getting her to cough to release some secretions which in turn are sucked out by nasal or throat suction machine. Jasmins cough is very weak at the moment due to her being so unwell.

She has slept all day, so we’ve not had the pleasure of seeing her beautiful eyes or smile. She is still on the Bi-PAP ventilator but they have managed to reduce the oxygen input level today as she has remained stable.

We know from our discussions with the consultants that the road ahead is a long one on the way to recovery and even that is not certain, but we are remaining positive, we will not give up on Jasmin, not this early especially.

We miss her so dreadfully even though we are with her 12 hours a day, we only have her smell and the feel of her, we miss her smiles and eyes. We love Jasmin, she’s the most beautiful precious thing in our world.

We are incredibly lucky to have the intense support and love of our families and friends. Our parents have driven up daily to see us, furnishing us with lunch and dinner which we just re-heat in the microwave, drinks and snacks. They sort all our washing, ironing so we have fresh clothes each day, whilst caring for our house and dogs. Our Parents are the best, we love them so much. They have coped with everything very well, considering that they are worried not only about their Grand-daughter but us, their children too.

Whilst today was a day that didn’t bring us any bad news we are still taking it one day at a time as recovery for Jasmin is a slow one, and she has gone backwards twice already so we need to be open minded.

Dave and I are being as strong as we possibly can, caring and looking after each other with the deep love that we share.


Tuesday 30th January

Jasmin had a comfortable night, retaining her respitary rate and oxygen saturations. This morning they took her off the Bi-PAP ventilator and put her onto C-PAP ventilator which lets her breath more for herself, so this was a BIG achievement. Jasmin maintained this really well all morning, then they put her onto just an oxygen mask for an hour which again she did well on, before they returned her to the C-PAP ventilator. Tonight she will return to the Bi-PAP ventilator overnight. They are taking it very slowly with Jasmin to ensure she doesn’t get to tired, so that she will have the energy to be able to cope eventually on her own.

Jasmin has the pseudomonas bacteria in her lung which caused the pneumonia but they have found it in her nasal and throat secretions too which means that she is likely to carry this and is likely get further infections being pseudomonas.

The neuro team and metabolic team have been working on Jasmins epilepsy, and are altering her drugs about, so I’m glad we are in hospital whilst this is all going on!

Intensive Care Unit here is totally wonderful, the nurses are first class - totally brilliant at what they do, they know so much, and are the kindest, gentlest people. All of the one-to-one nurses Jasmins has had look after her have been exceptional.

Today was a really good day for us, but we still remain open minded as we’ve been here before and are very afraid still.

Thank you all for your thoughts and prayers

Sunday, January 28, 2007 1:43 PM CST

Yesterday afternoon Jasmin opened her eyes, smiled and giggled - 12 hours later at 3am we were telephoned and told that she was again critically ill and returned to Intensive Care and put onto a Bi-PAP ventilator.

Jasmin has masses of secretions that she is unable to clear and her cough is not very strong.

The Bi-PAP ventilator is not a intubation ventilator it is a vacuum mask which does the same job almost but is less invassive and less of a risk for Jasmin.

The doctors said at this point we may wish to turn off the ventilator!!!!!!!!!!!!!!!!!! WHAT?! We think that that's totally mad! Jasmin has only had one go at getting off the ventilator yes it failed but she still has a major chest infection and is very weak.

The plan we have discussed is that Jasmin will stay on the Bi-PAP ventilator, if she deteroitate on that she will be go onto a Intubation Ventilator. She will continue to under go intensive chest physio and suction. Hopefully she will gain strength and be able to clear her own secretions, then we can try her off the ventilator and onto an oxygen mask again. There is no guarantees. We are just hoping and praying that given some time Jasmin will gain enough energy to be able to cope. The Doctors have said that she may never be able to manage her secretions again, and whilst she may recover from this episode, she will undoubtly have more respitory espisodes that would lead to her death.

Today has been the worst day ever ever ever for Dave and I. We have cried so much. We are petrified. Our parents came to be with us today, which was good. We are totally devasted.

There is little more I can say, I'm in a right state typing this out.

Please continue to pray for Jasmin May

Friday, January 26, 2007 2:38 PM CST

Day 10 - Birmingham Childrens Hospital

Jasmin had a troubled night last night with coughing and breathing issues, which remained with her until later afternoon. BUT she is coping well on the oxygen mask and hasn't needed any further aide ie; C-PAP or re-ventilating, thankfully.

Jazzy has had more intense chest physio today; when she was ventilated they would put the suction catheter down into her lungs via the ventilator, but now that she's off ventilation, they have inserted a big tube into her nostril which goes down into her airway (MPA)they use this is catheter suction the secretions in her throat now.

Early evening Jasmins respitory rate calmed and she was moved OUT OF INTENSIVE CARE AND INTO THE HIGH DEPENDANCY WARD!!! Result! Another step forward, it is wonderful.

Jasmin has slept nearly all day, and we still haven't seen her eyes - that's 5 days now. Maybe tommorow she'll be more wakeful and open her beautiful eyes. Thankfully the inflamation of her eyes has now gone now she's off ventilation.

The plan now is that she'll stay on High Dependancy in Birmingham then she'll go on to one of the wards, before being transfered back to Gloucester Hospital. It's not going to be a quick process, we realise this, it'll take Jasmin a long time to recover from this terrible ordeal, she will be weak for a long time.

I have learned about her pneumonia, the Pseudamona bacteria - it's a bacteria that gets into weak chests common in those with cystic fybrosis, not healthy chests. It is treatable but it takes a long time to cure. Jasmin is one two anti-biotics for this.

Your prayers have been answered so far everyone, thank you for being there for us.

Much love, will update soon, off to bed now as Dave and I are totally shattered today.

XX

Thursday, January 25, 2007 2:11 PM CST

Hi Everyone,

Last night Jasmin again spiked a temperature of 40. Her blood pressure was up and
down but manageable. They reduced her sedation and withing minutes good old Jasmin was going for her tube! They bandaged her hands to prevent her doing any damage to herself. Poor Jasmins eyes are very very swollen up and red, it's from the ventilation - she hasn't opened them
at all yet, we've not seen her beautiful green eyes since Sunday evening.She is peeing now that they've given her some medicaton which is good but no bowel movement since Sunday so they're giveing her a supository this evening.

Later this afternoon Jasmin came off the ventilator! Yippee-yi-yi-ah!!

It was horrible to watch the tube being taken out and Jasmin couging and spluttering,her breathing sounded so bad, they suctioned her immediatley and got physio in
to continue suctioning. After a while it calmed down, but the physio said her secretions in her chest & lungs are very thick so not easy to get out so she was coming
back in an hour to try again after Jasmin had had another nebuliser.

The consultant told us that hopefully Jasmin will manage with the 60% oxygen that she is now receiving via a mask, if she struggles they will put her on B-PAP (this is intense oxygen but not ventilation, inbetween oxygen mask & ventilation), if she doesn't manage then she'll be
re-intubated and put back on the ventilator. It's trial and error he said as you don't know how she'll cope until she tries. So we are hoping and praying that our little girl will cope. Her secretions in her lungs and chest are very bad, hard to shift and this will take time to move.

Our parents have come to visit every afternoon this week which is wonderful support. We are not accepting
visitors other than them at this time. I'm sure everyone understands this and respects our decission, it's a tough time for us and we are just wanting to solely focus on Jasmin May with our Mums & Dads help.

We have a long way to go in the road to recovery for Jasmin, and tonight is a crucial time to see how she copes
off the life-support machine.

Keep praying!
Much love
Ria & Dave XX

Wednesday, January 24, 2007 3:46 PM CST

Hi Everyone,

A million trillion thank yous to you all for all of your messages, thoughts and prayers.

This situation started Monday past with a simple wheeze - can’t believe it’s come to this. Jasmin was admitted to our local hospital Wednesday by ambulance as her sats (oxygen saturation) was just 85-88 She had a chest x-ray and was on oxygen from then onwards, IV & via PEG anti-biotics, steroids, hourly nebuliser and IV fluids (no feeds). The x-ray showed a pneumonia on her right lung. Sunday morning she got much worse, needing 80xygen again after being reduced to 40he previous evening. I asked for another chest x-ray. Throughout the day Jasmin deteriorated and required 100xygen, her respitory rate was wild and I asked for a doctor to see her and to get the x-ray results as no-one had even looked at them. The doctor finally came and said the x-ray showed the pneumonia had worsened on the right lung and the left lung had collapsed. They spent ages finding the consultant to see her, when he did he seemed to ‘em and ah’ about her condition - then he rang around other hospital Intensive Care Units to ask their advice (there is no childrens ICU at Gloucester), the 3 closest hospital ICU were full but Birmingham (50 mins away) had space and immediately sent down their own ICU Doctor, nurse and anaesthetist. On arrival the Birmingham Doctor Jean declared Jasmin as ’critical’ and told us she was very seriously ill, also that she feared for her life with intubation. Due to the Mps they intubated Jasmin in the theatre at Gloucester hospital before taking her to Birmingham.

When we saw the consultant at Birmingham she said they could have lost Jasmin as she was in such a bad way when they got to her. This scared the life out of us as at no time did Gloucester tell us that she was so terribly ill and could loose her life. The top guy at Birmingham ICU said that Jasmin should have been in ICU when she was requiring 80xygen! Oh My God Gloucester Hospital put our baby at such high risk - we will be taking this further of course. It makes my blood run cold thinking about what could have been because of their tardiness. Anyway, that’s a situation that we’ll deal with once things are calmer.

Over to Princess Jasmin - right now Jazzy is on a life support machine, ventilated with 35xygen (this has been reduced a bit each day). Today they hoped to take her off ventilation but sadly her blood gasses did not read quite as well as expected so it’ll be a slower process than originally thought. They have now discovered the bug that is the root of her pneumonia it is Pseudomonas (spelling maybe slightly off) which is a nasty bug not covered by broad spectrum anti-biotics, but now they have the bug named they have changed the drugs and she is on two IV ones. I’m hoping to get time to read on the internet about this bug but if anyone has any info please email me. Poor Jasmin has line everywhere, in her wrist artery, both feet & heart monitors on her chest. she’s catheterised as she hasn’t been producing enough wee and has an anal probe for her temperature. She has spiked a temperature of around 40 everyday so far, but this is treated. She is sedated with midozalam and morphine. They tried to reduce the sedation but she was quite wild she she came round and trying to pull out the tube so they had to sedate again, but they need her to come off sedation so plan to put splints on her arms to keep them straight so she cant get to her tube - this sounds horrid but if she pulled on that ventilation tube it would be much more horrid. Jasmin eyes and feet are very swollen, all puffy this is due to the ventilation apparently. Her blood pressure has been low all day so they gave her more fluids to correct then it went high! Jasmin is having intense Physio 3-4 times a day which involves putting saline down her ventilation tube into her lung, then sucking it out along with all of the secretions that are causing her so many problems. It is horrible to watch the Physio as Jasmin is coughing but not out of her mouth due to the tube, but her chest just moves and her face crinkles up. Today they had to knock her out with ketamin as the tube was found to be in a centimetre too far (due to her movement when unsedated and intense coughing) and pull it out abit - totally heartbreaking to see this being done. The care in the ICU is totally amazing, one to one nursing, doctors, anetheiatist’s and physio’s all over the place. Jasmin is in fantastic hands.

This has been the most torturous journey we’ve cried buckets and it’s been so scary. We thank everyone for their kind messages, cards and prayers. Dave and I have been into the chapel at the hospital to prayer for our baby girl and the Chaplin has been to visitor her. Beside Jasmins bed she has a guardian Angle prayer, photo’s of her cousins Mia and Leila and also our friends children Harriet and new born William, plus her favourite Teddy Bear Edward.

I’m typing this from the accommodation provided for us by the hospital which is wonderful (Although we didn’t have it till yesterday, so for first two nights slept on chairs in lounge at hospital!). Last night was the first time I’d slept in a bed for 7 nights as at Gloucester hospital I slept on a reclining chair beside Jasmins bed. Dave and I are holding up ok with the love and support of our wonderful families and friends.

I will update when I can.

Ria XX

Tuesday, January 16, 2007 3:55 AM CST

Hi,

Jasmin was doing so well after her bad chest and tonsilitus the week before last, this weekend she was wonderful, looked great and walked really well with Dave and my help she even went back to school for half a day Friday.

THEN... Monday morning she woke with a wheeze. I took her into school for her short day, which is what we were doing with her til she got to full strength, but when I got there her wheeze was alot worse and so I her physio in school Jan came to see her. Jan listened to her chest and said that she had an intense wheeze on her left lung and lots of overall noise from gunk in there. Jan rang our consultant peadiatrician Dr Motion sho saw Jasmin straight away. Dr M said that the wheeze was due to inflamation of her tubes plus there was alot of noise from phelgm in there. The respitorary nurse examined her too and they agreed that she should have ventolin every 4 hours (she has this on occasion) plus another inhaler, which is a new one to me, it's purple and called SERETIDE, it contains Fluticasone propionate and salmeterol one of which is a steriod. They said she has to have this twice a day forever now to protect and prevent her lungs and tubes.

As they've covered her with ant-acid and a reflux med they now are covering her chest with this inhaler as she just keeps getting such chest problems. I don't know where else they will go after this. They said she may have had an aspiration which has caused the gunk, which could only be from her saliva as she's nil by mouth and not been sick.

Jasmin had a very rough night, her temperature was raised, not high to worry about but high for Jasmin and heading upwards and she wheezed and coughed most of the night poor thing.

The good news is that school has authorised it that Jasmins one-to-one carers, Caroline and Juliana in school can be with her in the home when she's too ill for school which is a blessing to me!

I'm working from home today and Caroline (carer) is with Jasmin. I didn't want to go into the office even though Caroline is perfectly capable but Jazzy temperature is raised again this morning so I want to be close at hand.

It pains me to see her struggle so much with her breathing and that horrible coughing - I wish I could take it all away from her. Hopefully this new inhaler will sort out this wheeze and with lots of physio I hope to move this gunk out.

Is my baby ever going to be mended? She has coped with SO much since July, she's amazing.

Thursday, January 11, 2007 4:22 AM CST

Hi

Jasmin got her new wheelchair yesterday -

http://www.remployhealthcare.com/pdf/Hantsverk%20Tilt%20in%20Space%20options%20leaflet.pdf

thats the link to it if you wish to have a look. It's really cumbersome but the support it offers her is superb plus it's ideal for off roading! The best things are the brakes on the handle bars which is ideal with our steep driveway and the footplates swing out which they didn't on the old one.

Jasmin is keeping well, she seems to over the worst of her illness but is still coughing!! I think that its a build up of phelgm overnight which causes lots of coughing each morning, hopefully as she recovers adn gets more mobile then this will shift better.

Please have good thoughts for my lovely sister-in-law Kellie who is 35 weeks pregnant and is having extreme problems with her legs, they are so badly swollen - they think it could be blood clots! Poor Kel has been in lots of pain recently after a very tough pregnancy.

Much Lvoe
Ria xx

Monday, January 8, 2007 5:31 AM CST

Princess Jasmin seems to be well on her way to recovery from her chest problem and tonsilitus Thankfully. After intense chest physio she seems to have clearer all the gunk out. She is very happy and full of smiles, 'talking' quite abit and laughing plenty. She is terribly weak on her legs right now, which is understandable after her illness, takes time to build up again, but she has been walking around the house with us holding her and yesterday I only held her with one hand.

Sadly, her left foot is turning inwards very severeley, I do put her splints on but maybe not as much as I should. I use the night splints when she's at home sitting or in bed but I cant fit the day splints into her shoes/trainers - need to get some more, this is a realy problem as the splints are very sharp and cut through the shoe within days.

Tommorrow Jasmin gets her new wheelchair! Hooray! Can't wait for that as her current one is too small and not supportive enough. I'm still in the throws of looking into getting a wheelchair assisted vehicle, Daves Dad is helping me on this front as Dave and I know very little about cars!

January 25th is Jasmin diagnosis anniversary, which I'm not looking forward to - I HATE THAT DAY!

Hope that you are all keeping well, thank you for keeping in touch via the guestbook and email and for thinking of us.

Much Love,
Ria, Dave & Jasmin XX

Friday, January 5, 2007 5:26 AM CST

Well we had another trip to hospital this week!

Jasmin seemed to have a sore throat at the start of the week, she made strange painful coughing sounds that's how I came to thinking about her throat. Then Tuesday morning her chest sounded full of gunk, really noisy breathing and lots of coughing from 4am, poor thing. I did loads of suction to get rid of the phelgm that she was producing.
Wednesday morning she was really struggling with her coughing and breathing so I called her consultant pediatrician who had her admitted to hospital on the thinking she may have a chest infection and would benefit from IV anti-biotics. She felt that Jasmin may be having some reflux which may be why the chest was so nasty.

We went in, had a blood test and X-ray. First off they they found that she has a bad tonsilitus too, the Doctor said her tonsils are so inflammed they are almost touching each other and have lots of pus on. They put her on IV drugs for her chest whilst we waited for the blood/x-ray results which found that Jasmin didnt have a chest infection afterall (!!)but a severely conjested chest which required lots of physiotherapy to shift. So she didn't need IV drugs for tonsilitus so I asked for them to change her to oral (via her peg) so that I could take her home.

So we came home 24 hours later with a bag of new medication - one for the prevention of reflux, anti-biotic, movicol to keep her bowels moving as they aren't performing again!, patches for behind her ear to dry up secretions/drool to prevent her having to swallow so much which may cause aspiration... so that's all on top of her current anti-convulsion medication, sleep meds, ant-acid and vitamins!!!

Today I'm feeling abit sorry for myself as I've been run ragged. Having unpacked all of this medication I found it wouldn't fit the medication box anymore so I've had to re-home everything in a cupboard. I've had to try to 'fit in' all the medication during the day, spacing their administration but ensuring that not too much at any one time is going down the peg as Jasmin would be sick!

In-between running into Jasmin to support & give her suction as she's coughing really badly, plus the phones been going mad - the community nurse wants to come and see us, the dietician wanted to discuss the feed and Jasmins bowels, the wheelchair clinic needed to arrange delivery of her new chair and The washing and ironing is yelling at me for attention - but I'm ignoring that one!

The ongoing care for Jasmin now is lots of chest physio to move the gunk and get her coughing (even more thaqn what she does on her own) and suction the rubbish out, this I'm doing at home as I'm quite well taught and practised in this now. The anti-biotic should hopefully sort Jasmins throat out, along with paracetamol to relieve her throat pain which is brought on from the intense coughing. Harder for her as she's nil by mouth and the throat is dry. I have been giving her a small bit of fluid in her mouth via a mouth swab just to help her swallow but too much would increase the possibility of an aspiration! Never blinking ending!

Juliana, Jasmin respite carer has recently arrived so I can now shower! Good job you can't smell through the web - not nice!!

Ria XXXX

Sunday, December 31, 2006 10:43 AM CST

HAPPY NEW YEAR TO YOU ALL

Hope that you all had a lovely restful Christmas.

We had a super time. My family came round for the day; My parents, sister Vikki, brother-in-law Jason and my gorgeous nieces Mia & Leila, my brother Neil and his very pregnant wife Kellie. Kellies due to have a baby boy in mid-January - exciting!Jasmin had oodles of wonderful Christmas presents, delicious clothes, sensory toys, books and snuggly toys, she was very spoiled - but hey shes worth it!

We all had a fun, eating, drinking and playing with the children. They were really worn out by early late evening and all slept brilliantly! Result!

Jasmins been very sleepy over the festive period, spent lots of time chilling out and sleeping. She's been abit congested, mainly in the mornings but is alot better come lunchtime. It seems that overnight she gathers quite alot of mucas on her chest and coughs quite abit on waking. But, she's not let us down in delivering us with beautiful smiles and giggles bless her.

Daves parents and Nana came to stay with us on the 27th and we had a Christmas meal with them and more presents!

This evening the family are coming round again, except Neil and Kellie who are having a quiet night in together as it's Kels birthday too, plus she's very tired at the moment not sleeping well at night with the baby kicking and twisting away.

Wishing you all a very peaceful 2007

With love
Ria, Dave and Jasmin May
XXXXXXXXXXX

Thursday, December 14, 2006 5:39 AM CST

Hi Everyone,

Our beautiful Princess Jasmin has bounced back from her gastostromy operation in her usual resilient manner – she’s just so inspiring.

The wound or ‘site’ as the nurses call has been quite weepy, not infected just weeping clear fluid- it has to be cleaned with a swab and saline, the nurse did it when she first came out of hospital and Jasmin cried as it hurt her so much.

Now I do it twice a day, the morning clean is the worst as overnight its wept and dried into a crusty formation which I have to swab quite heavily to remove and always fear hurting her. A week after the operation the nurse came to look at the ‘site’ as the weeping was quite heavy, she undid the clip attached to Jasmins stomach and loosened it, now you can see the actual tube entering her stomach it’s pretty stomach turning to see, but with the clip being looser the air will be able to get around the site to aid the healing process. A week later it’s a lot better, still a bit weepy but looking good, the nurse is going to school to see Jasmin today to do the first ‘turn’ and ‘clean the clip’– now that the tube has settled it has t be ‘turned’ 360 degrees each day (!!) and also once a week the clip needs to undone and cleaned inside(!!!!)

Initially, Jasmins tummy was very sore; she was on pain relief for about a week. Some nights she’d cry as she’d rolled onto her tummy in her sleep and it hurt, so I’ve tried to keep her sleeping on her side, packing her back with pillows so she can’t roll over and cause herself pain. This has worked really well, but sometimes she still whines in the night, I think because she’s stiff in her joints so I turn her onto the other side and this seems to ease her discomfort.

Feeding Jasmin via the gastostromy is much better than through nasal-gastric tube, the feed goes in a lot easier as the g-tube is thicker and also I don’t have to do the awful ph test before hoping that I can get some aspirate out of her stomach. The only issue is that the tube is quite long and hangs down so it’s hard to find a safe place for it so that Jasmin doesn’t pull at it, I tuck it into her trousers/pants or hide it under her vest – I’m sure there’s a better solution for keeping the tube safe – any ideas MPS Mums???? The other slight problem is that I normally gravity feed in the evening however for this procedure the tube isn’t long enough and Jasmin grabs at it which causes a huge spillage so I’ve syringed in that feed now, again this is still a hard process as Jasmin holds the syringe as I’m doing it – helping Mummy of course! It’s better when someone else is there to occupy her hands so I can attempt to get the feed & medication in without her noticing!

Jasmin has STILL got bowel problems, she’s had the runs since before the g-tube was fitted, the dietician had her initially on pediasure with fibre, which apparently can send bowel consistency one way or the other, so then she changed it to half fibre half normal pediasure, which again hasn’t worked, so yesterday we changed it simply to just plain pediasure – so here’s hoping that this will work for Jasmin. Sweetness and light Jasmin has horrific wind too – from the lower end! Dave & I find it very funny as she ‘parps’ away quite innocently without even noticing – shame we all can’t get away with doing that!

Jasmin went back to school last Wednesday for the first time since the op, but was exhausted when she got home so stayed off Thursday, returning Friday but again came home shattered and promptly fell asleep in the chair, bless her. She was so tired all weekend, and all of this week I’ve had to waken her for school and prize her out of bed, some days dressing her whilst she’s still snoozing! Luckily Jas has one-to-one in school and they make superb provisions for her by way of a bed and her own agenda depending on how she’s feeling. Jas did miss the Santa cruise trip yesterday though as she was asleep – Caroline, her one-to-one rang me and said was it ok to stayed snuggled up in school with Jasmin as she was just to too tired. Needless to say with Jasmin being so totally exhausted at the moment Dave and I are relishing the sleep! I know I’ve tempted fate saying that!

The physiotherapist in school is fabulous and has spent a great deal of time doing physio on Jasmin chest, which is very crackly a lot of the time, it’s upper airway noise caused by phlegm not infection luckily, and also on her ankles which are very stiff. The physio has told me that Jasmins ankles are getting much worse and that she needs to wear her splints as much as possible, something I really don’t like putting on Jasmin but now realise if I don’t I could reduce her mobility in the future as her ankles will seize up.

I must mention my wonderful little 3 year old niece Mia, she’s 3 going on 30 she really is, bless her. She knows Jasmin special, she’s only known Jasmin as she is, and Mia really does molly-coddle her. Last week Mia came to visit Jasmin, and sat in the chair saying to Jasmin ‘Come on Princess Jasmin, come sit on Mia’s ‘yap’ (Lap!), then she was stroking J’s hair saying ‘ Did you have a nice time at school today beautiful?’ in a cute adult-to- baby voice – too cute! Mia understands that whole ‘tube feeding’ thing too – when Jazz had her nasal-gastric tube and would say ‘Have you pulled your tube out today Jazzy May?’, now the g-tube’s in place she has to ‘have a “yook” (look), and check it’s “alwight” ’. I ‘ve sewed a g-tube, given me by the nurse, onto Jasmin favourite Teddy bear Edward, so when Jasmin has her dinner now, Mia syringe feeds Edward through his ‘ostromy tube’ – Ahhhh! Amazing how Mia just takes everything in her stride and she is totally devoted to Jasmin, she says she’s her best friend. Hence, Ria is an incredibly proud Aunt with very good reason!

Our house is like Santa’s grotto – those who know us well will appreciate this comment, as we decorate everywhere! We have hundreds of decorations; singing Santa’s, singing reindeers and singing snowmen – Jasmin loves all of this especially the lights but not the Christmas cards, she hates cards on the fireplace and sideboard, she pulls them off and throws them on the floor!

Well, that’s my lot for now, hope to update before Christmas in the meantime we hope you’re all keeping well and enjoying the preparations for festive period.

Lots of Love XXXXXXXXXXXXXXX

Friday, December 1, 2006 10:50 AM CST

Wow, what an experience Tuesday was!! I had to ring in the hospital on the morning of Jasmins operation, which I did and was told that there was no bed available!!?? I was told to call back at 11am - still no bed! The bed co-ordinator called back half hour later with a bed. As you all know I’d been in a right state of fear about then op then with maybe not having a bed I was in panic of no having the op – what an emotional roller coaster that was.

We arrived at the hospital, which is renowned for its lack of car parking – it took Dave 20 minutes to park up after dropping Jasmin, me and our gear off at the entrance. By time we reached the ward we were somewhat fraught! Within the hour Jasmin was taken to theatre and she was back on the ward half hour later, no tears or screams post op like we’d had last time she had surgery, thank you Lord. Jasmin sailed through it, she even gave us smiles early evening. My wonderful friend Louise (Georgia Mum –MPS111a) came to visit us, poor Lou cried with relief for us when she saw Jasmin – Lou & I then absconded to the pub for half an hour for a much needed celebratory swift beer and cigarette whilst Dave cuddled Jasmin LOL!

During the night the nurses were doing her observations on the hour, each time they touched Jasmin when she was sleeping she’d jump a mile in shock and fright, poor baby. The second night I slept in her bed with her as she was unsettled – it was very noisy on the ward and there were lights on everywhere. She slept soundly through the night, bar falling down the side of the bed – there was a gap between the bed & the cot-side and poor Jasmin’s legs fell down it – she cried out and I had to rescue her, she was really frightened.

48 hours later Princess Jasmin was walking around the ward sharing her beautiful smiles – she amazed me with her courage and stamina.

The hospital experience was awful though – there were more student nurses than qualified ones, and they didn’t know anything – I’d never used gastostromy before but taught the students how to use the syringes in the tube and reminded them to ‘open the clamp!’. I had to chase every feed and medication as they didn’t bring it at the allocated time on Jasmins care plan, and when it did arrive they simply left it on the bed for me to administer –so I’m self-taught in gastostromy feeding! I asked the surgeon if we could go home 24 hours early & she said if Jasmin tolerated her feeds then we could – I just wanted to get out of there, so much easier caring for Jasmin as home as I was doing everything in hospital for her anyway.

We got home at 6.30pm yesterday evening, I decided not to do Jasmin last daily feed in bed when she was sleeping as I’d done before on NG-Tube as I felt it was a worry due to her wriggling, so I gave her her meds & bolus fed her ‘supper’ then put her down for the night at 8.30pm and she slept through til 8.15am! Wow! Today she’s smiling and laughing but has stayed in bed as she’s very tired, I think she’s relieved to be in her own room and is enjoying chilling out with Mummy.

Thank you all for being there, for your messages of love and support but most of all - for caring.
XXXX

Monday, November 27, 2006 4:44 AM CST

Ria writes; - Well 14 hours till we have to be at Bristol Children’s Hospital for her gastostromy operation, and the nerves set in big style with me this weekend.

Friday evening it started, with me getting major panicky I had to ring Mum late in the evening just to hear her voice for comfort. Dave was here making me cups of tea bless him, but I just needed my Mum! Saturday I cried loads. Just thinking about the surgery brings a lump of bile to my throat and I think I’m either going to throw up or choke. I have to take deep breaths to try to keep myself calm down. Talking about the operation is terrible, I stutter and the tears are falling uncontrollably.

My fears are mainly the anaesthetic – with Jasmin having MPS there’s such a high risk. I spoke to the surgeon a few weeks ago and she’s operated on Sanfilippo children before with full success and assured me that her anaesthetist is experienced in MPS children. This is of course a huge comfort but…. the fears are in so deep with me. There never seems to be a clear cut operation with MPS children, complications always seem to arise.

I was stroking Jasmins tummy yesterday, and my tears started again thinking of something obtrusive in her beautiful tummy. Jazzy is so fit and well right now which is wonderful for the surgery, she’s smiling & laughing loads and walking really well.

The community nurse is coming to see me this morning, she’s going to show me a gastostromy tube and talk to me about me fears and worries. These worries extend to being in hospital too – I’ve stayed with Jasmin at Gloucester Royal Hospital on many occasions, and the nursing team all know us and care for us so well, they give us a room of our own so that I can get Jasmin to sleep with her sleep medication and so she’ll not be disturbed. I don’t know what to expect at Bristol – I know that we’re due to be on a ward and that worries me-don’t get me wrong I don’t want ‘special treatment’ but I have concerns about Jasmins sleep issues and her need to rest and it could be noisy and disturb her. Also, in my separate room I have a bathroom so I can pee whilst still watching her- Rather than have to ask a nurse to care for her so I can go!

Last night, she pulled out her naso-gastric feeding tube – again! – I reinserted it at 6.30am with Dave and Mum came to help too – exactly same as last Monday morning! I’ll be so glad to see that back of that blasted NG-tube! It’ll be lovely to see Jasmins pretty face not obscured with a tube and masses of tape.

My friends on the forums (other parents/family of MPS children) have been totally amazing with their support, advice and prayers – here are a few of their messages so you can see how wonderful they are;-

***Oh Ria -I just wish I could be with and give you a BIG HUG right now -I pray all will be well and if good thoughts and prayers work literally millions are coming your way-try to stay strong I am thinking of you and the Princess Hugs -Laura xxxxxx Mum to Will (age 6 MPS2)

***Ria, I am here too! Just like Laura, I wish could be there with you personally. I will be there is spirit! It is so scary whenever our children have to go under GA for any procedure. But as Laura said there will be many prayers coming your way! Praying not only for Jasmin, but for everyone that is in that OR working with her. Prayers are heard, and God will be there with you and her!! Please try and not worry, as worry will only tear you down.. you need to stay as strong as you can for sweet Jasmin!! Hugs and prayers for you all!! - Patty Taormino - mom to Jesse - MPS III A

***Ria, I can only imagine what you're going through right now, I'm sure it's all very scary, try to stay calm, easier said than done I know. I'm sure Jas will be fine, she's strong & well now & that's good. Me & Jon would love to come & visit, after all the hospital is only 10 minutes away from us, but will leave that up to you honey, will text you. Yesterday, when I was shopping with Georgia, she grabbed something off the shelf, when I picked it up, it had 'Princess' written on it, it was lovely & just perfect for our little princess Jas, so I had to buy it. How strange, it was as though Georgia was telling me we just had to have it! Will give you a huge, huge hug babe, as soon as I see you, be strong. Louise, Mum to Georgia, 11 yrs (MPS 111A)

***Ria, I wish there were something I could say that would make you feel better- but I know, all too well that there is nothing I, or anyone else can say that will make this easier for you. When Ty had his shunt surgery, I had many professionals telling me how "simple" the procedure was. That it could be done with ease by a resident and had been done many times before by many 1st year residents- but that Ty would have one of the top neurosurgeons in the country (possibly the world) doing this "procedure"- they didn't even call it a surgery! it was a "procedure" All I knew was that they would be putting my precious baby under general anesthsia, and cutting into his brain to add a foriegn object which would then stay in his sweet little body. I couldn't breathe! I couldn't sleep, I couldn't swallow! the lump in my throat was choking me. I had such anxiety that I can't even explain the feeling to you..... but you understand the feeling without my having to explain it- I read that same feeling in your words this morning and it made me cry, not for me and Ty this time- but for you and our sweet Princess Jasmin. It doesn't matter that this is a procedure that has been done many times with wonderful results, that the percentages are in your favor, that is not something you can wrap your mind around now because the plain and simple fact is, your precious child had to have surgery and it is scary and fear is looming over you. I had many friends tell me that they would pray and while that did offer me some peace of mind in some far removed way, it did not take the lump out of my throat or the dread out of my heart. I believe with all my heart in God, I believe in God's Will for us, I believe there is a Plan for each of us. I believe God loves me and that He will get me through everything- however at that moment in my life I did not know what God's plan was for Ty, and I did not know if I could make it through another day if God's plan was not what I hoped it would be for Ty. I am sorry I am rattling on and on, I just wanted you to know that I understand how you are feeling right now- I also understand that right at this moment, better than telling you "everything will be okay" "don't worry" that the best thing I can do for you is to tell you that your feelings are valid!!! Your concerns for your sweet, precious Jasmin are exactly as they should be, as her mummy and best friend. It is okay that you are worried, anxious, ill about the surgery and I am sorry to tell you that it will only get worse until you see her in recovery. The lump in my throat grew so large that while Ty was in surgery, I thought I was going to stop breathing, I was choking so hard I couldnt speak to pray- so I had to pray in silent and that is all I did the entire time. The moment I saw Ty in recovery, even though he was not yet awake and he was on oxygen because he had airway difficulty during the surgery- I felt a sense of relief. Later in the room, when he woke up and began to interact with us, it was like a ton of bricks was lifted off my chest, I felt so light I thought I could fly. I can't explain the feeling of peace I had at that very moment, but I don't have to because I know that you are going to experience that very same peace when you are kissing Jasmin's forehead and sweet cheeks after her surgery is over and you are with her in the room. Your peace will come, your throat will clear, and your tears will turn from dread and worry to rejoice and praise! All your friends, all of us here and all your family will be praying for Jasmin and for you! God will hear our prayers. Now, in order to get you through these next few days, firstly we will lift you up in prayer for strength (which you have already in tenfold, but we will ask for more!!) and for God's loving arms to wrap you in comfort! Please know that we will be praying so hard for Princess Jasmin and for you, my sweet friend! You will make it through this. We are here for you. and It sounds like Louise is going to be able to be there physically for you- what a blessing that will be!!! Many thoughts and prayers for you and Jasmin, I know you will experience that relief I spoke of- hang on to that if you can. Love, Kim mom to:Caroline- 8 yrs old (undiagnosed) Ty- 4 yrs old (undiagnosed)

**Ria we will all be thinking about you and Princess Jasmin.....I wish there was something I could do for you. I pray that you take Louise up on her offer! Praying she will be there for all of us. - Kim Mom to Scotty (MPS II) 8 yrs old

**Ria, I know you must be so anxious about the surgery on Tuesday. I know that Jasmin is your heart and soul and that you are very scared for her to have the surgery. We will all be praying for you and Jasmin and your entire family. From every thing I have read about the G-tube with MPSIII kids it only makes life much better for everyone. I know that it is the actual surgery that scares you so much. Just remember that you are not alone and that many parents have been right where you are and have gotten through it. I pray that God will lift away that panicky feeling and that you can find some peace in knowing that everything you do for Jasmin is done because you love her.Leslie, Mom to Isabel- MPSIIIA

**IBless your heart! I can sure feel the fear in your words! Just know that GOD will be with you watching over your sweet baby girl! Your forum family will be here for you anytime you need us! = Aunt Rhonda

**I can understand your fear as can many others. It is so hard for us as parents to just stand (because there is no way I can sit until he is awake and fine) and wait. Sometimes I wish there were observation rooms to the ORs so that he wouldn't have to leave my sight. Please know that we will be praying for you hard over the next few days. We will also pray for the people who will be handling her, that GOD will guide there hands to keep her safe Carolyn M. Hinton Mom to: Danny Hinton

***Ria, it is certainly understandable that you feel much anxiety right now. When your child is diagnosed with Sanfilippo it is hard to have faith in percentages. However, do continue to remind yourself that most of the time the procedure does go well, and that your precious Jasmin is in the prayers of many people today and especially on Tuesday. May God bless you and give you peace of mind. -Grandmother to Isabel aged 4 MPS3A

THANK YOU ALL FOR BEING THERE XXX

Thursday, November 23, 2006 10:41 AM CST

Ria Writes;

Hi – Thank you again everyone for your wonderful support to Dave and I whilst things have been so up and down with Jasmin.

Since I last wrote mid-October, Jasmin has been well most of the time expect for a nasty chest infection which landed smack on the week that her gastostromy tube operation was scheduled! Typical! Luckily Jazzy didn’t get another pneumonia but she had a very horrible cough with her chest infection, the respiratory nurse came to the house and gave us a suction machine to use. This is like what you have at the dentist to suck aware all your saliva when your having treatment, the concept with Jasmin was much the same. She’s have a bad coughing fit and the phlegm would be in her mouth so I had to suction it away so she didn’t swallow it –this was to keep her chest mucus free and also to ensure that she didn’t swallow it and cause and aspiration (going onto lung not into tummy) which in turn could cause a pneumonia. Vicious circle!!! (Hope that all makes sense!?). Jas was on anti-biotics for a week and was again off school and home with Mummy.

Jasmin has pulled out her nasal-gastric feeding tube more times than I can count now! I learnt, shortly after my last update, how to insert it myself. It was a bit of a scary thing to do, I had to have two people holding Jasmin still whilst I put it in – it worked first time! Yippee!! I’ve done it numerous times since, I still need two people to hold her though which has been abit of a hassle at times – this week alone I’ve had to get Mum round at 6.30am to hold her with Dave so I can reinsert the tube so she can be fed and medication administer before school! Praise my wonderful Mum!

Back at the start of the year I informed you that we’d started giving Jasmin genistein and also vitamin supplements; -

TAKEN FROM MY JOURNAL HISTORY IN FEBRUARY 2006 - I’m going to tell you briefly about Genistein; a soy extract which is a natural product. It has been found from a study in Poland that when used with Sanfilippo children it can slow down the regression, some children ware walking better and some regained some of their speech. We started Jasmin on this on the 28th January. Alongside the genistein we are complementing her diet with vitamins that work alongside the work done be the genistein, so Jasmins daily medication/supplement list is now bordering an A4 sheet and the kitchen is a hive of bottles and oral syringes! We’re hoping with all of our hearts that the genistein with help Jasmin – fingers and toes crossed that it will.

In July when Jasmin had a pneumonia I stopped giving genistein and supplements simply due to the fact that I was struggling to her to take food let alone all of these extras, then the nasal tube came along and I wasn’t confident about pushing all of these extras down the tube or how exactly to do it!? I asked on the MPS forum for help from other parents (these are predominantly American parents who all use genistein and supplements with their MPS children). With their experience and knowledge I’ve reintroduced genistein and an array of vitamins into Jasmins daily diet and the results are clearly evident. For the whole of July, August and September Jasmin was almost totally immobile as she struggled to recover from her illnesses. After her most recent chest infection early this month I began giving her the genistein and vitamins and within 4 days Jasmin was back on her feet!?! It has been 2 weeks now and Jasmin is a changed child from how she was in the summer – she’s smiling and laughing almost continually, she’s standing much more steadily and is walking a good distance now – she still requires to be held while walking but Wow! We’ve come a long, long way in the past 2 weeks. Jasmin is more vocal too; - she ‘talks’ and ‘sings’ so much more. Her concentration and interaction is super, and she is happy sitting on the floor exploring and playing with her toys.

My information regarding vitamins and supplements and their dosage has come from Patty, a Mother to Jesse her son who has Sanfilippo like Jasmin. Patty is a self-made vitamin genius! Patty has devoted her time for many years to aide Jesse’s health through diet and vitamins. She kindly shared her knowledge with me; she trawled the UK health websites checking the vitamin labels for me- Hail Patty! The cost of all of these supplements is incredibly high –but Jasmin's well being is priceless.

Jazzy also retained her good sleep pattern, well to a certain extent excluding this Monday & Tuesday night! Monday night she slept but woke up full of beans and wanting to play at 3.30am and minus her tube! The next night, Tuesday she just wouldn’t go to sleep, but at about mid-night she seemed to have settled so I set up her hour long evening feed on her pump and went off for some rest and I fell asleep, the beeper went off waking me – I went downstairs to find Jasmin sat up in bed with her tube in her hand and pediasure feed all over her and the bed!

This nasal tube is going on Tuesday 28th November with the gastostromy operation – I can’t wait, but am obviously pretty nervy. Please pray for Jasmin to have a safe and successful operation.

This week more changes – Jasmins been to the wheelchair clinic – yes again! I know she’s only had her chair for 3 months but its rubbish! There’s so much wrong with it, I was badly advised at the last clinic so this time I went armed – with Juliana who’s Jasmins amazing respite carer who has years of experience with disabled children and wheelchairs – she was wonderful, asked loads of questions, queried everything = we got the right chair this time!

Jasmin is suffering with awful runs – dietician is changed her pediasure fibre feed to ½ with fibre and ½ without to see if this sorts the problem. Her nappies (pull-ups) don’t hold the volume of wee she’s producing so she’s having a major ‘flood’ in school each day (2 sets of clothes a day- Blah!)so spoken to continence and we’re losing the pull-ups in favour of the nappy she currently wears a bedtime, this is more absorbent so hopefully she’ll be drier and more comfortable. The bonus with these nappies is that they do up at the sides so Jasmin doesn’t have to be stripped of for each change like she does with the pull-ups – bonus in this cold weather, and much easier on the lifting front as pull-ups are a mare to get up when she’s lying down, and when she’s tired she can’t stand up for me to put them on…!!!!

The hoisting sling has arrived … ah but no hoist yet!?!? The bath still hasn’t been ordered – the usual political crap with social services/ county council! But I’ve chased it myself now as I’m sick of waiting, and bathing is a nightmare as the hoist wont fit in our bathroom, so it’s all lifting. We have to change our car to a wheelchair-adapted vehicle – this is via motability, so I’m looking into that. Her new chair will take 6-8 weeks to come so hope to get it near to that, as new chair doesn’t fold down very small. Jasmins too heavy to keep lifting into the car, I find it really hard work. So watch this space! The adaptations to the front door and outdoor car hard standing are still pending also – county council…

Wow! Hope you kept up with all of that!? I’m going to update this site much more often! Promise! But, in order to do that you need to encourage me by leaving us nice messages in the guest book, Deal? LOL!

I’ll let you all know how the op goes next week, much love Ria xx

** Thanks to Jan and Edd Reid for hosting a Cheese & Wine Party raising funds for Jasmin May – 101.40(pounds that is, my pound sign has stopped playing!) – we are putting the money towards so fibre optic thread lights, like the ones Jasmin adores in sensory at James Hopkins Trust and school, they are 250.00 (pounds). It was a really lovely evening – that cheese gave me a right headache the next day though LOL!

Tuesday, October 10, 2006 3:54 AM CDT

Maria writes;-

Thank you everyone for your kind words and actions of support to us whilst Jasmin has been so ill.

We saw Dr Wraith, Jasmins specialist at the end of August, (the day before Jasmin chest became really noisy); Dr Wraith prescribed steroids and inhalers for her airways. The neurologist was at the meeting and he thought Jasmin had some ‘break through seizure activity’ so arranged an EEG for the next day. There was some so up went the anti-convulsion medication again!

A few days later we had our annual family holiday in Devon, which was lovely. The weather was really good and we had a lot of fun and laughs. Jasmin took her special tricycle and enjoyed riding around the site. A bit hard for whoever was pushing her though as the site was VERY hilly! Jasmin had some break through seizure activity so we had to increase the anti-convulsion meds yet again!

Jasmin had diahorrea the day we returned from Devon, the next day we went to Menorca, we had a successful flight – luckily no diahorrea! It did rear its ugly head again though the next day on the beach! Now that was an experience! Sand and poo everywhere! We ended up giving Jas Imodium every 3 hours to control her bowels, poor thing. After 24 hours she was all clear but we didn’t return to the beach, we stayed close to the apartment by the pool and luckily there were no accidents. There was another diahorrea incident at a restaurant one evening, I pulled aside Jasmins nappy ‘to check’ and out flooded a river of poo – I stuffed a load of napkins into her nappy and we made a sharp exit! Jasmin slept beautifully whilst we were away, sleepy a lot in the morning but she’d been like this since she’d had pneumonia in July. She walked quite well and a fair amount, the best she’d done for a long while.

On the Monday after we returned Jasmin finally went back to school after 13 weeks off. She was very sleepy in the morning and her chest was quite noisy, by the next morning she was back on anti-biotics. Still no better by Friday, she was given a second anti-biotic to run alongside the first and had to use a nebuliser to aid her airways. Come Monday, her consultant admitted her to hospital. Jasmin had been aspirating, this is when food goes down the wrong way and lands on the lungs not in the tummy and causes pneumonia and infections. Jasmins swallow reflexes were poor and she was declared unfit for oral feeding. A naso-gastric tube was fitted and she was fed through her nose into her stomach. Jasmin stayed in hospital on IV antibiotics until Thursday then was discharged. Jasmin will now not be orally fed anymore; she will be fed via her NG tube until an operation is arranged for her to a gastostromy tube fitted directly into her tummy.

This was an extremely upsetting time for Dave and I and of course those close to us. Dave and I felt it was a major blow, a big degenerative sign of her MPS. Reality hit us very hard.

Whilst Jazzy was in hospital she had lots of visitors; Mia and Leila (her young cousins) came with Nanny, and Mia promptly jumped into bed with ‘Ja Ja May’ for a cuddle, bless her. Caroline, Jasmins one-to-one in school kindly came with me to take Jas into hospital, sat with me whilst they inserted the NG tube (YUK) then made a quick departure before the venflon was put into her vein! Juliana, Jasmins carer came and did some respite at the hospital so I could go home and have a shower. Jan, my pal brought me in a Chinese takeaway one evening and smuggled in a half bottle of wine! Mum was a star bringing me in a big hamper of food to keep me going. My Dad visited each evening and questioned the nurses no end about Jasmins care! ‘What I’d have done is…’ (Dad’s famous line!) My wonderful husband came after his long days at work with treats, hugs and support. Thank you to you all for being there.

We brought Jasmin home along with 2 huge boxes of machines, liquid feed, syringes, the list goes on…. She also had an enema whilst in hospital as her bowels had failed to open for 6 days, she has to have an enema if it happens again. I came home competently trained in NG feeding using the pump and by gravity, able to test stomach ph, oh and able to give an enema!

Whilst in hospital, Orthotics came and fitted Jasmin with day and night leg splints to keep her ankles and feet from turning inwards. She’s tolerated these really well, but I don’t put them on at night – too much!!!

Monday 2nd October Jasmin celebrated her 8th birthday, she had a lovely day at home and opened her presents and cards and enjoyed seeing her visitors. On the Sunday she had a big birthday party with all of her friends and family, Bob the Builder and Noddy! It was a super party.

Jasmin went back to school on the Wednesday, Thursday and Friday – Sunday she got a cold but was ok in herself, she was in school yesterday (Monday) but sadly today (Tuesday) she’s home again thick with cold, a snotty nose (not nice at any time but with a NG tube up it, even more difficult to breath) and coughing.

Saturday morning Jasmin pulled out her nasal-gastric tube! Mel, our wonderful respite nurse came round at 8am to insert another one. Jasmin wriggled loads during this procedure and when Mel pulled off some fluid from her tummy the syringe filled with blood! (Those who know me well will know that I faint at the thought of blood, let alone the sight of it coming out of my little girl!), so I joined Jasmin on the bed! A scratch to the back of her throat, not unheard of, caused the blood but it stopped bleeding pretty quickly and the tube ran clear. Big sigh of relief!

Poor Jasmin has been through the wars over the last 4 months. But she’s still managed to give us some beautiful smiles and has been giggling. Such a brave little girl, she’s not complained or cried, a real inspiration to all. Dave and I are so very proud of our darling Princess.

Please visit our new photo gallery www.23hq.com/ria -- ENJOY!

Monday, August 14, 2006 8:15 AM CDT

Hello everyone, my oh my it’s been nearly 6 months since my website was updated – I just have serious words with Mummy about that!

Unsurprisingly, loads has happened… I’ve been a bridesmaid for Auntie Ditty (Vikki) & Uncle Jason – it was a wonderful day, I looked stunning in my gorgeous dress and they even got a few photo’s of me running around the grounds of the hotel!

I’ve got hearing aids again, 2nd time lucky. I had them 3 years ago but kept pulling them out & eating them! This time I’m not bothered with them though, actually enjoy listening to what’s going on.

In May I went with my folks and Grand folks Heap to Croyde, Devon (UK), where we had a really lovely sunny week on the beach and I ate out in a restaurant – see the gnome photo’s tee hee!

In June I went abroad to Menorca with Mummy, Nanny & Grandad Bond (Daddy was working so missed out). I loved my first flight, just watched my DVD player & listened on the earphones to classical music all the way. They took me onto the plane on a special lift, which was pretty cool! The villa was great, I slept with Mummy, well I didn’t sleep but bounced about all night! The beach and pool were fab, I did lots of swimming, Even Grandad got in the pool which was a worry cos he cant swim so I had to look after him. I chilled out lots on holiday & lay out on the sunloungers with Nanny, but I didn’t get burnt like she did cos I had a sunshade!

July- July was yucky! I missed the last 3 weeks of school term cos I was so poorly. I had a seizure at school & had to go to hospital. Mummy & Daddy were flying back from Prague at the time so I had all 4 Grandparents frantically caring for me. I had ‘walking pneumonia’, oral thrush & a throat infection plus an EEG (brain scan) showed that my brain was frequently fitting loads but I wasn’t showing any signs on the outside??!! = more epilepsy medicine. Had to change dosage though cos it made me sleep all day! A bit of a worrying novelty for my parents.

I’m over the infections, bacteria’s & virus’s now and my fits are under control now, finally but my legs aren’t too strong – have to be held to walk about now. I’m having leg splints fitted on Friday & am still waiting for my special bath & hoist (NHS take note!!). I’ve got a new wheelchair on order too which reclines & has a head rest so it’ll be better for me on my travels. Also, waiting for a new hi-lo chair for the house, a bigger one which is easier to move about cos Mummy’s got a bad back from lifting me for the last six weeks.

I’m smiling & giggling again now though, and have been to stay in Wales with Nana & Grandad Heap where they spoilt me rotten with breakfast in bed every day!

During the holidays I’ve spent lots of time with my little cousins, Mia (2 ½ ) and Leila (8months). Mia came with Me, Mummy & Daddy shopping for a TV at the weekend, she wheeled me about in my wheelchair and sat me in front of a huge flat screen (the one Daddy wanted but couldn’t have!), then she hunted herself out a chair and sat beside me and we watched TV together! Then I turned all the shops tellys off cos Mia gave me a remote control to play with! In B&Q Mia was really funny cos she saw a showroom bathroom and wanted to wee in the toilet – she didn’t know it wasn’t a real one – but it was really funny watching Mummy & Daddy trying to stop her pulling her trousers down!! Baby Leila laughs at me a lot & I pull her about. We’ve got a new baby in the family as of 2 weeks ago, baby Tyler Ri Alan, I haven’t met him yet but he best beware!

Leave me a message please, lots of love, Jasmin XXXX

FROM MUMMY- Wow, it’s been an amazing emotional roller coaster over the last 6 months it really has! Jasmin in & out of hospital, reviews for new equipment with her huge mobility issues, splint casts, seizures, pureed food… the list goes on, BUT ends on a very happy note –JASMIN IS SMILING AGAIN – BLISS XXX

** Special Thanks - To Shannon Mercer for raising funds for Jasmin at her salons open evening.
To (Auntie) Kath Heap and all of her school crew for raising a whooping 1,500.00 for Jasmin!
These funds are in Jasmins trust fund and were planned to be used for a special car seat, however Jasmins too big for those now it turns out(!?) and we're having to have the car adapted for wheelchair use as the monies will be used for this.
Thank you so much XXXXXXXXXXXXXXX

Tuesday, February 14, 2006 4:58 AM CST

J a s m i n M a y

Our Valentine

On the 2nd October 1998 a special earth angel was born
A beautiful little girl we were adorn

A mass of dark curls with eyes so bright
Our love was sealed instantly that night

You light up our days with your stunning smile
Spreading love & inspiration all the while

A sparkling cherub always full of delight
Your face so pretty; always cheerful and bright

A spirited being, full of energy and spark
Amusing and fun in daylight and in dark!

Your infectious giggles and incessant laughter
Are heard and remembered forever after

Jasmin May our most precious treasure
You came into our lives and changed us forever.

Our beautiful daughter, whom we adore
We love you each day, more and more.

All our Love
Mummy & Daddy
X X X X

Monday, February 6, 2006 4:46 AM CST

A belated Happy New Year to you all! December has a very hectic month for me especially at school- we had a great time making Christmas cake, cards and decorations, we had Xmas dinner, a party, disco, entertainer and the nativity play were I made me lead role debut as Mary! I round looking super in the dress Nana made for a long head-dress and me.

We spent Christmas in North Wales at Nana & Grandads and had lots of fun and food with all of the family. On Xmas day morning I got up at 2am…exciting stuff this Christmas lark! I opened my prezzies at 5am in bed with Mummy & Daddy – I had loads and loads of wonderful things. We had a New Years Eve party at home with nanny & Grandad and family; Mia and I stayed up till 10pm and I slept in the next morning till 8am – Mummy & Daddy were really pleased with me!

School had been great fun again this term; I’ve got another swim session so I now go 3 times a week. I went on a trip to the National Waterways Museum and dressed up in olden day clothes- seethe photos! I’ve got lots of things coming up to look forward to; half term with Nana & Grandad, Bridesmaid for Auntie Vikki, a holiday, mini-break and a another wedding = all before June! I’m going to handover to Mummy now who’s going to fill you in on all the boring bits about me!

Lots of Love Jasmin XXX

Hi All, Where shall I start? I’m really not sure as I’ve been up since mid-night (again!), as Jasmin thought it was playtime and spent all night bouncing on her bed, laughing and singing!
The last few months have been a bit of a roller coaster with Jasmins condition. We saw her specialist Dr Wraith in November, we asked about Jasmin ‘dropping’ down suddenly thinking it was her hips again but were told it was neurological =’drop down seizures’. J was already on medication for night seizure activity which has worked brilliantly but she was dribbling really badly especially at night, her bed was soaked; Dr Wraith said this was a side effect from the drug so we’ve just spent 7 weeks weaning her off this drug and onto another which is at higher dose to combat the drop seizures, and guess what? She’s still dribbling terribly! But, the drop seizures are almost totally controlled now. Because of the risk of ‘grand mal’ seizure Jasmin’s been prescribed a medication that we have to carry with us at all times and have been for training in how to administer. We are going to have resuscitation training soon too. It’s pretty scary prospect grand mal but its imperative that we know how to deal with it should it arise and know to call 999 on the 1st dose in case of allergic reaction.
Jasmin has got more specially made boots (which incidentally split after 10 days so had to go back for repair which took 2 weeks!?), they’ve got built up bits on the sides of the heels to try to keep her feet flat on the floor and lefts straight as her ankles are terribly rigid from the MPS and her legs tip inwards from the knees hindering her walking. Physio has given us exercises to do with Jasmin but she hates having her feet touched so that’s a bit of a no go! Jasmin is still very able bodied although when we’re outdoors she has to be held on reigns at all times to save her from falling. She’ll still walk a fair distance but does tire quicker now.
Jasmin is having increasing problems with choking, it’s a trait of the Sanfilippo that swallowing degenerates as liquid and solids can go down the wrong way, Jasmin even chokes on her own saliva at times – hence the worry of the dribbling. She has been closely monitored when eating and drinking, and it has been found that she doesn’t always swallow her mouthful, and she doesn’t always chew, she tends to mash food on the roof of her mouth with her tongue. We’ve now taken to mashing / pureeing most foods to aid her feeding and use a thicker in drinks so that she’s less likely to choke.
Sleep… what’s that???? Well, it’s pretty awful presently (was it ever good I ask?!), J has 2-4 bad nights a week, sometimes, like last night being up for most of it! But, she’s always still happy and has bags of energy – unlike Dave and I; we’re so tired out at the moment, can’t remember feeling this exhausted. We’re away this weekend on our own for a break at a hotel by the sea for a much needed rest!
I’m going to tell you briefly about Genistein; a soy extract which is a natural product. It has been found from a study in Poland that when used with Sanfilippo children it can slow down the regression, some children ware walking better and some regained some of their speech. We started Jasmin on this on the 28th January. Alongside the genistein we are complementing her diet with vitamins that work alongside the work done be the genistein, so Jasmins daily medication/supplement list is now bordering an A4 sheet and the kitchen is a hive of bottles and oral syringes! We’re hoping with all of our hearts that the genistein with help Jasmin – fingers and toes crossed that it will.
Take Care all, remember to leave us messages in the guest book, they are always lovely to read.
Love Maria xx

Thursday, October 20, 2005 3:27 AM CDT

Hi There, Sorry it’s been so long since I’ve written – been a very busy summer – I’ve had 3 holidays and a birthday!
The first week of the school holidays I went to Somerset with Mummy, Daddy and Nana & Grandad Heap – we had lots of fun. I took my special tricycle and rode it a lot around the site and along the seafront and I went to the beach.
I spent a week in North Devon at Nana & Grandads house and saw lots of my relatives, I did lots of walking and spent lots of time playing in the field and riding on the quad bike with Grandad.
I had a week in South Devon with Mummy, Daddy, Nanny & Grandad Bond, Auntie Ditty (Vikki), Uncle Jason and Measle (Mia). The weather was lovely so we spent loads of time on the beach - Mia was scared of the sand which was all a bit odd, but she got better as she realised that to keep up with me she’d have to walk on the sand! We ate our dinner side be side, Mia in her high-chair and me in my wheelchair – I kept reaching over and nicking Mias dinner, to which Mia enhanced her ‘cutie factor’ by tilting her head to one side and gently saying “No, No Ja Ja’. When Mummy calls to me ‘Jasmin May’, Mia copies and calls ‘Ja Ja Maaaaaay!!!!’
Whilst I was away on my hols my bedroom was all changed about and French doors were put in, which is great as I can look out at the dogs in the garden. and I’ve got my own bathroom now too! I say dogs because we’ve now got a 2nd dog, a black 18 month old lab called Darcy, she’s really nice and Honey and her get on really well, it’s very funny watching them play fighting – I like to join in this game!
My friend Georgia, who’s got the same condition as me, came to play in the summer, we got on really well and played on the trampoline, swing and in the garden. Georgia’s got her own new bathroom too – it must be the ’in thing!’
I had lots of trouble during the nights this summer more than just not sleeping, lots of seizure activity. Two weeks ago I got some new medicine for this and since then I’ve slept all night! Amazed? Mummy and Daddy were! It’s made a huge difference to us all.
I giggle and laugh every waking hour nowadays, everything is funny! Once I start giggling everyone must see the funny side of things too cos they all start too! My legs are very wobbly lately though, and I fall down a lot more and can’t get back up by myself. This week in school I had a nasty fall from the steps on the slide, and landed on my face, it hurt, I cried. The school nurse sent me to hospital for a check-up, I was fine but have got a few bruises, fat lip and swollen nose – my nose isn’t as bad as Daddy’s though, he broke his at football on my birthday, and had two pretty coloured eyes! The next week he was poorly again at football, he had stitches in his leg and was wobblier on his legs than me!
Uncle Neil married Auntie Kellie in September; I wore a beautiful flowery dress and pretty hair bands to the wedding. Mia and I had great fun running away from the man with the camera that everyone kept smiling at!?
On 2nd October I became 7 years old, I had a super-duper party, which was themed for the Jeans 4 Genes charity, so I wore my groovy pleated denim skirt. Loads of people came; family, carers, parents and 28 of my friends. There was a big bouncy castle, ‘Jake & Bella’ from the Tweenies came and danced with us, Auntie Kath did face painting and Nanny Bond made us a huge delicious tea. I had a cake with candles and everyone sang ‘Happy Birthday’ to me – it was a wonderful day.
I’ve had some lovely days out with Mummy & Daddy too, we went to the Cotswolds villages and to the Arboretum - I had lunch in a pub! This is the 2nd time I’ve done this in 2 months; Mummy & Daddy must be feeling very brave!
I’m back at school now and am in the same class as I was last year with the same teacher Marilyn, and of course, my wonderful one-to-one Caroline is always with me. I actually break up for autumn half term today and am off on another holiday, to Nana & Grandads.
Looking forward to reading your messages,
Lots of Love, Jasmin XXX

Tuesday, June 14, 2005 6:47 AM CDT

Hello! I’ve been so busy playing in the sun that I haven’t had time to write. I’ve been spending lots of time in the garden with my lovely long legs on show in my pretty summer clothes. I have some new pads to wear on my legs to protect my knees when I take a tumble; they’re not very attractive so Mummy’s going to ask Nana to ‘pretty them up for me’. Alongside these, I have some more new special summer boots, now they are cool – Rose pink with cute flowers down the sides. They have velcro straps as the laces on my last boots were a right pain for everyone, literally, as they took so long to do up I’d get bored so I’d put the boot in!!

Mummy has decorated my garden summerhouse painting the inside pink and putting Tweenie and Pooh Bear stickers on the walls and… it’s got a t.v & video in it! Been on my trampoline loads, I’m really enthusiastic about it and keep getting on it on my own by pulling out the step that’s hidden underneath it – This certainly gets everyone quickly on their toes!

I’m quite into football at the mo, no not playing it, no watching it on t.v. with Daddy. We did lots of shouting and jumping about when Daddy’s team Everton beat Manchester United. Daddy said something about ‘ whipping their bottom ?!@?!@”

Nana and Grandad Heap came to visit mid-May and we had a cake to celebrate Nana and Daddy’s birthday. I spent some time during the half term holiday up at Nana and Grandads and they kept me really entertained and I saw Auntie Kath, Chester the funniest dog every, great-Grandma and my cousins Evie and Ellie.

I’ve got a new respite carer who comes to play one afternoon a week. Her name is Juliana and she’s a German lady. She says lots of funny German phrases to me, which makes me laugh a lot!
At school assemble I was given a ‘star’ for being brave. This was because I swam without my swim jacket on. Get me!

For Mummy’s birthday, Daddy organised a surprise BBQ and lots of family and friends came round. He also a surprise notice in the local newspaper about Mummy being 27 again (!?) and a photo of her at 18 dressed as Minnie Mouse - Mummy wasn’t smiling about it so Daddy blamed me cos it said Happy Birthday love from Jasmin – Nice one Daddy!

I went to see my specialist Dr. Wraith recently and he wanted to see my legs in action so he took off my shoes and socks and I had to run about with my dress tucked in my nappy! Very elegant, not!
Dr. Wraith said that the reason that my legs turn inwards and I trip over my feet is because of muscle wastage in my outer tendons, which is due to my condition. He doesn’t want to operate so he’s going to give me botox (yes BOTOX!) injections in my legs to loosen the muscles. So. My pins are going to be even more beautiful than they are now! Nanny Bond has kindly asked me to save some botox for her forehead!

My friend Georgia, who has the same condition as me, came to play the other day. We smiled and laughed together, went on the trampoline together and I helped push Georgia on the swing. It was the first time we’d ever interacted with each other and our Mummy’s were really touched.

Had a super day on Saturday, Auntie Ditty (Vikki) came round with Measle (Mia), we went for a long walk and great-Auntie Jane came with us too. Mia had a good old scream in the pushchair so I pulled the parasol over her head! We went to a fete and got lots of new books and we played in the garden. Mia has this uncontrollable love for me - it got the better of her in the end and when I was sitting quietly watching t.v she jumped me! She ran over yelling ‘Ja Ja’ and pounced onto me and kept kissing and hugging me. I just let her get on with it and laughed at her!

I’ve just found out that I’ve got an allergy – I heard Daddy tell the nurse – I’m apparently allergic to sleep!?!? What’s that all about? It’s too light outside at night to be lying in bed listening to Disney ballads! Quite good fun having Mummy & Daddy visit me throughout the course of the night though! Mind you I’m a bit fed up of the phrases ‘Lie down Darling’, ‘Sleeptime’ and ‘ Night Night’!!

Well, that’s my lot for now, if you’ve got any news or messages for me please jot me a line on the message page Lots of Love, Jasmin May xxxx

Tuesday, April 5, 2005 10:37 AM CDT

Hi,

School has been lots of fun this term; I’ve been on quite a few school trips. I’ve been to Seven Springs (Severn Springs is a superb facility for special children, there is a huge slides that come out of trees, swings with special bucket seats, trikes, a soft play area, sensory room and a huge field). I took a packed lunch in my ‘Rosie and Jim’ lunchbox with me. It was quite a wet day so I got nice and muddy running around in the field with Caroline (my full-time one-to-one support worker) at school. Last week we went to Robinswood Hill for the morning then onto MacDonald’s for lunch! Now that’s what I call school!!

Mummy came into school one day for my ‘review meeting’ – it was all good news, I’m doing great – no bad reports for this little girl!

On Red Nose Day, I went to school dressed as a clown – have a look at the photo gallery! I had swimming in the morning so most of my face paint is in the GL1 Leisure Centre pool!
I’ve been busy making cards with Caroline in school too – a Good Luck card for Daddy in his new job, a Birthday Card for Nanny Bond and a beautiful Mothers Day card for Mummy.

I go swimming every weekend with my friend Kristian (and our parents!) in Daddy’s pool(!). We have a really brilliant time, we make lots of noise and we sing songs when we are in the spa pool. Kristian brings his little Postman Pat model to play with in the pool and I sometimes take Rockit or Fimbo (they are from the Fimbles – if you don’t know this then you need to tune into CBeebies – you do not know what you are missing!!) – Ask Grandad Heap he sings all the theme tunes!!!!. Next week I’m going to be going swimming in Daddy’s new pool at his new job – I make my debut on Saturday afternoon with Mummy and Daddy, we aren’t taking Kristian on our first visit, Daddy said something about ‘breaking the staff and members in gently!?’.

I see a lot of Nanny and Grandad Bond during the week. I sleep over at their house on a Monday night. Nanny picks me up from home and takes me home with her for my tea then Grandad comes home from work and plays with me till bedtime. On a Tuesday morning I sometimes see Grandad before he goes to work, if I’m up!?! Then Auntie Ditty (aka Vikki) arrives with Mia. Mia has to share my breakfast. Mia always wants to be with me, she’s always calling me – ‘Ja-Ja, Ja-Ja’, she wants to sit in my wheelchair, she wants to wear my clothes, basically she’s ‘Ja Ja’ mad! Then Nanny takes me to school with little Mia in tow of course! Wednesday, Nanny picks me up from school, and takes Mia and I out for a long walk with Cola her dog. Mia goes in the pushchair and I walk alongside holding to it and I help Nanny hold Cola’s lead. Nanny’s a bit bionic isn’t she??!!

Last weekend I went to James Hopkins Trust for the afternoon with Mummy and Daddy. We had great fun in the garden and in the soft play area. My respite Nurse Mel was there that day so was my respite carer Karina, so I was given lots of attention!

We spent Easter Sunday at Nanny & Grandads, all of the family were there, it was a really sunny day and I wore the Easter bonnet that I’d made at school and Mia wore some fluffy pink rabbit ears – for that we got lots of chocolate!!

Hope that you are all well, looking forward to reading your messages,

Love Jasmin xxx

Message from Mummy; web links to Jasmins school & respite centre are now on the front page.

Friday, March 4, 2005 4:59 AM CST

Hi, well what a very hectic half term break I’ve had…

My break started with a party - my friend Becky’s 6th birthday party; I went on the bouncy castle and ate chips – a perfect afternoon!

On Valentines Day I received two cards (more than Mummy!) – one from my Daddy and one from Nanny & Grandad. I stayed with Nanny & Grandad that night at their house

I travelled up to North Wales on Tuesday to stay with Nana & Grandad. They live in a bungalow, which is great for me because I can run the length and breadth of the place. I build up to a really good speed racing from the lounge, along the hallway finishing with a huge bouncing session in a room with a big ‘trampoline’ in the middle of it!!! (They call it their bedroom!?!?!?).

That Tuesday was a ‘very’ busy day – I actually saw 9 of my relatives in one day! I saw all four of my Grandparents, both of my Aunties, Cousin Mia, my Great Grandma and Great Uncle Brian! (11 actually if I included Mummy & Daddy!). There was much excitement for me that day that I decided I didn’t need to sleep, no, much more fun to stay up and play!

Nana & Grandad have a big paddock at their place, and I love it! I spent hours walking, running and now skipping (!) up and down it. I was really helpful to Grandad – I stamped on each of his many molehills, I really enjoyed doing this, and did it everyday meticulously! I got very, very muddy!

My Godfather John and his baby daughter came to visit too, baby Harriet crawled about - I was nice to her (even though I don’t particularly like babies), and gave her a toy of mine to play with. Harriet then went to sleep, so I went off up the paddock for to do more mobile pursuits!

Mummy took me on the quad bike round the paddock, we went round and round and up and down, it was brilliant fun. Honey my dog, chased the quad bike and I laughed & laughed at Mummy trying not to run her over!

Daddy gave a lovely bath in the Jacuzzi bath, he put lots of bubble bath into it and put the spa jets on really high and there were masses of bubbles. Daddy put them all in my hair and made me a bubble beard!

Whilst away I did lots of walking - along Llandudno promenade, all around the lanes, hills and woodland. We went to Delemere forest with Auntie Kath and her mad dog ‘Chester’. I love ‘Chester’, he runs around like a nutter, nearly as fast as me, (only nearly though!). I chased him round the bungalow, round the paddock, through the woods and anywhere else he went - it made me laugh so much I kept falling down in fits of giggles.

My cousins Evie and Ellie came to play one day. We had a great time playing in the paddock and on the slide. Ellie is a lot smaller than me and I find that really fascinating, and have to keep looking at her! Great Grandma came with them too, so did their Mummy Louisa.

I’ve been really affectionate recently, I do the occasional hug, have been letting people kiss me and giving out kisses (first time in 6 years!!). I’m a good little kisser, I must be cos people keep wanting to kiss me. My technique is sorted now – I open my mouth and lean forward! I’m busy watching TV whilst this ‘kiss thing’ is going on, I add lick - for good measure! Mummy & Daddy don’t seem to mind at all whether I lick or dribble my kisses - they say something about ’having waited years for my kisses and cuddles’. And now, they don’t seem to be able to get enough of them!

Hope that you are all keeping well, and have enjoyed reading about my antics.

Love Jasmin May xxxx

Thursday, February 10, 2005 7:39 AM CST

Hi Everyone, how cool having my own webpage!

This is a great way for you all to see what I've been up to,see some photo's (these are a bit out of date but will be updated soon) and send me messages.

I've been very busy so far this year (surprise surprise!). I've had a lovely weekend away in North Wales visiting Nana and Grandad Heap - Grandad didn't know we were going up, it was a birthday surprise, so he had quite a shock to see me march in shouting 'Ello Dradad!'.

I've had a yukky cold and virus which has made me quite poorly, but fingers crossed I'm on the mend now.

The doctor has changed my sleep medicine and since I've been sleeping abit better (much to Mummy and Daddys delight!), but I've had a few 'blips' where I haven't slept - last Tuesday night I stayed awake ALL NIGHT, jumping and singing! (Mummy and Daddy weren't singing though?!?!?!).

I stay overnight with Nanny and Grandad Bond one night each week which is fun - I nearly always sleep well when I'm there! I've been playing with my little cousin Mia who is 16 months old. Mia really loves being with me and I love to push her over, one nudge and she's down, she wails really loud and it makes me laugh ever so much!

At the weekend, we went walking up Crickley Hill with my best friend Kristian (Kris goes to my school), we had lots of fun and got really, really muddy.

I go out walking alot now, I'm really good and walk a really long way. I have my reins on to stop me from 'legging it!'. Every day after school I go for walk up our lane, everyone knows me now as i've be-friended them by grabbing their hand as they walk by and join them on their stroll!

Last day at school today then it's half term, we are going to see Nana and Grandad Heap - I'll let you know all about it when I get back.

Big Hugs, Jasmin xxx

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