One of those days...

Its been a funny old day so I thought I would put on a couple of nice photos before explaining why... The top picture was taken after Emma and Meg were let loose with the face paints and the 2nd one was at the Roller disco at the O2. Lots of fun!!

Emma has been doing so well post transplant that it came as a real shock on Friday when I was rung to say her creatinine had gone up. Before transplant the creatinine level was the marker for when she would need dialysis and the op as it is a sign of kidney failure. It is very hard to keep it all into perspective. The hospital tried so hard to reassure me that it was probably just a bug inside her that was making the level increase temporarily- just as it probably had in Meg and Greg, just that we wouldn't know as they are not checked every two weeks.

Anyway I had to take her back today for repeat bloods and an ultrasound on the kidney. They were sent as urgent and we then had 30 minutes to wait to hear if the level had gone down- a sign that it was a bug, or that it had gone up- a sign of rejection.

Thankfully it had gone down, what an unbelievable relief. This is going to happen a lot- all part of the rollercoaster ride we have now been on for 2 years. Am glad to have got the first time over with.

SO its back to school tomorrow for all 3. We have had a lovely relaxing Easter. Seeing lots of friends and family and generally not trying to do too much. Happy days!!

Happy Easter

The last time we were at the O2 Emma had just started on dialysis. GOSH got us tickets to see Disney Princesses on ice- a fantastic day. 5 months later we were there for the boys to watch.... Star Wars in Concert!!

They had a great time alongside many hundred other fans while me and my girlies had our own fun...... at the roller disco!!

They both loved it, Emma in particular being a star. I was quite relieved when they had had enough after about 20 minutes as I hadn't admitted to her surgery when we signed up!! I also then had a chance to have 10 minutes on my own strutting my stuff while they sat and watched in amusement! Such fun.

Emma's kidneys are still being well behaved. I say kidneys as her other 2 are still inside her hanging on in there alongside their new friend. It's just a shame that her ankles and knees are causing her such pain as her new kidney gives her more energy but her joints put paid to anything too energetic. Boo.

Happy Easter to everyone. Emma still has to keep her phosphate levels up so is chomping her way through her milk chocolate eggs happy knowing its doctors orders!!

Bye Bye Baxters!

Today a great big lorry pulled up outside our house and took away all the dialysis equipment! Much happiness at this momentous occassion.
Not much else to add on this exciting post. We now have space in the garage and Al no longer has an excuse not to go on the rowing machine!!

Emma is 9!

When the transplant date was first talked about back in October Emma announced she didn't want it near her birthday.

So a very happy Emma celebrated her 9th birthday at home with a well behaved 38 year old kidney still doing a fab job inside her. Hurray!!

Master Greg is 7

2 days late I know... but just to say Greg had a fab 7th birthday! In a nutshell- star wars, lego, kidsworld (Yuk!), cake, Roast dinner (thanks Nanny). Greg's 'perfect day!'

Surprise!!

'Hello' to all the die-hard blog readers!! Sorry it's been a while since I have written. No excuse really! Well it's now birthday season in the Beeden house and these pictures were taken on Meggies 5th birthday last Sunday.

Things are going ok. Emma is back at school full time and is also enjoying being back at Brownies, swimming and ballet. She really is quite amazing. She also has her 'grown-up' bedroom at last! Thanks to Nanny and Grandad and their professional wallpapering skills!

Next GOSH visit will hopefully be on the 11th- 2 weeks after the last one, our record so far.... They are really pleased with her results but still want to keep a close check on her.

Will blog again on 7th March when a certain young jedi turns 7!!

swim swim swim

Just to let you know Emma seems to have recovered from her bug. Her bloods on Thursday were a little wonky after her being sick so we have to go back again on Tuesday.
Reached a milestone this morning when all 3 children walked back through the doors of Polam for their swimming lesson with Su. Now, my children will never be olympic swimmers but I tell you I couldn't be more proud of them- they have all screamed, shouted and refused to swim in the past but thanks to their fantastic swimming teachers- especially Adrienne, Su and Aoife, they now happily go and always do their best.
So todays blog is in memory of the wonderful Adrienne who taught Meggie, Greg and Emma from 12 weeks old till they became tadpoles with Su, who now I am so lucky to also have as one of my amazingly supportive friends.

Yawn!!!

I managed to stay awake till 4:30am and then set the alarm for 5 and 5:30. After that I must have fallen into a deep sleep as woke again at 7:30! Emma woke up remarkably cheerful and had kept all the liquid and tablets down that I had been force-feeding her through the night! Phew..
So on 2hrs sleep we trotted off to London. The doctor checked her over and had her blood pressure taken 3 times- it was very low for Emma, most unusual. Bloods were taken and then we were sent off with strict instructions to ring if ill again. We then had an appointment to get her school shoes from the fab orthoptic department. But surprise, surprise they didn't fit and she found the new insoles very stiff and uncomfortable. As you can imagine she wasn't best pleased and made sure I knew it! Ho hum....
As we were leaving we... I mean 'I' was very excited to see Michael MacIntyre walking down the road. Emma refused to stalk him with me for a photo so instead we jumped into a taxi and headed home.
As far as I know the bloods were ok. The doc rang but just to check Emma still feeling OK. I should have asked but sometimes am too scared to ask in case they are aren't as good as last time.
Greg went off to the school disco this evening. Emma had to miss because of bug and she was also scared in case her side was knocked.
Nothing can stop us from being incredibly thankful that all has gone well (so far) but to Emma its missing school discos, class trips, Brownie weekends, swimming, ballet etc that really make her fed up and there is nothing anyone can do about it. It's simply not fair....

One of those days.

Hello all!
Have had one of those crazy days so thought I would update the blog to let you all know about it! At the moment me and Emma are in my bed, Emma sleeping soundly and me trying desperately to stay awake! At 8pm Emma decided to throw-up. BOO!! Its a bug- hot, cold, sick, miserable etc. I rang GOSH who told me to ring back if sick again. hour later... sick again. Was then given the option of going to Bedford hospital and being put on a drip or making her drink 50-75mls of water every half an hour all through the night! SO here I am, 2:10am doing the latter! Emma sleeps through and then opens her mouth for the drinking straw and tablet. She hasn't been sick since 9pm now, but there is still a lot of night to get through.
I have really enjoyed chatting to anyone who is awake round the world including an old school friend Tom in Australia, my wonderful teaching pal Kathy in New Zealand and Terrie my American cousin!
We are off to GOSH in the morning, so hope Emma is feeling up to it as has to go.
Before all this happened Al had his long awaited finger surgery. Al has dupuytren contracture/disease (AKA bent finger disease!) He came home with a very impressive bandage and splint and has to keep the arm elevated till Friday when he is seeing a physio. Sadly his other hand is also affected so has to repeat it all again in a few months time.
Its now 2:38am. Only 5 hours to go!!
byeee

Choo-Choo!!!

A very happy and independent Emma got on the 9:15 train to London with me this morning. Unfortunately there were no seats together so we spent the journey on the flip down chairs outside the loos!! An easy, hassle free journey got us to the clinic by 10:15 where Emma was given her normal checks. Her blood pressure was down to 100 which I was pleased about. She is still on one Bp medication. It would be lovely to be able to come off that and hopefully in time she will be. The doctor was very pleased with her and also very happy to hear she is back at school. Our next appointment is a week on Thursday... over a week away- Wow!





We then went up to Victoria Ward where we were very pleased to be able to present them a new laptop. This was bought by the staff of Life Plus (where Al works). Jane the play specialist and Clare, Emmas all-time favourite nurse was there to collect it from us. I know it will be much used and much appreciated. Jane is very keen to set up a skype webcam link between Guys and Gosh and this laptop will hopefully kickstart this plan.
Whenever I leave the ward I always think how nice it must be for parents to walk out knowing they won't have to return. Not that I am planning on being back at Victoria Ward with Emma any time soon we know they are part of our lives and always will be. Good job we trust and love them so much then!!


And here is Emma with a rather large fairy cake she spotted on the way home. Like mother-like daughter without doubt!!
We were home in time to get Meggie from school (Greg still suffering from boy-flu) thanks to Tracey for picking us up on the way home from work.

The blood results came at 5pm and were all good. Even the phosphate count was better. What a relief.

We are off swimming in the morning. Emma very keen to get back in the pool- and I, of course, can't wait.....! Warning to Polam Su, the Beeden's are back!!!

Katy

7 weeks later... back to school!

Emma went into school for 2 hours today... it was only going to be one but she enjoyed it so much was happy to stay. She is very self conscious about how the steroids have changed her shape and I think this is what was worrying her most.

As you can see a very happy Emma returned and she was full of it, especially the singing her class was doing. Her friends have been wonderful. Such a support. She even got a good luck card from one of them today- all these things have helped her so much over these really tricky weeks.

For those of you who don't know who Emma is with in the photo... this is the infamous Roz of the rambling but very funny comments! One of my many fantastic friends who continue to be there for me when needed. Roz is my second top texting pal. She has tried so hard over the last few months but has now admitted defeat to the worlds greatest texter..... come on down Mrs Erika Franks!

To add to the fun Greg came home from school at lunchtime after turning ghostly white after his packed lunch- sorry Miss Burraway! He then spent the afternoon on the wii recovering! He has got a nasty sounding cough when he gets going so poor Nanny and Grandad are on sick duty with him tomorrow- how lucky!!?

Me and Emma are heading down to London in the morning. It was only Thursday that we were last there but seems longer. Will see what her bloods are doing and whether they need to make changes again. Emma is very excited about being allowed back on the train again! I on the other hand got rather used to being chauffered around!

Katy

Oh we do like to be beside the seaside!

Hello we went to Kimmerdige crabbing but Greg forgot the kit so we went fossel hunting instead. Later we looked round a place called Tynum. This is a little village that was completely evacuated during thre war so the army could practise fighting. The old village school is just as it was during the war. We sat at the old desks.

Our new arrivals- NO Storm's allowed!

It's funny when I look at my lovely long awaited sofa and 'snuggler' (not exactly impressed with the 14 week wait Mr Lewis!) as when we ordered them Emma and me said how when we sat on them the operation would be over. I don't think from the day we were first told Emma would one day need a transplant did I ever actually believe them. But they were right and it did happen. Strange and not sure unless you have been through it like we have that you can really get what I am wittering about!

Ok day at GOSH. Another tacrolinus tinker. Doc very happy with her and permission given to return to school on Monday. Will take it slowly though. Aiming to perhaps be full time after half term. Emma also had an appointment with the orthotist today which was very successful and she will hopefully be just as keen when her new school shoes arrive made beautifully to fit her feet in 2 weeks time.

Arrived back in our VW passatt at 2:30 (not sure what happened to the Jags, merc's and BMW's!) to a DLA (disability living allowance) letter on our doorstep. Anyone who has applied for DLA will understand my complete frustration at the whole system. before dialysis- which started on 8th Oct she was on lower rate but once her care increased due to dialysis we were told she was entitled to higher rate. So nearly 4 months later the decision arrived..... yes she could have it but only from 8th Jan. GRRRRRRRRRRRRRR. So now I have the hassle of having to appeal- again. Harumph!

Going to stay with Baz, Shell and max for weekend. And all we need to take is a bag full of drugs! No dialysis machine, no fluids, no tubes, plasters, sterile wipes, swabs, caps, weighing scales, commode, blood pressure machine, sample bags, thermometers etc etc etc.

Living with a child with a transplanted kidney brings lots and lots of worries but not as much baggage as one on dialysis! Not easy but loving it that its going well and docs all happy.

Love a very comfortable katy!

Cousin Albie!

The 15th of December was a big day on 2 accounts for the Beeden's. Just after 1 in the morning cousin Albert (Albie) was born to Anna and Chris. And at last we met him at the weekend. Absolutely gorgeous as you can see!! With us being in and out of hospital and then Chris and Albie having chest infections meant we had to wait a very long 5 and a half weeks for the first cuddle. It was so worth the wait though- beautiful!

So we are now 6 weeks post transplant. Unbelievable. Every week me, Emma and Erika play "What were we doing 'however many' weeks ago". i wonder how long we will be saying that for? Emma still looking great. We were at hospital on Tuesday and her bloods just showed her phosphates were still too low. So they increased one tablet and just encouraged more and more cheese.... she isn't complaining though! Tuesday was very 'challenging' as it was also Greg's check-up. Although Greg has the same growth disorder he hasn't shown signs, thank goodness, of kidney failure. GOSH are keeping a close eye and will pick up any changes by monitoring creatinine levels. This of course means blood tests..... Emma is now the Queen of blood tests, but Greg...... lets just say it took 4 of us to pin him down! Now just waiting for the results.

I had my 6 week check at Guys today. Seemed really strange going back but was lovely to see Anita who was my Living donor nurse and talking to her about how well Emma is doing. I am also allowed to drive again- hurray!!! And can swim and walk to exercise. Just need to be told what this 'walking' means!!!! I don't need to go back for a year- I will be checked for life so they can keep an eye on my kidney function.

Tomorrow we are off to GOSH again, 3 hospital appointments in a row. Hopefully if all ok we will be able to travel by train from next week. And.... school on Monday for an hour maybe! Emma can't wait to go back, she has missed everyone so much.

Will try very hard to blog tomorrow- a big, greatly anticipated arrival is due.... am so excited!!!!!!

More News

To evryone



Today I made A bracelet I am walking more and will go back to swimming soon.
I hope to go back to dancing.

Lots of love from

Emma

Drain bag lady!

When Emma was still attached to a drain following the transplant she had to carry it in a rather unattractive brown stripy cloth bag held together by a bandage. I then had a brainwave to ask nanny if she wouldn't mind making the ward some new ones. She was more than happy to help and after about a week 25 had been made in a range of beautiful bright materials- from red london buses to glittery fairies. We are really looking forward to taking them up to the ward tomorrow. Thank you so much Nanny/Mum.
Off to hospital tomorrow. They are looking very closely at one of her levels which is a bit erratic. They have told me not to worry- its just them tweeking (again) and making it all perfect for her. I have been given instructions just to worry about being her Mummy!! I have been told!!
Saw Meggies teacher after school today and was so happy to hear how settled she is at school. I feel sad that this has all happened during her first year but she couldn't have been looked after any better. Thank you Oakley Lower your support has been incredible.
And.... I went out last night to the cinema. A lovely evening. And.... the beading ladies were happily reunited this morning. Not much beading done but lots of chatting and chocolate biscuits eaten. I so like being normal.... hope it continues!
Katy

Introducing.... Cousin David!

In case you thought it was just the Beeden's who had all the talent, well here is cousin David joining in the fun! They have obviously inherited their dancing talent from their Mummy's!!

Have been to GOSH today. Was really difficult as they had to say no to Emma's school trip next Monday. They want her to stay away till the end of the 6th week following transplant. I then announced to her and the doctor.... "At least you are having a treat tomorrow and having your ears pierced." To which the doctor then said "Not for 2 more weeks please." Emma was so, so upset about both things. It is so hard at the moment as she is looking and feeling great but it is still early on and as they keep telling us- she is doing so well they don't want to risk any infection at all. So we were both pretty miserable as we got in our bmw for the return trip home. (We were in a merc for the trip there and had the most fantastic- and funny- driver. he told us all about who he had driven and how last year he went to Suzanne Shaws wedding no less!!!)

When we got home we decided to tidy her bedroom in the hope that it will get decorated in the next two weeks. She wants a grown up bedroom. I am devastated of course as thought she would want Disney Princesses on her walls forever!

Love us all

Happy Christmas- again!!

We always planned to have a proper Christmas weekend once the operations were over and I just can't quite believe we made it! But here we are enjoying a fantastic Christmas dinner- thank you Mum and Dad. We all had such a fun time with Baz, Shelley, Max, Coz, Jim, David, Georgiana and Nanny and Grandad.
I think it may even be time to take the Christmas tree down!!
Can I just point out Emma's clean plate. Before Emma had her new kidney she would never finish a roast dinner and yesterday she had at least three helpings! A complete joy!

Beeden's Got Talent

As promised another video of Greg, Meg and Emma. Hope you enjoy!!!

Have had lovely few days at home. Getting picked up at 7 in the morning for our trip down to GOSH. So, so hope they are happy with her results and we can come home again! Especially as its Christmas this weekend! Baz, Shelley and Max are coming up and we will have our traditional Davies Christmas- can't wait!!

I walked to pick up Meggie and Greg from school today. It was lovely! And so wonderful to see and speak to all my amazingly supportive friends- I have missed you!

Will probably be a long day tomorrow as have the normal renal clinic but also a dietician and physio appointment. Luckily Mum and Dad are able to help yet again with meg and Gregs after school ballet and Street dance classes. It has made the world of difference them being able to carry on with their normal activities through all this.

Back to American Idol for me and my chocolate cherry liquers!! (Thanks Roz!)

Katy

Home! Hurray!

Well what an unexpected day!! We got to clinic this morning at 10 and were told we could go home after seeing the doctor and come back on Thursday. Emma's bloods have, thank goodness, been very stable so they were happy to see her twice a week. When we first went in to GOSH back on the 14th December I kept being asked when we thought we would be out and I honestly could not answer as it all depended on so many things. We are so thankful that she has kept well and so hope and pray that this continues....
So off we tootled to our lovely flat and wondered how on earth I would get everything packed and carried down to the patient transport desk by 1pm! I am not allowed to lift, pull, reach- blah, blah, for around 3 months so decided it would be an impossible task. We had accumulated rather a lot of stuff over 4 weeks, especially as Father Christmas had visited in the middle of it! So once again we called on Al to come and get us instead! (it was his first proper day back and he only lasted till 12!)- Thank you Life Plus once again!
Before we left we popped over to Victoria ward to say goodbye for now. The nurses there have been wonderful. They really are the best and continue to be a support to us all. We also saw Jane the play specialist (Meggie wants to be Jane when she grows up!!) Jane has helped Emma to understand so much of what she is going through. She has been amazing to all my 3 in fact.
As you can see in the photo the car was very full! We eventually got home at about 6pm (Via Brent Cross shopping centre-hee hee!) to a lovely welcome from Meggie and Greg.
And now I am sitting here wondering what to do about the blog.... I have become a bit attached to writing it in fact! Well tomorrow I will post another video of my beautiful children, but this time with sound..... and then I will see. I think I will keep writing it as I know this is only the start of our new journey- living with a kidney transplant. There are going to be up's but I know there could still be downs. We will still be in and out of GOSH as they will check out infections, coughs, temperatures- everything. They are so thorough in everything they do- and I wouldn't want it any other way.
Love to you all
Katy