Something Inside So Strong

Hi everyone.

Just a quick update for you.

I’m typing this up on Saturday morning which means that 4 weeks tomorrow the day of the triathlon and the culmination of our training and fundraising will have arrived. That’s a bit of a scary thought. When I start these fundraising efforts of mine I tend to sign up for the event months and months in advance and then get spooked when,all of a sudden, I realise  that the day is almost upon me. This is no different! 4 weeks to get my training done, 4 weeks to decide which of the various styles of breaststroke that I have attempted suits me best, 4 weeks to get the t shirts printed with a team photo, 4 weeks to panic basically. Bring it on I say. I know I can do this, I know our team can do this and I’m excited to prove that I’m true to my word and will give this the best shot that I can.

However…..always a however……despite my best efforts I have not increased my swim sessions. It’s been difficult to fit everything in to be honest. That must and will change. I did go for my usual Wednesday night splash about where I tried to swim more under the water and where I practised gliding through my breaststroke. I swam another 30 lengths but didn’t push myself to go as fast as possible. As usual, it’s more important to me to do the lengths I need to do and take as long as it takes rather than try to go too quickly, get tired and not finish. Tortoise and the hair and a bit of the Taurean stubborn streak I think.

I have had more positive responses to my request for raffle prizes and I’m thrilled about that. I am not sure if I am going to be organised enough to have finalised the draw to coincide with the triathlon as I had expected to but I promise that I will get on top of it and get a plan in place as soon as I can. When I have organised it properly I will be shouting about it from the rooftops so that everyone has a chance to take part. Of course, all funds raised will go the SCBU at Royal Surrey County Hospital just like the triathlon fundraising total.

I hope that I will be able to update you with a team photo in the next blog. On Monday our cyclist, our runner and I will be in the same place at the same time so it will be an ideal opportunity to take a photo or two. There is an outside chance that the babies and their Mum and Dad will be there too and if I can get a photo with us and Phoebe and Sam all together that would be fab. Fingers crossed.

I can’t go into much detail about what is currently happening with the twins and their Mum and Dad. All you need to know is that it’s been a very difficult, very worrying week. Phoebe and Mummy are both poorly. Everyone is exhausted and the reality of just how difficult  life can be sometimes seems to have hit home. We are all doing everything we can to support the family until they are back on an even keel again but these things take time. One thing is for sure, my daughter is strong and so is Phoebe. Kirsty has proved that over and over again throughout her life and I have no reason to doubt that she will come back fighting again once she is rested and has her confidence back. Pheobe is her mothers daughter. That little poppet has already shown us her strength and resilience in the 3 months that she and Sam have been with us. Stay strong little one. Stay strong Mummy. We all love you more than you know.

Love Nanny xxxx

http://uk.virginmoneygiving.com/phoebeandsam

Hut Happiness, Bouncing and Babies

Good evening all.

It’s been a busy week again. I haven’t seen the twins yet this week but that will be resolved tomorrow when Pheobe has two more hospital appointments in the afternoon – one with audiology and one with the dietician – and Mummy has asked me to accompany them. I also spend most Wednesdays with Mummy and the twins so the hospital appointments have fallen nicely this time.

I can tell you that the twins had their second lot of jabs today and that they were both weighed. Both have gained weight which is fab news  especially following the feeding difficulties that young Phoebe has been having. 

The triathlon is a mere 6 weeks away and is all starting to feel very real. As a consequence, and because I have had a little more time to spare, I have been trying out different types of exercise over the last two days. Yesterday I went trampolining with the runner in our triathlon team and we bounced ourselves silly for as long as we could. I’d forgotten how exhausting trampolining can be. We had an hour session and after half an hour we were both pooped. We stopped for a drink and a breather and then returned to bouncing. We also attempted the foam pit and tried shooting hoops while bouncing too. I was rubbish at both! We didn’t try out the dodgeball area. That would have been too much for me even if I knew what I was supposed to be doing!

   
 
Today saw me head to my beloved beach hut which is my pride and joy and my solace when I need to clear my head and relax for a bit. I haven’t had the chance to get there for so long. I haven’t been there since the twins were born that is for sure. It was absolutely wonderful to be there again.

   
 
I was given a wetsuit by one of the neighbouring hut owners last year and I have never tried it out. Today, despite the water being  very chilly, I decided to take the plunge. I put on the wetsuit and headed for the water. Yes, I went in the sea. Yes, I swam..eventually!…Yes, it was very cold and yes, I am mad. But it was exhilarating and I was so pleased with myself when I had done it. I know it’s not a lot but it is a form of exercise, it was different and I felt it was an achievement of sorts. Every little helps as they say.

   
 
On to fundraising matters. I checked our page today and was amazed to see that we have already raised over £500. Isn’t that incredible?! And we still have 6 weeks to go. See for yourselves……

  
Our target is now £1000 and, do you know what, I think we might do it. I think we might actually raise £1000 for SCBU. 

The raffle that I mentioned in the last blog post is gathering momentum. We now have donation prizes  from 2 supermarkets, offers of flower arrangements and now the incredible offer of 2 tickets for a Disney park valid for 1 year! How amazing is that? I am hoping to get a few more prizes guaranteed and then I will start to organise everything properly. 

The other exciting thing….. for me anyway….is that one of my favourite singer/songwriters, Frank Turner, retweeted the details of our fundraising page on his Twitter account. He did the same for me last year when we completed the Surrey Three Peaks challenge. What a good man😊👍😍

  
Everything is going in the right direction with this challenge and I am beyond thrilled and grateful for the support that we have had from so many people. Tomorrow evening, after my time with the family, I will do my usual Wednesday evening swim and I won’t have to scare you with the after swim photo as I am posting this a day earlier than usual. Lucky for you!!

Please do let me know if you know of anyone who would be able to donate a prize of any kind to the raffle and please feel free to share this link and spread the word about our challenge.

Have a great week folks and thank you for your support for  and of myself and my wonderful family💗💙

Oh, and I can’t go without mentioning that one of my daughters and her husband completed their first marathons at Brighton on Sunday. Well done guys!! Xx

   
 
  
Night night from Phoebe and Sam 
Love Nanny xxxx

http://uk.virginmoneygiving.com/phoebeandsam

Tougher Than The Rest

Hi folks and thanks for coming back for more!  Yes, more ramblings, more unloading my fretting mind, more blowing my own trumpet about my weight loss and exercise. Actually, that makes this blog sound dreadful and I really hope that you don’t find it too much to read. Thank you from me anyway for at least taking the time to check in and read this far even if you don’t read any further.

Firstly, the triathlon training update. Our cyclist has invested in cycle wear and is concentrating on building himself up for the big day. He doesn’t have a spare ounce of flesh on his body and he definitely cannot afford to lose any weight. High protein meals and snacks are high on the agenda at the moment because he is going to need a lot of energy to complete the 20+ km bike ride in 6 weeks time. Our runner now has use of a home gym which has been set up in his living room so there is no reason for him not to train and keep motivated. I have had my usual Wednesday evening swim which was good this week. I wanted to time myself for my 500m (20 lengths of the local pool)  but got sidetracked by thinking too much and lost count of the lengths that I had done so I either swam 21 or 23 lenghts (that’s 525 or 575m) in 23 minutes. Whatever the actual distance, it was hard but it was a little faster than I had swum before so I was very happy. I then swam another 10 lengths leisurely and enjoyed a more relaxing time while my swimming buddy swam her 24 lengths and continued to up her game in pursuit of health and fitness. Go Rosie! You keep me going when I really don’t feel like I can do it. Thank you xx

Prepare for another post swim horror pic but it does prove that we did it….

Secondly, the proposed raffle idea that I have been thinking about….I have already received confirmation from Sainsbury’s and Tesco that they will provide me with a prize to raffle and my son in law and a family friend have offered to provide hanging baskets/floral displays too which is fantastic. This means that there will definitely be a raffle and that I definitely need to get my bottom into gear and start organizing it properly. The logistics  of selling the tickets, collecting the money for tickets, actually getting the tickets and doing the whole thing properly is important but also slightly overwhelming. If anyone has any ideas please do let me know. Also, importantly, if anyone reading this would like to give me a prize to raffle, if anyone reading this works for a company who could provide a gift to raffle, please do let me know. Thank you.

Thirdly, the other day I gave a little bit of thought to team t-shirts for the triathlon. i enquired about having t-shirts made up with photos on and the cheapest quote I could get was £80 for 12 shirts. I then thought that I should contact the fundraising dept at the Royal surrey County Hospital to see if they had any t shirts to spare and yes, they did!! I don’t know why i didn’t think of it before and so, today, these arrived….

….5 t shirts bearing the hospital logo. One each for the three of us and one each for Mummy and Daddy. All I need now is a suitable photo of the twins to get put on the back of each shirt and we will be sorted.

Finally, and probably most importantly in all of this, the twins and their family. It’s very difficult for me to use the right words and to keep a lid on my emotions when I type about the four of them, especially at the moment when things are a bit up and down. I could type away for hours about my thoughts and feelings and about the almost hourly highs and lows that the family have to deal with every single day so I will try to be brief, succinct and not overly personal…that’s the bit I have trouble with.

Overall, the family are bearing up. Daddy continues to work and then take over from an exhausted Mummy when he comes home every day. Mummy is wiped out and just about at the end of her tether which is totally understandable when you consider what she has to do and to deal with every day. Lack of sleep is not helping and it’s impossible to sleep, no matter how exhausted you are, when your mind is racing and full of anxiety and worries. I know. I have been there.

Sam is doing fine as ever. He’s such a lovely boy. He is feeding really well, often too well and too quickly as the post feed sick shows us! Mummy and Daddy think he is teething and he is as strong as an ox. Long may that continue.

Darling Phoebe is a totally different girly these days. She is  much more alert and responsive which is wonderful. She looks so gorgeous in her array of pink clothes. However, concerns are still there. In actual fact, it seems that her main issue at the moment, her feeding, is not connected to Stickler Syndrome at all but to reflux. The two conditions are not related. As a consequence she was put on lactose free formula last week but it really didn’t suit her and made her more sick and uncomfortable than she has been in weeks.

She was then put back onto her usual formula and was prescribed more antacids which have to be dissolved and then put down her tube. The worry of the tube blocking with these tablets was a big issue for Mummy who really felt unable to do it herself. Phoebe has now finally been prescribed the liquid form of the medication. Why on earth wasn’t that prescribed in the first place? Let’s just hope that the medication works because there really isn’t anything else to try. Apparently babies outgrow reflux but to see a little one arching her back in pain and shaking her little head from side to side after 20 mls of every feed is heartbreaking and exhausting for all involved ….and this happens every 4 hours, 24 hours a day, 7 days a week.

However, this week I did take some fabulous photos of Phoebe and many of you will have already seen one of them but I’m going to share it again with you because it is just so beautiful. It makes me smile every time I see it.

Well, there we are. It’s taken me ages to compose this and check it and re read it again and again.

Thank you again so very much for reading this, for supporting the twins and their Mummy and Daddy, for supporting us in our triathlon efforts and for being all round good people. I know I am probably a pain at times and  that I drive people mad but I promise that I only ever do what I do for the right reasons. My heart is always in the right place even if it may not seem like it at times.

Love Nanny xxxx

http://uk.virginmoneygiving.com/phoebeandsam

 

 

 

 

 

 

A Day At A Time

Hi everyone and welcome to another instalment of this blog which is basically all about me trying to raise awareness of Stickler Syndrome, promoting our fundraising efforts by taking part in The Guildford Triathlon at the end of May for SCBU at The Royal Surrey County Hospital and also to keep folk updated about the general progress of the beautiful Phoebe and Sam and their Mummy and Daddy.

Firstly, Wednesday  evening saw youngest daughter and I do our regular swim. I had spent most of the day with the twins and it had not been the easiest of days. The thought of going swimming was really the furthest thing from my mind and about the last thing that I wanted to do. However, I didn’t want to let my daughter and loyal swimming buddy down and I know that, to do the triathlon and the twins justice, I need to just get on with it so that’s what I did. I didn’t time myself but just made told myself to get the 20 lengths in and then it was done. In the end I swam 30 lengths, adjusted my style of swimming by putting my head under the water more often which seemed to make me go faster, and felt rejuvenated by the time I had finished. Swim buddy Rosie also swam 24 lengths….this from a girl whose target just 4 weeks ago was to swim 10 lengths. She’s a star!

  

I have also been proactive on the fundraising front by contacting businesses and companies to see if any of them would consider making a donation  to our chosen charity. I  posted letters two days ago and I have already had a phone call from Tesco offering their support! They are going to donate a hamper which I will be able to use as a raffle prize. How brilliant is that?! I was delighted and a little overwhelmed to receive that phone call if I’m honest. I could have cried. What a wally!! It does mean, of course, that I will be organising a raffle, and possibly another event, after our triathlon efforts. You have been warned!

Now, onto the twins and their progress. I am delighted and very relieved to say that they were both weighed yesterday and both are doing well. Sam now weighs just under  a stone(!) and Phoebe has gained too and now weighs 9lbs 1oz which is a huge relief following her disappointing weight gain of two weeks ago. I’m sure Mummy and Daddy are very relieved with that news. Phoebe has also had another appointment at the eye clinic where the results were inconclusive. She is very young to accurately assess. Suffice to say we have to go back in 3 months time. 

It’s been a very trying time for Mummy and Daddy and the extra concerns about young Phoebe have made life difficult at times but, one thing is for sure, Mummy and Daddy love those little ones so much and, whilst things must feel daunting and scary at the moment, things will get better. The babies will eventually start to sleep through the night, Phoebe will start hitting her milestones and life will start to return to some kind of normal….although not the kind of normal that they are used to. Those days are long gone and life will never be the same again! A daunting prospect I am sure but an exciting one.

  
Sleeping beauty

  
Handsome boy and we love his shirt!

  
Twins💗💙 10 weeks old

  
Bright lights and bright colours set up by Mummy as a form of sensory stimulation for Phoebe…….who loves it as you can see…….

  
Parenthood is tough. It’s wonderful but it’s tough. Just when you think that everything is going ok, something else comes along to remind you to never take things for granted. Parenthood is an emotional roller coaster at the best of times and even now, some 32 years after becoming a Mum, I am still learning. Being the parent of a child with any form of additional needs is incredibly hard. I know that from my own experience. The constant stream of medical appointments, the constant visitors and phone calls, the never ending forms and paperwork that need completing, the permanent worry that you aren’t doing enough, that you are letting your children down is always there. However, children, with or without special needs, add so much joy and love to our lives constantly. The worry never really goes away. The worry just changes. As Phoebe and Sam’s Nanny,  I can honestly say that I am in such awe of their Mummy and Daddy….but especially of their Mummy, my own special baby,  my first born. Her strength and determination never cease to amaze me. Her courage and bravery often go unnoticed. She is thoughtful, kind, generous and loving. She is a wonderful big sister and a fantastic daughter. She is now an amazing Mummy too. 

Have a love lovely day everyone.

Love Nanny xxxx
http://uk.virginmoneygiving.com/phoebeandsam