Team Reggie

... and how it ended!

Back in his own bed.
He's doing OK, not perfect but good enough to be home. An uncomfortable few days ahead weening back onto feeds but we'll all take each day as it comes.

Thank you everyone for all the well wishes, beautiful messages and all round awesomeness. 🤗

How the day started, how its going...

Look at all our local superstars!

Reggie was feeling a little worse for wear but he's starting to feel himself again. A few slow days ahead but everything went well, so fingers crossed our stay isn't too long.

Awesome to see all the support from you guys today as always. Too many to show but here are just a few from today. Can you spot your socks?

Not to forget the stunners from Ackworth Road Runners

All ready and waiting for surgery, just time for one last selfie rocking our socks.

Show us yours. 📷🧦

Reggie saying bye bye to his little brother ready for the big day.

Remember to rock your socks tomorrow 🧦

1 day to go until World Down's Syndrome day!

Here is just a few of photos from people supporting past events or showing their support for World Down's Syndrome day. Can you spot yourself in any?

What will you be doing tomorrow to show support and spread awareness? Can't wait to see all your posts wearing your TR tops or odd socks in many different places, the gym, at work, in a meeting, out running or even in bed.

Please share away and get your friends and family involved 🤗

Today Reggie spent the day at nursery.
Unfortunately he won't return until he's recovered from surgery so his wonderful friends and early years educators have made this lovely poster for World Down's Syndrome day. Thank you all for the awesome support

Sunday funday!

Every couple of months Reggie, along with other members of Wakefield & District Down's Syndrome Support Group go have a few hours fun at soft play. We call this Sunday funday and Siblings are also welcome at this event. It is all funded through WDDSSG.

The group also runs other events for various age categories throughout the year as well as offering support to parents, siblings and other family members. Once a month we also have Saturday club where everyone can have a little bit of fun as well as take advantage of a private speech and language therapist that the charity fund.

If you feel you would like to support the group so they can continue to offer all this to its members, you can donate through the following.
https://www.crowdfunder.co.uk/p/wddssg-1155866?fbclid=IwAR2HMIT0sCSpFOzMSLqsajl09CtDPpOXDgsSKVgj65arVyLZywmgHG53xeI

Or simply text WAKEYDS to 70580
This is set to a standard £2 if you would like to donate more text WAKEYDS followed by an amount. For example "WAKEYDS 10" to donate £10

It's less than a week until World Down's Syndrome day and look who's got something to celebrate!

His very first swimming certificate and badge. It may have taken 12 months, (with many illness interruptions) but he did it despite how hard it can be for him as well as cautiousness that he doesn't swallow any water.

Stand by for tomorrow's antics. Told you he had a busy week ahead 🤗

Reggie has a busy week ahead. Today he had his last NG tube inserted. A week from today he will be having an operation to have a PEG fitted. This day will also mark World Down's Syndrome day. Join us in celebrating this special day on the 21st March and show your support for all our friends with an extra chromosome 21.

Reggie wanted to show everyone his sheep tape on his tube.

Some of you heard Reggie has glasses now and requested we post a pic. So here he is, rocking his new gigs and now much happier after recovering from chicken pox.

This brings back memories. Can you spot Reggie?
An insight from new parents of children with Down's Syndrome.

We have a lovely selection of stories and videos on our website from new parents talking about their babies: https://loom.ly/KL6XEvw

If you would like to share your story, we'd love to hear from you! You'll find all you need to know here: https://loom.ly/RZixMFA

After listening to the concerns of a number of our sponsors and due to not only illness but communication issues, we have decided to cancel the Skydive.

We are now solely fundraising for the trike. This means the target has now been reduced to £1600. Anything we raise over this amount will be sent to Wakefield and District Down's Syndrome Support Group.

The wonderful Safe 'n' Sound Day Nursery are having a sponsored pyjama day tomorrow to help raise funds which is amazing 😁

We wanted to give the ladies a shout out and say thank you for the money you have raised so far through the bake sale and online donations. We know a lot of effort went ito baking those yummy cakes Ella's Bakes . (If you only donated for the skydive and are unhappy with its cancellation please contact us and we can discuss options)

We're not far off our target. Please share 🙂

Help raise £2000 to Help fund a Theraplay tricycle for Reggie. Due to having poor muscle tone and difficulty balancing on a conventional bike. Weʼre raising money to Help fund a Theraplay tricycle for Reggie. Due to having poor muscle tone and difficulty balancing on a conventional bike.. Support this JustGiving Crowdfunding Page.

Today was penned in to be the skydive but unfortunately due to ill health this has had to be postponed. The good news is, it will still go ahead but this may be in a minimum of 3 months due to medical rules. We wish our participant a full and fast recovery.

The good news is, we're not at our target so we have a little more time to achieve it. Thank you to everyone who has contributed so far, and a special shout out to young Annabelle who shaved part of her hair off for the cause ❤️ . Anyone who still wishes to contribute towards the trike still can using the link below.

Help raise £2000 to Help fund a Theraplay tricycle for Reggie. Due to having poor muscle tone and difficulty balancing on a conventional bike. Weʼre raising money to Help fund a Theraplay tricycle for Reggie. Due to having poor muscle tone and difficulty balancing on a conventional bike.. Support this JustGiving Crowdfunding Page.

We would just like to share our appreciation of everyone that has donated and shared our post to help fund Reggie’s Theraplay trike. From the bottom of our heart thank you 🙂
A big well done to Ella and Millie on their bake sale which raised another £135 towards the total thanks to members of Ackworth Road Runners and Ackworth Cricket Club for contributing. We hope you enjoyed the delicious cakes.

Anyone who would like to sponsor still can at the link below. Please share with friends, family and colleagues and help us reach the target.

Help raise £2000 to Help fund a Theraplay tricycle for Reggie. Due to having poor muscle tone and difficulty balancing on a conventional bike. Weʼre raising money to Help fund a Theraplay tricycle for Reggie. Due to having poor muscle tone and difficulty balancing on a conventional bike.. Support this JustGiving Crowdfunding Page.

Thank you to everyone who has made a donation so far. The support has been overwhelming. Two ladies doing a skydive, Reggie's cousin shaving half of her hair off and now we've received a very very generous donation made in the loving memory of Reggie's Great Aunt Betty pictured below. This takes us just over half way 🙂

Anyone who would like to contribute, no matter how small can do via this link:
https://www.justgiving.com/crowdfunding/Team-Reggie?utm_medium=email&utm_source=ExactTarget&utm_campaign=20230720_

Some good news this week 😁

Reggie went for a tricycle assessment earlier this week and managed to try one out. The bad news is it costs a fair bit. The good news, two wonderful ladies have volunteered to do a skydive to raise funds for Reggie's tricycle.

Thank you Ella and Millie for your bravery 😬

Anyone who would like to sponsor and help us raise funds For Reggie's trike please use the link below. And thank you for your continued support 🙂

Ps, the bike will be blue at Reggie's request.

Help raise £2000 to Help fund a Theraplay tricycle for Reggie. Due to having poor muscle tone and difficulty balancing on a conventional bike. Weʼre raising money to Help fund a Theraplay tricycle for Reggie. Due to having poor muscle tone and difficulty balancing on a conventional bike.. Support this JustGiving Crowdfunding Page.

As you can probably see in the photos Reggie is finally starting to get his boisterous spark back. Everything is healing nicely now and his pain is minimal.

The NG tube is something we're still all getting used to and it's a long wait to have a PEG, so we have no choice but to persevere despite daily issues.

Although he's handling it like the trooper he is, his spark was lost after having it fitted, so we're over the moon that he's finally coming back out of his shell and finding not only his spark but able to start filling his happy tanks. We've got a long way to go but as you can see, we're on the right track. We potentially have a few more changes in the coming weeks but hopefully won't cause too much disruption.

Good News, he's home... again 🙄
Albeit in a lot of pain and very tired.

Hopefully caught the throat infection early and will recover on antibiotics, painkillers and lots of snuggles.

He's certainly on some roller coaster at the minute.

So here we are working really hard to get this chap recovering so we can post something really positive and motivating, and what happens?

Back to his second home! The last 2 nights have been horrendous for him. Paracetamol and ibuprofen are just not cutting it. It's looking like an infection is brewing so 24 hours observation, antibiotics and a pending visit from a senior ENT member.

I'm sure we'll get there eventually just not today and certainly not at any kind of pace.

He's home!! 😊

A bit of a restless night but not as heavily dependent on oxygen as the night went on, so after seeing ENT this morning we were given the thumbs up to return home. Fingers crossed he doesn't need to return tonight 🤞

He's one tough cookie. Now to isolate and recover. Big shout out to the amazing NHS staff that we've seen over the last couple of days, some of which, as always going over and above their call of duty.

And for the final post of the day, it has all come crashing down ☹️

I suppose we'd all got our hopes up that he was coming home today, but Reggie being Reggie doesn't do anything by halves. He's been reluctant to take a nap all day so we couldn't check his SAT's until he finally dropped to sleep at 6pm. Low and behold they dropped straight down and he is now on oxygen. He likes this place far too much! Other than that he's doing really well post-op, so hopefully this is just a blipp in his recovery and not a week or so stay like what has become the norm.

Thank you to everyone for the continued support and we'll wishes. Love to you all 💙

Out of surgery and recovering well!

After a nervous wait of double the expected time, Reggie is back and surgery went well. Apparently his tonsils and Adenoids were massive but have now been removed. He had one eardrum pierced to allow it to be drained and the build up of wax removed from his other ear this was made more difficult due to his tiny ear canals.
He is currently smashing back his favourite cheesy puffs after also having a Yolly. Luckily some of the solids he can eat are nice ones! 😋
Hoping he will have a nap so his SAT's can be monitored whilst asleep as this is when he struggles most. This also means he may be able to return home today🤞

T-Minus 13 hours for Reggie's operation. He must know it's an early start and a long day as he's never normally asleep for this time. Last sleep and last feed before the big day. We can't help but feel nervous despite it being a routine operation, mainly due to some of his other complications, but he assures us that he's strong 💪

Updates to follow, post-op.

Happy news! Reggie is back home and reunited with his partner in crime. It has been a testing few days, especially after Bertie became unwell. It's something that's going to take some getting used to but I'm sure we'll all adapt with time and support of the community nurses, dieticians & SALT. Now to prepare for the next challenge. 8 day countdown to his Tonsillectomy and Adenoidectomy.

Must give a big shout out to some very special friends that have bravely put up with Bertie's tantrums over the last few days. You know who you are and thank you so much.