Care For Katie-Lou

Apologies for not posting more frequently, we seem to have been very busy of late. Theres been a whole bunch of fund raising events recently for which donations havent been fully collected. We’ll update on all the great (and in many cases painful) efforts made by people recently once totals have been added up. Katie-Lou…

Many thanks to Patrice Reid and her line dancing club who raised a whopping £500 at a recent line dancing evening!

The brethren of the Mayflower lodge kindly donated £200 to The Care For Katie-Lou trust.

Many thanks to Rob Wills, Katie-Lou’s primary school teacher from Ivybridge ,who recently ran the gruelling Chagford Challenge, 30 miles across Dartmoor! He raised a brilliant £275 for Katie Lou’s trust fund.

Lothian & Borders Police G Division raised an amazing £700 for Katie-Lou’s Trust Find at their annual charity quiz night at the Ladhope Golf Club, Galashiels. The team raised money for a number of local beneficiaries and we are delighted that our friend and PC, Kirsty Nash was kind enough to put forward Katie-Lou’s Trust…

Giacopazzi’s in Eyemouth are launching a brand new flavour ice cream especially to to raise funds for Radio Borders ‘Cash for Kids’ Charity which raises money to help disadvantaged children in the Scottish Borders and North Northumberland. One of the beneficiaries of the Charity this year is the Care for Katie-Lou TrustFund. The brand new flavour,…

Cash for Kids is the official charity of Radio Borders and provides a helping hand to disabled and disadvantaged children around the Scottish Borders and North Northumberland. This year Cash for Kids day is helping to raise money to build a sensory garden and chill out space for Katie-Lou as well as to provide grants…

Katie-Lou has had a couple of busy weeks. Her Uncle Rob, Auntie Julie and cousin Jodie made  a surprise visit and stopped with us for a few days. It was nice to hear how much difference they can see in here since last they visited. We also had our friends Lynnette, Jon & Tashy visit…

A bunch of people have said recently they didnt realize the Care For Katie-Lou Trust had a Facebook page. It does! If you want to follow Katie-Lou’s progress and are a Facebooker you can find it here www.facebook.com/Careforkatielou

Out and about with the local celebrity on Saturday! Katie-Lou had a motor fitted to her chair last week and Saturday was the 1st day we got to take on the Eyemouth hills so we had a nice afternoon wandering about the village which we haven’t done in ages. Loads and loads of people stopped…

Crystal presented ourselves and Katie-Lou with a cheque for £1300 today. Late last year she was very brave and did a pub crawl on her own dressed as Mrs Clause with a collection bucket in hand and did a very chilly boxing day dip in the North Sea. Thanks Crystal for the really big effort!

Katie-Lou had an unexpected trip back to Sick Kids this week. Her gastrostomy tube blocked on Monday night so we couldnt get any medicines, food or water into her. Tuesday morning we were back at the hospital having the tube unblocked. It was nice to see the staff again that we havent seen  since we…

SCA Hygiene Products UK donated £200 to Katie-Lou’s Trust Fund after being nominated by Catriona Carson. The money was raised through the sale of redundant stock to a number of local busineses on the Prudhoe Industrial Estate in Prudhoe, Northumberland.

Many thanks to Michael, Martin and other members of the Berwick Coastguard raised  over £500 by running the BUPA 5k in their coastguard overalls at Edinburgh recently. I was presented with the cheque tonight at their station. They are a nice bunch. I had a little tour of the station and the lads told me…

Many thanks to Kirsty and friends who organised a fantastic fun day at the Clovelly Bay Inn in Plymouth last wknd. There was live music, a bbq, games of all sorts and everyone seemed to have a great time! Though we couldnt be there we had a video tour on skype of what was going…

Ramparts MOT Centre are proud to announce that we will be sponsoring Brenda Dixon for the following runs – Barcelona Marathon 17/3 26.2 miles Dunbar 10k 6/4 Rock ‘n’ Roll 14/4 13.1 miles Edinburgh Marathon 26/5 26.2 miles Hadrians Wall 16/6 13.1 miles Northumberland Coastal Run 14/7 15-16 miles Great North Run 15/9 13.1 miles…

Many thanks to Mother In Law and the ladies at Ridgeway Methodist Church who had a coffee morning and raised £366 for Katie-Lous trust fund.  

Katie-Lou had daily physio in hospital to help with her Dystonia and lack of movement (Jill in the pale blue uniform below – just one of the stars in Sick Kids!) Katie-Lou’s dystonia is nowhere near as bad as it was partly because of physio but also controlled by medication and the fact she is…

Katie-Lou seems really relaxed since she got home and she was in fits of giggles when we cuddled up on her bed this afternoon. Is so nice to to see her like this. Theres lots of the old Katie-Lou coming through and shes amazing!!!!

A nice lady knocked on our door and gave me a box with this in! It’s even got Larry on it! I was so taken aback I didn’t even ask who she was. If it was you im sorry for being so rude please let me know who you are so we can thank you…

Fittingly a number of brave and alert people were honoured on Katie-Lou’s birthday at a ceremony in Edinburgh this week; Charlene McCulloch, PC Brian Smith, Clare Waller and coastguard Norman Richardson for their part in trying to help Katie-Lou and Tempany in June. We know there were also others who also did their best on that…

Our girl is 15 today. We’re having lunch out and she’s going to have lots of visitors this afternoon no doubt! Happy birthday child x

At short notice we were told that Katie-Lou’s could visit Tuesday & Thursday this week, then at even shorter notice we were told she may not have to go back to the hospital on Tuesday and could stay home. We got her back yesterday afternoon and have been enjoying spending time with her again in…

Looks like we’re finally getting our girl home next week! All being well next Tuesday we can get her home for a day visit accompanied by hospital staff and then on Thursday, maybe an overnighter, which barring any issues could be a permanent move home The house is 95% done, good enough to get Katie-Lou…

KL had a little operation last week, you can read about it here from Nik and we’ve also been told that she has Autonomic Dysreflxia (identified by her recent EEG readings) which scared us to death when we Google’d it but  apparently isn’t life threatening or too serious in Katie-Lou’s case but does potentially account for…

Just to update you all, Katie-Lou had a little operation last Thursday to change her PEG (feeding tube) to a Button, the change is more for cosmetic purposes really as the Button is much neater as fits close to her tummy however the PEG  is a long tube.  Unfortunately the op didn’t go to plan…

We had a nice surprise today. Unbeknown to us local artist Heather Brown had been working on a painting of ‘Larry’, Katie-Lou’s long suffering favourite teddy. Larry has been on Katie-Lou’s bed almost every night of her life and he’s certainly seen some sights and gone through some trauma of his own in the last…

Katie-Lou started 2013 in isolation with a nasty virus but she’s doing better and doesnt have long to go hopefully before we get her home. She’s been doing some more smiling and giggling recently as well as wiggling her feet increasingly. The speech and language therapist, along with play nurse Margagret was convinced she was…

Well 2012 sucked to say the least. January 2012 saw the start of a new life for the Maclean family in Scotland and it started great. June 2012 saw the start of an even bigger and lifelong change. Katie-Lou will start 2013 in isolation on ward 7, she’s still getting over a virus but im…

Despite not being very well at all and in isolation Katie-Lou has been wiggling her feet alot recently. Yesterday she really seemed to be trying very hard to wiggle and kick her feet, something she has been doing in the last month but not as convincingly as she was yesterday. KL moving anything, unless startled,…

Unfortunately Katie-Lou has been suffering more than usual over xmas. On top of all her other issues she has been recovering from a chest infection and now has a nasty virus which is making her violently sick. The girls on ward 7 have had a little buffet setup over the xmas period and have helped…

Sharon Honey & the staff of Co-Op, Chaddlewood in Plympton raised £374 for Katie-Lou. Thanks ever so much.

Not content with dressing up as Mrs. Clause and collecting money on a pre-Xmas night out Crystal Chui raised over £1300 for Katie-Lou’s trust by freezing her bits off in the sea off spittal beach in a sponsored boxing day dip. What a brave lass!

A very merry Christmas to everyone thats supported Katie-Lou and ourselves this year. Have a good one. Love Andy & Nik xxx

Well Done to Crystal Chui who raised an amazing £500 around Berwick-upon-Tweed pubs last night dressed as Mrs Clause! Well done & Thank you!