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Team Toby update 2020

Well the little man is going from strength to strength despite a few hurdles along the way and in the last 12 months in particular. Starting with a couple of chest infections and some hospital visits, one was especially nasty in the spring of 2019 and then towards the end of the year Toby was diagnosed with a mild pneumonia. Both required extended stays on the paediatric ward in Southampton but, as ever, the care was amazing and he soon bounced back. In amongst all this Toby had a steroid injection in his ankle and major hip surgery, both under GA. His recovery from the latter has been slow but with weekly physio we remain hopeful that he will at some point be able to bear his weight again when he is lifted onto his feet.

And now the good stuff. He continues to develop well and is always bright and happy. His communication is extraordinary and he has an uncanny ability to understand what’s going on. He loves getting out and about and particularly enjoys holidays. He’s been on a ferry across the Bay of Biscay 3 times, he’s enjoyed long car journeys across France and Spain, and he’s been on planes to Europe, the Caribbean, the Middle East and Australia! The way he takes all this in his stride is inspirational. He loves people and places.

This year he was going to cross the Atlantic on a P&O cruise but corona virus has put pay to that. He has instead been subject to shielding at home and had the misfortune of two further hospital visits. The first was unplanned when he developed an infection and ended up in A&E just when the virus was at its worst. That was by the far the scariest hospital experience we’ve ever had and we were mightily relieved when we found out he didn’t have it and we were able to get home. We had to beg the Doctors to let us out! The second was further steroid injections in the hip and ankle under GA again. Thankfully this was all very well managed and he was home within a day. 

We have since bought a hot tub which has been one of the best things we have ever got for him (although admittedly Mum and Dad like it as well!). It was intended to be a bit of fun whilst he was stuck at home but it turns out it has been much more than that. Not only is he beside himself with excitement every evening at 5pm when it’s “bubbles” time but it also relaxes his muscles meaning that he sleeps really well and wakes up each morning as bright as a button. It has officially topped the chart for best Toby purchase ever just above his 3 wheel buggy and cycle adaptor. We have spend many evening during lockdown cycling around Chandlers Ford and despite coming home caked in flies and other muck, he keeps wanting more.

There is no question that Toby’s contentment and successful development is largely due to he team around him. That was truly in evidence at his recent 13th birthday party. Thank you so much to everyone that attended. The support he has extends so far and wide that we are really humbled by it. He has touched so many people with his broad smile and cheeky sense of humour and enriched the lives of his Mum and Dad a thousand times over. We are so hugely grateful to everyone and everything around around him. His life might not be conventional but it is hugely rewarding. Our wish as he moves into adulthood is that this continues and that he is never isolated or lonely. He may never be able to call or email you but he will always be your friend!

So what next? Who knows... We’ll take each year as it comes as we have done for the preceding 13 and look forward to whatever is around the corner. Stay tuned to Team Toby to find out!

Wow 2 years since we lasted updated, where has the time gone?

Toby's eating has gone from strength to strength and we have finally been able to kick his extra supplements of milk. His favourite food is pasta, pizza and bacon sandwiches. He even has the odd school lunch.

Toby has recently had another sleep study, unfortunately the results weren't good enough for him to come off overnight oxygen. It has however been confirmed that it's now his CP that is causing this and not his lungs.

Toby's communication and understanding is coming on in leaps and bounds, and so is his speech, we have been getting a few more words coming out too - DaDa, turtle, cuddles, done, ginger and no to name just a few. In recent weeks, Toby has also started learning phonics at school.


September 2015

Nearly a year has passed since our last update. In that time, we are seeing quite a difference in Toby.
Toby has finally started putting on weight and is now 18.2 kg which is great news, this is mainly due to the fact he has finally started eating better and so much more and even received worker of the week this week at school for his amazing eating.

Toby remains on overnight oxygen and we are still trying to work out why, but it may be due to his latest diagnosis of Paradoxical Vocal Cord motion. Various ongoing tests will hopefully give us some answers.

Amazingly we are finally also getting some speech from Toby.  At the minute, it's just the odd word, but hopefully in time we may get more. His understanding is definitely coming on in leaps and bounds.

November 2014
Toby has now started in his new class in Juniors at Shepherds Down. He is loving it and has already come on in quite a big way.  His communication aid is now in school everyday. Toby has learnt to count by clicking and is demonstrating yes and no by smiling and poking his tongue out which is such an achievement and certainly enables people around him to understand what he is wanting.

We are still trying to work out why he requires the overnight oxygen and are once again awaiting results from yet another sleep study, although this a more in depth one than he has had in the past.

Toby had a minor hip operation in March, which went really well and has made a big difference to him, his movements and his ability to use his walker.

February 2014
Toby has settled well into Year two at school and is especially enjoying using his Electric Wheelchair, which was generously purchased for him by Whizz Kids.  Cant believe Toby will be a Junior come September.  We will find out in a few weeks time if he will stay in his class or change.  I have very mixed feelings about it, so will go along with what the school recommend.

The latest purchase from Team Toby is the Tobii Eye Gaze equipment, which we hope Toby will communicate with in the long term.  It is harder than we thought to use, but both Mummy and Toby are spending time getting used to it and will hopefully be experts in the not to distant future.

Toby has had a sleep system introduced at night and we had hoped this would be the answer to him coming off overnight oxygen.  Sadly this hasn’t happened and he still remains on overnight oxygen.  His actual sleep however has improved slightly since he started using the system.

Toby is due to go into hospital in the next few weeks for a minor operation on his hip, in the hope we can stop his right hip from dislocating any further.

July 2013
Toby has just completed Year one at school and is very much looking forward to starting Year two in September.  This will bring change as his teachers sadly retired last week, so we are looking forward to meeting his new teacher and hope he will remain as happy at school as he has been the last two years.  Sadly Toby finished at The Rainbow Centre a couple of weeks ago, but we felt the time was right to concentrate on his schooling.  We would however like to thank The Rainbow Centre for everything they have done.

The highlight of Toby's year was an amazing week we had in April which involved meeting Samantha Cameron, Mickey Mouse and The Duchess of Cambridge.  A week we will never forget and has created amazing memories for us.

Although Toby’s operation went well last year the sleep study showed he needed to remain on overnight oxygen, which is a shame, but hopefully further studies will show he can come off it in time.
Toby has been using the Eye Gaze communication aid at School for the past couple of months now, so we are very keen to purchase one for home in the near future.  Our other immediate aim for Team Toby is the insurance and maintenance warranty for an electric wheelchair which Whizz Kids are very kindly funding.

October 2012
Wow its been a year since the last update. Sorry about that, I guess with the move and just generally looking after Toby things have got behind.

Toby, Alastair and I have settled very well into the new house. We have now agreed all the details of Toby's adaptions and hopefully it won’t be too long before they are started. Toby has settled very well back into school, now a big boy in Year One. He is also loving his Friday sessions at The Rainbow Centre.

Big developments in Toby's life are his walking in his walker, which is coming on really well, and the use of the toilet, which is also coming on well. This is a major milestone and something we never thought would happen. He still uses his nappies, but at least he knows what he needs to do when we do put him on the toilet.

Toby was diagnosed with Sleep Apnea in the spring. He has now had his tonsils and adenoids removed and has coped amazingly with the operation and recovery.  We now await a repeat Sleep Study and hope the removal of the tonsils and adenoids will have cured his sleep Apnea.

17th September 2011
Toby started Shepherds Down Special School yesterday, which was an amazing milestone to have reached.  The first comment in his home/school diary from his teacher was  " A wonderful start... a happy, responsive and confident little boy"  we couldn't of asked for more.

18th April 2011
We are delighted to confirm that Toby has now been offered a place at Shepherds Down School in Winchester. This is the school we wanted him to attend so are delighted that he has been accepted. Toby is doing very well and continues to improve physically and mentally every day.

Toby came off oxygen in October 2010 and has been doing amazing well without it. This has made his life much better and our life caring for him much easier.

The Walker which was purchased from Team Toby funds is being used more and more and Toby is now spending up to an hour playing in it which is great progress. Toby has started using a computer at Pre School which is something we are keen to encourage and have recently ordered the necessary equipment to enable us to encourage this further at home.

We would like to thank everyone for their continued support of Team Toby.