Last year (2018) was a good year in respect of very little hospital stays, lots of various hospital appointments.

Shay is now in his palliative care suite at home after amazing fund raising efforts by everyone close to shay and also an amazing charity called Joni's Army.

Shay has been invited to various events, for his hospice, and for people / organisations who want shay to help them with their cause. 

Shay was interviewed by the Guardian Newspaper re a new Microsoft (X-Box) adaptive controller. I have attached the article.

https://www.theguardian.com/games/2018/dec/18/childrens-hospice-video-games-adaptive-controller?fbclid=IwAR0OyE2O9w0nkMgxTZgx6UMbuIdIXt552ZlxAm3HW4YXwrd92yBNrzaZTQk

Update since March 2017

Since our stay at Keech Hospice shay has had lots going on.

We started fund raising to convert and extend our garage into a palliative care suite for shay. Shay has given his input into what he would like in this suite, a tv screen for a Xbox, Play Station and his normal TV, I think he is expecting his own house lol.
The plans have been drawn and shay cannot wait to get his own room. I will update with this conversion as this is going to help assist in his health. The fund raising has been done in numerous way, please look at Shay's Facebook page @buildforshay to see all the fundraising events which have already taken place.

With Shays health his hearing has got worse so now requires hearing aids, he is now using a power wheelchair more which requires more and more.

Shay is now seeing two more Doctors at Great Ormond Street.

I will do my utmost to put more updates, photos on this blog.

Please feel free to follow his Facebook page.

Keech Hospice stay

Shay has just had a nice visit to Keech Hospice, a fantastic place where he has fun, and can forget about him being different to others. The nurses adore shay and he has them wrapped around his little finger, he will also do whatever they ask. If a nurse says jump, shay will jump for them.
As normal with any hospital stay shay will laugh at the bed I have to sleep in, well on this occasion he laughed more than normal.

As normal with any hospital stay Shay would laugh at the bed / chair I would be given to sleep in. Well on this occasion he laughed more than normal.

I cannot say enough about how good the staff were. Shay had a nurse with him all the time. They all spent time with Shay, wrote his notes up, played numerous types of games with him and games he would not normally play. It was just nice to sit back and watch him have fun and play, be like child without anything hooding him back. 

The first nights sleep was not a good as it could have been, he was awake for some hours, asking for his Ipad every 15 minutes. The second night he slept so well, even slept until 730am.

The day we left, within seconds of leaving the hospice, he started to complain of his headaches. To me this just showed how the hospice managed to make him feel special and important.

The first day after his stay, he is complaining of pains in his muscles, all the muscles he used over the weekend.

What a special weekend for Shay. Now back to school which he adores, time with his friends.

Update so far this year March 2017

Shay has had a busy year so far, a Lumbar Puncture at the start of January, this was due to his stroke like episode. He has seen a Neurologist, ophthalmology, endocrinology, gastroenterology team, palliative care team and a appointment with his local consultant.

We are awaiting the results from the Lumbar Puncture, this is important as this will help tell us what medication needs to be increased to try and help Shay. Whilst having the lumbar punch shay had numerous consultants  pop into see him. As a result of this we had short notice appointments with the consultants from neurology, gastroenterologist and endocrinology. The consultants have been very good, they all mention that the treatment is supportive. The gastro consultant was brilliant and shay took to him, they spoke for ages about football before mum and dad could speak. This doctor arranged for a day of tests which happened last week, so awaiting the results from this, GOSH send the tests to a outside company.

The ophthamology was what we were expecting, his sight has deteriorated again, this appears to happen every 6 months. He has been diagnosed with night blindness.

If you follow this page you will get notifications of when the page is updated. We have recently started a Facebook page called Buildforshay, this has been started to raise awareness of his syndrome, along with charity events to help raising money for a palliative care suite for Shay.

If you have any questions please comment/ email and I will get back to you.

Upcoming Operation and facebook / twitter / YouTube account details

Hi all,

Shay is having a operation next week, a Lumbar punch to measure the fluid levels in his brain. His Professor arranged this urgently due to a stroke like episode a couple of months ago. The Lumbar punch in general is not a big operation, but for a Mitochondrial child it is a big operation.
Shay had one done just over a year ago and we said he would not have one again unless it was very important. This was due to how long Shay took to recover from it, shay struggled for about  5 days.

Hopefully we have covered all bases this year and he will get the medicine he requires straight after the operation.

I will try my utmost to keep this blog updated. You can also follow shay on his facebook page just search for 'Build for shay" he is also on Twitter @Buildforshay. Shay really wants to be a YouTube star so we have only just created his channel so please subscribe for all his videos on YouTube.

Shay will keep you updated more than me as he loves recording everything, I will promise he will have you laughing.

Please comment or contact me if you need to ask anything.

Overnight hospital stay.

On Saturday shay was about to go to bed when I noticed that his right side of his face had dropped and he was talking out of the left side of his mouth. A few questions to see if he was feeling and tingling or pain in his body and we had went to hospital.

Unsure as to what caused this, shay was admitted overnight for tests for a mini stroke. Sunday morning he had a MRI, the tests revealed he did not have a bled on the brain.

Now a waiting to see his professor to see what caused this.

Shay was his normal self, laughing at the bed I was given for the night.

 

Long Awaited Update

I am sorry in not updating this blog for some time.

Since the previous update shay has not had any hospital admissions, things have been happening but overall shay has been keeping well. He is always smiling, laughing and having fun, even winding people up when he is feeling poorly.
He has a fantastic sense of humour, this is something which keeps everyone relaxed.

Shay's eyesight and hearing is still declining, and should be getting a hearing aid very shortly, he has been getting a new prescription every 6 months for new glasses as he is struggling to see in daylight hours due to the brightness, he also struggles to see at night.
I can walk into his room and walk right beside him and he will not see or hear me.

Shays leg muscles are getting weaker and uses his new power wheelchair more and more. When shay gets home from school and goes straight up to bed he is normally joined by his beloved German Shepherd, Holly. They have a fantastic connection, holly licks shays painful legs, and shay says this helps him.
Shay is currently in love with Supercars, always screaming in the car when he sees any.

Please feel free to message me on this to ask any questions, I will try my best to update shays blog, but we have been very busy with numerous appointments. If you wish I can PM a email address to keep more updates.