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.

Latest Update

Again I start this off saying sorry for not keeping this updated.

Since I have last updated this back in January, shay has had lots of appointments, test and he takes everyone of these in his stride.

We have had the results of the Lumbar Punch and this confirmed our thoughts that the syndrome has now progressed into the next stage, meaning that shay has diagnosed as having Kearns-Sayre Syndrome. In very simple terms it means the condition has and will effect his brain. (A positive from this is that we know we have shay around for more years than expected). Shay has been given a medicine which helps slow down the effects on the brain, this has help in his memory recall.

Heart block is one of the main things that we are keeping our eyes open for as this is the next main thing that will effect his life.

Shay has had appointments at his specialist hospital checking his eyes and hearing, and the syndrome has now effected both eyes. Shay had a appointment 6 months earlier and on his latest test they have changed again, so new glass 6 months after his last pair. Shay still complains of pain to the front of his head, and even now a month after his last change of glasses he is complaining that some vision is blurred even with his glasses on and the headaches are back. Shay had a hearing test last month and I was expecting a change in this but not to the level we were told. Shay has is barely just under the level to have hearing aids. The results showed that one ear is worse than the other, his next appointment has been brought forward

Always waiting for more results

I am sorry in the delay, I do keep check on this site and please fell free to leave messages etc for shay. I will always try to answer any questions.

I find that we await results of tests but normally we never get a full answer, as it always opens up more questions. Normally we need to go for some other test to find out what the next step is or to find answers for the current test. So always on going tests and awaiting the next result and then the next.

In August 2014, I wrote about waiting for results of a MRI scan on Shay Brain. I was building myself up for a change in Shays brain, this was due to several things, his memory getting worse, speech, vision, bad migraines and more.
The appointment was a surprise but opened up more questions. His scan showed that it had not got worse than the year before, but this did not answer the question that other problems were arising. So now awaiting an appointment with a neurological consultant, a Lumbar Punch, more eye and hearing tests.

Our Pearson's Professor was happy with the scan, but puzzled with what symptoms he was now showing. Shay was booked in to have his Lumbar Punch at GOSH, normally a day surgery, but with he was booked in to stay overnight.

We arrived early morning for the operation, Shay took longer to come out of recovery due to vomiting. Shay was moved back to his ward after an hour or so, he did not recover like he normally does, he was struggling this time, sleeping, not want to play or even eat a sweet. His feeds went on but on a extremely slow rate. He could not even tolerate this, he would vomit everything back up. He was getting extremely bad migraines , so bad that he just wanted to sleep, whenever he woke he would get sick with the pain.
Shay was on very strong painkillers but this was helping, we stayed a total of 5 nights and it took this time to try and manage his pain, once this was managed he was able to keep down his feeds.

Since our stay in GOSH, shay has had his ophthalmology appointment and been given a stronger prescription, his eye movement is getting restricted by the muscles tightening up.

We are now awaiting more tests re his brain, eyes and hearing.

I will post a photo shortly.

Regards

Dad

Shay

This is just a short message to let you know that Shay is busy with numerous hospital appointments,  its that time of year again with the yearly appointment. We are awaiting certain result and will update here when I get them.

Shay has had a MRI scan, we are awaiting the results which will be when we see main Mitochondrial consultant. Shay has seen his GOSH heart specialist which went well, and after a discussion he is going to have a heart monitor on for a day, due to somethings which occurred over the last few months.

We are awaiting his main hearing and eye sight test at GOSH, I have a feeling on what these results may show but we always keep strong.

Regards
Dad

Ps I am aware that we can go a couple of months without writing on the blog, this is down to shay being well and also busy family life. I would like to let you know that I do look at the site regularly.

Shay worried about moving to Junior school

Tonight Shay was in bed and not in a good mood, he called me and just wanted me to sit with him. After about 10 minutes he says "I don't like juniors, I will miss my friends. I don't want to leave infants"

 

I do my utmost to reassure him that he will see his friends and that he can always pop into infants whenever he wants. He says "I cant pop in every day" (This tells me its more than his friends he does not want to leave, but his teacher / welfare lady). I have told him he can pop in to see his infants teachers anytime.

 

Shay had me with a tear or two rolling down my face, when I looked at him he had tears rolling down his face,
 

Shay fell asleep, but the picture looks like he was in a deep thought before he fell asleep.

 
Shay does not like change, I wish we could keep his teachers and his special people with him. They are worth the weight in gold.

 

 The lady with shay is one of his special teachers. This year would have been so much harder without her. Thank you.

 

Update

Since January Shay has had a couple hospital visits re his bones / joints/ muscles. He has been unable to put pressure on his foot due to pain in his ankle, x-rays are clear so not sure what is happening.

We are awaiting a few hospital appointments re lumbar punch and other test, So July will be a busy month for him. When I have further re his hospital I will keep you all updated.

Shay has managed to do his First Holy Communion, something which I never thought would see.

Shay meets Harry (From McFly)

Shay had a fantastic day yesterday, he met another rock star, Harry from 'McFly'

Harry was impressed with shays dress sense and told him that he will be wearing the jeans and boots in his next video, as shay looked cooler than he did. This impressed shay, who's smile started to get bigger and bigger.

Shay asked me several times if I had said thank you to Harry for meeting him. I did, but shay never fails to amaze me, he always thinks of other people.

My little rock star.

Regards

Alan

A Brief Update on Shay 24/01/2014

Shay has been himself and battling along, as shay does, without any worries, no matter what happens or developments Pearson's syndrome gives us.

He has been diagnosed with Hypoparathyroidism for which he now takes Alfacalcidol drops.

Shay has had his peg changed at GOSH back in October 2013 and whilst this was done he had a lumbar puncture. Shay has had trouble remembering what he done in the morning or he will be unable at times to how to count. He will start to count, but then he will forget what number is next and then you can see he is trying his best to remember but he cannot remember. His face shows that he knew the number and he starts to get upset, so he will change what we were talking about.
With the lumbar puncture result it revealed that his CSF folate levels were low. With these results shay has started to develop symptoms associated with Kearns-Sayre Syndrome. He has been diagnosed with chorionic neurological disorder. He is now on calcium folinate which will hopefully slow the progression down.

A MRI and another Lumbar puncture is being booked in to happen in a few months, so they can compare and see how much his condition has progressed              

Regards
Alan

Recent posts

Hi all,

Sorry that I have been unable to update the sit for a few months, I will get this done in the next week or two.
Briefly shay is fine, and doing well, we have had a few hospital appointments and some low levels in Shay's blood. But I will get this site updated in more details with what has been occurring to shay over the last few months.

Shay has had some fun as he was taken to the police riot training centre by a good friend of his. The  pictures and information about his day will be placed on this site too.

Any questions please feel free to comment on the site and I will get back to you.

Have a Heart Appeal

Shay was invited by Starlight to take part in the ongoing Have a Heart Appeal. The Have a Heart Appeal is raising money to make seriously ill childrens wishes come true. Shay was thrilled to be a part of this appeal and thoroughly enjoyed being interviewed by the shows presenter. He was asked questions about his 'Rock Star Wish' that he received from Starlight last March. As usual Shay enjoyed being the centre of attention and thoroughly enjoyed the interview process.

No coughs, colds or virus’s Shay has been enjoying life germ free! It really is about time that his body was given a rest from all the germs and bugs that have been going around.

Shay is now on an extra feed at night to meet his daily calorie intake. He is on an extra 500ml giving him a whopping 750 extra calories. He coped extremely well with the extra feed as we introduced it 50ml at a time and built up to the 500ml. It was great to see him pile on the weight with this feed and gain a bit more energy! Shay’s muscle tone has improved dramatically as he has been going to children’s fitness sessions and now has quads he can be proud of.

As you know Shay cannot really go more than a few weeks without something happening. He is now in a cast for a fractured tibia. We don’t know how Shay managed to fracture his tibia and he is unable to tell us. He was in tremendous pain but is now relatively pain free, thanks to the cast. The hospital wanted Shay to have a weight bearing cast so it wouldn’t affect his mobility too much. Exactly 24hrs later Shay was in immense pain that even pain meds couldn’t ease for him. So 8 hours and two hospitals later the cast was finally removed and a non-weight bearing one put on. The original cast was put on to tight causing a huge sore on the instep of Shay’s foot!!! The plaster technicians were more interested in talking about lack of staff and how many people were sitting in the waiting room. We are back to fracture clinic this week to see the consultant, so we will be complaining about the lack of care and concentration from the technicians when putting on Shay’s plaster cast.

 

Another heart breaking concern for us is Shay’s lack of memory skills/cognitive development. He thoroughly enjoys learning about the world and most importantly how things work. He can tell you about planes, cars, bikes and railways. When it comes to recalling how to count this can cause major problems for him. In nursery Shay was able to count up to 20. Only the other day he started counting and got to 4 (you could see him getting confused) and then he said “Mum, I lost count”. He tried it two more times and was unable to recall what number comes next. Shay is able to process information but when it comes to recalling everyday skills he isn’t always able to. He struggles with people’s names who he has known for a long time. He has no problem recognising who they are but will stumble over the name. Shay was struggling with my own name a few days ago. I have spoken to other Pearson’s Mum’s and this seems to affect a few of our older children in our group. Some of them are on medication that seems to help their cognitive development. We are seeing his specialist in a few weeks and will bring this up with her. Hopefully there is something that can help Shay improve his memory and cognitive development before it really starts to affect Shay’s learning.

Take care everyone and thank you for keeping Shay in your prayers.

Christmas

Not long after my last post Shay was hospitalised for a week. He had been fighting a cough for quite a few weeks and was on numerous antibiotics. I think everything just got too much for his little body and he was unable to fight the virus on his own. I'm not going to say the doctors made it easy for us in the hospital, far from it! Keeping guard over the IV drip to make sure someone doesn't take it down does not really install our confidence in the doctors who we dealt with.  Again lack of knowledge, understanding and treating Shay like every other child just fighting an illness is just a few things we had to put up with.  The majority of doctors do not realise how things can change very quickly for a child with mitochondrial disease. We ended up putting enormous pressure on the doctors just to get them to phone the mito team at GOSH for advice. I dread the day when something serious might happen and we have to depend on inexperience doctors saving our son's life.
Shay was discharged after a week, but then two days later his stoma site developed a horrible infection which completely knocked him off his feet again. Shay could barely walk with the pain and we felt completely helpless. Shay had a very poorly Christmas period and was bed bound for nearly two weeks. He has had a tough time of it lately and there wasn't many smiles from him.
 Today, Shay is back at school and is having a great social life there. We have realised, this time of year Shay is unable to cope with a full week at school. We are going to keep him at home on one of the days so that he can recoup some of his energy.

A long time coming

It has been a while since I have been able to update Shay's story, I am very sorry for the delay. Shay has had fantastic health since his peg tube placement back in July. He has gone from strength to strength with his feeding. He is still not a great eater but that now is such a little thing since he has feeds through his tube. The pressure has lifted from Shay to eat orally and he is more willing to try a different food at least every couple of months. More likely its a small bite of a new food and then he pulls a yuck face! He doesn't complain of his body aching as much and his energy levels have gone skywards. It is a very demanding job to get him to slow down at the moment. Shay had a fantastic summer and was back to his cheeky self running around causing havoc.
Since September, Shay has had numerous days of school due to him coughing and having the odd virus. Shay is coping really well with the winter months upon us, it has been a long time since he was in hospital because of an illness.
My priority for Shay at the moment is to work through the red tape for him having an educational statement. Our first attempt was declined and our local education authority turned him down on the grounds of refusal to assess. Utter disbelief after the phone call I received!! So the following few months will see me advocating for Shay at meetings, appeals and if necessary tribunals. Shay is a very bright boy and his general knowledge is incredible to say the least. When it comes to other subjects he is like a sponge but a day later its forgotten. It seems he is able to take in all this knowledge but when he comes to retrieve it he finds this very difficult. I find outside professionals do not understand the syndrome he has especially educational specialists. They need to look at Shay as a whole and not concentrate on the little bits if that makes sense. To me Shay's energy in the playground is amazing, something has to give for this and I think his learning has taken a major knock because of this.
I have spent hours today researching trying to find links with mitochondrial disease and a child's education. There is very little on the net with this and I only came up with a few points to help my case with the education authority.

Shay looking super cool, driving a police digger!!

 

A good piece of new is Shay's school are donating all the proceeds of their Christmas concerts donations to a charity connected to mitochondrial disease. They asked me to choose the charity which I was thrilled to be able to help with. It is a registered UK charity for children who have mitochondrial disease. They are not aware yet as it should take a few days to sort out.  Shay has an exciting Christmas planned. There are people out there who are doing very special things for him at the moment. I will up date you all on that very soon.

Awaiting update

I have had one or two posts sent asking on shay is. I am sorry in the delay, but we have been busy with numerous things going on.
We will update the blog over the next couple of days with what has been happening. But for piece of mind shay is well.

Sorry about this delay.