I thought a change was needed, as I hadn't posted on CaringBridge since August (yes, over 6 months ago) I thought it was a good time to change to this blog where I can post more photos and even videos, so that you can still catch up with Corey and his adventures.
So, where do I begin? So much has happened from a new baby brother, to moving house, starting school, potty training and a full body MOT!
September
Corey started 'big' school. He's going to the same school I went to, over 20 years ago. He moved there from pre school with about 9 friends, so he was well supported. We paid lots of visits before the summer holidays so he knew his teacher and the rooms he was in. He has a full time 1:1, who we also met in the summer holidays. She's fab, very experienced, and is taking good care of him.
On September 24th, right on time, Joshua Vincent arrived. A traumatic birth resulting in 23 hours of labour and I lost 2 litres of blood and required a blood transfusion. As a precaution, he was taken to special care for antibiotics as he had a temperature and we were allowed home after 2 nights.
October
Corey had surgery to have grommets placed in his ears. This made an immediate difference to his hearing, for a short while, and has hopefully helped his speech too. Audiology tests showed an improvement but still some mild hearing loss in the higher frequency sounds.November
Painting, cooking, riding bike's and donkey's, Santa steam train and Mummy had 24 hours off in London to go and watch Michael McIntyre!
December
Corey has absolutely loved school and has been progressing very well.
Christmas was spent at home, the four of us. Corey asked Father Christmas for a scooter.
When we took him out for the first time to ride his scooter, he just walked along side it! The weather hasn't been particularly dry so, unfortunately there hasn't been much scootering.
2013
And so onto this year. 16 medical appointments, 2 general anaesthetics, weekend trip to Newquay, new glasses and carpal tunnel surgery. Needless to say this Easter weekend we have all come down with colds and are enjoying a well deserved rest!
January
The year started with Joshua having a mild dose of bronchiolitus, he was still feeding a little so wasn't hospitalised. Corey is now also fully up to date with his immunisations. We don't know for sure whether his body has accepted or is producing the antibodies and it will be tested for later this year.
Corey has also started IVIG again. Last year he seemed to have constant colds and chest infections and was on antibiotics for months, so after a lot of asking for him to have IVIG again, our doctor's finally decided it was worth a try. Pretty much 48 hours after his first dose, Corey looked much healthier and his constant cough stopped and his runny nose dried up. He's not due to have it regularly but on a as and when required basis.
Metabolic Clinic went well, everything for follow ups and meeting new doctor's is in place and we have now gone to annual check ups.
Our family dentist who has known Corey since before his diagnosis and has read up on MPS since, said that Corey's teeth enamel look strong and all 20 are there. Corey does enjoy brushing his teeth, so the fact that he has 3 lots of toothpaste in 1 go, the dentist was quite happy for him to stay on the kids toothpaste with less fluoride.
Eye clinic - we have to see 3 different people and it usually takes about 2 1/2 hours, with play time in between. The first lady Corey was very co operative with, saying his letters and wanting to please, not so much after she put the drops in. After a wait, whilst the drops did their job of dilating his pupils, then the optician. Corey liked his chair and did extremely well with the glasses on and different lenses being tried. He concluded that Corey is long sighted and has an astigmatism and therefore requires glasses. Then onto the consultant opthalmologist (who initially spotted Corey had cloudy corneas and prompted the urine test for MPS). Corey had had enough now and was less than helpful, I had to pin him so she could check his eyes. The cloudy corneas aren't any worse and there is no sign of uveitus which can be caused by Behcets.
Our weekend in Newquay was a lovely break from the norm. We had wonderful weather, windy and raining at night and beautiful blue skies during the day.
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February
Corey's initial carpal tunnel operation was cancelled due to miscommunication between hospital departments. I was told that the anaesthetist cancelled it as she had not seen Corey (I spoke to her personally on the Friday before), but the ward nurse told me that the coordinator had cancelled it for an unknown reason. Regardless, it was rebooked for March. What amazes me is the time I have to spend chasing hospitals, doctors, nurses, secretaries all to make sure that our lives are made easier and that miscommunication doesn't happen. I have to co ordinate over 15 different specialities involved in Corey's care, from school meetings to our general paediatrician and neurology, audiology, urology, radiology, what feels like every other ology going, community nurses and therapists. I have 1 day a week dedicated to Corey stuff and that doesn't involve chatting with our larger MPS community and general research into the future.
We also had a meeting with Make a Wish volunteers to discuss Corey's wish. They have a lot of info and we will hopefully hear soon.
We had an appointment with Corey's urologist in Bristol to discuss 'fixing' his hypospadius. This he was born with, (an added extra to Hurlers), it means his pee hole is in the wrong place. When Corey was born it was slightly off centre and he has a hooded foreskin. When he was catheterised in 2010 due to the swelling caused by Behcets, his urethra tore and now his pee hole is at the base of his willy. The operation he will have to fix this will involve a circumcision and a new urethral tube, a week at home with a catheter and a further week off school, then 6 weeks of no climbing, riding, boisterous play. For more information please go to www.drmark.info We're anticipating this surgery will take place Easter 2014.
Corey's audiology appointment showed that one of his grommets is blocked. His hearing hadn't improved further since November so he has hearing aids again. His left ear is still worse than his right. He was very good at this appointment and they got some good testing done.
MRI. This time his MRI was carried out at Frenchay Hospital in Bristol. This was our first meeting with the anaesthetist who supposedly cancelled the carpal tunnel surgery. She side stepped my questioning of why it was cancelled. Anyhoo. We decided to try gassing Corey this time and it did take a bit longer for him to go under but I felt it was less traumatic than a cannula. The anaesthetist mentioned pre meds after which is something we have never been offered before at Bristol Children's, she thought it might be worth a try to calm him down beforehand. I told her that she hadn't seen him upset! Corey woke up extremely upset and didn't want to leave the hospital! He's normally ravenous after being starved but didn't want to eat anything and basically just cuddled until it was time to drive home. He slept all the way home and then puked just as we pulled up outside and then had a temperature. The next day he was having IVIG, and the temperature had gone and he was a bit better, not 100% Corey but ok. IVIG went ahead using the cannula left in from Bristol the day before (saving on that trauma), he was perfectly happy to watch Pingu for 5 hours and play with Joshua who was learning to sit up.
March
General paediatrician review. All round positive. The only outstanding item is a referral to a neuro psychologist for a behavioural baseline study.
Corey has been potty training for about a year now and finally we have been sending him to school in pants (boxer shorts helped a lot actually) and have more dry days than not. I'm not even considering night time yet but this is such an achievement for Corey.
Corey had an ultrasound of his abdomen, as he complains intermittently of pain in his tummy, last year they found gallstones, so when he complains consistently for a while an ultrasound was requested. He still has 2 gallstones, 1 sat snugly in his duct and the other floating around at about 0.6cm diameter. After discussion, we're getting in touch with our gastroenterologist in Bristol and a general surgeon to find out the way forward and what to do if acute pain hits.
Orthopaedic. We met our orthopaedic surgeon for the first time. He described Corey, after 2 minutes, as a live wire and said they were going to get on like a house on fire! Corey will have surgery to correct his knock knees. It'll be 8 plate surgery, where they put plates in one side of his legs so they don't grow and the other side continues to grow and therefore his legs even up. Due to Corey having to have hypospadius surgery and awaiting MRI results etc, he said he'd rather do it when Corey is about 7 years old but will see us on an annual basis. Corey's hips, he described the cup part as being shallow and no intervention is required there yet.
After this appointment, as my mum was looking after Joshua back home, I took Corey to Puxton Park for some Corey and Mummy fun time, It's a big play barn with bumpy slides and tunnel slides and lots to climb on. We had a lovely time and it was well deserved time out for both of us.
Last but by no means least, MRI results followed by carpal tunnel decompression surgery.
The MRI showed his lumbar spine is ok, his head is normal for someone with MPS and the narrowing of the spinal fluid canal in his neck at C1 and C2 has got slightly worse.
The registrar that we saw (this is the only speciality where we see a registrar and not a consultant) gave us a list of things to watch out for - walking like a drunk, falling over own feet, losing strength in arms, change of writing habits and holding a pen. We were told to keep a diary of how Corey does things so that we can measure if they change in the next 6 months when we'll have another review. Clinically, he was pleased with Corey as a whole. Whilst there, Corey was being a fidget, as usual, and we were singing row, row your boat with him sat on my lap. As Corey was going back he was putting his head right back towards my knees and the floor and the registrar said he shouldn't be doing that with his neck. This is a seemingly normal act of play and it kind of shocked us that something this simple could actually be putting Corey in danger. Back to being paranoid about paralysis then.
Carpal tunnel surgery was a success in that they decompressed his nerves in his wrist. The first thing he said when he woke up from this was 'my foot hurts', from where that had put a cannula. This time Corey was cannulated not gassed and it was horrendous. We decided against pre meds but will discuss it in more detail next time he's due an anaesthetic. He was ravenous this time around and ate everything in site for a couple of days! He was wary on the first day but after that he was using it as normal and was allowed back to school in the afternoon.
Corey's parents evening was good, his teacher has him at an expected level for his age in personal, social and emotional, reading, writing and maths (literacy and numeracy as it is now known!) and not quite there in physical and communication. The physical side of things she was waiting for some more guidelines as it's because he's not allowed to do certain things due to his neck. The communication is his speech and language. I have finally bitten the bullet (and Shane the bill) for private speech and language. We're meeting a therapist in the holidays for an initial assessment.
This week was also the official opening of a new building at Corey's school. As Corey is the youngest boy at the school he was chosen to cut the ribbon with his friend the youngest girl and also the oldest boy and girl too. He got to meet our local MP.
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Surgery is healing nicely, Corey has become quite attached to bandages and when we changed it today he wanted to wipe the dissolving stitches away and when it wouldn't go he got upset. A nurse changed the bandage and examined the wound after 9 days, said it was looking good and to keep it covered a bit longer. When she rebandaged him she did it too tight and it has rubbed a sore on his thumb which now hurts him more than the initial surgery. If it's not one things its another.
So, that's us all up to date! Apologies it's been so long and more apologies it's taken you 3 cups of tea and a packet of biscuits to read it all!
We now have a fun packed Easter holiday to fill with fun, friends and family.
As always, much love to you all and thanks for checking in on us. Happy Easter xxxsts
For previous posts on Corey's adventures please go to www.caringbridge.org/visit/coreyj
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