I've lost count the number of times I've sat down to write to you all in the past year. Life sure does have a habit of getting in the way!
This is what I started writing back in November:
Doesn't time fly when you're having fun!
Corey is now in Year 1 at school and thoroughly enjoying it. He still has 1:1 support and is also gaining a lot in independence. He has lots of friends and is thriving with the routine and structure now present in the classroom. Some things he struggles with but his reading and writing are coming along beautifully.
The British summer was wonderful, in that we actually had a summer this year! We had a family holiday to Northampton and The Lake District. We went to LEGOLAND with the MPS Society for Corey's 5th birthday and have had a relatively healthy and happy few months.
 |
| Driving a boat on Windermere |
November 12th we met a new to us Metabolic consultant at Bristol and also a Metabolic consultant from Manchester and it was so refreshing to sit in a room and discuss MPS frankly and openly with people who know more about it than me! I haven't had that opportunity for a while and it was nice to have my mind put at ease regarding Corey's future.
I'm just going to reminisce for a while.
 |
| Corey celebrates his 4th Transplant Birthday in Windermere |
Corey is now 4 years post transplant. Transplant is the best treatment for Hurlers but is not a cure. There are certain milestones I wanted to reach during our journey and those targets are what keeps you going, to get to the next stage in the journey. ERT, donor, day minus 10, day zero, Transplant, engraftment, non isolation, home, 100 days, a year. Every transplant journey is different, ours was, for want of a better word, easy. The aftermath of transplant was what we didn't expect. We reached these milestones and then it was setback upon setback. Every day was a bonus and we learned to live each day at a time. No looking to the future, not even beyond next week. I read today " I don't believe in odds anymore". This holds so true for me. When anyone says those words "it's rare" or "1 in a ... chance" my eyes roll all of their own accord!
Visiting Bristol hospital, where we called home for so many months is always lovely. I love that people get to see Corey as he is now, those same people who helped him, and us, survive. One nurse said to me "I wouldn't have recognised him. Well done, you've done really well"
That visit with the MPS consultants gave me back a future, with Corey in it.
And so onto Today. 6th February 2014.
Who'd have thought that I would go from daily updates to annual! I can't believe it myself.
Corey is still enjoying school and is progressing amazingly well. It really is wonderful to watch your child learn and grow and I'm astounded when Corey does something that I wouldn't expect of him, even just reading a new word or how he adds up his numbers and when he describes something. A favourite saying of his if we're discussing something and making a decision he comes out with "that's a great idea mum" and it makes me smile every time!
Medically. Corey is due to have MRI of his head and whole spine on Feb 20th. Hopefully we'll know the results of this pretty soon. This is the one I dread, the waiting to see if his spinal compression has worsened. At our meeting last year with the MPS consultants, they reviewed his MRI scan from the previous year, so not the very latest one which had shown some worsening, and the words they used to describe it were 'significant compression'. Significant is not a good word in my vocabulary.
Provisionally booked in for April is his 'willy op'. Corey was born with hypospadias (added bonus - where the pee hole isn't in the correct place) this worsened when he was catheterised due to the genital ulcers and even though it doesn't cause him any discomfort once this has been repaired he'll be able to pee standing up! It will also involve a circumcision. He'll have a catheter for 1 week whilst his new tube mends and then we go up to Bristol again to have the bandages taken off. In the bumph that the hospital give you describing the op etc it states and I quote:
"PLEASE NOTE: the repair can look very bruised - DO NOT BE ALARMED by the appearances at this stage"
Needless to say none of us are looking forward to watching him go through this and have only told Corey that once he's had this op he'll be able to pee standing up, which he is quite happy with at the moment!
More info on hypospadias can be found here www.drmark.info
Compared to this time last year when we were in and out of 3 different hospitals for various appointments, we've not had any in 2014 yet! Apart from changing GP surgeries. I have now created a document for new doctors named 'Corey in a nutshell' to try and give them a heads up before actually meeting us, especially after a registrar asked us if this was Corey's first anaesthetic back in November!
That reminds me, Corey had a hernia repair in November. This was his 2nd inguinal hernia, he had one as a baby which was repaired before he was diagnosed with MPS.Corey's dinosaur had a hernia repair too! All in the spirit of Dinovember! https://www.facebook.com/dinovember?fref=ts
Next week marks our 3 year Being Home anniversary!
I posted this song on the day we were coming home.
http://www.youtube.com/watch?v=k-ImCpNqbJw
Here are some photos of Corey from February of previous years and today!
February 2009 - at home, prior to diagnosis
February 2010 - Bristol Childrens Hospital, 6 months post transplant, just getting over pneumonia and re-feeding syndrome, still on cyclosporine
February 2011 - Home on TPN and steroids, first bath with all his bath toys!
February 2012 - Hospital visit
February 2013 - walk on Preston beach
February 2014 - Look at me now!
