I seemed like the right time to write an update about Corey, the anniversary of his bone marrow transplant.
I can't believe its 5 years ago. The years are flying by so quickly! He has finished Year 1 at school and will start Year 2 in September. He will be in the same class and have a new teacher but the same 1:1.
You know what's really hard is how to live in the present and look to an uncertain future yet not look to the past? If that makes any sense at all! I'm finding it easier to look into the future and enjoy the present, and I'm not wanting to look back anymore at where we came from to be here today. The whole process of 'blogging' , mostly daily about Corey, his condition, treatments, complications, resolutions, happy times, sad times, critical times was cathartic and got a lot of what was in my head out into the open. I haven't had the time or felt the need to expedite my ramblings into the public arena as much as I did previously but maybe this was just life getting in the way and swallowing up the time required in order to vent and process everything to do with Corey.
In a way I think sometimes I want a clean slate - not to remember the past or retell it to anyone new just because it sounds so damn awful, and it was, but it's the past and in the words of Rafeki "It doesn't matter it's in the past". (We've watched a lot of The Lion King recently!) It doesn't change anything, Corey still has Hurler Syndrome, he still has symptoms that need surgery and the eternal black cloud of life expectancy hanging over him but when things are this good why don't those worries pale into insignificance? Then I feel that somehow I am being pessimistic about the whole situation, that actually things are good, enjoy them, stop worrying but can these just be swept under the carpet, even if just for a short time? I feel torn into pieces (not just half - I re-wrote that because it's more than 2 halves) about how to come to terms with this seemingly normal life that has been presented to us. Maybe it's only just starting to sink in that things are good, and I should just get on with enjoying them.
Okay, mental ramblings over.
We have been to Bristol 3 times in the past week, the first to see our lead BMT consultant. My first words to him when he asked how things are - "Best year yet". Which it has been and he was very pleased to hear it. So much so that we no longer have to book in to see him specifically. We will however still catch up at the annual MPS clinic.
Next was to meet our new orthopaedic consultant, who seems nice. Not as much experience with Hurlers as our last consultant who has left for Canada (you lucky people), but knows her bones and was happy to listen to me! Corey had X-rays of wrist for bone age, legs, lumbar spine and toes. He also had photographs done of his legs to compare with last years.
And lastly to see consultant about Corey's left hand which has moderate carpal tunnel syndrome. He is now on the waiting list for CT release. He had this operation on his right hand last year. Due to him inevitably having to have 8 plate surgery on his knees and spinal fusion due to his compression within the next few years, this operation is the least invasive and best to 'get out the way' before the biggies.
Corey also had bloods done whilst at Bristol to check that his vaccinations have worked. Corey was re-immunised after his transplant and due to having IVIG at a similar time we're checking that he is covered or he may need some vaccinations again. The phlebotomist we saw at Bristol is an amazing lady, Corey cried but it was all over in 30 seconds. Unless an emergency, that's the only place I'll let take blood from him. Compared to previous attempts where he has literally been clinging onto door frames this was very calm.
Regarding operations, Corey's hypospadius repair in April went extremely well. He was content to sit still for a week with his catheter in, although it has produced an iPad / YouTube obsessed child! The bandages coming off was horrible but done as best as possible and he peed with no pain soon after and it didn't look as bad as they had said! It tied in nicely with the easter holidays so he only missed 5 days of school. He was on high dosage pain relief for a couple of weeks and 2 doses of tramadol at his worst but he was a complete star, a always, and amazed me, as always, at how well he coped.
Coming up..
August we have bladder and bowel clinic as Corey is not dry at night. Hypospadius follow up in Bristol. November - neuro review and hopefully an MPS clinic to attend. Sometime before Christmas we will probably see our local consultant too for a review.
And that's all folks!
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