I can't believe it has been over 6 months since my last update. I have had a few requests for an update so here we go.
Seth started back at school in the last term of 2014. We moved him and Sienna to Heritage College Sydney at the start of this year so that he could receive the extra support he needs to catch up on roughly 4 years of missed schooling. He is now in year 6 and with the care he is getting this year at school I have no doubt that he will be able to handle the switch to high school next year.
Things have been relatively smooth for Seth. The worst thing that has happened is that his vertibrae was crushed. We can't pinpoint the exact moment it happened because he has been extremely active (which means he has been hurting himself quite a bit). We think it either happened with a fall off his motorbike or a fall off a hammock. He was in a bit of pain after both falls. This has happened due to his bones being weakened from the years of being on steroids. There really was nothing that the doctors can do to help him with this kind of a break and it was just a matter of time to heal and a lot less action from our boy. He is coming to the end of having to be careful and taking things easy and he is chomping at the bit to get back on his motorbike. I wish I could just wrap him up in cotton wool for a bit longer....
Seth's teeth are also beginning to lose their calcium and are showing signs of breaking down. Thankfully the damage is being done to the baby teeth he has left and the dentist gave him a calcium toothpaste that should help his adult teeth become healthy and strong when they come through.
We went to Westmead this week and have some great news. Seth will be finishing his steroid dose in a fortnight. The doctor is very optimistic that this time the GVHD will not flare up. I am optimistic too, as his dose has dropped to 2.5mg and he has had no symptoms.
The next bit of good news that we got was about his immunization. They sucked a lot of his blood this time to test whether he is able to go ahead with his re-immunization. He also got his flu shot. In about 1 month (if the tests are good) he will be getting the first of 3 doses of 'dead' vaccines. There is a 1 month wait between each dose. Then they do a whole lot more testing and if everything is well there, then he will be given the 'live' vaccines. I should hear in about a week whether we proceed or not with the vaccinations.
Seth has made progress with his IVIG also. The last time he had an infusion was in January. This means that he has gone from needing an infusion once a month to possibly every 3 months depending on what this latest blood test shows. His last test 3 weeks ago showed him at 4.6, so I am assuming he has now dropped below 4 and will need another. But progress has been made!! Slowly but surely he is getting there.
Seth still hasn't been growing a whole lot. His endocrinologist is keeping a close eye on his growth and we are hoping that once he stops the steroids he will begin to grow again. He has missed out on 4 years of growth and the doctor is optimistic that he will begin again. If not, they will help him along with medical treatments. His next appointment regarding that isn't until July so we should have a good idea by then exactly how his body will react to being off steroids.
Well, that sums up the last 6 months of Seth's progress. We have been getting out and about and getting back into society and "normal" life. I have had the great pleasure of telling Seth (when he was trying to get out of school one day) that he is now a "normal boy" and needs to go to school like everyone else does. I can't tell you how special that moment was for me.
If you have a moment of time please check out this little boy who has stolen my heart over the internet. I'm sure you will understand why when you see him. Click the two links below. The first one is to his blog. The second is to a video of this very special little guy who is about to undergo a bone marrow transplant on 1 May and needs your prayers.
www.ourlittlehero.wordpress.com
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