Is there ever such a thing in life, and could we now consider ourselves into one of some sort? I'm not sure yet but it's starting to feel like it, perhaps.
Hockey practice 3 times a week, 2 of which grandma's and grandpa's have been VERY helpful in getting Clayton to and from, dance 2 times a week, again, credit grandma with getting Daphnie to and from at least one of those sessions. This has become fairly 'routine'.
Jasper has now had 6 successful infusion treatments. Successful in that there have been no significant drug related side effects. While risking a 'jinx' on the success we've had so far, I have to say, I think yesterday was the best one up until now as far as Jasper's co-operation and 'willingness'. He still put up a bit of a battle while taking his pre-meds, but as soon as he decided to take them, they were gone in no time. No tears! Then when it came time to access the port this time, we must have done a better job at distracting him, because he only flinched. Again, no tears! After that, we're back to games, books, tv etc etc to keep busy for the next 5 hours.
We also went back to the audiologist yesterday because we are getting a little stressed with hearing "what? What? What mommy?" And constantly having to repeat ourselves. The audiologist did some tests to assess his hearing ability, but right from looking into his ears, she could see some redness and noted there was definitely a buildup of fluid behind both drums. As we suspected, she confirmed that is hearing was definitely impaired.
I will note, that this is most likely unrelated to MPS. Very common in kids, the fluid just doesn't drain like it should all the time.
After a few more minutes of games (tests) she determines that when bypassing the eardrums, he hears just fine. She'll pass the info on to our Dr, and if she decides to a refer us to an ear, nose and throat Dr, she may, otherwise we'll try and let it pass on it's own, and return to audiology in a couple months time.
We have also seen the opthamalogist recently too, and she has confirmed that he definitely has some corneal clouding already. Not severe yet, in which case they'd recommend corneal transplants. So hopefully the ERT will help prevent any furthur clouding.
So, all in all, things have been going okay for us. We've started to see some results from his treatments, his hair is much softer, he's lost 1" from his abdomen, and he's grown 1" since mid September. Most importantly the GAG (waste) levels in his urine have decreased significantly. Since we started seeing the geneticist (April) until the time he started treatments (October) his GAG levels have ranged from 22 - 64. 'Normal' range is 0.3 - 13. After 4 weeks of treatment he measured 16. This is very significant because there is that much less waste now being stored in organs, bones and corneas.
Think that's it for now. Except to say again, thank you to everyone for thoughts and prayers. We are still in awe of the love and support we've had and continue to see from people. The fundraising dinner Pam's ball team put on was an amazing success. This weekend the curling club in Palmerston is holding a "More Than Just a Spiel" spiel to help "Take Out MPS VI". Both draws are full which is great, and it should be a fun night. In a couple weeks "What's the Occasion" and "Norsco Sports" are having a sale and charity bbq where part of the proceeds are going to help Jasper and us through his treatments as well.
Cannot say thank you enough to everyone, but we'll keep trying :-)
Love from the Mores
