Well, its been a busy couple of months and we feel no further forward. In the end protocol meant that as he wasn't hepatitis immune he had to have a vaccination course for this before starting, trouble is this usually takes 6 months! After much deliberation meaning a later start date (3/9) they brought that down to 3 months, but after another wait to check if he has made antibodies, it means a start date of Feb!! At our last appt (17/9) we discussed strategies to bring the inflammation down whilst waiting to prevent bowel damage, including tube feeds again, a new antibiotic therapy, and increasing his current medication azathioprine (which we have done). However whilst waiting on lab results and to talk to the Dr about which option she thought, we are needing to change our 'sit-wait-and hope for the best plan' as he has started passing increasing amounts of blood daily. Just before the weekend we spoke again and are thinking about starting the infliximab before finishing the vaccinations, will decide next week
 |
| a summer snowman |
We enjoyed the rest of our summer although never planning too far ahead as we were always expecting a call any minute to come in to start the new treatment (3 infusions in the 1st 6 weeks intravenously at GOS). We managed however to have lots of fun including 2 long days at Legoland which the boys of course loved, and lots of swimming due to the lovely weather.
 |
| a sunny swim |
 |
| Legoland |
In exciting news Ethan is now coping without his hearing aid for the moment, his latest test showed hardly any reduction in his hearing for the 1st time in 9 years, we won't know if it was the otovent and fish oil treatment we did over the summer, but we are glad (well Ethan was initially unsure actually!). Lets pray a cold doesn't set him right back......
Josh continues to do amazingly well on his new medicine and after a brief worry about some slightly off blood results and if he could continue on it, all is fine. So as long as he sticks to his diet and takes the med without fail he is fine (except swimming...). His new Dr (Aaron's) his hopeful that one day (not soon) he might be ok food wise and no medicine! as long as he has a good long break from all the stress his bowel has been under in his life. It was so nice to have both boys seen by the same Dr, so convenient if a little exhausting to process!
 |
| Grandad playing zip-wire with the boys before their appt |
Josh continues to do amazingly well on his new medicine and after a brief worry about some slightly off blood results and if he could continue on it, all is fine. So as long as he sticks to his diet and takes the med without fail he is fine (except swimming...). His new Dr (Aaron's) his hopeful that one day (not soon) he might be ok food wise and no medicine! as long as he has a good long break from all the stress his bowel has been under in his life. It was so nice to have both boys seen by the same Dr, so convenient if a little exhausting to process!
No comments:
Post a Comment