A lovely but busy Christmas after possibly the busiest term ever!
We also found time to attend a CICRA family info and fun day which was interesting. CICRA
There was a hand foot and mouth scare which would possibly have been quite serious with Aaron's compromised immune system, but he fortunately escaped it.
All 3 boys have now had birthdays and parties, so we now have a 5, 8 and 11 year old in our house.
Aaron has had more heart investigations including a 24hr heart rate monitor after an irregular beat was noticed but it so far appears benign, despite also a slight murmur noted at the last infusion aswell, results still pending.
Josh had a paediatric review which was fine (booked follow up ultrasound to keep an eye on his enlarged lymph nodes in his neck) except I asked her if she would listen to his chest as his cough had been persisting for while and she noted a slight wheeze indicative of an infection, she though it had passed and told us to keep watch for a fever, the next night he got a high temp, the GP the following day heard the same wheeze and crackles so gave him antibitoics (that'll teach me to try to avoid the drs!) during the apt she gave him a once over and found an unknown object stuck in his ear so referred to ENT! it was uncomfortable by the 21st so we went to the local walk in clinic who managed to get it out and found it was blutac - basically an ear plug for the past 3 months!
By the time Aaron's next infliximab infusion came about he was passing quite a lot of blood, was quite anaemic and tired and was up most nights with that or joint pain, he therefore got a double dose 2 weeks early but this is seemingly having less and less effect so his dr at his apt a week later booked him in for scopes (upper, lower and capsule) on January 13th with a view to starting an alternate medication given by injection fortnightly, 1st double dose given whilst under anaesthetic.
It was nice to go to Great Ormond Street for fun for the party for a change!
The 2 older boys enjoyed the new Star Wars movie with Tom.
Next term begins with Audiology 31/12 for Ethan whose hearing is very reduced at the moment. Rheumatology 8/1 for Josh as a follow up to his hypermobility and weak muscles and 13/1 Aaron's scopes.
Since I last posted we have had over a dozen more appointments plus even one for the poor cat with a bad bite!
Ethan had his op but he'd rather I not write about it here! but that took up most of that week, meanwhile Aaron continued with his dia and other symptoms, including increasing stomach pains.We also found time to attend a CICRA family info and fun day which was interesting. CICRA
There was a hand foot and mouth scare which would possibly have been quite serious with Aaron's compromised immune system, but he fortunately escaped it.
All 3 boys have now had birthdays and parties, so we now have a 5, 8 and 11 year old in our house.
Josh had a paediatric review which was fine (booked follow up ultrasound to keep an eye on his enlarged lymph nodes in his neck) except I asked her if she would listen to his chest as his cough had been persisting for while and she noted a slight wheeze indicative of an infection, she though it had passed and told us to keep watch for a fever, the next night he got a high temp, the GP the following day heard the same wheeze and crackles so gave him antibitoics (that'll teach me to try to avoid the drs!) during the apt she gave him a once over and found an unknown object stuck in his ear so referred to ENT! it was uncomfortable by the 21st so we went to the local walk in clinic who managed to get it out and found it was blutac - basically an ear plug for the past 3 months!
By the time Aaron's next infliximab infusion came about he was passing quite a lot of blood, was quite anaemic and tired and was up most nights with that or joint pain, he therefore got a double dose 2 weeks early but this is seemingly having less and less effect so his dr at his apt a week later booked him in for scopes (upper, lower and capsule) on January 13th with a view to starting an alternate medication given by injection fortnightly, 1st double dose given whilst under anaesthetic.
It was nice to go to Great Ormond Street for fun for the party for a change!
The 2 older boys enjoyed the new Star Wars movie with Tom.
Next term begins with Audiology 31/12 for Ethan whose hearing is very reduced at the moment. Rheumatology 8/1 for Josh as a follow up to his hypermobility and weak muscles and 13/1 Aaron's scopes.
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