sorry for the delay in posting, after going to our last appointment and finding our lovely consultant was off ill for her last week, i didn't know what to write, so sad not to be able to have one last chat with her.....
Just after my last post, Crossroads upped their hours to support us, so we have someone in for 2.5hrs once a week. Aaron then had his feeding tube out the next day as he is managing to take in the amount of formula they wanted, he was actually a bit nervous to lose it! At the appointment that wasn't, we in the end got to see a paediatrician who at least could organise bloods to be taken and the stool sample to be sent as previously requested by the consultant. The day after we also discovered that the surgeon who had done both of Josh's surgeries had retired... the week finished happily though with Josh's 6th birthday :)
Then a bit of rest for half term week, that is apart from the party for Josh, outings, Dr appointment, church party and fireworks! Then after half term Aaron finally started playschool after deferring it whilst he had the feeding tube, he liked it but wanted me to stay too! Things also got busy as we started doing activities we had been avoiding such as Toddler groups.
This week Josh's annual surgical review has been postponed as despite requests, the accompanying ultrasound was not booked, which makes January when they have rescheduled it to even busier. We have appointments 9th December GOS for Aaron and a special paediatric crohns clinic, then in the new year Josh has a urology ultrasound and testing hopefully being combined with annual review scan on the 6th jan, same day as the first day back to school, St Helier new Gastro for both boys on the 8th, urology appointment on the 13th, surgical review on the 16th. and no apparently they can't combine any of these dates! We also are going up for the hospitals children's party on the 18th Dec.
Aaron seems to be doing quite well, no bleeding and only the occasional loose poo, we have introduced quite a few foods which he seems to be tolerating, just leaving out allergens and known irritants to the bowel until our appointment in a few weeks, his bloods show him to be a bit anaemic and we are awaiting further advice on this as it can be an absorption problem in crohns patients.
Lastly, unbelievably, Aaron is 3 in less than 2 weeks!
Just after my last post, Crossroads upped their hours to support us, so we have someone in for 2.5hrs once a week. Aaron then had his feeding tube out the next day as he is managing to take in the amount of formula they wanted, he was actually a bit nervous to lose it! At the appointment that wasn't, we in the end got to see a paediatrician who at least could organise bloods to be taken and the stool sample to be sent as previously requested by the consultant. The day after we also discovered that the surgeon who had done both of Josh's surgeries had retired... the week finished happily though with Josh's 6th birthday :)
This week Josh's annual surgical review has been postponed as despite requests, the accompanying ultrasound was not booked, which makes January when they have rescheduled it to even busier. We have appointments 9th December GOS for Aaron and a special paediatric crohns clinic, then in the new year Josh has a urology ultrasound and testing hopefully being combined with annual review scan on the 6th jan, same day as the first day back to school, St Helier new Gastro for both boys on the 8th, urology appointment on the 13th, surgical review on the 16th. and no apparently they can't combine any of these dates! We also are going up for the hospitals children's party on the 18th Dec.
Aaron seems to be doing quite well, no bleeding and only the occasional loose poo, we have introduced quite a few foods which he seems to be tolerating, just leaving out allergens and known irritants to the bowel until our appointment in a few weeks, his bloods show him to be a bit anaemic and we are awaiting further advice on this as it can be an absorption problem in crohns patients.
Lastly, unbelievably, Aaron is 3 in less than 2 weeks!
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