Ethan had his cardiology appointment on Tuesday. His oxygen sats managed to creep up to 78%. They are not going to do anything about this; The same issue, we can change the conduit but can't close the VSD. They would like him to sat higher but they don't have many options. Dr Jim was very pleased with his progress since our last appointment and he doesn't need to see him for 6 months unless we start to worry about his progress. I spoke to him in detail about low sats and development and immunity etc. He seems to think the low sats won't hamper him too much, the 22q11 will be a bigger issue though.
His radiotherapy appointment was on Wednesday morning. Dr Wheeler is happy with his abdomen and how his organs have coped with the radiotherapy. They wanted to arrange scans and follow up appointments every three to six months. I mentioned Dr Downie was scanning every three months, no need to double up, happy for an appointment in 6-12 months. On leaving, an appointment was made for the 7 June 2006! (Dr Downie can correspond with them if there is a need before the 12 months!!).
He has another GP appointment today as his ear is still oozing. I am assuming more antibiotics. He still has no pain and has not had any temperatures.
Respiratory - Annual follow ups
Radiotherapy - Annual
Cardiology - every 6 months
Oncology - every 3 months
Paediatrician - every 3 months
Speech - weekly
Music - weekly
creche - weekly
GP - too bloody often!
But he is getting there.
Thursday, June 09, 2005
Sunday, June 05, 2005
june update
Since the last entry Ethan has had a couple of respiratory appointments. Dr Armstrong changed the asthma preventer (seretide instead of flixotide). This has helped, he hasn't had a major attack since. He was also commenced on a nasal spray for a month. I thought this would be awkward to give as most kids don't like the feeling of it, but I tell him it's time for the spray and he points to where it goes and after the first nostril he points to the other nostril. He is very good when it comes to taking medicines. Dr Armstrong is happy with his progress and has put Ethan onto annual appointments!!
The oncology appointment went well. The abdominal ultrasound and chest xray showed no signs of cancer. The chest xray showed that his heart was bigger than average and that he has had heart surgery...it is amazing after all this time that the xray people finally comment on such abnormalities!! The blood test was normal other than the alkaline phos which is still extremely high. Dr Downie is happy with his progress and we don't need to see him for 3 months when he has the same tests all over again.
Ethan developed a cold which increased the amount of snot, it started oozing from his ear! The GP diagnosed another perforated ear drum (same ear as last time). He has nearly finished his antibiotics and his ear is still running like a tap. He wasn't having fevers or he wasn't in pain, the only reason I knew was because of the ooze from his ear. He is quite a strong little boy.
Music group is going great. He enjoys going and he has even started to do the messy play. We are still waiting for the developmental check. It has been put on hold a little as the lady who runs the music group is one of the ladies who comes out. She advised us to start him in creche, this will help his social skills (advance his talking and play skills). On a Friday he goes to the creche up the road. He is in with the pre kinder kids. The first day was hard for me to leave him as there was a room full of big kids playing and little Ethan watching, none of the kids knew what he was signing! I knew the first day would be hard for him. The creche has been very supportive and have worked really hard to make him feel welcome. They have had training in makaton signing and have also learnt some of his made up signs so he has fitted in quite well. He has adapted really well and loves going.
He hasn't been to speech therapy for a while now. He will have a session next week. This will be good as he is now trying to babble a little so hopefully we can get some exercises that aid this.
The plan is for Ethan to complete 2 terms of music group and finish out the year at creche and then next year he will attend the Dandenong Valley Special School early intervention program (2 full days) and also do "normal" kinder (10 hours). So he will be very busy developing and catching up. This will depend on the final outcome of the developmental check but that's what is advised at the moment.
Evil Canevil graduated from the small chairs to the kitchen chairs, couch and coffee table! He has really started to climb and be more active. I try to encourage him to play outside on his bike or on the slide but it has been too cold especially with his ear. He eggs Adele on and vice versa, they are double trouble. We have two naughty mats!!
Finally here are some photos.....
Evil Canevil - leaping off the chairs
First post-chemo haircut
Tucked in to his new Thomas bed, thanks to Leisa
The oncology appointment went well. The abdominal ultrasound and chest xray showed no signs of cancer. The chest xray showed that his heart was bigger than average and that he has had heart surgery...it is amazing after all this time that the xray people finally comment on such abnormalities!! The blood test was normal other than the alkaline phos which is still extremely high. Dr Downie is happy with his progress and we don't need to see him for 3 months when he has the same tests all over again.
Ethan developed a cold which increased the amount of snot, it started oozing from his ear! The GP diagnosed another perforated ear drum (same ear as last time). He has nearly finished his antibiotics and his ear is still running like a tap. He wasn't having fevers or he wasn't in pain, the only reason I knew was because of the ooze from his ear. He is quite a strong little boy.
Music group is going great. He enjoys going and he has even started to do the messy play. We are still waiting for the developmental check. It has been put on hold a little as the lady who runs the music group is one of the ladies who comes out. She advised us to start him in creche, this will help his social skills (advance his talking and play skills). On a Friday he goes to the creche up the road. He is in with the pre kinder kids. The first day was hard for me to leave him as there was a room full of big kids playing and little Ethan watching, none of the kids knew what he was signing! I knew the first day would be hard for him. The creche has been very supportive and have worked really hard to make him feel welcome. They have had training in makaton signing and have also learnt some of his made up signs so he has fitted in quite well. He has adapted really well and loves going.
He hasn't been to speech therapy for a while now. He will have a session next week. This will be good as he is now trying to babble a little so hopefully we can get some exercises that aid this.
The plan is for Ethan to complete 2 terms of music group and finish out the year at creche and then next year he will attend the Dandenong Valley Special School early intervention program (2 full days) and also do "normal" kinder (10 hours). So he will be very busy developing and catching up. This will depend on the final outcome of the developmental check but that's what is advised at the moment.
Evil Canevil graduated from the small chairs to the kitchen chairs, couch and coffee table! He has really started to climb and be more active. I try to encourage him to play outside on his bike or on the slide but it has been too cold especially with his ear. He eggs Adele on and vice versa, they are double trouble. We have two naughty mats!!
Finally here are some photos.....
Evil Canevil - leaping off the chairs
First post-chemo haircut
Tucked in to his new Thomas bed, thanks to Leisa
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