It’s been AAAAGES!! (sorry!)

I know, I know….it’s been a while since I have written anything of substance! Forgive me…it’s been hectic here!!

So much has happened in the last few months that I barely know where to start!

Cameron has had a bit of a rough time. When he had his annual review bronchoscopy about four months ago, they found that he was growing staph in his lungs. He went on some heavy-duty oral and nebulizer antibiotics for a while. He was quite sick in this period. He went off his food and dropped a fair bit of weight, which are still struggling to get him to put back on….but at least he isn’t sickly looking any more.

Medication time in our house!

Medication time in our house!

When we returned to Perth for a checkup about a month ago, we came prepared for an admission for IV drugs (which is a minimum two-week admission) We managed to escape that bullet by the skin of our teeth! The doctor was fairly certain he no longer had a staph infection anymore, that he had picked up a different bug. We were to return home and do two weeks of nebulizer antibiotics again. If there was no improvement in that fortnight….absolutely, 100%, Cameron was going to be admitted into Princess Margaret Hospital for treatment. If there was improvement, but no better within a month, we had to return within 6 weeks for a review. If he was completely fine within two weeks, then we didn’t have to return for three months.

Eva has become a real little helper. Often assisting with meal prep and has earnt the trust to get Cameron's meds ready for him

Eva has become a real little helper. Often assisting with meal prep and has earnt the trust to get Cameron’s meds ready for hin we didn’t have to return for three months.

So many variables! I am happy to say that he was completely fine after one fortnight of drugs. His weight is still a kilogram lighter than he was three months ago, but in the meantime, he is throughly enjoying all the chips, chocolate and smoothies we are stuffing into him!

Eva is going…well…ok. We still don’t have any answers with any of her issues. The respiratory doctor put her on a new drug called Singulair, which is classed as an asthma preventer. While they are confident she doesn’t have asthma either, this drug is still in test phase on her. We all doubt it is actually going to do anything, but it’s worth a shot. She is still on three-monthly reviews at respiratory clinic.
Her food compulsion is peaking a little bit at the moment. While it is nowhere near as bad as it used to be, we have had a couple of incidents where she has stolen food, hovers around food, gorges while eating occasionally and once was caught eating the fat at the bottom of a baking tray I hadn’t yet cleaned. All we can really do is be vigilant until we find out what could be causing that.
We recently had an appointment with an endocrinologist (a doctor who deals mostly with hormones) Last time that we saw him, blood tests were ordered to check for a genetic condition called Prader Willi Syndrome, which she exhibits a lot of red flags for. They were also check her thyroid levels.
However, there is a problem…they seem to have lost test results 😦 So no answers as to her issues yet.

Ethan *LOVES* Spiderman!

Ethan *LOVES* Spiderman!

Ethan has been going really well with his constipation issues. The continence specialist we have been seeing the last six months has done some amazing things for him! Ethan is now in undies during the day, and almost ready to be out of nappies at night. As I write this, he does seem to be having a bit of constipation issues again, but a bit of tweaking to his medication (Movicol Half) will fix that up in no time. He is almost ready to be discharged from the specialist as we are so happy with his progress…thank god!!

Aaron has been plodding along with school life. He is still VERY attached to the Playstation….addictively so! I am still pushing to get him reassessed for autism, but out main focus right now is to get him treatment for his anxiety, which is slowly spiralling out of control. Having anxiety myself, I truly feel for him, and try to help him through his panic attacks the best I can. I feel that we are at a point where medication might be needed.

Aaron in his recent assembly costume. Cutest little alien or what?

Aaron in his recent assembly costume. Cutest little alien or what?

My husband, Mark,  is back at work after having nine months off with a bad shoulder injury. The injury is still there and still causing a great deal of pain, but we are hoping to have that dealt with soon.
In the meantime, we are very busy with work. Christmas and New Year is our busiest season of the year, with everyone wanting spring cleaning done before their holiday guests arrive. We havent even hit December yet, and I already have most of the week before Christmas booked out! Word of advice…if you ever want your house cleaned during the festive season, book a cleaner at least three weeks in advance!! It is guaranteed that I will have to turn away at least ten jobs a couple of days before Christmas because people have left it too late!

Hope you are all travelling well, my little readers…keep an eye out, as I have a few more blogs posts up my sleeve. Lots to catch up on!

Bella 🙂

 

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