Update 23/01/2014

Good evening to you all,

It has been a few months since my last update.

Chiane had a MRI scan on the 6th of January 2014. As always, waiting to hear the results is always a stressful time for us. We had a meeting today at Great Ormond street hospital to discuss the MRI results and it is good news. Chiane’s  MRI scans were all clean. It’s almost 2 years worth of clean scans since the end of treatment…her next scan will be in May 2014.

Hormonal treatment is next on the agenda. The end of the month, on the 31st of January, Chiane will be at GOSH all day. They will carry out various tests to establish her hormonal levels. We knew this day was coming, but it is another day that we don’t look forward to, although we are fully aware it’s needed and very important.

The radiotherapy stopped her endocrine system completely which means all hormones came to a halt, including the growth hormone. The tests they will carry out the end of the month will give us a good picture of the various hormonal treatments she will receive. This means, we will need to give her an injection every morning… The hormonal tests will be carried out every 6 months, and the treatment will be altered according to her hormonal “disfunction”. This means, Chiane will receive injections, every day of her life, starting the end of the month until she is 18 years old. Another “new routine” she and us as parents will need to get use to. I’m not looking forward to giving her an injection every morning.

Schooling is extremely challenging. Although Chiane loves being back at school, and being back with her friends, academically, it’s a tough uphill battle. Her school is going out of their way to support her on her level, but mainstream schooling is starting to affect her because she “can’t do what her friends can do”.

As Chiane consultant at GOSH explained today: “having educational problems is the price you pay for clean MRI scans as her brain was fried”.  That is very true.

We worked extremely hard getting Chiane back into main stream schooling by giving her home schooling 1-1 with specialist in the field of working with children who had occurred brain damage. Being back in school, although very good socially for her, is slowly starting to have an impact on her academically. It won’t get any easier on her, only harder as schooling will accelerate…

We decided last year that we would first give main stream schooling a fair chance, but if she does find it extremely hard, we will take her out of school.

As things currently stand, we will be taking her out of school at the end of the academic year in September. Finding a specialist school for her needs is a challenge on its own. Most specialist schools are for severely disabled children who are both “fragile physically” and “delicate mentally”.

Chiane would struggle in these type of specialist schools as she is not “physically fragile”.

We eventually found an outstanding school catering for her exact needs. A specialist school catering for children who are not physically disabled but “mentally delicate”. Instead of mainly focusing on stream line academic work, they focus to prepare children for “life after school” to be independent adults…

Each child are evaluated based on their mental capabilities and then classes under bronze, silver or a gold curriculum. Although they still focus on reading, writing, maths and chemistry, it will be done on their level, in a fun learning environment. Children are taken in from the age 8, and they stay in the same school until 18.

The school has daily physio-therapy which is extremely important for Chiane’s muscle growth, they focus a lot on cooking, how to carry out daily tasks safely like working with oven etc, how to work with money, the importance of income vs bills on a very simple level. When children are done with schooling, they are able to be independent in all aspects of day to day tasks. It’s driven on very practical work and daily tasks.

As things currently stand, we can see Chiane’s friends are slowly outgrowing her and the gap will only increase. She is almost 8, and she has a mentality of a 5 year old. The school Chiane will be going to, she will be able to build new friendships with children on her level, growing at the same rate as her, which will be much better for her on so many levels. Weekly tasks will be giving to her on her mental level and rewarded on a weekly basis once she accomplished it. It’s important that Chiane needs to feel good about herself and that she can reach her goals to motivate her positively.

The specialist school we found cater exactly for all these needs…

Gene targeted therapy is still an ongoing battle. We have covered a lot of ground on this subject. I have undergone a lot of blood and gene testing. Some days I felt like vampires was draining all my blood out if me with all the tests that were carried out.

We have an extremely detailed gene mapping after myself, Andia and both kids were tested. We know what went wrong genetically and finding the correct counter treatment to fix it is the challenge. We are working closely with Germany and Switzerland, both doing a combined study specially focused on our genetic requirements. As things currently stand, hopefully June is the time we will sort this out. We keep pushing it back as we need things to be done right. If its not right and tailored to Chiane and Estians genetic requirement it’s pointless and a waste of money, so we have to get this right.

As always, we are still very focused on organic healthy food, lots of homeopath, alkaline water, exercising, etc.

It’s an ongoing battle and new lifestyle that we all had to adopt to. In general, Chiane is a very happy child and she does have a good quality life at the moment.

I will do another update in May after her next scan.

Thank you to everyone who is still supporting us on so many levels!


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