Several months have passed since our last chat :)
During this time, a few things happened.
For the past year we have been reminding doctors of Genique’s irregular sleeping patterns.
At first doctors said it is due to her vision loss, and that she can’t differentiate between light and darkness. They also said that her brain might not produce enough Melatonin.
She was prescribed extra Melatonin and we tried it for a few months. She has no problem falling asleep, staying asleep is the issue.
We then thought it might be her tonsils, as we know they are bigger than normal. The oncology team then referred us to the sleep and respiratory department.
November 2017 Genique went for a sleep study.
The test results showed she suffers from Central Sleep Apnea.
Central sleep apnea is when your breathing repeatedly stops and starts during sleep. It occurs because the brain doesn’t send proper signals to your muscles that control your breathing. The lack of oxygen in your blood wakes you.
Genique wakes 260 times per night, 47 times an hour.
No wonder she is tired…all the time.
We went back for a second sleep study to determine if oxygen supplement would work for her.
The results showed Genique requires 500ml of oxygen every night and she only woke 37 times, compared to 260 times before.
Luckily we don’t need any oxygen cylinders, instead we use this nifty little machine that produces the oxygen.
Although there are a lot going on, we think overall she is doing great as we are mostly visiting doctors for regular checkups.
Last year’s MRI in September showed improvements which got us all excited all over again.
We compared the previous MRI to the current one and we could see a change in the pituitary gland. This is the part of the brain that controls the adrenal glands (cortisol levels) and the thyroid. Previously this anterior pituitary bright spot, was not bright at all. Now, the bright spot can be seen on the MRI.
Slowly but surely something is happening…Patience is so HARD :)
After we pointed out the differences to endocrine, they too were very excited and booked an appointment for another set of tests. These tests will specifically be around the steroid producing part of the brain.
On a previous occasion these tests indicated no hormones were produced in that part of the brain.
Endocrine then explained that a repeat test is unnecessary unless there is a clear difference in the anatomy, which in Genique’s case shows positive change, and they are very curious to measure the change.
Unfortunately the test results showed Genique still requires steroids :(
Her body is still not producing enough of the stress hormone.
During the test Genique was doing really well without the steroids. This has doctors confused as the results show Genique is supposed to show worse symptoms and should feel horrible most of the time. She is doing just fine on her current steroids dosage.
There is always something to be grateful for :)
We are positive that another test will show itself in the near future.
At this stage we will continue to do life as a family and enjoy every moment together.
Another recent highlight was a surprise phone call from Dr Charlie Teo!
He just returned from holiday and was checking up on all his patients. It was wonderful to hear from him and he said he’ll keep in touch.
Dr Teo: “Send my love to your family”.
He will * always * have a special place in our hearts!
Thanks for all the support and messages we still receive.
It makes life easier knowing we have friends with us on this journey.
Till next time…
Kind Regards
Ruan and Sylvia