Friday, 18 September 2015

Eventful Week

1. I have started back at work for two days a week.  My work place is being fairly accommodating by letting me return to work on a temporary part time basis and working up my hours, back to full time, over time.  This has been a very difficult decision for me.  It has been tormenting me for the past few months.  I knew that Gideon was not ready for me to go back full time and that a full time schedule would not be able to accommodate all the in house workers that he still needs to see. (Physio, OT, Dietitian, Speech, Low Vision)  I thought that I should at least trial it.  To be honest, it's still really difficult for me to say if I am hoping this will succeed or not.  I guess this is where blind faith comes in.  I feel like I can only sit back and watch as things go in whatever direction they may - Laissez-faire - not interfering, just floating along as usual, letting life's events dictate our course.

 2.  Gideon has started daycare.  With me returning to work, Gideon has started attending a daycare for two days a week.  We had to put him in a larger center, rather than a small in home daycare, so he could receive the funding for one on one services. This means that Alex and Gideon are going to two separate places and our morning drop off's are tight- very tight.  Gideon's first day went really well.  My only concern is that it is a French daycare.  Because Gideon is blind, he needs a lot of auditory cues letting him know what is going to be happening.  Maybe the French will be confusing, maybe it will be stimulating, maybe he will come home one day saying "le waaaaaa"- only time will tell.

3. Test results have come in.  We had our eye exam under sedation on Wednesday.  Our eye surgeon said that the cataracts are nowhere to be seen and that his eye pressures where looking good.  She did reassert that the back of his eyes are very under developed- this would be his Anophthalmia/Mircophthalmia   .  One blessing is that his manifestation could be far worse and that it doesn't really effect his appearance.  She also mentioned that his eye prescription has changed slightly- I'm not sure what it is now but it should be in the mail.

We also saw the geneticist on Wednesday.  She is doing a test to rule out Lowes Syndrome .  She also reviewed the MRI Gideon had last month.  There was some thickening in specific parts of his cortex.  The radiologist didn't know how to interpret what he saw so the geneticist is referring us to a neurologist.  We also talked about what our next step would be if Lowes Syndrome does get ruled out- an expansive exome sequencing test that would compare Gideon's gene's to both mine and John's.  It usually results in a 25% chance of finding a diagnosis.  This test could, if we wanted to, also find gene's responsible for medical conditions not associated with his syndrome ie. a gene responsible for colon cancer. Because John and I are also submitting samples, we have the option of learning about our own genes and if we have any that can impact our health.  Whether we actually want to know this is another question.  If it comes to this test, we will have to think hard on it.

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