I kinda had an altercation with the staff from MacDonald’s last Saturday. And it sucks. Let me bring you along my thought process that faithful morning. The big children were bummed that school is resuming and mock exams are starting so they asked if I could bring them to Mac for breakfast.. I haven’t had… Read More He is Special Needs
8 long months after we did the Whole Genome Sequencing (WGS) test, and the results are out.. To save you from having to google.. let me summarize it for you. More like I just extracted it wholesale from a Yahoo Support Group.. ATR-X Syndrome is an inheritable condition which affects only boys. The effects of the… Read More Alpha-thalassemia x-linked intellectual disability Syndrome
A child’s milestones is always exciting. Their first smile, their first flip, their first step, their first time sleeping thru the night and of course, their first day of school. Aaron is starting school at Rainbow Centre on 3 July. Let me give you some history on how we got here.. His geneticist and neurologist… Read More When the emo gets in the way..
Ok, so his hearing on the right is not perfect. The drs called it “mild hearing loss”.. his left ear is alright. So.. here comes my drama… You see, they kinda decided that it is a mockery to fit hearing aids for a child with ONLY mild hearing loss. In their logic, mild is as… Read More Hearing Thing..
We did the Whole Genome Sequencing test!! Its going to be a long 12 week wait.. i’m trying to not think and obsess over the dates and days.. trying. So.. the hospital’s genetic counsellor saw us when we admitted for the detailed hearing test under GA. I emailed her a couple of weeks ago to… Read More Whole Genome Sequencing – WGS
I posted in aaron’s IG this. “We celebrated taking 1st steps and now, we grieve the confirmation of hearing loss in my right ear.” Hurray!! He took steps. The joy of seeing him waddle around was so overwhelming that tears came. Happy tears. It was such a huge milestone. At least for him and me.… Read More Celebrations and Grief
It is hard because i am a perfectionist. Toy cars are meant to be zoomed across. Blocks are meant to be stacked. Stuffed toys are meant to be cuddled. Books are meant to be read. Instructions are meant to be followed. High fives are meant to be returned. Hugs and kisses are meant to be… Read More Why is it so hard?
We were sent to do a hearing test 2 weeks ago and Aaron failed the right ear.. The clinicians were very meticulous and kept trying about 3 times and they told me that they think that he is impaired on the right. So, an ENT specialist appointment was made and we saw her yesterday. She… Read More And now the right ear..