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
It has been particularly hard.. remember the Whole Genome Sequencing (WGS) test we took in May? The results are ready but my heart is not ready to face it. So I postponed the appointment which was supposed to be on 2nd Oct to 30th Oct.. Why you might think especially since I have been patiently waiting… Read More Gloomy
My heart melted and broke because of a little boy, Aaron. He was meant to complete our family, our hopes were for him to be the spoilt little child, loved endlessly by his siblings, the bright light and joy of our lives. Bring us all solace and unite or family.. sounds very fairy tale-y right?… Read More My Broken Heart 💔
Aaron is turning 2 middle of this month. It calls for a celebration. As usual, an intimate one with family members and we are heading to Bintan for a short getaway. I have even booked a little photoshoot while we are there. This year has been even more trying that the last.. we spent a… Read More Approaching 2..
Aaron started school 4 weeks ago. He has been doing great! Not great like he can speak, answer, listen to instructions, but he is slowly getting into the routine and is very compliant. He knows what to do when he gets to the snack table, he knows when he sees the apron he has to… Read More Rainbow & Sunshine
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?