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?
You know.. what ifs are very painful. Very very painful. Some days are harder than others. Having to deal with lots of what ifs.. What if i didn’t insist on inducing Aaron and he came at his own time. Maybe then we wouldn’t have to go through the whole ordeal of “where’s Alma” (that’s the… Read More What if…
This is a super rant post. EIPIC is this early intervention program for children with special needs. I have many bones to pick with how the system is run. Step 1: Get referred for EIPIC. this can come from either the neuro/genetics or whoever thinks the child needs early intervention. Step 2: See a Medical… Read More EIPIC
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..
I had a pretty rough day on the 30th of Jan. We had 3 important medical appointments that day. In the morning we met with the geneticist who had to explain the Chromosomal Microarray Analysis (CMA) Report which showed a Loss of cytoband Xp22.33/Yp11.32 and an absence of heterozygosity 2q32.3q33.1 which if you really ask… Read More Was is God or was it the Devil?
