Thursday, March 26, 2015
Mummy’s with her.
She grab mummy’s attention with her vocable call for attention. Mummy asked if someone walked past the room.
She answered yes.
Mummy asked who was it?
She managed to vocalized “da-da”
We tried that a few times of me walking by and Kaelyn calling out and identifying who walked past.
Then I switched role with mummy.
She manage a “muaaa”
Later I told her to try this “muahahahha”, something like Dr. Evil’s laughter.
She did a “muaa. Haha”
Her body is limiting everything a human can do. Even the muscles to smile is diminishing. When smiling she could only manage to curl one side of her lip up.
It’s really nothing to scream about for a 3 year old to barely make phrases or speak the words that resonates with just ahhs but inside us, we are squealing with delight for Kaelyn.
Friday, March 20, 2015
We brought Kaelyn to her home care appointment last Friday. It’s her first time out of the house since last December (not counting trips to the A&E)
Mandatory for every visit. The weigh in of daddy and Kaelyn. We totaled almost 100kg(97kg). We both grew in weight! Kaelyn was almost 15kg
I think she grew in her height too at 103cm.
There were discussions which mainly focus on her current main risk now, which is aspiration.
Recommendations were thrown in 1. Change to a faster absorption milk feed 2. Change to a GJ feeding tube
We are leaning towards option 2 ultimately as option 1 is a may/may not help.
However the frequent reports of bursting of the current batch of GJ tubes worries us.
Monday, March 2, 2015
She looks like she was in discomfort. We went through part by part asking if this was painful. she said her stomach was aching. We had to suction her thick secretion present in her mouth.
It wasn’t the 1st time tonight she had to wake up and be suctioned. I was too deep in the sleep to hear what’s going on.
We cleaned her, settled her down and stabilized her and everyone tried to went back to bed.
This time she was aspirating. One of the worst fear we have.
My helper was suctioning. Had to bag her for a while. Managed to clear her airway and pacify her to rest without more drama.
Let’s hope no more drama
Kaelyn aspirating isn’t the first time within a short time frame.
It seems it happens when her body is stressed. It may be a sign of fundoplication becoming loose.
Right now K is knackered and is asleep with higher than usual heart rate. The oxygen concentrator is still humming away, providing O2 for her.
I couldn’t rest now, but just wondering…
How could we do without the oxygen concentrator for 2 years?
Silly me. By running to the hospital every time shit like this happens.
Both hospital and us could save more money by making this a subsidized standard item for special needs kid like K in the beginning. We save on hospital trips. They save on subsidies. They just need to prevent us from going to hospital 1 time less to cover the cost.
PS Just going off tangent wildly on the last part. Silly sleepy brains not going to sleep but having silly thoughts now.