If you're a new reader of Ella's Story, you can see previous posts with more background information on her health problems here:
Or for a very long story short, here is a brief description of Ella's main chronic health struggles:
Ella was diagnosed with hemiplegic cerebral palsy in 2008 after suffering a stroke in-utero in 2007. She also suffers from epilepsy, thrombosis, dysphagia, developmental delay, speech processing disorder and Pseudohypoaldosteronism.
After months of having a naso-gastric feeding tube, Ella finally had surgery for a gastrostomy on Wednesday the 7th of September. After coming home on Thursday night, Friday was the first full day at home for Ella.
As I mentioned at the end of the previous post, Ella was doing quite badly on Thursday night, and Friday wasn't much better during the day, as she was still quite listless and vomiting if she did try to eat any food. Emily gave her some electrolyte fluids and formula feed through the tube to try and keep her salt and hydration levels up. She tried eating a bit of apple puree but vomited it back up again soon after.
After seeing her relatively calm the night before, at least when I was there, hearing she was doing so badly was very troubling. A couple of weeks before I'd taken in a photo of Scarlett to get enlarged as a canvas print for Emily's birthday, after getting a call that it was ready, I headed over to Harvey Norman to pick it up at around 5:30, a few minutes before they closed.
This is the photo, taken on the day Scarlett had her 1st birthday party.
So after picking it up, I headed over to their house to deliver it to Emily, and see how Ella was doing.
When I went in she was lying down on the lounge with grandpa watching the Wiggles, while Emily administered some medications, clearly still very weak and lethargic, and not reacting much to what was happening around her which wasn't nice to see.
Scarlett was home this time, the previous night she had been looked after by a friend, so Daniel and Emily could focus more on Ella coming out of hospital.
I thought Scarlett might like seeing the big canvas print of herself, so I picked it up off the table and showed it to her. Saying she liked it would be an understatement; her face and eyes lit up like it was Christmas with a huge grin, and she immediately rushed over to get a better look. I wanted to get some photos of her because it was such a funny reaction, so I handed it over to Emily and moved back to snap a few shots.
She was making all sorts of excited noises, followed by madly grabbing and scratching at the material, which we thought was quite funny...
...but then she did something really funny; she grabbed the print, put it down on the floor, and proceeded to lie on top of the canvas and kiss it. You kind of had to be there, but it was absolutely hilarious, I had to sit down because I was laughing so much.
Despite the amusement Emily thought it would be best if Scarlett didn't ruin it by jumping and slobbering over it, so put it back up on the table, while Scarlett continued to run around the room, laugh and fall over a lot.
A few minutes later there was a knock on the door, which piqued Ella's interest enough that she turned her head to look and see who it was.
It was grandma, who Ella was quite happy to see. Emily picked Ella up and took her over to the kitchen, trying to entice her to eat something, as she'd been bringing up any other food she'd had during the day, apart from a small packet of chips just after I got there.
For the first time that day, she actually stood up to walk the few steps over to grandma, who had brought in a lolly bouquet of sorts.
Ella reached up to grab a couple of jelly lollies to eat which was a good sign.
Although a very sick three year old, she was thoughtful enough to take one to give to grandpa, and very shakily made her way back over to the lounge.
After handing him the lolly, Ella walked back up to the TV to watch the Wiggles again with grandma, still quite unsteady, so grandma held on to her to make sure she was ok.
To show her how funny Scarlett's reaction to her photo was, Emily gave Scarlett the print to take over to grandma, no less excited than the first time she saw it, judging by her expression.
Emily then tidied up Ella's hair a bit, before grandma and grandpa had to head off.
She was standing by herself next to the TV for a minute or two, but swaying a bit and still looked shaky, so I made sure she was ok, and then brought her over to the lounge, as it looked like she was going to fall over.
After going through a few DVDs to pick from, Ella pulled out the Lion King again which was good. After seeing only bits and pieces in hospital while I was there, I'd actually been keen to watch the whole thing. So we spent the next hour and a half on the lounge watching the movie, with Ella sleeping on and and off in the meantime. Considering how badly she went trying to eat the rest of the day, it was good to know that she was quite calm and peaceful, and that she kept the chips and lolly she ate down.
After the movie had finished it was past her bedtime, so Emily picked her up for a cuddle with Dad before she went to bed. He had been holding Scarlett while she had her bottle of formula, but had long since fallen asleep.
The two of them sleeping peacefully side by side made for some nice photos.
Emily went over a little bit later to see how Ella was doing, and give her some more water before bed.
After putting some water through the tube, Emily carried her off to bed, and I left hoping the next day would be a better one.