It's been a little over two weeks since Lily was able to come home, and I am so happy to say that things are going so well! She came home able to tolerate her original regimen of feeds, which was amazing to me because she had been on a fluid diet for about five days. While I don't know the level of her pain, it sure seemed as if she wasn't feeling any at all. She was so happy to be home and proved it by rolling around on the floor like her usual self.
Unfortunately, she did have a horrible diaper rash, but it has gotten better. Her stools still aren't regulated, and we're experiencing at least one blow-out per day, but putting all of that aside, she is doing better now than she was when she was well prior to surgery. She's not vomited, except when she stuck her fingers in her mouth and gagged herself. She's not been on oxygen at night, either. I'm really thinking we should get another sleep study done to make sure we're not making a bad choice keeping her off the oxygen, but she wakes up in the morning and seems well-rested, something that was not always the case prior to surgery.
Lily's even been making a few new sounds, one that I swear sounds like she's saying "mom-mom-mom," but when you look at her as she's saying it, she looks more like she's saying the "f" sound. I also heard her make a "b" sound that sounded like "bub-bub-bub." If she could learn to call Gabriel that, it would be amazing! And she's made the "f" sound in the past. I take time (probably not enough) each day getting her to watch me make those sounds, hoping that one day she'll imitate on cue and learn to use those sounds to indicate that she wants something.
On Friday, Lily's physical therapist came with a company we've worked with to get Lily's stroller, feeder seat, and stander. David, the sales rep, brought a gait trainer for Lily to try out. My phone was full of pictures, so I couldn't take any or get any video, and my camera quit working a few months ago. David took a video, but I haven't received it yet. Otherwise, I'd post it. Lily did so well in the gait trainer! She took a few steps independently! Nothing big, but still exciting for her first time! I hope we get approved for it. It will not only allow Lily to move independently around the house, but it will also help her build her trunk muscles, which I hope would help her gain more control over her balance. Plus, she loves to stand, and the gait trainer will give her more freedom of movement than the stander does.
How thankful I am to be reporting all of this good news! I'm hoping that I will be able to do the same at the end of July, when Lily's hernia repair surgery will be done. At least this past surgical experience gives me hope that she'll be able to handle the hernia repair surgery.