Oh my. So much has been going on, and I haven't had time to write about it. Here goes...
Abby has been sounding pretty nasal in her speech recently, so we managed to get an appointment for this past Monday with the cleft palate clinic. Our surgeon checked the palate to make sure there wasn't a hole that was allowing air to escape through her nose, but she looked fine.
We met with a speech language pathologist at the same appointment, who listened to Abby and felt like it was a breath support issue. Our home SLP has now given us some exercises to work on with Abby and our physical therapist is also going to show us some exercises to strengthen her core.
On that same day, we went to feeding therapy. Abby hadn't eaten much of anything since she got sick nearly a week before. I think she feels like she wants to avoid what "made" her throw up (even though it had nothing to do with it!). We've been having major feeding rebellion with lots of hitting, crying, throwing food, spitting etc. Abby is usually fairly compliant, so this is a definite change. Naturally, she ate great in front of the therapist. Of course! Thankfully, she does seem to be heading back in the right direction and I'm seeing less negative behaviors. Tonight, she actually ate all of her food without needing any distractor toys! Woo hoo!!
Abby had her well visit today and she is officially below the growth chart for weight. This is more of an issue because she is at the 50th percentile in height, so she really is disproportional. Our typically laid-back pediatrician told us that we needed to increase her calories so that she can gain some weight, so I'll be faxing the growth chart to our GI tomorrow. I'm hoping that we can simply increase the calories and not the volume of the formula, because that would be a considerable step back. We'll see what she says.
We've also been dealing with a whole lot of tantrums recently--all related to Abby's inability to communicate. She says the same thing over and over, then freaks out when I can't figure out what she wants. We show her things, ask her to show us, give her choices, etc. She has also started screaming, "Abby!! Abby!!" over and over again when she is frustrated. A few days ago, she did it for 10 minutes straight. She was totally inconsolable. It was a really rough three day weekend, but I do feel like she was better today. Maybe that's because I was at work during the day! Ha!
On the worst day, Matt filled the bath tub and ordered me to get in and relax. It was lovely. I found a little perspective in the form of the latest Family Fun magazine and some steaming hot water. I did a lot of talking to God, and I realized why all of this is so concerning to me. In some ways, I am more concerned about the communication and eating than I was when she was on a ventilator! Here's what I realized:
Before, we were too far away from "normal" for it to even be attainable. Now, we are so close that we can almost touch it. I just want to get there.
Now that I have had this realization, I've been able to chill out a little and remind myself that two year olds throw tantrums. It's still not easy, but not everything has to be a medical issue. My pediatrician also reminded my husband during Abby's well visit that we are used to seeing positive results in Abby fairly quickly. Everything so far has been relatively fast (although it didn't seem too fast at the time!), so we are frustrated that the language isn't going as fast....but language development isn't fast in general. It takes nearly 10 years for children to develop all of their sounds, and we are only at year two.
I'm thankful for the perspective. It's a journey, not a race! This isn't the typically positive medical update that I normally give, but it's where we are right now. I'm feeling better about it now, and am reminding myself that a year ago Abby wasn't eating anything by mouth or verbalizing any speech sounds! We just have to hang in there and keep working hard.