Tuesday, April 17, 2012

Our follow-up appointment

So, we had our official clinic follow-up today.  Good thing, because we are definitely having problems with feedings at home.  Her breakfast this morning was atrocious.  She refused everything except the yogurt, although I was able to get her to eat the peaches eventually.  I had to re-mash them.  She still wouldn't self-feed them.  She vomited three times on pancakes, though.  It was awful.  She was not manipulating her food, no matter how much I prompted her.  It just bugged the crap out of me and I was near tears by the end of her meal.  I really just wanted to say to heck with it and end early, but I kept up with the protocol anyway.  It was upsetting for me, though, especially because I was by myself.  It sucked.

Of course Sarah was wonderful for her clinic meal today.  Self-fed everything, and only required a little bit of prompting.  That was mainly due to some major distraction.  She had to eat in the hallway because all the feeding rooms were taken.  Otherwise, though, she did great.  I had to tell D that it was an unusually good meal.  I suppose that's not awful since I do have some bad ones on video and have sent them to the clinic.  I sort of wish I'd gotten this morning on camera, but I'm also sort of glad I didn't.  I really don't think I want to relive that meal.

In general, we are still having a lot of trouble getting her to self-feed.  The other big problem is she isn't really moving the food around her mouth too often.  Sometimes she does, but she really just tries to swallow her food whole.  I had a great talk with the clinic people today and got some great tips.  I will be getting a protocol via e-mail soon to help with the self-feeding, and I should also be getting a plan to bowel train her soon.  Maybe, just maybe, I can finally get rid of diapers during the day.  She's been too old to be having poop accidents for a long time, so I'm anxious for it to stop.

As far as the moving food around her mouth goes, I spoke with her speech pathologist and we have a plan for that.  We are going to have an oral motor session sometime soon.  I think the tentative plan is to see what she can do with some easier foods at regular texture and move to those in her meals.  We suspect she's not manipulate fork-mashed foods because she's figured out she can get away with not chewing them.  She's used to being able to just swallow and not even manipulate pureed food like she's done for years, so she is sort of falling back into old habits.  She eats pretzel sticks at home without any issue.  It is under supervision, but I am pretty sure she hasn't had any trouble with them at all since we've been home.  If she has, it's been few and far between.  She can do freeze-dried banana chips as well with little to no issue.  She isn't as interested in those as she is the pretzel sticks, but she does eat them when we do oral motor practice.  She will grab pretzel sticks of her own accord, though.

Sarah has grown an inch and gained a pound since discharge.  When she had her well-child visit last week and measured an inch and a quarter over what she was past discharge and a pound over what she was since discharge, I thought there was a big scale/measurement discrepancy.  Nope, apparently not.  What a growth spurt!  She's grown an inch and a half and gained probably a bit over a pound since January.  I can't believe it!  Obviously she's eating enough.  Needless to say, nutrition had no issues with how much she's eating and drinking.  They were pleased with her variety of what she's taking in at home, so that's good.

I feel good about today's clinic follow-up, even though it was LONG.  So much waiting and I wasn't prepared for that.  Still, I feel like we have a plan for what to do moving forward.  I'm so glad that they are taking such good care of us, even after we've been discharged.  Had they not, I'd be totally lost.

In other news, Sean's birthday party was Sunday.  It went well, and everybody had a good time.  It was small and just family, but that was just fine.  Sean's going through a bit of a shy phase, and was even telling us "no party" that day, so I think he would have been overwhelmed if we'd had a huge party with a ton of kids running around.  My two plus his three cousins were plenty.  It helped that it was a warm (okay, hot, close to 90 out) sunny day and we could have the kids play outside.  He got some nice gifts and he's having a ton of fun with his new books and toys.  Sarah did pretty well at the party, but she seemed confused that I didn't do her protocol for her lunch that day.  She ate a tiny bit of cake icing, but wouldn't eat cake otherwise.  That was okay with me.  Sean joined in when people sang to him, which was adorable.  He got over the "no party" thing when he saw the cake and realized he was getting presents.  That's a four-year-old for you!

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