Baking Bread and Licking Envelopes

I'll make this one quick. We baked bread again today. This time it was black/blue/raspberry bread and I threw in some oatmeal for, well, I don't really know why. It's probably my mother's voice, "Eat white bread, the sooner you're dead" mantra echoing in my ear. Diet Coke for a pre-teen? Sure. Just no white bread.

Anyway, that's another post for another day.

VeeGee and I baked bread today and before we mixed all the berries in, I told her that she needed to try one ittttty bittttty (we're talking minuscule, people) piece of raspberry. Well, you'd have thought I was asking her to cut her arm off. Or eat poop, or something. We went round and round for about five minutes and she finally -- sort of -- "ate" the mashed up little piece that had, by that point, melted on my finger into a rather macabre-looking lump of fruit.

So, we move on. Bake the bread. Burn the arm (mine) with the closing of the door on the arm bit (I'm in agony). It's delicious, if a bit dry and not too sweet.

Fast forward. We didn't get to go to her playdate with her "BEST FWEND IN DE WHOLE WIDE WOYALD," because I feel icky, so she decided to color her friend a lovely T-Rex. And then she decided that the picture should be put in an envelope, and sealed with sticky tape (I think that's what Dora calls Scotch tape). I explained to her that, no, all you have to do is lick the envelope (you know, like George's Susan) to seal it. So she did. Vigorously. With no shuddering. Over and over. To such an extent that there is no way that the lovely flavor of adhesive escaped her sensitive little palate. But does she object to that, likely toxic, taste? No. No, she doesn't.


But lick a raspberry? No way.

It's Come to This

I really have been writing. Just not here. I'm going to finish this G-D thesis THIS G-D semester if it kills me. And, in between my memoiry angst, I'm writing some stuff for Memphis Parent Magazine. So, in lieu of an actual post today, I thought (inspired by Elizabeth Alley) that I'd make a list of the things that I would have written about had I been writing here.

1. VeeGee started school in August. Her pre-k teacher is awesome (and strict!). I can't believe she's there every day. Crrrazy.
2. I've, as of today, lost 40 pounds (since April). And yet, I don't look very different when I look in the mirror.
3. I went to my second bachelorette party with the same group of girls at the first, about ten years ago. It was fun, but the strippers were icky. I heard tell they put on "crotch cologne."
4. VeeGee has spent the night out twice, once at the great grandparents, and once at the grandparents. She didn't miss us at all.
5. She is still not eating, but she's talking up a storm.
6. We're going through, perhaps, the very worst financial crisis of our marriage. And yet, we're relatively happy. I don't know whether it's denial or just a deep-seated reliance on each other. Probably both.
7. I am feeling really really sad and worried and afraid that I'll never land a job.
8. I'm afraid that our financial situation is going to force us to stay here when we should be moving on.
9. I am both sad and happy to hear that VeeGee is most likely not going to be allowed to stay in the special needs program.
and, 10. I've seen a hummingbird almost every day that I've sat at my desk writing. They're extraordinary. In the future, I will call this the Summer of Hummingbirds.

Okay, so we'll call them "InchStones"

VeeGee licked pudding off of her fingers (three weeks in a row!!!!!!!) at feeding therapy without coercion OR gagging!!!!!!!!!!!!!!!!!!!!!!! Yesterday in speech therapy they were playing with play-doh and her therapist cut out a "cookie" which VeeGee, with a bit of doubt in her eyes, picked up and licked (I guess she's starting to get the hang of the routine!). However, she was none pleased with the taste and said, "Play doh tastes yucky!" (Also an inchstone!!!!!!!) Yes, VeeGee, play-doh is yucky tasting. But YOU ROCK!!!!!!!!!!

Uphill Battle

Last night wasn't so great. I think she was too tired and over stimulated - we'd been at the funeral home for a visitation for K's uncle and VeeGee was in rare form (head-butting form, to be specific ). The meal when we got home consisted of more persuasion than we'd been having to do, but we pushed on through. It actually got better toward the end, but she was not very happy.

This morning started out rough too, but she rallied and finished her six bites without protest.

It feels like two steps forward three back and so on, but I am still convinced that we're doing the right thing. When I told her OT what we were doing, she was visibly relieved (I think they think she's kind of spoiled at her therapy clinic and this is the replacement OT for the one I fired for putting VeeGee timeout during a session ). She also likes the idea of not letting her wipe her face off with a napkin during the session. I'm back and forth on that one. I know I'd be stressed with apple dripping off my chin!

The OT also suggested ramping up in other sensory areas so that this isn't such a blip on the screen during the day (does that make sense?). We're brushing more, join-compressing more, etc. etc. It feels as if VeeGee is really in a growing spurt, and I hope that all of this will help her cope.

I'm letting her wipe some. But I am waiting until she asks for it - so that it might increase her body-awareness (which is a HUGE issue for her). It's rather pitiful because she wants to wipe with the back of her hand, but then freaks because there's stuff on her hand. I feel for her - I'm pretty freaked by this stuff too.

But that's the thing: it's about letting her integrate these sensory experiences, about helping her process them in a way that will allow her to more productively navigate her world. There are things that, because of my own sensory issues, I simply cannot do, that are WAY TOO STRESSFUL for me because of my inability to handle certain sensations. I really don't want that for her and I hope that I'm able to help her overcome it, to the extent that she can.

Onward

I wanted to mention (at the risk of sounding defensive), that this isn't sudden. We've been working toward this for a long long time now. Also, she used to eat a tiny bit. We discontinued that once she came to us, under doctors' advice, because of the severity of both her aspiration and GERD, which caused her to throw up every single time.

We just believe, along with her therapists, ENT, GI, and Ped, that she is ready cognitively as well as anatomically, to ramp it up a bit. I most definitely will not force anything - but in this short time she has gone from shaking an crying to just opening her mouth and swallowing. It's pretty amazing, and I have to keep reminding myself that it has been appropriate to NOT do this before now. I actually am feeling more guilty about not pushing her previously than I am about pushing her now.

She has always mimicked eating, tried to feed us, wanted to sit at the table. We just haven't made any issue of her food avoidance. It's not that I think I was wrong to have been "easy" on her, I can't help but wonder if, as soon as we got the go ahead (which was months ago), we'd be so much further along.

So, it's kind of funny (though I totally understand where y'all are coming from!!!!!) that this has kind of come off as if I'm pushing too hard - because my greatest concern was that I hadn't pushed hard enough.

Five Bites

I'm getting excited. We're up to five bites with NO GAGGING - just a little persuasion. And by persuasion I mean - "Open your mouth, please." That's it, seriously!!!!!!!!!!!!!!! K and I have been stopping people on the street to tell them!!!!!!!!!!! We've tried bananas and now pears. Seems like the pears were a bit better. Next I'm going to try peas (blech, but it's not sweet, so I figured we'd see if that is better/worse).

Feeding The No!

It just feels like I've hit a wall and the "force" (hyperbolically) is what I feel is next. The thing is, VeeGee has kind of hit this wall before in her other therapeutic areas (speech, other OT issues, and PT). At a certain point, we had to start limiting her choices and eliminating the option for refusal - not because she couldn't do something, but because she figured out that we'd let it slide if she chose the NO option. Believe me, I'm a sucker for this kiddo, particularly because of her past beyond her medical issues, and I don't force anything - have actually fired therapists who did try that.

Regarding the shudder - that is a response that she has to a lot of sensory stimuli. If she gets something sticky on her hand, she'll shudder. It's kind of a "Oh God, get this off of me!!!" kind of response. I wasn't at all surprised to see it with the food. We are working on desensitization through brushing and input of different textures.

So, here's the good news! After only four of these "meals" - three bites each - she opened her mouth all the way without any extended point-counterpoint. And swallowed!!!! Yep, I said it, swallowed (that is something I cannot force, no matter what!!!!) So, two meals running @ 4 bites each, she's done that. And then off to Dora . . . .

I think this issue, for me, is about listening and watching VeeGee to determine for her, when she can't for herself, when it's time to move to the next step. I have to do this in every area of her life. I'm pretty excited about this decision because it is such a huge thing for her. She hates hates hates hates the tube - wails and cries when it's time for it. I don't think that a bit of coercion in the direction away from it can be a bad thing.

It's tough knowing the best thing, isn't it? And, who knows, this might not last. I just felt like I'd be doing her a disservice to not try. It just feels like I've hit a wall and the "force" (hyperbolically) is what I feel is next. The thing is, she has kind of hit this wall before in her other therapeutic areas (speech, other OT issues, and PT). At a certain point, we had to start limiting her choices and eliminating the option for refusal - not because she couldn't do something, but because she figured out that we'd let it slide if she chose the NO option. Believe me, I'm a sucker for this kiddo, particularly because of her past beyond her medical issues, and I don't force anything - have actually fired therapists who did try that.

Regarding the shudder - that is a response that she has to a lot of sensory stimuli. If she gets something sticky on her hand, she'll shudder. It's kind of a "Oh God, get this off of me!!!" kind of response. I wasn't at all surprised to see it with the food. We are working on desensitization through brushing and input of different textures.

Grace has a pretty bad cold this morning, so we're going to go easy with this - but still press on. I think consistency is going to be key (it always is, right?!).

Eliminating the NO option in feeding

VeeGee's feeding therapy is just going NOWHERE, not one inch closer to anything actually going in her mouth. So, I decided a couple of days ago, "no more fun and games." What I mean is that the feeding therapy that we've done is very play based (which, of course, suits my parenting inclinations quite nicely), but it's not working. At. All.

For the past three days I've been "forcing" her to eat three bites of pureed food (apple/banana). It goes like this: "Look, you've got some food to eat! I'd like for you to eat three bites, and then you can go watch Dora. Do you want to put it in your mouth, or do you want mommy to help you?" "NO!!!" (covers mouth with hands, turns away, pushes bowl away). I ask a few times, then say, "Okay, mommy will help you." Usually I've been able to get her to kind of open her mouth for me to put it in, and when I say kind of, I mean, I actually really have to sneak it in. She's swallowed about three or four times, the rest, she's just spit it out.

This morning, though, she, on the third bite, actually opened her mouth on her own. Her eyes were squinting and she was shuddering, but it was open. And she swallowed. I was so excited.

So here's the worry part: I do not want to create an issue where she is afraid of food, or that she feels forced or whatever. But the fact of the matter is that she is going to have to learn this at some point, right? I mean, I can't just let her keep ignoring all of the "gentle" "therapeutic" ways of cajoling her. I actually really think she's too ornery for that.

Update

I's been a while since the last post, so I thought I'd give y'all some updates. VeeGee has just blossomed since the trach removal in February. Her language has exploded and she's saying full sentences (mostly only and I can understand her, but that's okay). She's LOVING playing with the dogs - this seems to be a relatively new passion for her. She's also having a GREAT time with her good friends L and J.

She's finally moved into her own room. The separation was really hard for me, but she seems to be all "here's your hat, what's your hurry?" about it. It's nice having a grownup room again after a year, but I'm still missing waking up to watch her breathe in the middle of the night.

Next week we're headed back to Nashville to consult with a new craniofacial specialist, who will be taking over her care relative to her cleft palate fissures. The repairs are going to take time, but we feel like the doctors at Vanderbilt are both more proactive about her treatment and much more team-oriented than what we've been experiencing here in Memphis. We're also going to be seeing a pulmonologist, a GI doctor, and an allergist. She's been dealing with a rattly chest for quite a while, despite twice a day inhaled steroid treatment; as well as some developmental issues with her digestion that we are thinking might be relative to food allergies. We'll see.

She is still 100% tube fed, though, with her feeding therapy group, she's 'entertaining' the idea of touching some foods with her fingers. Occasionally, something makes it all the way to her mouth, but we've yet to see any intentional swallowing action. She will drink water though, lots of it! I think that's about all for now. We hope you all are well and that this update finds you as happy about the sunshine and spring weather that we are!

Update

All! A is doing very well. We're figuring out the new feeding schedule, which is pretty much just 24 hours a day. Hopefully, her stomach will start to process more and more quickly soon. She seems to be in less and less pain and is not having to take any prescription-strength painkillers. That's a relief. We have, however, had to re-start most of her reflux meds. Hopefully, this will be temporary, but, still, it's better than it was before the surgery, and we're very grateful for that. The washing machine has seen a lot less action since we got home since there's not as much vomit-soaked laundry! Yahoo!!! AND, we have a date scheduled for trach removal! She and I will be traveling to Nashville again to have the trach taken out on February 11th. I am SO excited about this and really looking forward to the changes it will afford our sweet girl. I can't wait to really hear her voice.

Update

Thanks for the all the messages!

We have been on pedialyte feed for four hours now, and she seems to be tolerating them. They're giving her 10ml/hr continuously, so we won't be draining her stomach to see if there is residual. We'll just have to wait to see if she fills up to the point of gagging. So, I'm watching her closely while she watches Barney and Elmo (again, and again).

They didn't stop the epidural and have actually reordered it for an additional day. That means that we'll be here until Wednesday, at least.

Tomorrow is K's birthday, so I think he'll be driving over for an overnight stay with us. Pray that he has safe travels.

Y'all take care and enjoy your Sunday. I probably won't post again until tomorrow unless something major happens.

No Food Yet

We have not been able to start the bolus feedings yet, as there is still fluid in her tummy (from last night, I guess). The docs now just have her on a drainage tube to see how much is coming out. This complication is going to extend our stay a bit.