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Tuesday, February 28, 2012

New perspective on feeding therapy, eating, and "eating"

(Alternate title: today I feel the need to complain/vent/get it all out)

Sometimes when we think we have it all figured out, reality hits us in the face and we realize we don't have a clue. Well, maybe a clue but definitely not the whole picture. When I brought Raya home from the hospital with an NG tube, I naively believed that she would only have it for a couple weeks or maybe a month or two at the most while we got her reflux under control. And maybe if there had been a quick resolution to her GI problems, that would have been the case, but there wasn't. It took me a long time to finally comprehend that the tube was there to stay. Once I finally realized that, I still naively believed that she would need a tube for a year or two but then she'd be able to get rid of it. I also naively believed that resolving her visceral hyperalgesia (hypersensitive gut) and chronic vomiting was the biggest hurdle we had to clear. Wrong-o.

Now here we are, 2 years, 1 month and 1 week after her initial NG tube placement and I am finally starting to realize that although I'm pretty sure we're IN the tunnel and I do BELIEVE that somewhere there's a light at the end of it, we are nowhere near it. She doesn't fear food like she used to and sometimes she's genuinely interested in it which is fabulous, but she is not an "eater" yet and I don't feel like she's really anywhere near that level.

I've been accused at times of being a pessimist when it comes to Raya. I said something once about "Next time she's in the hospital, blah blah blah" and was told, "You shouldn't be thinking negative like that! You should say 'IF she's in the hospital again...' instead." People who I know mean well say things fairly often like, "One of these days she's going to be eating everything in sight and this will all be a memory." My responses to things like that might come across as negative but what people need to understand is that for me, life as I know it with Raya is a reality. She's doing great, but it IS realistic of me to believe that at some point, she could be back in the hospital. We've been extremely lucky with her so far and she hasn't had any trouble with her G tube site (infections, etc), but the reality is that she is still being fed through a piece of medical grade silicone that's implanted through her abdominal wall into her stomach, and there are risks associated with that.

As for the comments about eating, I understand that people are trying to be supportive but the reality there is that Raya is no closer to being able to sit down and eat a full meal than I am to being a professional golfer. I've whacked a few golf balls with a club before and if I had some practice, I could probably play a decent game of golf, but there is no way that the little bit of experience I've had makes me anywhere near the level of a professional golfer.

The same is true with Raya. She's dabbled here & there with food. She HAS actually eaten some and for a while, she was eating a significant amount of calories with about 1/3 of her daily requirement coming from food, but that doesn't make her anywhere near the level of a true "eater". She will probably make some leaps & bounds at times with her eating, but this is going to be a long, slow process. Think of it this way: If you're trying to get from point A to point B, you need to take the train that goes between them. If you catch the train at point A, you'll get to point B on schedule and pass all the mile markers in between them. However, if you miss the train at point A, you'll be forced to take an alternate mode of transportation. Not only will you not get there on schedule, but you will miss all the mile markers and you will have no way of knowing how long it will actually take you to arrive at point B.

There is a "normal" route for children learning to eat. If there are no disturbances that keep them from learning to eat on schedule, they will meet all of the milestones of oral development on schedule and by the time they're a toddler, they'll be able to sit at the table and eat a meal. However, if they miss that train at point A, then they are forced to learn the hard way. Instead of taking a train to point B, they're stuck riding a swaybacked old burro named Pepe' who can only turn left. They CAN still get to point B, but it's going to take a lot longer to get there and the journey is going to be rough and smelly with a lot of unscheduled detours.

Today, I've been feeling a little bit like ol' Pepe' just made one too many left turns and got us WAY off course. And then on top of that, I also feel like maybe we weren't where I thought we were anyway. We had feeding therapy today and don't get me wrong, I love both of our FTs and I'm so grateful that Raya is able to have feeding therapy, but honestly I feel a little discouraged after every session no matter how well it goes. Every FT session is a little reality check, and that's a good thing and a bad thing. It helps when I see Raya eating (meaning actually swallowing) things that she won't normally eat. She IS making progress on learning each component of eating (biting, chewing, swallowing) and we are light years ahead of where we were a year ago. Then on the other hand, I feel like what we do at therapy is just a tiny drop in the bucket compared to where we'll have to be in order for Raya to not need a feeding tube anymore. Eating a couple tablespoons of something with the feeding therapist once a week really isn't much in the grand scheme of things.

It's hard to even quantify or measure progress with eating. Sure, you can count calories and measure quantities of food ingested, but those aren't the only factors involved. Raya was eating as many as 350 calories in a day before she got sick a couple weeks ago and now she's back down to less than 100, if she eats any at all. On the other hand, she's been doing better with chewing the things that she does put in her mouth. She's chewing well enough that when she spits out everything she puts in her mouth, it's been pulverized into a nice goo.

Today's therapy session went great. Raya did pretty much everything her therapist asked her to do. She chewed on the chewy tube, she let her do some brushing inside her mouth, she played tug-of-war with the wet washcloth in her teeth, and then she even let her therapist feed her some plain Greek yogurt. They took turns putting some in Raya's mouth. Raya wouldn't really take any off of her own spoon but she'd take it from her therapist's spoon. She ate almost a whole tablespoon that way and then they moved on to strawberry flavored applesauce. Applesauce is one thing that Raya has never had any interest in eating whatsoever. She's tasted it before and that was enough. Today though, since they were making a game out of it and since it was mixed with the remnants of her yogurt in the bowl, she let her therapist feed her about 2 tablespoons of it.
Does this mean she likes applesauce now? No. Is it possible that she'll eat it again tomorrow? Yes. Is it likely? Not really. (See, that makes me sound negative doesn't it.) The reality of it is that I am not Ms. C the feeding therapist, I'm Mommy. I'm not the fun ladies that come to the house to play with her once a week.

One of the struggles with turning a non-eater into an eater is that most of us have no comprehension of what it's like to not know how to eat, to not understand the connection between sensations in the stomach and eating, and to have no desire whatsoever to go to the exhaustive effort of eating. As much as I try to see things the way Raya sees them, it just is not possible because I have not experienced that myself. Even though I feel like I'm pretty laid back with my expectations of her and I feel no need to rush her into eating when she clearly is not ready to be pushed faster than her own pace, it's hard for me sometimes to gauge that pace. Some days it seems faster than others. This experience is just as new for me as it is for her and neither one of us really has a clue what we're doing! :)

Her FT and I were talking today about how the emphasis still needs to be on making food a positive experience for Raya. She has made great progress but there are still a lot of walls that need to come down for her. As tempting as it is for me to focus on the calories & quantity of food Raya is consuming, I need to take a step back and focus on making food enjoyable and helping her improve her technique. (side note: in 5 years of coaching high school pole vaulters and drilling technique into their heads, I never imagined I'd have to work with a 2 year old on her eating techniques.)

So that's my new perspective on feeding therapy/eating: Right now, it's not about calories, it's about food being her friend and gaining the skills necessary to eat it safely. I'm choosing to stop straining to see the light at the end of the tunnel and instead, I need to just keep putting one foot in front of the other and keep walking in that direction. Eventually, we'll get there.

Now comes my public service announcements for the day. There is a difference between eating and "eating". If you see a tube-fed child stuffing food in his/her mouth, PLEASE don't take that as the child actually eating. Whenever we're out in public and someone sees Raya take a bite of something, it's almost always followed by someone asking me, "Oh, is Raya eating now?!?" No. She may appear to be eating, but she's not. This video is a prime example of what I'm talking about.
(Do you like how Raya won't stay off the table now? None of us get any peace during mealtime unless that child is in bed or strapped into her high chair. I am obviously not an adequate substitute for a licensed occupational therapist and we can't WAIT to start OT again after 2 1/2 long weeks without it but that's a whole other post.)

So yeah. A child who looks pleasantly plump and is shoveling food into her mouth could easily be mistaken for a kid with the ability to eat but really, this is a child who is stuffing food into her mouth to get the sensory input that she's looking for. What I didn't video tape is the part half an hour later when I had to physically restrain her to dig the food out of her mouth because she's not capable of chewing & swallowing it and that was never her objective in the first place. She "eats" food, but she doesn't actually EAT it. There is a lot of biting, mushing food around, an occasional swallow, and a lot of holding food in her mouth for a long time and spitting it back out.

*Sigh* Where am I going with all this? I don't know. I guess it's just been a frustrating day. It's hard not to feel like Raya's lack of progress (and let's face it, regression) lately is a reflection on me. Some days, I feel like there is too much being asked of me. We have all of these wonderful therapists who give us great home programs to work on and schedules to keep that I know will help Raya but reading them on paper and putting them into practice are two entirely different things. Not to mention that Raya isn't a very willing participant when I'm the one trying to do them with her. Add in the 3 other kids and everything that I SHOULD be doing with all of them and I don't come close to accomplishing ANY of it. Don't get me wrong, I love all 4 of them dearly and everything that comes with them and I know I need to stop making excuses and try harder.And really I'm NOT looking for sympathy or pats on the back or anything, I just feel like whining today.

Monday, February 27, 2012

ANOTHER accidental tube removal

This is starting to sound like a broken record, but yes, Raya's tube came out AGAIN. There are no pictures this time because there was blood and a moment of slight fear involved. This was by far the worst one she's had. I got her out of bed this morning and laid her down to change her diaper and realized that her G tube was dangling from the extension tube that was taped to her stomach. When I lifted up her shirt, there was dried blood all over the stoma and part of her stomach. And her finger. Because apparently an empty stoma is a great place to stick a finger.

The crazy part is that I have NO idea how long it had been out but it had obviously been several hours because everything was dry. I don't know when or how it came out but I know it was still in when I went to bed at 10:30 last night. There was a big chunk of dried blood in the center of the stoma and the hole looked so tiny that I honestly expected to have to take her to the hospital to get the tube put back in. Normally when the tube is out for whatever reason, you can still see a hole in the center. This time, There was nothing. It honestly looked like a belly button and I started thinking about who might be able to watch Kaida while I took her to the hospital. Since it was only 7:15, I figured I'd at least give it a good try before I made any phone calls.

It took a massive amount of KY jelly and about 10 minutes of poking, pushing and wiggling, but it finally went back in. This is one situation where I'm really glad that Raya has such a ridiculously high pain tolerance because she squirmed a little bit and said "Ow" a couple times but for the most part, it didn't bother her. (We've come a really long way since her NG tube days. :) I suppose that's also why it doesn't bother her to stick her finger in the stoma whenever the tube comes out. I put extra water in the balloon this time and hopefully that will help keep it in. I already had 5ml in it so it shouldn't have been a problem anyway, but hopefully the 6.5ml I put in it this morning will work better.
Just to be on the safe side, I left a message for the GI nurse just in case they thought we needed to have it checked out but she said as long as the tube is flushing ok, we don't have to come in. Also, the results were in from last week's labs and things look pretty good. A couple of things were a little off but I don't think there's anything to be concerned about. Thank goodness for near misses. A near miss is still a miss! :)

Friday, February 24, 2012

Periactin and another accidental G tube removal

I love her dearly but she is wearing me out. She is non-stop on the go from the minute she wakes up in the morning and starts yelling, "Mommaaayyyyyy! I wah OUT!" until she finally goes to sleep at night and sometimes also in the middle of the night when she wakes up after her evening doses of meds and can't go back to sleep. Today has been a long day.
I was starting to feel optimistic about Raya being back on Periactin. (it's an antihistimine that's also used to stimulate appetite) She started back on it on Tuesday and hasn't had a real nap since then BUT she has started asking for food again and has been eating some of it. This morning, she REALLY wanted a Nutrigrain bar. (side note: for whatever reason, my kids call them "soft granola bars" so it took me forEVER to figure out that "nah-duhba" meant that she wanted a nutrigrain bar) I gave her half of it and she seemed really happy to have it and was doing a good job chewing it and then I turned around and it was all coming back out:
So I guess we haven't really moved past that spitting everything out phase yet. She knew I was taking her picture and she said, "No see me! It gross!" Today was day 4 of Periactin so she'll have the next 3 days off and start up again on Tuesday. We didn't have any really bad insomnia nights like we've had before with it but she hasn't had a good nap the whole 4 days. She seems conflicted like there's a part of her brain that's telling her she wants food but then there's another part of her brain telling her that she shouldn't eat it. We'll see what happens on the next round. It would be nice to get her oral calorie count back up to where it was before.

I put her in bed for a nap at the normal time and one of Kaida's little friends came over to play, which was SO nice! I knew there was very little chance of her actually going to sleep but I tried anyway. Another friend came over a bit later so I could do 6 week pictures of her little baby and when we were almost done, Raya had decided she was done hanging out in her crib so I got her out. I was trying to get the last few shots of the baby and Raya was totally fascinated with him. Every time I would be a half second away from clicking the shutter, her little head would pop up in the frame right in front of his face. Her curiosity was cute but she just wouldn't stay out of the way long enough for me to snap a picture! We finally had to tell her to go see if there were any airplanes and she jumped up and ran to the window to look. :)
Her PT session this afternoon started out really well. A little too well, actually. Remember how last time, Raya spent the ENTIRE appointment trying to get away from her PT? Well this time, she saw Jessica, dropped what she was doing, went over to her and started hugging her leg. Then she waited for Jessica to squat down and hug her back. Since she was being friendly, Jessica picked her up and Raya just laid her head on her shoulder while she did a little bit of stretching on her. We were both kind of in disbelief at that point because it was SO not like Raya.
Then I took a pencil away from her because she was drawing on the toy shelves with it and the meltdown commenced. It lasted for most of the afternoon. There were a few quiet moments during the PT session but for the most part, she was crying, whining, yelling, trying to get me to pick her up, trying to get onto the counter, trying to get onto the table, trying to get away from Jessica again, and so on. And sadly, we're running out of things to work on with PT so it may not be much longer before we don't need it anymore. We will miss our PT when Raya gets discharged! We have been SO blessed to have such great therapists working with Raya!

After Jessica left, Raya decided she needed some water in a cup and a spoon to play in it with. She was bound and determined to push one of the chairs across the kitchen to the silverware drawer so she could see into the drawer to get a spoon out. I kept taking the chairs and putting them back at the table but she would just scream and yell at me to let go. Then I sat on the chair she was trying to push and she started yelling, "Dih OFF Mommy!" She was an angry little thing, let me tell you. It just kept on going too. She would stop crying about one thing and then another tiny little thing would set her off again.

Right as we were about to walk out the door to get the kids from the bus stop, she was throwing her fits again and wouldn't hold still long enough for me to tape the extension tube to her stomach. I handed her the backpack and as she yelled, "No wannit! You hold it!" at me and handed it back to me, she stepped on the tubing and her G tube popped right out of her stomach followed by...stuff. Stomach goo. And a little "tummy burp" that sounded like a balloon deflating. I laid her down and grabbed the nearest thing to clean up with and told her to hold still while I went to find the syringe to put it back in with. Of course when I got back she was just laying there playing with the tube.
I have to say, I'm getting pretty quick at popping that tube back in when it comes out. I think this one was my record though, despite having to repeatedly push her hands out of the way. She has this fascination with touching the hole when the tube isn't there. And by the way, I've realized lately that it's a little sad that I've become so desensitized that it doesn't even phase me to have her tube come out and have to put it back in. Such is life, I guess. But what can I say, we were in a hurry and had to get to the bus stop. :) Honestly I was just grateful that it was right BEFORE a feed and not right AFTER like some of the other times it's come out.

She finally fell asleep right when we pulled up to the bus stop so I rolled all the windows down (it was in the high 70s today) and let her stay in the car and sleep for a few minutes while the kids played. She woke up when we got home and went back and forth between being happy & crabby. It's hard to even find words to describe how she is but just being around her can be so exhausting sometimes. She throws tantrums like any ol' 2 year old but they just have this extra Raya flair to them that is probably amplified by the lack of OT (which hopefully we'll be starting again next week). She's also been doing that funny thing where her left cheek turns bright red.
It's kind of hard to tell in the picture but the right cheek wasn't red at all and the left one was bright red all over. I keep thinking maybe it's just dry skin so I put lotion on it but it doesn't seem to do anything for her and I hope it's not a sign of strange things to come.

This evening we went to a wedding reception for one of Donny's cousins and Raya nibbled on a couple crackers and a little bit of a roll. She also suckered somebody into giving her a cup of ice. For the rest of the time we were there, she played with the ice. She held it in her hands until it melted, put it in her mouth and chewed it a little, and thought it was really funny to spit it back into the cup. By the time we left, her fingers were bright red and freezing cold and she didn't even seem to feel it. *sigh* It was a good day but also a long & tiring day and I'm so glad it's the weekend because I'm ready to just stay home and do nothing for a day or two.

Thursday, February 23, 2012

You know you're a special needs mom if...

I was driving to the post office today and while stopped at a red light, I felt my car start to vibrate. As the brown Oldsmobile with fancy chrome rims bounced up next to me, the vibrating turned into full-on brain rattling thumping bass. I felt like I was sitting in a massage chair. I looked over at the car and it was then that I caught myself thinking, "Wow, that kid must be craving some really strong sensory input! I wonder if he's been evaluated for sensory processing disorder." Then I started laughing out loud at myself. I don't know what was funnier, the fact that I actually thought it or the fact that I now sincerely wonder if the people who like to ride in cars with the bass cranked way up like that might actually have sensory issues. 

Wednesday, February 22, 2012

Pardon me while I brag

I am SO proud of Raya today! I'm also proud of the phlebotomist that drew the full 10ccs of blood that she needed on the first poke. :) Raya has a reputation for being difficult to draw blood from. Her veins are small, "valvey", and they tend to roll and/or collapse. I can count on 1 hand the number of times in the last 2+ years that anybody has gotten the amount of blood they needed out of her in one stick. (I think today makes 3.) Today's blood draw was without a doubt the easiest & best one we've ever had with her.
She's such a smart girl. As soon as we walked into the drawing station, she knew what we were doing and totally took it like a man. Only better than a man because she didn't whine. :) She sat on my lap, pulled the pad down that goes across in front of us and stuck her arms out. (another sad but cute moment :)
I told the girl that Raya's usually a hard stick and puts up a pretty big fight so she got another lab tech to help hold her still. (the other girl did Raya's last set of labs so she knew what I was talking about :) Raya watched what they were doing the whole time and tensed up a tiny bit when she saw the needle near her arm but then she relaxed and did not even FLINCH when the needle went in. The lab tech got the needle in the perfect spot on the first poke and got all the blood she needed faster than anybody ever has before. Raya sat completely still the whole time (which is SO out of character for her) and didn't make a peep. She's such a tough girl! When they were done, she picked out some green coband for her arm and we put some on her tubie doll's arm too:
Is that not adorable? And for the record, I keep trying to put the baby's clothes on but Raya just rips them off. Her jammies aren't G tube friendly anyway so for now, the doll just stays clothingless.

Our GI visit was good aside from the fact that I was 10 minutes late. I've only been late to that office twice before and only one of those was my fault, and they were both over a year ago so it's not like I make a habit of being late to those appointments. The office staff was crabby about it and the medical assistant that took us back (who we've never seen before so she must be fairly new) was pretty snippity. She kept making reference to the fact that this would be a really short appointment because we were late. Finally I said, "Well, I guess the doctor and I are even then because I had to wait 30 minutes for her to get here once when she was stuck in trafffic." She was much nicer about it than everybody else. She said, "Don't worry about it, I've kept you waiting so many times and you've always been very gracious about it." See why I like her? :)

I would have been there 15 minutes early but when I dropped the kids off at school, I felt like there was something in my contact lens so I took it out & realized there was a hole in it. I had to put it back in so I could see but it was scratching my eyeball and making my eye water and I knew it was going to drive me crazy so I had to go home and take my contacts out & put my glasses on instead. I felt bad for being late, especially since we were one of the first appointments of the day, but for cryin' out loud, it was either be a few minutes late or else not be able to see out of my right eye. On a more positive note, Raya's doctor told me I look like a kid in my glasses, which I appreciated. :)

Things were a little crazy today because apparently they've switched to electronic records so that big fat chart that weighed 5 lbs the last time we weighed it is now gone. The doctor said that all the doctors hate it and it makes her feel unorganized and they're having all kinds of problems with it. Anyway, Raya had lost almost a pound as of our weight check a month ago and is now slowly but steadily gaining. In the last 2 weeks she's gained about 2 oz which isn't great but it's still a gain. She's up to 27 lbs 13 oz which puts her in about the 50th percentile for weight. Unheard of in this house. :) Percentile doesn't really mean much to me anymore though. The rate and consistency of growth is more important than the actual percentile, although I'm glad that Raya does have some cushion weight so that at some point when she's ready to do a tube wean, she'll have a little leeway on what she can afford to lose.
We're going to start fortifying her "sour cream" with a little bit of oil (olive, coconut, canola, or safflower) so that the small amount of food she's eating will be "worth" more. This has been a hard concept for me to get on board with but right now the amount she's eating is so minimal that I'm fine with adding a few calories. For now we're going to keep her calorie intake at 990/day, which I think she'll do fine with. I don't think she needs to go higher than that right now.

I had kind of been dreading this appointment because I hate having to report that things have gone backwards. We had been doing so well before she got sick and now we're back to minimal oral calorie intake and it's all on Raya's terms. She found a baggie of pita chips in my purse during the appointment and spent the rest of the appointment stuffing pita chips in her mouth. I started her back on Periactin last night and I suspect that might have had something to do with it. It's been about a month since she had it last so I'm anticipating some late nights this week. (it gives her insomnia) We discussed one other med we can try if the Periactin doesn't get us the results we're looking for but I need to research it before we try it. I think the Periactin is a good option for now though.
Since it had been a while since Raya's last GI labs, the doctor ordered a few just to make sure everything is where it should be. We'll be able to get those results on Monday but I'm not anticipating any issues there.

Tuesday, February 21, 2012

What happens when Mommy leaves the room

I knew it was too quiet.

It would seem that oral aversions are on her terms. Lest you should be deceived, she spit out all of the M&Ms and Skittles after sucking on them just enough to get them nice and sticky and make the colors run. She did practice her chewing on a couple of the Skittles before she handed them to me though. The good news is that everything washed off easily and the Fun Dip vacuumed out of the rug and chair nicely.

Monday, February 20, 2012

No more allergist for now

Raya had her 6 month follow-up with the allergist scheduled for 8:15 this morning. Obviously when I scheduled that appointment, I didn't realize it was Presidents Day and the kids would be off of school today or I'd have taken a later time slot. Notice how I said we had it SCHEDULED for 8:15 this morning. See, I even have the appointment card:
Uploaded from the Photobucket Android App
We got there and checked in and a couple minutes later the girl called me up to the desk and said, "Uh, are you here for shots or a visit?" at which point I knew what was coming. I said, "We're here for a follow-up appointment. Why, do you not have it in the computer?" Of COURSE it's not in the computer. She said they could probably double-book us and asked if I wanted them to try and squeeze us in anyway so I said that was fine. Since it's Raya's first visit of the new year at their office I gave the girl the new insurance cards. Then she started checking to make sure they had our insurance info correct and realized that Raya's secondary insurance requires them to get prior authorization before an appointment. Since they had screwed up and not actually put her in the computer 6 months ago when I scheduled the appointment, that hadn't been done so they couldn't see her today anyway.
She asked me if I wanted to reschedule for another day and I politely told her not to bother with it since Raya's not having any allergy problems anyway. I told her that I'd call in the future to schedule if there was a problem. I was actually rather proud of myself for not being snippy and rude since that's how I felt. They wasted my time and if I had been the one that didn't have the appointment in my calendar, they would have charged me a $25 no-show fee. I might not have been quite so irritated except that Cole had an appointment scheduled for 10:30 about a mile away from the allergist's office and I didn't want to waste the gas driving all the way home just to turn around and drive back. I asked if his doctor's appointment could be moved up but of course at a pediatrician's office on a Monday morning they're insanely busy so we just had to sit and wait. For 2 1/2 hours. Super fun with a hyperactive and extremely moody 2 year old.
Usually when we go to the pediatrician's office I don't let Raya out of the stroller. I'm not naive enough to think that A. people actually use the sick waiting room when they bring sick kids there, and B. that anybody actually CLEANS the place, so just being there with Raya grosses me out. Since I had driven Donny's car, I didn't HAVE the stroller so she was just running free the whole time. She kept going in and touching things in the sick kid waiting room and eventually I think she was doing it just so I'd put hand sanitizer on her. At one point while we were in the waiting room I said, "Raya, come here so I can fix your backpack." and she started yelling, "NO! NUH-UH!" Some kid and his mom thought it was really funny and kept laughing whenever she would yell at me and it took every ounce of restraint in me to not snap at them. By the time we actually got in the room to see the doctor, Raya was DONE. All Cole or I had to do was look at her and she would yell and then start crying. She spilled water all over the floor and then insisted on washing the floor with wipeys the whole time the doctor was in the room, which was disgusting since the floor was filthy. It was either that or else have her scream though, so I let her do it. What can I say, I was done too. What an aggravating morning!!
For now, I think Raya is done with the allergist. She's been doing fine allergy-wise so unless problems arise down the road when more food enters the picture, I don't foresee her needing to go back. One less specialist in the mix and one less appointment to drag ourselves to.

Sunday, February 19, 2012

Fresh air & sunshine

Raya finally seems to be saying goodbye to the cold that has stuck around since right after Christmas. (knock on wood) Hopefully it will stay away. In a lot of ways she's feeling MUCH better. She's sleeping a lot better now but she's still waking up crying & screaming within 10 minutes of getting her night doses of meds. I really don't get what that's about since we've been doing them the exact same way & at the exact same time for at least several months and probably more like a year. I thought maybe it was the temperature of the meds that was bothering her since they're refrigerated, so I tried letting them sit out on the counter in the syringes for a few minutes first but it didn't help. She's almost always woken up around that time anyway. She used to wake up and vomit at 10:30 every night, so I think this is just the vomit-free version of that. She's also still not eating much, if anything. Yesterday she ate about 1 1/2 tablespoons of plain Greek yogurt and tasted a few other things which she promptly spit out. I had gotten in the habit of offering her a bite of whatever I'm eating and now she almost always refuses, and when she does take bites she spits them out as soon as they're in her mouth.

Anyway, yesterday was a beautiful sunny day and we didn't have anywhere to go, so the kids and I got to work in the garden. (yes, we are spoiled and it's February and the temperatures are in the mid 70s :) We tore out some of the dead stuff and the things that I had given up hope on getting the kids to eat (i.e. turnips) and made room for the things that it's time to plant: sweet corn, peppers, tomatoes (from seed), strawberries, artichokes, onion sets, watermelon, and beans. Raya was NOT helpful and kept trampling the lettuce and beets but she sure was happy! She did help pick up a few caterpillars though. That didn't bother her one little bit. :) She LOVES being outside and was trying to do whatever the big kids were doing. She also has had a little obsession with airplanes lately. Every time she sees or hears one, she points at the sky and yells, "EH-PANE, EH-PANE, EH-PANE!!!" and keeps repeating it until someone acknowledges her.
I think the hair is a nice touch :)
It's cute but we live 2 miles from an airport so planes fly over at least every other minute. :)

We had a consultation with another OT on Friday. She did one of Raya's pool therapy sessions when her OT was out of town and Raya loves her. I asked her if she wanted to go see Bev and she said, "Yeah, I go see Bev! She like me." It made me laugh because now every time I say "Bev" Raya says that Bev likes her. :) When we pulled up to the clinic, Raya said, "I see Bi-du-dith! Yay!" and she didn't quite get it when I told her that Elizabeth wasn't there. Especially when we walked through the room she usually has therapy in to get to the one that we were seeing Bev in. She had to stop and play with one of the puzzles first. :)
One of the ways that you can tell Raya is uncomfortable with a situation she's in is that she starts getting really wound up. As Bev and I were talking, Raya was running around the room (well, more like jumping around the room) and being really rowdy. It was a pretty tiny room that Raya wasn't used to. She wouldn't make eye contact with Bev and suddenly forgot how to talk. She wouldn't talk to Bev and she wouldn't talk to me. She doesn't know Bev well enough to be totally comfortable with her, so she would try to let her do the therapy techniques on her but when it got to be too much for her, she'd run away or get on the other side of me so Bev couldn't reach her.
The purpose of meeting with Bev was for her to show me some things that I can do with Raya while we are in the process of getting a new OT. Raya didn't cry or anything, she just tried really hard to distract herself from what we were doing with her, and when that didn't work, she would wiggle away and jump around the room some more. At the end of the session, we tried putting her in a swing that makes her whole body go into flexion (think fetal position) and she came unglued. She HATES to be in that position. It makes her very uncomfortable and although after several months of trying, we finally got her comfortable with being on a platform swing, we have never gotten her to go in the "cuddle swing". We talked about a lot of things that we can do with her at home and she explained the purpose behind the things we do at OT in a different way than I've had explained to me before. It all made sense to me before anyway but now I feel like I do understand things better. Sensory issues are so complex and I feel like the more I understand why she is the way she is, the more prepared I can be to help her work through them. Easier said than done, but still doable.

Anyway, Bev got me going on things and although I've been completely unsuccessful with any of it so far, I really am trying (remember, I'm really bad at doing home exercise programs??) and it's just a matter of figuring out what time of day is going to be the most effective for her and getting both of us used to the program. Hopefully soon. The girl is turning into a wild woman. :) She's really been craving strong sensory input and has actually asked me a couple times to put her backpack on her even though she wasn't hooked up to the feeding pump & didn't need to be. She has learned that wearing her backpack helps her feel better sometimes. Smart girl, I know. :) Last night the big kids were in bed and we were on the couch with Raya and the girl was bouncing around like a ping pong ball. She would sit on the couch and bounce herself off the back cushions over and over again. She couldn't sit still for even a second. And on a completely unrelated note, she is still demanding to watch Cake Boss at least 10 times a day. :)

Thursday, February 16, 2012

Belly laughs and chew toys

Raya is still not back to 100% but her mood has definitely improved. It's crazy how much she's been affected by getting a sinus infection. The broken arm right before the sinus infection probably didn't help either. Then there's the undesirable side effects of the antibiotics that have messed with her gut and the sneaking suspicion we have that her stomach is bleeding again... I'm SO glad we see her GI doctor next week!
For the past few nights, Raya has woken up in the evening screaming in pain. That's not something that's happened in a long time. Last night she went back to sleep pretty quickly but then this morning she woke up at 5:30 when Donny was getting ready for work and had a poopy diaper that had obviously been that way for a while. It was AWFUL. Suffice it to say we used a generous amount of the huge canister of ointment that her doctor prescribed when she was having major diaper rash issues before and then she and I laid down on the couch and watched Cake Boss until the big kids got up. (she's slightly obsessed with Cake Boss. Doesn't care about Sesame Street, but she loves Cake Boss.)
In order to try and alleviate some of the discomfort she's been having, I decided to try using a Farrell valve bag. I'll post pictures later but it's a crazy little contraption with lots of extra tubing that has to be hung at a certain height with the tubing at a certain height, etc. It took me a couple tries to get it all figured out but I think using it during her evening feed will help a lot. What it does is allow the stomach to vent during a feed by giving the excess gas/air a place to go. There is a bag with a long tube attached and halfway down the tube, there's a Y port. You plug the feed into one side of the Y port and the tubing from the bag continues down to a connector. That connector plugs in to the extension tube. When you start running the formula in, if there is more pressure coming out of the stomach than there is going in, the formula will back up the tubing towards the Farrell bag and allow the extra pressure to be relieved. Then when the stomach is ready, the formula will flow back down the tubing and into the stomach. It's pretty clever and hopefully it will help. If it does, we'll see if the new GI nurse can get home health to send us more because right now we only have 1.

Anyway, she IS doing better. :) She's still more whiny & clingy than she was before she got sick but she was pretty happy this evening. She was playing "Where's Raya?" with me. She would cover her face with the washcloth and say, "Wha-Waya?!" and then take it down and say "BOO!" One time when she had her eyes covered, I moved from being about 5 feet away to where I was 2 inches away from her face. I wish we'd caught that reaction on video because she had NO idea that I had moved closer to her and let out the biggest squeal and then laughed and laughed. We did do a little video but she already knew it was coming so her reaction wasn't quite as good. Still some good belly laughs out of her though:

In other news, she's still refusing most food but she has decided that she likes chew toys. It sounds terrible, I know. Her feeding therapist brought her a chewy tube on Tuesday and had a new baby toothbrush thing that Raya had never seen before but really liked. I went and bought her one last night because it was a great motivator for her. Today, I did 2 little "mealtime" sessions with her where I put her in the high chair and had her chew on the tube. We would count how many she did on one side and then do the same number on the other side. Once she had done both sides, I let her have the toothbrush and a little cup of water to dip it in since she likes to have water on it. She was a happy girl! She hasn't eaten a single bite of anything today, even though I offered her a lot of different things, so the fact that she at least did the oral motor exercises made me feel a little better.
We also had an IFSP meeting (individual family service plan) with Raya's service coordinator today and I just have to say that there is something to be said for a lady who can get through a meeting in under 30 minutes. :) She is wonderful and I'm SO glad we have her!

Oh, and speaking of belly laughs, I was reading through the blog analytics and saw that someone found this blog by doing a google search for "belly piercing gone wrong". Oh. My. Gosh. I laughed SO hard! Pretty accurate assessment though! :)

Tuesday, February 14, 2012

Sensory Processing Disorder and Oral Development

Of course as soon as I finished typing yesterday's post about how Raya was feeling better & hadn't had a fever or runny nose for a couple days, etc., she made a liar out of me. She's good at that. :) When I got home from the grocery store, Raya had been eating a couple bites of peanut butter. A few hours later, she was standing a few feet away from me and started fussing a little. I picked her up and she had some foamy white-ish snot coming out of her nose (sorry, TMI) and I could smell a vomit-y smell. I wiped her nose and realized that it wasn't her mouth that stunk, it was her NOSE that smelled like puke+peanut butter. Gross. It was about then that I realized she felt warm again and sure enough, her temperature was back up to 100. I put her in the shower since she needed one anyway and by the time she got out & got dressed her temperature was down to normal again. Today has been a better day. Her moodiness has returned to normal 2 year old moodiness, thank goodness. She's still pretty clingy and tells me all the time that she wants to hold me. :)

She had a really good feeding therapy session today too. They spent the whole appointment working on oral motor skills, and specifically chewing. The therapist started her out with chewing on a wet washcloth with her molars, which is one of Raya's favorite things to have in her mouth. Then she moved on to chewing on a piece of rubber tubing, some rubbery toys, and a teething toy that vibrates when she bites it. They practiced chewing with her molars because she has a tendency to try to chew with her front teeth and hold food on the tip of her tongue instead of moving it to the sides, chewing with molars, and swallowing.
Since she's been sick, she's reverted back to some of her earlier phases of oral development. There's always been a huge connection between Raya's sensory issues and all of her oral aversions and gut hypersensitivity. We also know (especially after the past week) that getting sick sends her sensory system (if you can call it a system??) into overdrive. She's gone backwards with the things she's able to tolerate putting in her mouth. This is exactly what we had expected to have happen if/when she ever got sick so it hasn't been shocking, it's just sad to see how such a small thing can send her several months back on where she had gotten to with eating. Instead of focusing on how many calories she's eating, now we're focusing on just getting her to eat something.

One of the things that we talked about again today is the "32 steps to eating hierarchy" by Kay Toomey. I couldn't find the exact handout I have online but here's the closest thing I could find to it:

being in the same room with food
being at the table with food on the other side of table
being at the table with the food 1/2 way across the table
being at the table with the food approximately in front of child
looks at food when directly in front of child

assists in preparation/set up with food
uses utensils or a container to stir or pour food/drink
uses utensils or container to serve self

odor in room
odor at table
odor directly in front of child
leans down or picks up to smell

fingertips, fingerpads
whole hand
chest, shoulder
top of head
chin, cheek
nose, underneath nose
tip of tongue, full tongue

licks lips, tongue licks food
bites off piece and spits out
bites pieces, holds in mouth for "x" seconds and spits out
bites, chews "x" times and spits out
chews, partially swallows
chews, swallows with drink
chews and swallows independently

copyright, 1999
Kay Toomey, Ph.D.

Some of the things at the top of the list like tolerating food being in the same room aren't an issue, but they used to be. This past week though, some of those seemingly simple steps like tolerating food on the table in front of her have started to bother her again so we're starting back where she's comfortable. This means that for now, I offer her food and/or she asks for food and then she plays with it. She might take a bite or two depending on what it is, and she might chew it a little and spit it out or she might swallow a little. The rule is that Raya is the one that decides how far down the list she goes. Encouraging her is fine but following her lead is important.

Sometimes I feel like Raya is a little bit of a science experiment. I think she'll get back to where she was quicker than it took her to get there to begin with.

Since today is Valentine's Day, I made some cupcakes for the kids. Raya wanted nothing to do with them but Kaida REEEEEEEEALLLY wanted one. Apparently not badly enough to eat her dinner though, so she didn't get one. I put Raya to bed after dinner and when I came back in the kitchen a little while later, I found this:

The funny part was that she told me Raya was the one that ate all the frosting off the cupcakes. Nice try, but next time blame it on a sibling that eats food and can reach the counter. :)

Monday, February 13, 2012

One step forward, two steps back

The good news:
  1. Raya's sinus infection seems to be clearing (WHEW)
  2. She's sleeping MUCH better this week (knock on wood)
  3. She's not nearly as crabby (knock on wood)
  4. She hasn't had a fever since Wednesday
The not-so-good news:
  1. She has lost all interest in food again and spits out anything she does put in her mouth
  2. Her OT moved this weekend so we are now without OT for the time being
  3. Antibiotics give her diarrhea, even if they're just the 5 day ones
I found it ironic that during Feeding Tube Awareness Week last week, Raya went out of her way to make sure we were very aware of her. Our suspicions/fears were confirmed that getting sick and vomiting would lead to her feeding aversion making a reappearance. Last Monday she ate 2T of plain Greek yogurt and then she didn't eat (as in swallow) anything else until today. She's been asking for food all week but whenever we give it to her, she pokes at it a little and says she doesn't want it. Today her darling respite provider got her to eat 2T of the yogurt and a few nibbles of peanut butter, some of which she spit out. Hopefully she'll get back to where she was before she got sick.
Even though I had expected to see her go backwards a little if/when she got sick, I have been surprised at the degree to which she's done it. I'm not sure which influenced her to stop eating more, the sinus infection or the two times she vomited. Either way, it has shocked me at how quickly she has reverted back to not wanting anything to do with eating.
She does seem to be feeling a lot better. She's been sleeping MUCH better at night and has been napping more like normal during the day. The down side of being on a liquid diet + being on antibiotics + just being Raya is that even though we went with zithromax instead of one of the 10 day antibiotics to treat her sinus infection, she has diarrhea. I've been giving her Florastor (a probiotic) to help with that. Today is her last day of zithromax too so that should help.

We said goodbye to our wonderful OT on Friday. We are sad to see her move away and grateful for everything she's done for Raya in the past 13 months that she's been working with her. Raya will be really ticked at me on Wednesday when I don't take her "fwimmeen wih Bih-duh-dith" (swimming with Elizabeth). She has LOVED doing pool therapy for the last 6 weeks. (well, she might not have loved the first week or two, but she loves it now :)
She loves playing with toys in the pool!

Standing on the big hippo floaty thing

Last day of "fwimmeen"

We've also been doing in-clinic OT with Elizabeth since last January. It took Raya some time to adjust and make it through an OT session without having a meltdown and/or puking, but she LOVES going to OT. So does Kaida. :) The girls get to do all kinds of fun things like:
Crawl through the tunnel (which has always been one of Raya's least favorite things)

Stack blocks (Friday she wore a SPIO compression vest for most of her session. I think it looks like a SWAT team vest. :)

Pet Sugar the goat's bum while saying loudly, "Bum!"

Find the heavy ball in the ball pit (It took us MONTHS to get her in the ball pit!)

Get a puzzle piece, crawl across the mat, put the puzzle piece in, crawl back across the mat, & repeat

Climb over things while being irresistably cute

We ♥ you, Bih-duh-dith! :)
We're kind of in limbo with OT at the moment. We're keeping our fingers crossed that the clinic we've been going to will either have an opening with another therapist soon or else hire a new therapist. We might also find a home OT since we are technically approved for 2 hours of OT per week. In the mean time, we'll try to keep up with our home program and see what happens when Raya goes without OT for a while. :)

Sunday, February 12, 2012

FTA Week Wrap-up

I just wanted to thank everyone who took the time to read all of my very long-winded blog posts about feeding tubes. I've gotten so many nice comments from people saying that they've learned a lot this past week and that makes me SO happy. I'm so glad that participating in FTA week has allowed me to share some insight into life with a feeding tube. I feel like I need to clarify a couple things though.

First, as difficult as taking care of a feeding tube CAN be, we are at a very good place with Raya now. The difficult time was during her first 15-16 months when so much was happening with her and we were trying to figure out what it was and how to fix it. We are no longer in that difficult "discovery phase" with her, thank goodness. We don't have big scary question marks hanging over our heads anymore like so many of our "tubie friends" do. (just little ones :) We have moved on to more of a maintenance and forward progress phase. That comes with challenges like convincing her to eat and teaching her how, which can also be stressful but anything that doesn't require hospitalization is ok with me. :)

Second, please don't be fooled into thinking that I am somehow superhuman just because of where our lives have taken us the last 2 years. Everyone has their own challenges in life and they come in many forms. This one just happens to be in the form of a little girl who didn't/couldn't/doesn't eat and goes to a lot of therapy appointments. People give me too much credit. I didn't choose this trial but I've done the best I could to accept it and handle it. Well, actually if I'm being honest, I don't always do my best, I haven't always accepted it, and I don't always handle it like I should. I think most people could say the same things about a difficult trial in their own lives. There's also no way I could have "handled it" without the support of a great husband who is also a great dad, and a lot of friends & family members who have stepped in to help where needed. But thank you all for the nice things you say to me. :) This trial really has been a huge blessing in many ways and we are grateful for everything we've learned. And how could we be sad when we've got this around us every day:

"God doesn't give children with disabilities to strong people: He gives them to ordinary, everyday people, then He helps the parents to grow stronger through the journey. Raising a child with special needs doesn't TAKE a special family, it MAKES a special family." ~Author Unknown

Saturday, February 11, 2012

Feeding Tube Awareness Week- Day 7

The final topic of FTA week 2012 is: Show us your awareness video / Share your awareness idea! How have you been raising awareness this week? What else could we do to raise awareness?

A couple of weeks ago, the kids and I were talking about the fact that Feeding Tube Awareness Week was coming up and what we could do to help people learn about feeding tubes. We came up with the idea that they could do presentations in their 1st and 3rd grade classes at school. I emailed their teachers and explained what we wanted to do and why, and both of them graciously agreed to let us take a few minutes last Friday to teach their classes about feeding tubes. We video taped them doing the presentations in class, but they were a little too far away and the sound on the video didn't come out very good, so we did it again at home. The bummer about that was that you can't see the PowerPoint very well on the tv. Since it didn't work out quite as planned, I'll post the slides & speaker notes from the presentation and then post the video below. Here is what they had to say:

 Raise your hand if you know what a feeding tube is. We want to teach you about feeding tubes today so that if you ever meet someone who has one, you will know that feeding tubes aren’t scary and that they are something that helps people get food and water when they can’t eat and drink it with their mouths. Some people need glasses to help them see, some people need wheelchairs to help them move around, and some people need feeding tubes to help them eat.
 When our baby sister Raya was 2 months old, she was having a very hard time eating. She threw up every time she ate and that made it so she didn’t want to eat anymore. Imagine how you would feel if you threw up every time you ate. Would you still want to keep eating?

Her doctor was very worried about her so she had our parents take her to the hospital. Since she wouldn’t eat, the doctor put a feeding tube in her nose so that we could still feed her. The first time we saw Raya with the little yellow tube going into her nose, we thought it was a little scary. She looked different with a tube in her nose. We were kind of afraid to touch her because we didn’t want to hurt her or accidentally pull the tube out. After a while, we got used to seeing Raya with the tube and it didn’t look strange to us anymore.
 Some people can’t eat food or drink liquid with their mouths so they use feeding tubes instead. Feeding tubes are a way to get nutrients and liquids that our bodies need into someone’s body without them having to eat food or drink liquid. The 3 main types of feeding tubes are nasogastric or NG tube, gastrostomy or G tube, and gastrojejunostomy or GJ tube.
 An NG tube is a long, skinny tube that goes through the nose, down the throat, and into the stomach. NG tubes are held in place by pieces of tape on the cheek. This is what it looks like. A nurse at the hospital taught our mom how to put Raya’s NG tube in so that she could put it back in whenever Raya accidentally pulled it out.
 A G tube is for people who will need a feeding tube for a long time. It has to be put in with surgery. This is what it looks like.
The surgeon makes a hole called a stoma that goes from the outside of the body into the stomach. Then he puts the G tube through the stoma. There’s a balloon on the end of the G tube that goes inside of the stomach, and when it’s filled with water, it keeps the tube from coming out.
If Raya’s G tube accidentally gets pulled out of her stomach, our parents can put it back in by taking the water out of the balloon, putting the tube back in the hole, and then filling the balloon back up with water.
A GJ tube is a lot like a G tube except that there are 2 places that formula can come out of a GJ tube and only 1 on a G tube. Here’s what a GJ tube looks like.
On a GJ tube, there is a gastric port that opens into the stomach and a jejunal port that goes through the stomach and into the small intestine. This kind of tube is for people whose stomachs don’t work like they’re supposed to.
Since a GJ tube has a long skinny tube that has to go into the intestine, the only person that can put it in is a special doctor at the hospital.
 There are a lot of reasons why people need feeding tubes.
Illness can make the body stop digesting food like it’s supposed to.
Weak muscles inside the throat can make it dangerous to eat because food can go into the lungs where it doesn’t belong.
When eating is painful, the person learns that eating hurts and might stop doing it like Raya.
Some people are allergic to so many foods that there’s nothing they can eat without getting sick.
Some people have physical disabilities that keep them from being able to feed themselves or eat food safely.
People who have cancer in their mouth, throat, or digestive system might have to have those parts of their bodies removed to get rid of the cancer.
Some people have strokes or brain injuries that make them unable to eat.
 To use a feeding tube, there are a few things you need. When we feed Raya, the first thing we do is hook an extension tube to her G tube just like this doll has.
Most of the time, we feed Raya a special formula that comes in a can and we use a feeding pump to feed it to her.
Here’s what her feeding pump looks like. We put the formula in a special bag and program the pump to feed Raya at the right speed. We can either put the feeding pump into her little backpack or we can put it on the IV pole.
Sometimes she just needs a little bit of extra water or some baby food in her stomach, so our mom uses a syringe like this to put it in Raya’s feeding tube instead of the pump.
 Sometimes when people see that Raya has a feeding tube, they have a lot of questions. We want to help people understand and so we like it when people politely ask us questions about Raya. Here are some of the questions that people ask us.
*Does it hurt? When Raya first had her surgery to put the tube in her stomach, it did hurt for a couple of weeks while it healed. Now that she’s had it for a long time, it doesn’t hurt her anymore.
*How long will Raya need a feeding tube? Everyone that has a feeding tube is different. Some people will need their feeding tubes for their whole lives and some won’t. As soon as Raya learns how to eat enough food and drink enough water to be healthy, then she won’t need her tube anymore.
*Can she still play like other kids? In most ways, Raya is just like any other kid her age. She likes to play at the park and be silly and do all the things that other kids do but the thing that’s different about Raya is that sometimes she has to wear her feeding pump in her backpack while she plays.
*Can she go swimming with her feeding tube? As long as she swims in clean water, Raya can go swimming.
*Can she eat food with her mouth? Raya can eat some food but not enough to make her grow. Right now, her favorite foods are sour cream and pita chips.
*Does anyone have any other questions for us about feeding tubes?

Here's the video. Pardon the coughing fits, allergy season is in full swing and is brutal on these two. And please overlook the nose picking. He can't help himself, he's just a boy. :) I couldn't get the volume adjusted so you'll probably have to turn it up to hear them.

*side note: because this presentation was for young children, I left out a couple of types of tubes. OG= orogastric (like NG only through the mouth instead of the nose), NJ=nasojejunal, ND=nasoduodenal, J=jejunostomy

Presenting a topic like this to 6 and 7 year olds is tricky. :) They did their best to listen to Cole and when I came to the front to help him with Q&A time, we got "questions" like this:
"One time, I fell on the sidewalk and scraped my elbow and it hurt really bad."
"My brother broke his leg once and had to go to the hospital."
"Can she still blow her nose?"
Gotta love 1st graders! :)

The 3rd graders, on the other hand, had SO many thoughtful questions to ask. They were so good during the whole presentation and you could tell that they were genuinely interested. When it was over, I came to the front to help Ashtyn answer questions and I was so impressed by the things they asked. I wish I had all of them written down but here are a few that I can remember:
  • How often do you feed her?
    • 4 times a day through the feeding tube (with the pump)
    • OR if she eats enough calories combined to equal 250, we can eliminate one of the 4 tube feeds
    • We offer her food 4 or 5 times a day (mealtimes & snacks)
  • Is it hard to find clothes for her with her tube?
    • It was much harder when she was younger because onesies & zippered jammies don't give good access to the feeding tube
    • Now it's just hard to find her warm winter jammies that don't have a zipper on them (I don't like cutting holes in her clothes!)
  • When you just got her out at the hospital, could she breathe?
    • She never had trouble breathing, she just had trouble eating and not throwing up what she ate
  • So if she wants to eat chips, can she put them in her mouth?
    • Yes, she can and does eat chips :)
  • Does the tube ever come off when she gets older?
    • Yes, when she gets good enough at eating that she can eat enough calories, drink enough fluids, and take her medicines by mouth, then we'll be able to take the tube out.
  • Can she only have certain foods?
    • Right now there are only certain foods that she likes, and her eating skills aren't quite good enough to eat things that take a lot of skill to eat (like meat) but she doesn't seem to have any food allergies anymore.
  • If she doesn't want to eat something, do you have to put it in the blender and put it in her tube?
    • We don't always, but we CAN put real food in the blender and put it through her tube. We've fed her all kinds of vegetables and fruits through the feeding tube.
  • How did they get the tube in?
    • The doctor gave her medicine to make her sleep and then they used a sharp tool to make a little hole where the tube needed to be. Then they put the tube in the hole and on the inside, they put a piece of plastic on to keep the tube from coming out while the cut healed.
Like I said, I really wish I had a list of all the questions they asked because they had a lot of great, insightful questions. One girl even noticed that around the heart on our "I ♥ a Tubie" shirts, there is an extension tube. I was impressed that she had paid such close attention that she noticed it. :)
This presentation was such a great experience for our family! We really felt like teaching elementary school kids about feeding tubes was a great way to promote positive awareness. Kids CAN be cruel, but if they are given the right information, they can also be kind and understanding. Often more so than adults. We are so grateful that we had this opportunity and hopefully next year we can make the presentation to a larger audience.
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