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**Disclaimer**

**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**


Thursday, May 31, 2012

Weight check

Vent week continues. I have always considered myself lucky when it comes to the office where Raya's specialists are because we haven't had too many aggravating experiences there considering the ridiculous number of times we've been there since January 2010. Recently we've had more irritating experiences though and today's was pretty aggravating.

Remember how at last week's weight check, I commented about how it's crazy some of the things people let their kids do in waiting rooms? Case in point, while we were waiting (calmly and without any rowdiness from Raya) there was a little boy about her age that was REPEATEDLY JUMPING OFF THE BENCH right in front of his mother who sat and watched him every time without saying a word or even seeming to realize that it was not safe or appropriate waiting room behavior. I don't let my kids do stuff like that. EVER. Not even CLOSE to that, and even my wild little Raya has never attempted anything close to that.

Fast forward to today, we had Raya's OT appointment and then stopped in to the GI office for a weight check. Raya was nice and calm and organized from her OT appointment and on the walk from the car to the door, I reminded her that we were going to be quiet and sit down on the chair while we waited. We walked in, I got in line to check in, and Raya went over and crawled up onto a chair/bench (their waiting room furniture looks a lot like a Candyland game board with lots of curvy benches) and sat down. Like any 2 year old, after about 2 seconds she slid down and walked to another part of the bench and sat down. I sat down about 4 feet away from her and she quietly and calmly kept crawling up onto the bench, sitting down for a couple seconds, and then getting down. She wasn't bothering anybody, she wasn't endangering herself or anyone else, she wasn't standing up on the furniture, she wasn't doing anything she shouldn't have been.
She had gotten down once and started to crawl back up onto the bench and one of the front office people stood up at his desk and started to say something to her. Being a 2 year old and with other kids right next to her, she didn't realize he was talking to her so he turned to me and said, "Ma'am, she's not allowed to climb on the furniture like that." I looked over at my 2 year old who had one foot on the floor and one knee on the bench and said, "What?!? What do you mean? She's not doing anything." We went back and forth a little and I forget the exact words that were exchanged and once again, I thought of a million things I could have and SHOULD have said after the whole thing was over with, but I was completely taken off guard by it.
Okay, so yeah, if she had been walking along the benches like I've seen HUNDREDS of kids do in the past 2 1/2 years or standing up or jumping off or bothering people or being really loud, then I could see him saying something about it, BUT SHE WASN'T!!! She wasn't doing anything even remotely dangerous or obnoxious! I was SOOOOOOOOO MAD!!! (and still kind of am just a titch) Seriously so stupid. I'm sure there was something productive he could have been doing instead of sitting there judging me and telling me that my 2 year old can't do something that she wasn't even doing to begin with. Don't do stupid things to piss off your long-term patients' parents. It kind of made me want to stand on the furniture and do a little jig. It's probably a good thing we don't have to go back there for a while.

Anyway, Raya's weight is back up to 13.4 kg, which is about 29 lbs 8 oz so that's a big jump from last week. I guess that milk really did a number on her. Lesson learned, no milk for Raya!

OT went well today. We changed things up a little bit to hopefully avoid the 4 hour meltdown that Raya had after last Thursday's appointment and she did really well. She did the scooterboard for quite a while and I think it wore her out. I really should get a scooterboard and do it along with her. She's going to have amazing hamstrings if we keep doing that part of the program. :) Today she had a big alphabet puzzle to put together:
She picked up a piece, scooted to the other end of the room, put the piece in the puzzle, and scooted back for another piece. By the time she got to H or I, she was getting pretty tired. :)
She also played "put the heavy froggy in the hole," which is another one of her favorite OT games:
Now I'm going to take a deep breath, leave Raya in the care of her wonderful daddy who I most definitely couldn't handle any of this craziness without, and take the other 2 girls to their doctor appointments. It's days like this when I just want it to be time for all of us to go to bed already.

Tuesday, May 29, 2012

Feeding therapy is not for sissies


*Note: The following post will probably be long, boring and consist of a lot of whining and complaining because sometimes I just need to, but I'm not looking for sympathy or compliments on how awesome I am and I do realize that a lot of people are much worse off than we are and am grateful for everything wonderful in my life, etc. :)

Sometimes feeding therapy just stinks. I love our therapist, I love my daughter, I'm forever grateful that someone decided to create feeding therapy, but sometimes I just hate it. Here are a few reasons why:
  1. Progress is very slow and there's a lot of "one step forward, two steps back"
  2. I thought I'd gotten really good at being patient but have realized that there are many different kinds of patience and I have yet to develop the kind that feeding therapy requires
  3. Some days, it feels like we're torturing her.
  4. Some days, it feels like we're torturing ME.
  5. Some of the things we have to do with Raya go against all of my instincts and 9 years' worth of parenting experience
  6. It reminds me that I'm part of Raya's feeding equation and therefore also part of the problem (and who really enjoys analyzing their parenting faults with a specialist once a week for 50 minutes?!?)
  7. It. Is. HARD to turn a non-eater into an eater!!!! The things we learn in therapy seem small and simple enough but actually putting them into practice consistently at every snack or meal every single day is SO HARD, and each FT session is a reminder of all the things we should be doing better at and aren't.
I really didn't have high expectations going into today's FT session. Raya is still not quite back to her previous self after trialing her on milk last week. Her diarrhea is gone now but the personality changes and eating changes are still lingering. Since we took away all dairy products (which included her precious "sour cream"/Greek yogurt) she's not too interested in eating much. She says no to just about every food we offer, no matter how it's offered to her (meaning, whether we ask her if she wants some, tell her to take a bite of something, etc.). Normally she will say yes to goldfish crackers or ask for them but she doesn't want those either. In the past few days, she's eaten tortilla chips, peanut butter, a sour cream & cheddar chip, bites of my tortilla, and spicy salsa that I made this weekend. She ate that off of the spoon and didn't even flinch like the other kids. :)

Today was the kids' first official day of summer break so we all went to a movie this morning. The theater was a little overwhelming for Raya. Thankfully instead of having a meltdown, she just got really clingy and spent the entire movie shoving popcorn in my mouth and stabbing me in the face with the straw as she was trying to give me drinks. :) Oddly, even though everybody else was eating popcorn, she refused any that I offered her (after I bit the hulls off so she wouldn't choke on them). Normally if I'm eating something and offer her a bite, she takes it. It's also very out of character for her to want to just sit on my lap for any length of time. Her respite provider was with us and she even kept commenting on how strange Raya was acting.

Her OT was gone today so we didn't have that appointment before FT like we normally do but there wasn't time for a nap in between the movie and therapy. By the time her therapist came she was one tired and crabby girl. Well, until she heard the knock on the door. Then she got all happy and hurried to the door. She loves that most of the time when someone knocks on the door, it's for her. :)

Since the only thing that's really appealed to her this weekend is chips & salsa, that's what we gave her for FT. We've seen a change in some of Raya's behaviors surrounding eating. Being that she is 2, she's developing the independence and stubbornness of a 2 year old and that really complicates trying to get her to eat. Some of the struggle with Raya learning to eat is now of a behavioral nature where before, it was just a lack of knowledge, skill, & motivation. All of those things are still factors to varying degrees, but some of the behavioral elements are starting to emerge more.

She's learning that certain things get attention, even if the attention is in the form of us doing what we've been taught to do with therapy. For example, our recent focus has been on making sure Raya is emptying her mouth before taking another bite. For the last couple of weeks whenever we're eating, we only give her a small amount of whatever she's interested in at that meal and when she asks for more, we remind her to clean her mouth. (with the exception of Applebee's last week when we let her cram as much as she wanted into her mouth so she'd be happy & quiet while the rest of us ate lunch. sometimes you just have to appease.)

Either we ask, "Is your mouth clean?" or we just say, "Clean your mouth first and then you can have more." Sometimes she will rub her throat with her hand and make a gulp noise like she's learned from watching her therapist's cues to show us that she's trying to swallow, but other times she shakes her head no, acts silly, or just doesn't do anything at all. Ever since she started experimenting with food, she's enjoyed the sensation of having food on the tip of her tongue and is content to keep the same food in her mouth for hours. (literally. her record is 4 or 5) If she's still on the same mouthful when everybody else has finished their meal or if we've run out of time to sit & wait for her to clean out her mouth, we make her spit it out into a napkin. Today her therapist decided that we need to change our direction with that because it's not accomplishing what we want it to. (this is where it gets not-so-pretty)

So Raya got a good little "bolus" of food in her mouth and decided just to let it sit there for a while. Her therapist gave her verbal cues for chewing and swallowing a few times and gave her a sip of water, but Raya kept the food in her mouth. When she asked for more chips, her therapist reminded her to clean her mouth. When Raya persisted, her therapist looked down at the floor and bowed her head so that Raya couldn't have eye contact with her. The idea was to not give Raya the interaction that she was trying to get because it would reinforce the behavior of not swallowing. When her therapist didn't give her the attention she was looking for, she looked at me to try and get it from me, so I did the same thing as her therapist. She gave Raya another drink of water and encouraged her to swallow, but Raya still kept the food in her mouth.

After 20 minutes, Raya still had the same food in her mouth. (and there were JALAPENOS in that salsa!) By then, she was starting to get frustrated. She really didn't want that food in her mouth anymore, especially since she also had a lot of water in her mouth, and she wanted us to fix it for her. Half an hour of consciously and intentionally ignoring her requests for more food or help getting the food out of her mouth was very unpleasant, especially towards the end when she was crying and reaching for me while food dripped out of her mouth. Thank heavens she doesn't gag much anymore or it would have been a pukefest.

Finally, she couldn't hold it in anymore and started to spit the food out on her own. Her therapist handed her a paper towel so she could clean off her own tongue instead of having me do it for her. Since she hadn't ever swallowed the food like she was supposed to, I had to ignore the crying and keep it all business so that I wasn't reinforcing the behavior and rewarding her for it. As soon as she was out of the high chair, she wanted me to pick her up but I didn't (see what I mean, against instincts) and instead, I redirected her and took her by the hand to the sink so we could wash off the salsa that she smeared all the way up past her elbows. I put her back down again and she wanted up again so I redirected again by taking her to get a clean shirt on. That was enough of a distraction that she stopped asking me to pick her up but was still being whiny. She perked up a little bit when it was time to say goodbye to her therapist. :)

*sigh* So back in the beginning when Raya first had her NG tube, we were completely clueless that getting her to eat would be so hard. When oral feeds were taken away completely, we still didn't comprehend the fact that she was going to have to work so hard to make up for missing so many vital stages of oral development. Even though logically we knew that it would take some work for her to learn the mechanics of eating, I don't think we had even an inkling of the degree to which things like motivation, desire, appetite (or lack thereof), and her screwed up tastebuds would factor in. (because let's face it, what 2 year old LIKES salsa and plain Greek yogurt all by themselves) This is taking SO much longer than we thought it would and is so much harder than we thought it would be.

Lately I've seen comments from a few parents who are brand new to tube feeding talking about how they're hoping to be off the tube in a few months or asking how they can make sure their tube-fed baby will still want to eat solid food and I'm sad for them and it's all I can do to stop myself from crushing their hope with a dose of reality. I used to be that mom who naively thought the tube would be a temporary sidekick for a couple of months. I know there are kids who do only end up needing a tube for a matter of months and sometimes less depending on the reason they have it. As much as I'd love to be able to tell them that everything will be fine and if they just do x-y-z, their baby will be back to eating in no time, the fact of the matter is that none of this is an exact science and it's something that nobody can predict or control. I hope that EVERY brand new tubie parent will cling to hope that their child will be one of those kids. I also hope that they will not feel like failures if their child needs it longer than that. If you're a new tubie parent, do whatever you can to encourage whatever oral exercises are allowed (chewing on toys, sucking on pacifiers, eating/drinking what they can) as often as you are able to keep them interested in food and eating, but realize that in the end they just might not want to eat no matter what you do. To be brutally honest, and forgive me for doing so, but trying to turn a kid who used to vomit at the sight or smell of food into a kid who eats is awful. Sometimes it just plain sucks trying to force a kid to do something that they really don't want to do. Especially when it's one of the most basic and fundamental functions of life and there are no longer any obvious medical reasons why they shouldn't be doing it. (although there might still be medical reasons that we're unaware of)

At the very beginning when people would ask us how long Raya would have the tube for, we used to say that it would probably be a month or two but could be longer. We honestly believed that but then as the months went by, we started to say that it could be a year or two. Then we started saying that we'd be thrilled if she got off the tube by the time she went to kindergarten. Now we're halfway there and I'm starting to have my doubts about even meeting that imaginary deadline. Some days I think she will, but then there are the other days when I sit and watch her hold the same mushy tortilla chip crumb in her mouth for half an hour and wonder how she will ever be able to eat all the calories, drink all the fluids, and take the medications she needs completely by mouth EVERY SINGLE DAY. It seems like pretty tall order for a kid who can barely hit 100 calories a day lately. Sometimes I wonder if this part of the journey would be a little easier if somewhere along the way we had been told to never expect Raya to be able to eat orally because then even when she only eats 5 calories a day, she'd still be exceeding expectations.

(If you're a new tubie parent who happens to be reading this, I'm SO sorry that you caught us on a bad day. :)

Thursday, May 24, 2012

Mommy needs a padded room. Make it soundproof.

AAAAHHHH!!! This sweet, darling child:
has been an absolute WRECK today. She had a good OT session this morning. She tried another swing that she's never been on before. It's shaped like an upside down T so she sits on it and has to hug it with her arms & legs. It's a lot of work for her weak core muscles. After she'd had enough of that swing, she got in the baby swing and tolerated a surprising amount of motion. Her therapist did forward & backward, side to side, and spun her in a circle. That is a LOT of very strong sensory input, which is why I don't give her a bolus feed of formula before OT on Thursdays. :)
When she'd had enough swinging, she got to ride the scooterboard. She scooted back and forth across the floor about 10 times picking up one puzzle piece at a time and putting them on the puzzle board on the other side of the room. She tolerated the whole oral motor program today so that was an improvement over Tuesday too, but that's pretty much where the positives ended.
She fell asleep in the car on the way home and when we got home it was time to leave to pick the big kids up from their last day of school, so we switched cars and left again. She was crabby. To celebrate the end of a wonderful school year, we went out to lunch. She was still asleep until we sat down in the restaurant and then she just wanted to sit on my lap, which isn't really normal for her. She doesn't just sit. She was very quiet and still but perked up a little when the waitress brought her a high chair.
Big brother was sweet enough to share his fries with her. She likes fries but never swallows them. Normally we don't just let her cram her mouth full of food but today we were at a restaurant and she was extra cranky so most of the time she looked like this:
After she had chewed and pocketed about 4 or 5 french fries, Donny tried to get her to spit it out into a napkin and she had a fit. The more worked up she got, the more afraid I was that she was either going to puke or choke, so Donny and I traded seats and I got her to spit it out. She had a little sip of water and then started stuffing fries in her mouth again. And since the rest of us wanted to enjoy our lunch, we let her. A couple minutes later the whole thing repeated itself:
I helped her squeeze her cheeks to empty her mouth again. It was gross. Even more gross was that when the waitress came and took our dishes, she also picked up the napkins full of chewed up french fry goo while I wasn't looking. Bless her. I hope she washed her hands.
Oh, and speaking of gross and washing things, if there were any germs on the buckle of Raya's high chair (which I normally clean with sanitizing wipes but didn't have any in my purse today), she ingested them. I looked up at her just in time to see her rub the bitten end of her french fry on the buckle as if she was dipping it in sauce and then shove it in her mouth. Twice.
The rest of the afternoon/evening is a blur of screaming and crying. 4 hours' worth of it. I'm not exaggerating even a little bit. She cried off & on for the last 15 minutes of lunch and then really started crying when we left the restaurant because I wouldn't let her climb out of the high chair by herself. (meanest mom ever!) She cried and screamed all the way home and kept on crying and screaming for the next 4 hours. I'm not exaggerating in the least bit. It was unbelievable.
A couple of times I got her to stop for a few minutes but then she'd find something else to cry about. Finally the blessed hour of bedtime arrived and by then she was tired enough to get in bed without much protest. I love her dearly but walking out of the bedroom and leaving a quiet girl in her crib was the best moment of my evening. That was at 7:00 and she slept soundly until 8:45 when she started coughing and then crying again. I waited to see if she'd stop and after about 5 minutes she went back to sleep. Goodness knows what the rest of the night will be like. On the bright side, she hasn't had diarrhea today (probably because her GI had us stop all dairy products as of yesterday) but obviously she's not feeling good still.


Wednesday, May 23, 2012

Craptastic

Rough week for Raya. A month ago at her GI appointment, we decided to cut her calories a little since we had overfed her into the 75th percentile. We reduced her from 990 calories a day to 930. We also decided to start trying a little milk (as in real milk from cows, not canned formula :) so we started with 1 ounce a day and worked her up to 4 ounces. It only took a couple of days before she was constipated. Then she had that funny little flu-ish thing and we swapped out all her formula & milk for pedialyte for 12 hours and then gradually worked her back up to full formula but never added the milk back in. This week, we started her back on milk.
*warning: I'm going to talk about poop*
I think my girl may be lactose intolerant. On Sunday, she was up to a full 4 ounces and on Monday she had a very strange poopy diaper. We'll just say that it's not normal for poop to be stringy. Yesterday the child who normally poops once every 1-2 days had 4 diarrhea diapers. As in, nothing left to wipe off because it all soaked into the diaper. Not only that, but she refused to let her OT do some of the oral motor program that she's been doing. The last 2 parts of the program involve the therapist putting a gloved finger in Raya's mouth and pressing down on her tongue and rubbing the roof of her mouth. When she got to that part, Raya clamped her mouth shut and shook her head "No" and that was that. She was NOT opening her mouth.
Right before OT we were eating lunch and I offered Raya a piece of bread from my sandwich. She's gotten to a point where if everybody else is eating, she at least wants something to nibble on but she refused multiple offers of bites of our lunches. Then when her feeding therapist came, she offered Raya a bite of her favorite plain Greek yogurt and Raya actually said, "No." She's never told her therapist no before! It wasn't that ornery 2 year old no either, it was a very calm no. She did end up eating about 2 tablespoons of it but only because her therapist put goldfish crackers in it so she ate the yogurt covered crackers. On the bright side, she ate 35 goldfish. :)
Last night I gave her milk again because I knew that if I emailed her doctor about the diarrhea she would probably want me to continue the milk for a couple more days on the chance that the diarrhea is something viral. (she always thinks of that and I never do :) It was about 9:30 when I gave her the milk and not long after that, she had the 4th diarrhea diaper of the day. Donny changed her and tried to put her back to bed but as soon as he walked out of the room she stood up and started crying loud enough to wake the neighborhood so I got her out of bed. You know something's off with Raya when she will actually snuggle with you on the couch. She and I laid on the couch until about 2am when I couldn't take it anymore and put her back in bed.
Then at 4:30 she woke up and was crying, so I got her out of bed and again she laid down with me. It's not normal for her to willingly lay down in our bed with us either. She usually starts screaming as soon as you walk towards the bed with her. She was tossing and turning a little bit and then had another diarrhea diaper. (nothing says good morning like changing a raunchy diaper at 4:45am) After that, she was still willing to snuggle up in bed with me until she heard the other kids come downstairs. She's been in a pretty good mood all morning and did awesome at her weight check. Behaviorally, anyway. Weight, not so much.

One month ago, she weighed 13.63kg (30 lbs, 0.8 oz) and was 90.4cm tall. Today, she weighed 13.04kg (28 lbs 7.4 oz) and was 92cm tall. That pretty much sucks. She's lost 1 1/2 pounds in a month. It's a pretty big setback. I'm trying to not beat myself up about it even though I do own some responsibility since I am the one that calculates the calories every day. Time to start watching her like a hawk and counting every single calorie again.

To end on a positive-ish note, she ate a dum-dum on the way home. For the first time, she actually bit and chewed it. I kept telling her not to bite it but secretly I was proud of her. :) Right up until she ate the paper that came off the stick with the sucker. She has probably lost her dum-dum privileges for a while since biting chunks of sucker is a good way for a kid who doesn't chew & swallow well to choke, but I was still proud of her.

Sunday, May 20, 2012

Expanding our palate


Mmmm...TOMATO SAUCE!
This weekend's menu has included:
  • 6 tablespoons plain Greek yogurt (aka "sour cream" according to Raya)
  • approximately 65 goldfish crackers
  • 6 small bites of cocoa krispies
  • flour
  • raw pizza dough
  • 5 tablespoons fresh tomato sauce from the garden (with a little onion & basil pureed into it)
  • a few nibbles of pizza crust
  • 1 tablespoon peanut butter
  • some tastes of chicken enchilada
Not all of the above was swallowed but she's been trying more often to chew things. Someday she'll realize that it's easier to chew when her mouth isn't packed full. :) And obviously, a couple hundred calories over the course of a weekend isn't enough to sustain life but that's what the G tube is for. :)

She never ceases to amaze me these days. A lot of what comes out of her mouth is unintelligible but every now and then she'll pop out with something that surprises us and makes us want to be more careful about what we say in front of her on the off chance that she'll repeat it. Her stomach amazes me too. Last night I thought for sure I was going to be changing her sheets in the middle of the night. Before I went to bed, I realized that she needed more formula than she had gotten so I decided to bolus the rest with a syringe instead of with the pump. It was only about half of what her usual bolus feeds are but it went in faster than it does with the pump and for the next 45 minutes I laid awake in bed listening to her swallow, toss & turn, cough, and clear her throat just waiting for the vomiting to happen. Lucky for both of us it never did though. Maybe all that vomiting she used to do was like bodybuilding for her stomach and now it's so strong that she can't puke... Well, no, she proved me wrong a couple weeks ago when she soaked both of us with a full 8 oz of formula.

This afternoon I was laying on my bed and she climbed up next to me and started whispering nonsense in my ear. I was trying to listen to what she was saying but I didn't want goldfish cracker goo to drip in my ear so I made her stop and get down. :) Anyway, she's amazing. She's a little pill but she's so funny and so full of energy that you just can't help but love her and be exhausted by her presence all at the same time.

Wednesday, May 16, 2012

Raya's OT session

I've said it before and I'll say it again, Raya has been blessed with the most AMAZING occupational therapists. We are SO lucky to have worked with Miss Elizabeth for a year and now Miss Meredith! Before Raya started OT, I only knew about OT for the purpose of developing and improving fine motor skills and for helping to restore activities of daily living (ADLs) after traumatic injuries. I had no comprehension of what sensory processing disorder was or how OT would be beneficial in treating it. I feel like I'm understanding things a little more with each therapy session now. I've gotten into a rut of posting nothing but cell phone pictures on the blog lately so I took my real camera to therapy with us yesterday and thought I'd share what an OT session with Raya looks like. :)

This session was what we do on the days when Raya is having a lot of sensory-seeking behaviors (i.e. climbing on things, falling down without reacting to what should be painful, falling down or bumping into things on purpose, hanging from the kitchen table, toe walking, jumping instead of walking, etc.).

We started with the swing, which Raya was absolutely TERRIFIED of just a few weeks ago. She has had a total meltdown anytime I've ever put her in this type of swing outside of therapy, and up until very recently she couldn't handle it at therapy either.
We start her out gently and then increase the movement as she tolerates it. You would think that a child that exhibits a lot of sensory seeking behaviors would love a lot of motion but as soon as she's not the one in control of the motion, she panics. Yesterday she was doing really well though. Clinging for dear life, but with a smile on her face. :)

After the swing, Meredith blew up the giant inflatable mattress with the opposite corners clipped together to make a tunnel. She put a pile of bean bag animals at one end and a bucket at the other end and had Raya crawl back and forth putting the animals into the bucket. It's a challenge for her to crawl on the uneven surface and an even bigger challenge for her to stay focused for very long. Tunnels used to be terrifying for her too. She's come a long way.

She takes a lot of breaks.


She also likes to tell Meredith that she's all done and try to dive over the edge of the mat after every other bean bag:
Nice try girlie! Keep movin'! Then she protests by crawling to the other end and flopping down to rest.

She looks comfy, doesn't she?


After she gets all the bean bags into the bucket, it's time to jump!

After she bounces for 30 seconds or so, her trunk starts to get floppy. She has really strong legs so she keeps jumping but you can tell when her trunk is getting fatigued because she loses control and goes all over the place. It keeps us busy running around keeping her from flying off of the mat. :) Yesterday she flopped down after a few jumps, threw her arms up and said, "All done!"

But she wasn't. :) We made her jump a little more and then it was time to play "doggie basketball" with the weighted stuffed animal.

After a couple minutes of doing that, THEN she got to be "all done" and sit down in the middle of the mat with the heavy puppy on her lap.
This is Raya's "I'll say 'MEEEEE' for you but I'm too distracted by the light coming through the door to look at the camera" face.

She's never quite sure what to think when the mat starts to deflate while she's sitting on it. :)

After all the hard work, it's time for her massage, deep pressure, and oral sensory program. She chills on a bean bag and listens to relaxing spa music while she gets her legs & arms massaged and has deep pressure done. Tough job but somebody's gotta do it.
Even though it's a little more than she can take sometimes, I think it's her favorite part of therapy. She LOVES Miss Meredith!

On the days when she's not tolerating all the really active stuff, we go into a dark room to remove all of the visual stimuli that she's very sensitive to and easily distracted by and spend more time doing the massage and deep pressure. On those days, she swings in a cuddle swing instead of the baby swing. When there are things to look at, she would rather distract herself by looking than allow herself to be aware of whatever else is going on with her body, which is why she relaxes so much better in a dark room. It's much easier to organize her system when there aren't distractions around. Yesterday, there was a cute little boy doing an obstacle course in the same room and Raya was SO distracted by what he was doing:
Sometimes there is an up side to having her distracted though. When I took that picture, her legs were squirming a little bit which is usually an indicator that she's about finished with letting people touch her. I can guarantee that if it had been me doing her massage instead of Meredith, she would have been off of that bean bag the second I tried to touch her arm. She rarely lets me massage her arms and it's even more rare for her to let me touch her hands. If I can find the right distraction, sometimes she'll let me do the massage but ideally, she needs to get to a point where she can handle being massaged without having to find something to take her mind off of it.
She's a little scary sometimes when we're walking in parking lots and things like that because she really hates holding my hand. More often than not, I end up carrying her kicking and screaming because she throws a fit and refuses to hold my hand. Part of it is just her being 2 but part of it is that she hates the sensation of people touching her hands unless she's the one that initiated the contact.

On Tuesdays, we go straight home from OT just in time to have feeding therapy, so we like to end the OT session with the oral sensory program. Meredith puts on a cherry-flavored glove and goes through a series of pressure points and massage on Raya's face. As long as she's tolerating that, they move on to "cheek hugs" and rubbing Raya's teeth & gums. Yesterday, she had the weighted stuffed animal on top of her while she got her massage. I hope that at some point she'll be willing to try a weighted blanket. I made her one last summer and she HATED it! I finally ended up giving it to her little friend Lily who loves it, so I'm glad somebody's getting some use out of it. :)

Then they do "frog jumps" on Raya's tongue. Some days she lets the "froggy" in and some days she clamps her lips shut. :)

This started out as a lips clamped shut day but then she opened them and let the froggy in. The very last part of the program is having the roof of the mouth rubbed. I'm pretty sure I would gag if somebody tried to do it to me so I'm always amazed when Raya lets her do it.
By the look on her face you can tell that the last step really pushes her limits. She can't really tell me but I wonder if the smell and taste of the glove bothers her at all. I really think I would gag if somebody did all that to me and I'm always really proud of her when she makes it all the way through the program.

She did SO well yesterday with her OT session. I walked in with a hyperactive, bouncing off the walls girl and walked out holding hands with a calm, organized, and worn out girl. :) We are SOOOO thankful to have OTs who understand how important it is to address sensory issues and so glad to have a better understanding of it ourselves.

Saturday, May 12, 2012

Professional Patient

Yesterday turned into a busy day for Miss Raya. She started the day off with an OT session that really didn't go too well. As we were walking back to the room, her therapist said, "Why is she walking funny?" She definitely was, and not just because her flip flops were in the wrong feet. She's used to that. :) Her base of support was wider than usual, her equilibrium seemed off, and she was toe walking, which has never been an issue for her. We agreed that it seemed like in her efforts to carry on activity as usual, she was having to work really hard to try and compensate for a sudden decrease in her perception of where her body was in space, which is a sensory processing issue. In addition, she looked very pale. She acted fine but just seemed a little off. Because of the vomiting on Tuesday, we didn't want to push her to the point of vomiting again just in case it wasn't a virus so we decided to have a calm therapy day. That includes massage, deep pressure, the cuddle swing, and some kind of heavy work if she doesn't fall asleep in the swing. Usually there's a complete relaxation that comes over her when she's being worked on but yesterday she kept squirming like she does when she's feeling queasy or overstimulated. It was right at naptime so it's always tricky to figure out how much that factors in but she was definitely having an off day. Then when it was time for the cuddle swing, it was totally obvious that she want feeling right. On Tuesday she tolerated a HUGE amount of activity. She spent 10 minutes in a swing, jumped on the inflatable mattress, crawled through the ball pit, and had massage and deep pressure. Yesterday she was in the cuddle swing for no more than 2 minutes with no swinging and she was DONE. Donny and I decided to take her to the pediatrician just to make sure there wasn't anything going on. Her regular ped was out for the day so we saw another one in her practice and I really liked him. It's always a little scary taking Raya to a new doctor because I never know how well they'll listen to me about her medical history and why we're there. He was really good though. He didn't talk down to me when he was explaining his opinions and I always appreciate that. He checked everything out and said she looked good but her stomach and bowel sounds were quieter than he thought they should be. He sent us to get an abdominal xray to make sure she didn't have an obstruction or any foreign objects. I'm still scratching my head as to when and how this happened but Raya has suddenly turned into the model patient. She kicked that xray's butt! It was the first time I haven't had to hold her still during an xray. They also did one where she was standing on a chair and I held her arms up for that one but she was SO good! It also helped immensely that Donny was with us all day. These appointments are so much harder by myself so I love when he's able to come too. The doctor called back later and said he didn't see anything on the xray. That means her puking on Tuesday was either a virus or not. If it was a virus, then that means Raya's body is so accustomed to the nausea and abdominal discomfort that comes with a stomach bug that it didn't even faze her. I had a little stomach bug 3 weeks ago and I felt HORRIBLE and didn't want to even move but Raya seemed completely normal other than the vomiting. I'm glad she can function so well when she doesn't feel good but I also think it's really sad that it feels normal to her. If it wasn't a virus, then it was just unexplained vomiting that has returned after a year with no explanation. Neither one is great but hopefully that's the end of it. She really is getting good at this professional patient thing. She walked out of the bedroom this afternoon with a thermometer in her armpit and said,"teh-ta-chuuh!" meaning "Look at me! I'm taking my own temperature!" :)

Wednesday, May 9, 2012

Puke

All good things must come to an end. It's been a little over a year since Raya's last unprovoked vomit. It was a lovely run but it ended yesterday with this:


We had a really good session at OT yesterday. Twice a week in-clinic OT has been one of the best things that's ever happened to this sweet girl. It's absolutely amazing to watch her at therapy now. Some of the things she's doing with a smile on her face are things that terrified her just a few months ago. The girls' favorite thing yesterday was the inflatable jumpy thing that Miss M. turned into a tunnel:


They had a blast! It's also interesting to me to see the difference in Raya's level of interest and participation when Kaida is there compared to when she's not. She's a little more willing to do certain things when Kaida's doing them. Yet another reason why I think Raya needs to qualify for early invention preschool...

After OT we came home and flung all the dirty dishes from the table into the sink so there was room at the table for feeding therapy. It was one of those humbling sessions where I get to examine my parenting techniques under a microscope and analyze what I'm doing that worked for the other 3 kids that doesn't work for Raya. It was fun. Sarcasm aside, Raya's therapist is nice about it, it's just humbling.

While she was...not eating, she got a 240 ml bolus feed from the feeding pump which ended halfway through her session. After her therapist left, I was sitting on the couch working on Donny's laptop and Raya came and climbed up on my lap. She laid her head down on my chest for a second and then sat up and spewed formula all down the front of both of us. I don't know who wa more shocked, me or Raya. Then a couple seconds later she REALLY erupted. When the whole 8 ounces of formula had left her stomach, we looked at each other and simultaneously cracked up. We were a MESS but oddly enough, it was just what I needed to make me laugh on an otherwise stressful day. To make it even worse, I couldn't get in the shower right away because a friend was coming over to drop some things off to me, so we did what anybody in this day and age would do: take cell phone pictures and upload them to facebook! :)



The whole thing was totally gross but she and I got a good laugh out of it. I was also concerned though. Raya doesn't just puke for no reason anymore, but this was completely unprovoked. She vomited two more times later in the evening for no reason too. The first time she was standing in the living room and it just shot out of her mouth with no warning again. It had been 4-5 hours since her last feed but she threw up a pretty large amount of formula. Then about 20 minutes later she threw up the soooooo s of water she had taken while she was sitting on my lap at the kitchen table. I ran a slow drip of pedialyte into her all night and then slowly added in formula today. I fed her a lot slower than usual just to make sure she didn't throw up again. She's been a little more clingy and subdued than usual today but there are no signs of illness so I don't think it was viral. Hopefully it was just a fluke, but at the same time can't help but wonder what's going on in that little body. It just serves as a reminder that things can change in the blink of an eye and that we need to keep being grateful for the good days we've been enjoying.

Tuesday, May 8, 2012

Meltdown vs. Tantrum

You'd think that after 3 other kids, I would be a pro at this mom stuff but Raya finds ways to remind me every day that I still have a lot to learn. :) Today, the topic of her lesson for Mommy is that there is, in fact, a difference between a Raya the sensory mess meltdown and a Raya the toddler tantrum. Who knew.
Case in point: the innate desire to be independent and do EVERYTHING for herself, and a lot of things for me too. Sweet and well-intentioned but often counterproductive. This morning I really needed to go potty. (TMI, sorry) I told the girls I was going to go potty and to behave until I came back, and Raya immediately made a beeline for the bathroom so she could open the toilet for me. Then she wanted to get the toilet paper for me. I asked her to go out and close the door for me but she wouldn't budge because she REALLY wanted to help me. Sweet gesture, but for the LOVE, can't I just do that ONE thing alone?!? :) I ended up using a different bathroom (read: ran away and locked the door behind me) and she cried and screamed and pounded on the door while yelling what I'm sure were her best attempts at insults and toddler profanities. By the time I came out of the bathroom 2 minutes later, she was busy doing something else. That was a tantrum. She was mad because she didn't get what she wanted, she threw a fit, and she got over it without any intervention from anybody else.

I've mentioned the carseat drama but it's the best meltdown example I can think of at the moment. Raya now wants to climb into the car, get in her carseat, and buckle it all by herself without me touching her or the carseat every time we get in the car. The problem is that she's not quite physically capable of doing all of that yet, and since we are often in a rush when getting in the car (yes, totally my fault) we don't have time for her to spend 10 minutes buckling herself, nor do I want her pinching herself in the buckles like she often does. That hurts! Raya doesn't care about any of the reasons why I help her buckle though, she just wants to do it herself.
Recently, any attempt on my part to help her buckle her seatbelt, no matter how patiently & gently I approach it, results in a screaming, kicking, wrestling match. Once she's buckled, she continues to cry and scream for the entire duration of the car ride no matter how long or short it may be. I think that often, being tired contributes to the meltdown but on a non-meltdown day, she often would have gone to sleep during the time frame that we're in the car. In other words, she's tired so she's more likely to get into meltdown mode but then once the meltdown starts, she's unable to calm down and regulate her emotions. Make sense?
There's a great article on Understanding SPD that talks about how a meltdown for a child with sensory processing disorder (SPD) quickly becomes a "fight-or-flight" response. The author of the article states, "I truly believe most meltdowns trigger a 'fight or flight' reaction for the child's brain, especially with sensory kiddos. Therefore the meltdown lasts longer and is difficult to manage." That's basically what I was trying to say with my ramblings about the carseat. Now that Raya has gotten to the age where it's normal for kids to be throwing fits, I'm starting to see a distinction between the typical 2 year old tantrum and the times when it's truly a sensory-related meltdown. The article goes on to explain the roles of the Parasympathetic Nervous System and Sympathetic Nervous System related to fight-or-flight and how to deal with a meltdown of this type. The bottom line is you can't treat a sensory meltdown the same way you treat a tantrum that is behavioral.
When Raya gets into a sensory meltdown vs. a tantrum, she cries and screams, doesn't respond to anyone that tries to talk to her, doesn't talk to anyone, often lays down on the floor, and she kicks/hits/wrestles/tries to get away. The biggest difference is the lack of responsiveness and the duration. A meltdown can last a very long time.

I'm certainly no expert on dealing with sensory-related meltdowns and am really still trying to figure out what works best for Raya, but so far here are the things we've learned:
1. When she gets into meltdown mode, there's absolutely no point in trying to talk her through it or reason with her because her mind is not in a state of being able to process reason or logic. As the article stated, "The brain is not responding in a cortical manor (thinking, judgment, and reasoning), it has shifted to brainstem level during a “fight or flight” episode."
2. I'm still learning how to have the type of patience it takes to deal with these meltdowns. Even after having 3 other toddlers before Raya, this is new territory for me and takes a whole new level of patience, including being patient with myself through the learning process. Sometimes after the fact, I know I didn't handle things the way I should have but I just have to learn from it and move on.
3. Sometimes the best thing I can do for her is leave her alone until she's done. When we're at home, sometimes I just lay her down on the carpet and let her throw her fit. Because we know that Raya gets visually overstimulated easily and being in the dark helps her calm down and relax, it can help to put her in a dark, quiet room for a few minutes. Removing her from whatever situation triggered the meltdown (when possible) can help.
4. Since a lot of the situations that trigger meltdowns happen in public settings, I've realized that having people stare is just something we're going to have to get used to and do our best to ignore. Some people stare in sympathy and some stare in judgement, but either way, it's uncomfortable. I don't want people to see my screaming toddler and think she's being naughty or think she's a "brat", but let's face it, that's what people think when they see kids throwing fits in public.
5. If I can remove her from whatever is triggering a meltdown and use the techniques I've learned from her occupational therapist, I actually CAN help her pull herself out of it and bring her back to a calm state where she's able to function with logic and conscious thought rather than the cortical "fight-or-flight" state of mind. This is why having an OT who is trained in sensory disorders is so vital. Raya's 2 OTs have helped Raya immensely but even more importantly, they have helped ME understand her so much better and have given me tools to implement at home.

I feel like for me, understanding sensory processing disorder is really a learning process. The more I understand, the more I realize that there is SO much more to it than meets the eye. In order to deal with sensory processing disorder as it affects Raya, I have to be able to understand what's going on inside her brain that's causing her to have the reactions that she has to the things that bother her. I also feel like the more I start to understand her and why she is the way she is, the closer I feel to her and the more I love her with all of my heart and soul.

Friday, May 4, 2012

The Twos and a preschool meeting

I'm not saying "terrible twos" because there are a lot of cute, fun things about 2 year olds, but holy smokes, Raya has most definitely hit "the twos"! We've seen all her life that she has a strong, feisty, determined personality but she's really kicked it up a notch lately. She gets it into her head that she's going to do something and there's just no stopping her. Or at least not without a giant meltdown. :) Her independent streak has hit epic proportions too. She MUST do EVERYTHING herself, even if she's not quite capable yet and everything is a wrestling match now. Diaper changes and getting in the carseat are the worst of it. She gets mad if I don't let her get out of the car by herself too. Yesterday she stood by the sidewalk and refused to come in the house because I helped her get down out of the car (which is an SUV that I don't want her to fall out of):
After 5 minutes of being extremely patient and nicely telling her it was time to go in the house (her favorite word right now is NO!), I finally picked her up and carried her kicking and screaming into the house. I cringe to think of what our neighbors must think sometimes. :)

She has gotten it into her head that she's a big kid just like her brother & sisters, which isn't entirely a bad thing unless it involves things like drinking out of the gallon-sized milk jug or taking a swig of Mommy's 2 liter bottle of strawberry Crush:

She's also managed to unplug her extension tube a couple of times lately during a feed and I find her sucking on the end of it (while playing with a water bottle on the couch which isn't allowed at our house)
Now don't get me wrong, I get that she's 2 and these are the things that 2 year olds do. If she was my first 2 year old instead of my 4th, I would think that it's all totally normal but she has been taking it to another level the past couple of weeks. She just can't let things go. When I buckle her into her carseat instead of letting her try (and fail) to do it by herself, she screams. Not just for a minute or two, but the entire time she's buckled into the carseat, whether it's 5 minutes or 45 minutes. Yesterday we were driving home from the post office and she screamed for the first 10 minutes and then stopped. I thought she was done, but then she must have looked at the buckle again because she started screaming again and yelling at me. This is how it's been for a week now every time she gets in the car. She has a really difficult time self-regulating when she gets upset about something. Not only is it irritating and frustrating, but it's also sad and a little scary to think of how life might be for her if she doesn't learn to cope with changes in her emotions. I can think back to kids I knew growing up who, for lack of better verbage, were emotionally unstable and would either fly off the handle or cry about every little thing and not be able to recover from emotional upsets the way other kids could. They just weren't able to regulate their emotions or react appropriately to situations that evoked emotional reactions and I don't want that for her.


We had her preschool transition meeting on Wednesday. I thought it would be the meeting where she was evaluated to see if she qualifies for the special needs preschool program but it wasn't. (and OH. MY. WORD. When did my baby get old enough to even be TALKING about preschool?!?) We met with our support coordinator and the school psychologist and all the psychologist did was tell me what the preschool program consists of, tell me we'll be having 2 more meetings for her evaluation & to go over the results, and give me some paperwork to fill out & bring to the next meeting. She was a nice person but it was pretty ridiculous to have to take Raya and go to this meeting when everything we did could have easily been accomplished by phone and email. It seems inefficient and wasteful to me but that's just my opinion.

Anyway, after having that meeting and seeing some of the questionnaires they gave me to fill out and then seeing some of the behaviors and changes I've seen in Raya lately, I really hope that she will qualify. Back to the wanting to be a big kid thing, I can see that having her older siblings to follow is helping her overcome some of her challenges faster than she would without their peer modeling. I think that being able to be in an integrated classroom setting while she's of preschool age would set her up for a successful experience in kindergarten and through the rest of elementary school. She honestly NEEDS to have that kind of peer interaction to be able to adjust to the classroom experience prior to being in kindergarten and she needs to be able to continue her therapies at least until she's of school age. It's hard for me to put it into words exactly why she does, but she does. Raya is one of those kids that started out with early intervention therapy services at a very young age (<6 months) and has done so well with them that she's made improvements in all of her deficits, but now because of the progress she's made, I'm afraid that she's at some point going to lose her therapy services in spite of the fact that she still desperately needs them. Until her preschool evaluation is over with, I'm trying not to stress about whether or not she'll qualify but I can't help but wonder. It's scary to think about so I try not to because worrying doesn't help anything and for now, she's covered.

*Deep breath* Okay, back to the cute parts about being 2. I've said it before and I'll say it again, I think there are fewer things cuter than a peacefully slumbering 2 year old. Especially one that was screaming at you in the car 20 minutes before falling asleep in your friend's back porch baby swing:
She was sweaty as heck when I got her out of there but it felt good to just sit on the porch and push her in the swing while I visited with my friend. A sleeping piggy tailed 2 year old is a beautiful thing. :)

As spunky and feisty as Raya can be, she is also incredibly sweet and compassionate. On Monday we went to the hospital to visit our sweet little friend Whitney who had major abdominal surgery the week before. We had visited her in the PICU the day after her surgery and she was absolutely miserable. They hadn't anticipated the surgery being as invasive as it turned out to be and didn't think they'd be there as long as they have, so we wanted to go visit them again. We walked into the room and the girls saw each other and smiled but Raya decided to be bashful. Eventually they said hello to each other and then we told the girls to give each other hugs. Raya reached down to hug Whitney and Whitney just melted into Raya's arms. It's a good thing Raya outweighs her by 10 pounds because she just kept leaning on Raya. It was the most ADORABLE thing!
Shortly after I took that picture, Whitney just burst into tears for no apparent reason while she leaned on Raya. So sad! I think she just had cabin fever from being there for so long and needed a friend to cry to. Raya looked up at me and didn't quite know what to think but she just let Whitney lean on her until one of her parents picked her up and held her for a minute. It was hard to watch that and not cry right along with her! The poor girl had really hit her limit on being at the hospital and even cried when the volunteers came in to bring drinks. After we'd been there for a few minutes, Whitney calmed down and relaxed and the girls played together a little bit.
Thankfully, Whitney was finally able to go home yesterday.

So if you see me and I look exhausted, it's probably because I spend most of my day wrestling with a 30 pound 2 year old. She wears me out but I sure do love her!

Wednesday, May 2, 2012

Follow-up to medical supply storage post...

After some of the responses I got to my last post about how we store our medical supplies and after reading back through it, I feel the need to clarify a couple of things.

1. We haven't always had extras of things and we've learned our lessons about that. After Raya's G tube surgery we went for a month with the same 2 grimy extension tubes because home health & insurance took way too long to coordinate things after surgery. Then when home health actually did send us extensions, they were for the wrong kind of tube so we were stuck with the same old dirty ones until they got us the right ones. When Raya had an NG tube, we went for a couple of months with no extra because insurance would only pay for 1 every 30 days. It took several phone calls but I finally begged and argued enough that insurance agreed to allow home health to ship us 3 at once in case her tube got damaged beyond usability.
We've also had a couple of times where we got dangerously low on her formula for one reason or another (like, using the last half of the last can when the new shipment finally showed up). We've had to wash and reuse pump bags for more than the recommended 24 hours, and we've had to scrub and oil the same syringes to keep them working longer so we didn't run out of those too. Once or twice, I've decided not to order something from home health because I didn't think we'd need it only to have that item be unavailable the next time I need to order it. I LEARNED MY LESSON!! Way back in the beginning, a friend told me to always order everything that insurance will pay for because you NEVER KNOW what might happen! It's not unrealistic to think that there could be a shortage of something at some point.

2. Having a child with any type of special medical needs means that you have to take extra measures to prepare for emergencies. For a tube fed child who is completely dependent on specialized formula and a feeding pump, that means that if you have the opportunity to acquire surplus supplies, you absolutely should do it. There are all different types of emergencies that require all different types of preparation. For example:
  • If you have a child with an NG tube, you need to have a small emergency kit with your child wherever they go that includes everything necessary to reinsert the tube. For us, this included the stylet (wire that goes in the tube while it's being inserted) and/or a spare tube if we had one, a small amount of water to wet the end of the tube with and to flush the tube once it was in, a 5ml syringe to check placement and flush the tube, a stethoscope to check placement, duoderm & tegaderm adhesives to tape the tube to her cheek, and durapore tape to tape the tube to her shirt.
  • If your child has a G tube, you would need a kit that has a bare minimum of a spare G tube and 6ml luer tip syringe OR a foley catheter to hold the stoma open en route to the emergency room. In addition, we also carry a spare extension tube, 60ml cath tip syringe, 5 or 10ml slip tip syringe, water, formula, Hypafix or Medipore (cloth tape), Micropore (paper tape), split gauze, and sometimes a spare pump bag.
Other types of emergency may have absolutely nothing to do with you and there's nothing you can do about them, such as a supply shortage, formula recall, defective supplies, power outages, problems with your home health supplier's ability to deliver supplies on time, water main breaks that could cut off your water supply temporarily, natural disasters, and things of that nature. Then there are things like unexpected loss of insurance coverage. If you've ever seen what home health companies bill for medical supplies, you know how financially devastating it could be just to have to pay for one month's supplies. My feeling has always been that we needed to stock up when we have the ability in case of whatever unforseen circumstances may arise in the future.

2. How did we end up with so much and why do we keep it. What we have right now is an accumulation of 2 years and 3 months of tube feeding. The first time we ever had any type of "surplus" in our supply was when Raya had her G tube surgery. She was in the hospital for 5 days which meant that during those 5 days, we weren't using the formula or pump bags that we had at home so they became extra. Then a couple months later, we had another 2 weeks at the hospital so we had another 2 weeks' worth of supplies that didn't get used. Before that, we were living a day at a time with her pump bags & formula and didn't have 1 day's worth to spare, so it was a huge relief to have some extras. A couple months later we had another week at another hospital and accumulated a little more.

About a year ago, Raya started tolerating a little bit of real food. On days when she has eaten a significant number of calories or we've put blenderized food through her tube, we've been able to cut back on the amount of formula she takes in that day. She is very unpredictable with oral intake though, and what she does take in doesn't meet the nutritional requirements for a child her age so she is still completely dependent on the formula for her nutrition, which is why we can't risk reducing the amount that we get from home health. Our supply continues to build on days when she doesn't need as much, but in reality she is still 100% dependent on her feeding tube and formula.

Donny and I were both raised in a faith that places a lot of emphasis on self-reliance and keeping a supply of food storage on hand to rely on in times of need. One weekend when Raya was 3 months old and had only been tube feeding for a couple of weeks, we took a little trip to visit my in-laws. It was an hour's drive to their house and when we were almost there, I had a little panic attack because I suddenly couldn't remember if I had packed everything we needed. That was when I also started to realize that somehow, I needed to start building a "food supply" for Raya too. She was on Neocate formula, which you can't just run to the store and buy, and it was just an awful feeling know that even if the rest of us had food storage, Raya was at the mercy of home health and insurance. It was a HORRIBLE feeling, and changed the way I viewed things, and that's why we order and keep everything we're able to get.

3. We are very conservative in our use of supplies and use things until we can't use them anymore. Case in point, the extra pump backpack. When we changed insurance last year, we were able to have a new backpack covered. Her old one that she's been using for almost 2 years now is literally falling apart at the seams. It came with her pump when we switched to the Zevex Infinity pump from the Kangaroo Joey, and it's not very well made. The lining peeled out after a couple of months, there's a hole in the top from the weight of the pump bag pulling on the seam, one of the straps is about to come unstitched, one strap doesn't stay adjusted to the right length anymore, and it wasn't made to be compatible with the strap holes on the new style pump bags. When the new one came, I was so excited and couldn't wait to dump the old one, but then I decided that there was no sense in getting out a new one when the old one still has some life left in it. I put the new one away (which is higher quality anyway) and when the old one is no longer functional, we'll switch. That way, if she's still using the feeding pump when she goes to school, she will have a backpack to keep it in that's not falling apart and we'll avoid a future out of pocket cost of replacing it.

4. I've learned not to take "No" for an answer and have fought for what we're currently allotted. Everything we have has been obtained honestly and ethically. I know at some point everyone who deals with enteral feeding spends at least a few hours on the phone with insurance and/or home health trying to get more supplies and I have done a lot of that. I don't know all the behind-the-scenes stuff about how home health companies and insurance companies deal with each other, but it has seemed at times that home health companies start people out with a bare minimum and it never occurs to the patient that they can ask for more of something like extension tubes. Also, in fairness, customer service reps from home health & insurance aren't generally experienced in enteral feeding and only know what they've been taught in their job training so there is a lot that they don't understand about the supply needs of a tube feeder.

When Raya first had her G tube, home health only sent us 2 extension tubes. I don't know if it was the specific formula Raya was on at the time or if it had more to do with the fact that she was being fed for 22 hours a day, but after about 5 days, that extension tube was absolutely disgusting. It smelled bad, there was gunky formula built up inside of it that I absolutely could not get out no matter what cleaning techniques I used, and it made me feel like a bad parent to feed her through something so gross. I would never expect my other kids to eat off of a filthy plate, so why would I be okay with feeding my GI compromised baby through a dirty extension tube? When I called home health to make our next order, I explained to the customer service rep that there was absolutely no way we could continue to feed her with only 2 extension tubes and that we needed more. To my surprise, she said, "Okay, I can send you 4 but any more than that and we'll have to get a prescription from her doctor." It actually made me angry that it was so simple as asking for more but nobody had ever offered 4 or asked if 2 was enough in the first place.

A few months later when Raya got her GJ tube, I had to lobby for more extension tubes again. She was being fed and drained continuously so both ports were in constant use. We had a lot of extension tubes breaking from so much use and they were getting dirtier faster, especially the ones we used to drain bile out of her stomach. If you've ever smelled bile, you'll understand what I mean. Again, I explained the situation to home health and they were able to get us what we needed. I think that time we may have had to get a prescription from the doctor but that wasn't a problem. (we're very lucky to have a great doctor & great nurses who help us out with things like that)

In summary, I just want people to understand that we're not being greedy or doing anything wrong by having a storage of Raya's medical supplies, we're just using the resources that have been made available to us to plan for her future and make sure she's taken care of. We know how scary it can be to not have the supplies you need. If you are struggling to get supplies and formula covered or are short on something that you really need, there are several supply and formula exchanges that allow you to get things for very low costs. A lot of people end up having extras of things that insurance has paid for and they can't sell them so they're willing to donate them for the cost of shipping. If you have things that you can no longer use, PLEASE don't throw them away! Here's a list of several of the supply exchanges, courtesy of Feeding Tube Awareness.

Tuesday, May 1, 2012

How we store our feeding tube supplies

I was going to title this post "Where to put all that medical crap" but decided not to. :)

Back when Raya first got discharged from the hospital at 2 months old with an NG tube, I looked at the pile (wagon load) of supplies we brought home with us and thought to myself, "Gosh, I don't know where we're going to put all of this stuff!" Now I laugh at the thought that back then, I really felt like we had a whole bunch of stuff to store. :) We had a Kangaroo Joey pump & backpack, a week's worth of pump bags, IV pole, charger, a few diapers, half a bottle of sterile water, 1 roll of durapore tape, 3 cans of formula, and 36 2 oz bottles of ready-to-feed formula. Now 2 years and 3 months later, we've accumulated a LOT more and all we have is a feeding tube to manage. We don't have any other devices to manage (i.e. trach, port, PICC, Broviac, Hickman, ventilator, ostomy, oxygen, mobility aids, suction machine, catheter, etc.) so we definitely have a lot less medical supplies around than other families. What we do have still takes up a lot of space though, so I thought I'd share how we keep everything organized.

The first stop on our little tour is the "black shelf thing". Aren't my kids cute? :)
I got the shelf unit, the baskets, and the shoebox-size boxes from Ikea, by the way. If you look closely, you can see that there are cases of Peptamen Jr underneath and cases of Pedialyte in the space between the shelf & the wall. Unfortunately that's the best place I've come up with to put those boxes (can't put perishables in the garage due to the hellish summer that is fast approaching) and now that Nestle has changed the packaging, the new cases won't fit under there. Thanks a lot, Nestle...

The first basket has miscellaneous junk in it. Every house needs at least one miscellaneous junk basket, right? :) The second basket has several different types of extension tubes and gauze:

Basket #3 has 4 foot tubing extensions and 60ml cath tip syringes in it:

And the 4th basket has the lovely Zevex Enteralite Infinity pump bags in it, or as Raya calls them, "bads" for her "beep beep"

The black boxes above the big baskets have medical tape in them. All 4 boxes. Lots of tape.
(this is about the point in the tour where I start realizing that I've become a hoarder of medical supplies...)

The next stop on the tour is the medical supply bench. I got it for Christmas when Raya was a month old for storing photography props.

Then 3 weeks later she got her NG tube and it became a medical supply bench. :) Now it has a lot of miscellaneous supplies in it that we don't use very often or are extras of things that don't need to be replaced very often:
(again, feeling like a hoarder of medical supplies and actually a little embarrassed about how much we have. we're very lucky and I've also done a lot of fighting with insurance & home health in the past 2 years & 3 months in order to get a lot of what we have around here.)

And finally, the formula cabinet:
It doesn't look as cool anymore with the new carton-type packaging instead of the cans. The extra cases won't fit in the cupboard or under the black shelf thing anymore either and the kids are going to be bummed when they no longer supply the Ronald McDonald House pop tab collection box at school with an embarrassing number of pop tabs. I stopped stacking the cans 3 high all the way across the whole shelf because it was bowing in the middle and I didn't want the whole thing to come crashing down, especially since this is the home of the microwave too. In the drawer above the shelves are all of Raya's feeding therapy tools (chewy tubes, assorted toothbrushes, whistles, etc) along with a lot of other miscellaneous junk.

There is also a small basket next to Raya's dresser with gauze, paper tape, and a few syringes. Next to that are the diapers & wipes. The top drawer in my nightstand has more gauze, more paper tape, 2 different thermometers, Hypafix tape & scissors to cut it with, a couple of extension tubes, an emergency G tube & the syringe that goes with it, a bunch of Stat-Lock supplies that we tried out when she had a GJ tube, and some baby washcloths. The next drawer down has piles and piles of cloth diapers that we used to use as puke rags. Most of them have been sitting in the drawer for about a year now and that makes me very happy. :)

That pretty much concludes the medical supply storage tour. Lest anyone should think that I'm really THAT organized, I should mention that there are random medical supplies strewn all around the house. I have boxes of formula, Pedialyte, and feeding pump bags that I don't have places for. Sometimes I think the extension tubes have crawled off in some corner and started reproducing because just when I think I've collected & thrown away all the used ones, I walk into a room and step on one. Those suckers hurt! At this moment, there are 3 different rolls of medical tape on my computer desk in my office, which Raya never even goes in. There is also medical tape in my purse, diaper bag, car, on the kitchen counters, in bathroom cupboards, and under the couch. I think I could do a whole post about the alternate uses the kids have found for medical tape too. (like fixing a broken flip flop when we were out of the house once) There are syringes and parts of syringes EVERYWHERE, and don't even get me started on the packaging from the gauze and the paper strips off the back of the Hypafix tape. Oh, and it never fails that in every single load of laundry, there will be at least ONE item that comes out of the dryer with medical tape stuck to it. And you know what? Someday all of this will be gone and although we'll be excited, a part of me will be sad to see it all go too and it will be strange to be without it. Is that weird?

*Note: If you are struggling to get supplies and formula covered or are short on something that you really need, there are several supply and formula exchanges that allow you to get things for very low costs. A lot of people end up having extras of things that insurance has paid for and they can't sell them so they're willing to donate them for the cost of shipping. If you have things that you can no longer use, PLEASE consider donating instead of throwing them away! Here's a list of several of the supply exchanges, courtesy of Feeding Tube Awareness.
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