Beautiful sights to behold

Sometimes you just have to slow things down a bit. Life gets a little too crazy, things start to spin out of control, and you just need to take a step back. That's what we're doing right now. The last 2 1/2 years have been rough. It's been rough on everybody but I've realized recently that I've taken on more than I need to and it has taken its toll on me in a lot of ways. The remedy? Cancel everything and stay home. :) We've been spending a lot of time together at home for the past couple of weeks and it's been wonderful. The kids love playing together (almost always) and they love to snuggle up together on the couch at night and watch silly movies on Netflix before bed. Last night as I was being subjected to another episode of Phineas and Ferb, Donny and I sat on one couch and the kids were on the other. I looked over at them and what I saw just melted my heart:

The pictures may be blurry and pixely and their eyes might be glowing, but even that doesn't take away from how sweet it is to see them all happily piled on the couch together.

Raya finally got to come to church with us today. She's only been twice since last fall because ugly things happen when Raya gets sick. Her respite provider was out of town and since school is out, we had been planning on taking her to the nursery class today. Plans changed when I heard that HFMD (hand-foot-mouth disease) has been on a rampage lately in this area. It causes a fever, sore throat, rash and sores in the mouth and on the hands & feet. Needless to say, we do NOT need anything to make eating painful for her again and cause new oral aversions when we're still trying to overcome old ones!

We still took her with us but opted to keep her in the adult classes instead of send her to the nursery. We're very fortunate and grateful that she doesn't have any immune deficiency issues but when she DOES get sick, she's a mess for weeks and I'm just not willing to risk it yet. It seems like for the last several months, every time she starts to really make progress she ends up getting sick and losing it all again.

Anyway, the girl was SO excited to get to come with us! She was all dressed and ready to go first thing this morning, thanks to her big sisters. She wore one of Kaida's dresses but you never would have guessed it wasn't hers since it fit her so well. Aside from the very smelly poopy diaper, church went well considering that it's 3 hours long, it's exactly during naptime, we kept her in the boring (to a 2 year old) adult classes, and she's not used to going.

Since she missed naptime, she was pretty tired when we sat down to eat dinner. Since everything on our menu tonight required advanced chewing & swallowing skills, I opted to give Raya her good ol' plain Greek yogurt and goldfish crackers. Her last couple of meals hadn't gone too well so I wanted this one to be successful and positive for her. (Oh, and by the way, we decided a couple days ago to lift the ban on Raya eating cultured dairy products since she has always tolerated them just fine. After the way she was when we gave her milk though, we are NEVER giving her milk again! At least not until she's able to tell us that it makes her feel yucky.)

Raya's big brother used to fall asleep while he was eating lunch and dinner at least a couple times per week. It was adorable! I'd leave the room for a minute and come back to find him zonked out with peanut butter and jelly all over his face (back before we knew he was allergic to nuts). Sometimes he'd even keep taking bites even though he was totally asleep. He was a very busy boy when he was Raya's age and because he was so busy when he was awake, I treasured the times when he would doze off peacefully with his little cheek on the counter next to his half-eaten burrito. Even as much as I thought I appreciated it, it was one of those things that I took for granted as something that all kids do at one time or another until Raya came along. I have wondered many times if there would ever be a time that she would fall asleep in the high chair with food hanging out of her mouth. It probably sounds silly to anyone who has never struggled with a non-eating child, but it made me sad to think that I might miss that with her and I have wished for it.

Today turned out to be the day that it happened though. We sat down at the table and dished out everybody's food, including Raya's, and started eating. Raya was hard at work on her 5 goldfish crackers and 1 tablespoon of "sah-SEEM!" (i.e. Greek yogurt) when suddenly out of the corner of my eye, I thought I saw her little head bob. I told her she looked tired and she shook her head "No" at me and kept eating her yogurt-covered goldfish. A few seconds later, her eyelids were getting REALLY heavy and her head started to bob again.

Everybody laughed so she laughed and took another lick of yogurt.

Even as she licked the yogurt off of her fingers, she could barely keep her eyes open. :)

We tried not to let her see that we were watching her but it didn't take long and she was out.

She finished her first 5 goldfish and most of the tablespoon of yogurt and asked for more, so I gave it to her. She tried SO hard to stay awake and eat it but she just couldn't keep her eyes open.

Right after I took that picture, her head fell backwards and she jerked awake which made everybody laugh. Since the big kids were laughing, she knew she had done something funny so she started laughing really hard and trying to do it again. Try as we may to ban laughter from the dinner table so Raya can focus on eating, they just can't seem to help themselves. :)
From that point on, Raya wasn't nearly as sleepy and kind of shifted gears to the pointlessly-staring-into-space phase of toddler drowsiness. Also entertaining to watch. :)

Once I reminded her what her objective was, she got all excited about her "sah-SEEM!" (and yes, she ALWAYS says it that way) and started digging in with her spoon again.

Okay, well she doesn't look all that excited in that picture but she was. :) She sure does love her "sour cream"! I think she thought I was a little crazy taking a dozen pictures (and maybe a video clip or two) of her falling asleep at the table but it was something that I have looked forward to and want to remember. :)

Sometimes you just have to close the doors on everything that's trying to steal your happiness, take a break from reality, forget about all the outside crap that drags you down, and be happy with who and what you have in your life. That's one of the most important lessons that I've learned in this phase of raising our family.

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.

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 medical reasons why they shouldn't be doing it.

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. :)

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.

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.

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.

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.

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!" :)

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.

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.