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**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.**

Tuesday, July 31, 2012

Protesting everything

My girl had kind of a rough weekend. We now know what happens when she goes off of her Prilosec cold turkey. It was an unfortunate result of me forgetting to get prescription refills fromm the doctor at our appointment last week, the medical assistant I talked to at the doctor's office telling me to call the pharmacy and ask them to fax over a refill request, and the pharmacy not faxing it like they said they would. (side note, what's the point of having a refill line at the dr's office if someone's just going to answer it and tell you to call the pharmacy??)

I called the pharmacy yesterday and they said they had faxed the request but never heard back, so I called the doctor's office. They had never gotten anything from the pharmacy, which did not surprise me in the least, which was why I had called the doctor's office instead of the pharmacy to begin with. I know who I can and can't count on to get things done! Fortunately when I called the doctor's office yesterday morning the person I talked to was very helpful and the pharmacy had both of her prescriptions ready in an hour, which has never happened before. I don't know what she said to them but it worked. :)

Anyway, we ran completely out on Friday and ended up going all weekend without it. She didn't seem outwardly miserable or anything but if you listened & paid attention, you could hear her refluxing and swallowing. I lost track of how many times she said, "Mommy, few-mahmow," which translates to, "Mommy, there's puke in my mouth." She also had a major decrease in her desire to eat, which I'm sure was fueled by me making her eat 2 bites of horribly disgusting soy yogurt. Not only did we see those changes that were obvious direct results of no reflux meds, but we also have seen behavioral and emotional changes. She's wearing me out. We had a very rough day today.

This morning we went to the last of the summer movies. She's always squirmy but today she was out of control. She climbed all over Donny and me and a couple of other chairs and the stairs and the arm of my chair. He ended up taking her out for a walk for about 15 minutes and when they came back in, she asked me to take her to see her therapist. You know a kid is having issues when she's asking to go to therapy. We left the movie early to go to OT and even walking out to the car was an ordeal. She was having a problem with wanting to hold my hand but not being able to tolerate having me touch her hand. It sounds contradictory, I know. She held her hand up to me but kept it straight & stiff and wouldn't hold onto my hand.

The 30 foot walk from the car into the clinic took us 5 minutes because she had to talk to the flowers on her way in. When she got in the door, she kicked off her shoes and started looking at books. Her therapist came to get her and Raya got upset because I only let her bring one book with her. That one little thing set the tone for the while therapy session. She refuses to talk when other people ask her questions, completely ignores any instructions she's given, gets upset if you try to impose your will on her, and can't get over it when something upsets her. She's having a very hard time regulating her emotions. It's ben an ongoing thing but this week it's definitely worse.

I usually stay in with her during therapy. I like to see what she's doing and have her therapist explain things to me, and I like to be a part of her therapy. I think that's important because I need to be able to keep things consistent at home. Today I had to leave though. She wouldn't do anything and wouldn't stop clinging to me, so I left. Heer therapist was trying to get heer to say "please" to another therapist and Raya wouldn't do it. Instead, she kept cocking her head to the left (the torticollis side) and rubbing her eye. She got upset when I left (hello separation anxiety) and one side of her face got really flushed and she kept torquing her neck to the left. They did get her settled down after a few minutes. I came back in about half an hour later and she was doing better. She got to jump in the air mattress and chase bubbles for a few minutes and that made her happy.

That cute little boy in the picture was rather smitten with Raya. He kept watching her instead of doing what his therapist was trying to get him to do. :)

This appointment was all about getting her to respond when someone is talking to her, getting her to use words, and getting her to follow instructions. It can be a tall order for any 2 1/2 year old but with her (at least today) it was pretty much a lost cause compounded by the increase in reflux and crummy sleep. When the appointment was over, she had to hold my hand on the way out (her therapist made her) and she did pretty good until we got to the door to the waiting room. Then she had to sit on the little chair next to the door. Then we had to put the book away in the waiting room without taking more books off the shelf. Then we walked outside and she had to stop and play with the flowers again.

I started the car and she casually turned around and sauntered to the door to get in. She ate a Nutrigrain bar in the car on the way home (one thing she does like) and fell asleep as soon as she'd swallowed the last little bit of it. I don't mind when she falls asleep in the car on the way home from Thursday's OT appointment but on Tuesdays that means she gets a short cat-nap and then has to wake up for feeding therapy. I laid her on our bed when we got home and she must have really been tired because it was the first time I've ever been able to connect an extension tube, give meds, and disconnect the extension tube without waking her up. When her feeding therapist came, she didn't want to wake Raya up, especially after I told her about our weekend, and I was completely on board with that. We just talked about what's been going on and what to do to get her back to where she was before we ran out of Prilosec and we called it good for the day. Sometimes you just don't mess with a sleeping 2 year old!

Evening wasn't too pretty either. I hooked up her feed and wrestled the backpack onto her. It had an ice pack in it that I thought she'd like having against her back but she didn't care. A couple minutes later I turned around and saw her like this:

She also grabbed her G tube and almost ripped it out of her stomach on purpose, which she's never done before. She usually leaves it alone.

Then it was dinner time so I got out a jar of pears & blueberries since I know she likes it. It was still a really big struggle to get her to eat any though. It's hard to feed a kid that's doing this:
She flat out refused to take bites even though I had let her choose her motivator food (this time it was ice cubes & water) so we had to come down the hierarchy and instead of having a bite, I let her kiss the spoonful of food. After she kissed it 3 times, I gave her a bite of ice. Then she decided she wanted some of my chicken. (It was shredded chicken cooked in a crockpot with half a bottle of Tangy Bacon Catalina salad dressing. SOOO yummy!) I told her she could have a piece of chicken if she licked the spoon of baby food, so she did. To my surprise, she did actually chew & swallow the tiny piece of chicken. It took her several minutes to swallow the chicken but she did it. After a few more licks, I got her to take a bite of food and by the time she was done, she had eaten about 2 ounces of baby food and a miniscule amount of shredded chicken. Sometimes the exhaustion of the process makes it hard to appreciate what we've accomplished but I was happy to see her take tiny bites of chicken.

Saturday, July 28, 2012

Still hard, still worth it. I think. I hope.

Lately I've been clicking on those little links at the bottom of each blog post and reading through past blog posts. Sometimes I need that. I do it on my family blog too. It brings back memories, helps me remember where we've come from, and reminds me that my babies are growing up WAY too fast. Today while I was reading some old posts, I came across one called "Not easy but worth it". It was from almost a year ago and as I read through my own account of chiseling dried oatmeal-raisin and bean purees off the floor, feeling overwhelmed by the prospect of supporting the kids through another school year, giving enough attention to my dear little 3rd child, and trying to count calories and adapt to yet another change in feeding schedules for Raya, I couldn't help but laugh at the fact that not much has changed since then. We're rapidly approaching the start of another school year, I will still have 2 little girls at home (unless Raya gets into preschool, then I'll have 1 little girl at home by herself for part of the time), I'm taking classes myself (finishing prereqs for nursing school), and STILL trying to adapt to Raya's new eating skills while coping with her lack of desire to eat anything but what she feels like eating at that precise moment.

Really, it's not any different than what any other mom experiences. Mothers have burdens placed upon them, and although they take different forms, they all serve the same purposes of stretching our abilities, pushing the limits of our patience and self-esteem, and expanding our horizons as we learn to think outside of the box to solve our problems. I've had 2 or 3 people within the last week comment to me on how in awe they are of me (I'm blushing as I type that because there is really nothing to be in awe of...) and although I appreciate that they are trying to compliment me, at the same time I just want to tell them that what I'm doing is no more significant than what they do for their kids. We are all in the same business of raising children, and every mother faces different challenges with each of her children. None are more or less significant, they are just different.

And reeling myself back in from that tangent, I had to laugh when I read that blog post from a year ago because ironically, Raya is not eating any more now than she was then. Things are different, but they are largely still the same. She's just older and the messes no longer consist of pureed beans or oatmeal. She refuses to touch those foods now. :) She does eat a few different things now than she did a year ago, but she's very inconsistent and OH MY HEAVENS does that child have her own opinions about things. She can eat something one day, i.e. chocolate coconut milk yogurt (we're not giving her dairy anymore) and be motivated enough by whatever her prize food is to consume a decent quantity. Yesterday, she ate about 3 ounces of it. Today, however, she refuses to even kiss it. She doesn't want to touch it, she doesn't want it on her plate, she doesn't even want to watch ME take a bite of it. (side note, although I'm not a fan of chocolate yogurt of any kind, the strawberry-banana coconut milk yogurt we had with her feeding therapist this week was DELICIOUS) Even when I got out the Nutrigrain bar that she DID want to eat as a motivator, she didn't care enough to want to take a bite of the yogurt.

I had bought a couple other non-dairy yogurts so when she refused to have anything to do with the chocolate coconut milk yogurt today, I let her go to the fridge and get one of the soy yogurts.

(I should preface this by saying that there are many things that soybeans were not intended to be, and yogurt is most definitely one of those things. The following sequence of events was not entirely her fault.)

Mistake #1: I thought she'd be okay sitting on a regular chair instead of being strapped into her high chair, which she is rapidly outgrowing. While I was trying to get her to eat, there was WAY too much of this going on:
(this was when I heard her swallow loudly and she sat up and said, "Few-mahmouh" which translates to "There's puke in my mouth." Gross.)

Then she finally sat up and held still long enough to take a bite. The first bite went okay other than the funny faces she always makes on the first bite. The second bite looked more like this:

It's a nice mid-gag shot, isn't it? I didn't have the sounds or flash on so she didn't know I was taking her picture. Her feeding therapist always says she's gagging to put on a show for me and sometimes she definitely is. After I had given her the second bite, I tasted the yogurt myself to see how it was. Oh. My. Goodness, it was DISGUSTING. Absolutely, positively disgusting. The best description I can come up with is black cherry flavored ranch dressing. Yeah. Sick. Those gags were honest.

Knowing that Raya has pretty skewed tastebuds anyway, I decided to keep feeding it to her. At that point, she insisted on feeding herself the 3rd bite (she has to take 3 before she gets a bite of the "motivator" food). I handed her the spoon and she sat & stared at me for the next 2 minutes while the yogurt started to slide off. She had decided at that point that she wasn't going to have another drop of it pass her lips, and thus the standoff began.

She was still not strapped in at that point so she was all over the place. I'm not kidding when I say that this girl cannot sit still for more than a few seconds at a time. She is one of the absolute most active 2 1/2 year olds I've ever met. I was rapidly losing control of the situation & knew we weren't going to get anywhere if I didn't strap her in, so I did. It was a wrestling match that ended in tears.
(yes, her shirt is on backwards. she's very opinionated about how she wears her clothing and if she's not being seen in public, I let it slide. It's all about picking your battles.)
I walked away for a couple minutes while she calmed down and then came back to have another go at it. All attempts were stonewalled.

Mistake #2: I told her she couldn't get down until she took one more bite.
Her feeding therapist is always reminding me to make statements to her, not ask questions. So instead of saying, "Do you want one more bite?" I say, "Raya, have one more bite." It's amazing how you don't even realize that you pose questions to your children until you have a child who forces you to take a closer look at yourself. :) If I said it that way to my other 3 kids, it was never an issue but it's a completely different story with Raya. She's more of a "give her an inch & she'll take a mile" type of kid, bless her heart.

As soon as I uttered that fateful ultimatum, I knew I'd shot myself in the foot. I couldn't go back on it because then she'd be in control of the situation, which is not good for a 2 year old with eating problems. If I back down once, she'll expect me to do it again. After about half an hour (which was filled with interruptions or it wouldn't have been quite as long) I finally decided that it was more important to me that she eat the Nutrigrain bar she'd been asking for than it was for her to eat any more of the disgusting yogurt, so I made a small concession. Instead of making her eat the bite, I came down a notch on the heirarchy and told her that if she would kiss the bite of yogurt, I could take it away. To my surprise, she instantly agreed. She put her lips together and waited for me to let her kiss the spoon. I made sure plenty of yogurt got on her lips and told her to lick it off. She did no such thing, of course. She did eat the whole Nutrigrain bar though, so that was a 120 calorie victory of sorts.
Good enough for me, and now we know to NEVER buy yogurt that's made out of a legume again.

Sometimes when I'm sitting across the table from her trying to convince her to have another bite of something, I just can't believe how difficult it is to get her to eat. It seems so basic. You eat to live, but yet she doesn't comprehend that connection. Eating doesn't serve enough of a purpose for her to be willing to put forth the effort to do it a few times a day, every day. I watch her gag on a mouth full of food and just can't believe how hard it is. But you know what, EVERYBODY faces something that's hard with their kids. Every kid has things that are hard for them and every parent has difficulty dealing with something that their child goes through. The difficult thing for Raya and with Raya just happens to be eating. I'm glad I happened upon that old blog post today though, because what I said a year ago was right. This is hard but worth it, and whatever YOU go through with YOUR child will be hard but worth it too.

Thursday, July 26, 2012

Cup, schmup. How about a syringe?

Who needs a cup/water bottle/sippy when you have an ample supply of 60ml syringes on hand? Certainly not Raya.

I think she drank more water this evening out of that syringe than she's ever had all at once before. She was so proud if herself for filling the cup, sucking water up into the syringe, and then squirting it into her mouth that she didn't even seem to notice how wet her shirt was getting. Or the floor. (Interestingly enough, she doesn't cough nearly as often when she drinks out if a syringe as she does when she drinks out of a cup.) I didn't mind the mess. It's nice to see her so pleased with herself. :)

The fact that she prefers to drink out of a syringe right now gave me a good laugh when I thought about the prospect of Raya showing up at school with a syringe instead of a water bottle. I wonder if the school has a policy on children drinking out of syringes.

After she had downed about 6 ounces of water, she wanted to eat some chocolate (um, ha ha, nice try kid) so she climbed up in her chair. You know, because she refuses to let anybody help her. While she was getting in her chair she kept saying something to me and for the life of me, I could NOT figure out what she was saying. I did notice once that she got interrupted part way through what she was saying by having to close her mouth so water didn't shoot out of it. THEN I realized that she was saying, "There's puke in my mouth. Water puke." Or at least I think that's what it was. She has been SO difficult to understand today, and it gets worse as the day goes on. A lot of the letter sounds that should be hard and crisp are much more soft than they should be when she makes them, but I've noticed that the more she talks, the softer & more slurred the sounds get. I've made a mental note to bring that up with whoever evaluates her for preschool & long term care and with her neurologist in a few months when we see her again because it doesn't seem quite right to me. It makes me wonder about her muscle tone in her mouth & throat, especially since we've also noticed that she coughs more after she's taken several swallows of water.

Anyway, once I realized that she was telling me that she had puked in her mouth but swallowed it back down, I was torn between feeling proud of her for not puking everywhere and being grossed out. At least it was just water. :)

Wednesday, July 25, 2012

First GI visit

After 3 long months, we finally saw Raya's GI doctor again. It felt like we hadn't seen each other in years! Especially after waiting for 40 minutes to see her. :) It doesn't usually take that long and from prior experience, I know that if she's running behind it's usually because she's seen a patient that was struggling and needed extra time that day. Raya has been that patient many times before and I'm just glad she's not anymore. Fortunately today she was happy while she waited. She played a little tic-tac-toe in the waiting room:

And then we headed back to the exam room for her measurements. She has officially outgrown the infant measuring board so she got to be measured like a big girl with the ruler against the wall. She was 36 inches tall (91.44 cm) which was a growth of about half an inch since her last visit in April. I actually expected her to have grown more than that. She seems tall lately. :)

Her weight was back up to 13.6kg (30 lbs), which was almost exactly what she weighed in April. She lost about 2 pounds between the end of April and the end of May and has finally managed to gain it back. I was worried because her oral calories have been hard to track and I think there have been a few days when I've underestimated. Thankfully she's grown in spite of my poor calorie counting skills and her inconsistent oral intake. Thank goodness for nutritionally complete formula, that's all I have to say.

After the MA took her measurements & wrote down her meds, we waited. and waited. and waited. This pretty much sums up how Raya spent her time while we waited:

For the first 5 minutes, she played with crayons on the exam table:

Then she jumped, climbed all over me, found "farties" in my purse, begged me for a "fen" (pen), got into the drawers, tried to stand on my lap to push buttons on the thermostat, sang songs about things that I couldn't decipher, sat on my lap and squirmed, asked me "wazz-at?" every time she heard a noise from outside the room, and meowed the WHOLE time. Being enclosed in a small room with her for that long was physically exhausting. I love her dearly but I swear she siphons the energy right out of me!

When the doctor came in, she suddenly got quiet and climbed up on my lap. Stinker! We chatted for a few minutes to get caught up on everything, review medical history & discuss concerns. While we chatted, Raya ate a roll of Smarties (aka farties) so she could show her doctor how good she's getting at eating, and of course she was very proud of Raya.

She still has a little heart murmur but it hasn't changed since her last visit. We talked about her skin problems (which we're pretty sure are due to her formula) and about the fact that the current formula's gastrointestinal benefits have outweighed the skin problems. And last but not least, we talked about her left leg & trunk weakness and how unbelievably active/energetic she is. She's a toddler to the extreme!

There have been a couple new ones that have popped up recently. One is the fact that she coughs and chokes a lot when she drinks water and ultra thin fluids. I discussed it with her feeding therapist yesterday and she and I agreed that because she's been drinking water for over a year now and has almost always used an open cup to drink out of, it is enough of a concern to investigate further and make sure she's not aspirating ultra thin liquids again. When I talked to her doctor I couldn't remember when she'd had her last MBS (modified barium swallow study). I didn't realize that it had been in May 2011. I thought it had been more recent so her doctor is going to order one. I think it's a good idea even though I will absolutely be surprised if anything turns up abnormal. Right now all she ever drinks is water but if she isn't swallowing safely, then when she does start drinking other liquids she's at a higher risk of aspirating and the complications that come from that.

Another concern that has been an issue for at least 2 months or more is that Raya almost always has small amounts of blood seeping out from around her G tube. Usually there's not much and it's not bright red. Today when I took her gauze off to change her tube (so she wouldn't have a grimy 3 month old leaky tube in when we went to the doctor) there was bright red blood and a little big of greenish goop on it. We don't think it's infected at the moment so the doctor said to give her Carafate for a week and see if that will help clear up whatever irritation is causing the bleeding. I think it's exactly what she needs, especially because we changed her tube today and that always causes a little irritation to the stoma anyway.

We're also going to make a change with her Prilosec. Right now, she's on an adult-sized dose and she's been on PPIs (proton pump inhibitors; shuts down some of the acid producing pumps in the stomach) since she was 1 month old. That is a VERY. LONG. TIME. It has been completely warranted, but it's time to see if she can tolerate a reduction in her dose. After a week of Carafate to take care of the irritation in/around her stoma, we're going to cut her dosage in half by cutting out the night dose and see how that goes. If she tolerates it well, then we might keep reducing it and see how she does off of it completely. Who knows, maybe once she's off of Prilosec we'll start tapering her other med.

Overall, things have moved in the right direction recently now that she's recovering from the rough time she had in May. Until today I had forgotten that she'd lost so much weight between April and May. When we were talking about her being back up to her April weight, I remembered that she'd been sick off & on in May, which meant she wasn't on full-strength formula for a few days, and she quit eating for a couple weeks. Once again, I am feeling much better about our decision to completely skip the nursery class at church and wait until she's 3 and old enough to go to the regular classes that don't involve germy toys. I've flip-flopped back and forth for months now about when to start taking her to church and seeing today that it took her 3 months to get back to zero net weight gain makes me feel like we've made the right decision.

Calorie-wise we're keeping things the same and hopefully she'll just continue to increase her oral calorie intake so we can decrease her tube feeds. We're not doing a weight check in a month like we usually do so we're going to see her again in 2 months instead of 3 just to make sure the med changes are going well and her weight is still going up. Overall it was a good visit and we're moving in the right direction. Heck, any visit that Raya gets through without crying at all is a great visit. :) Every time we see GI it just reminds me how blessed we are to have such a great doctor to work with. A good doctor makes all the difference.

Monday, July 23, 2012

A momentous occasion

Raya ate an entire 6 oz jar of baby food today for the first time ever and she did it in one sitting. It has been marked on the calendar. I never imagined that I'd ever be spoon feeding my 2 year, 8 month old child baby food and be happy about it but it is what it is. :) The only reward I offered her was a bite of an ice cube or a drink of water after 3 bites of food. There was some gagging towards the end but I don't believe that it was theatrical in nature at all. I can fully relate to feeling like gagging when you're trying to swallow something you really don't want to swallow anymore and I think she'd had enough at that point. She finished it though and was very happy when I gave her the last chunk of ice and her cup of water. Hooray for Beech Nut pears and blueberries!

Saturday, July 21, 2012

Lady the Snugglekitty

Meet Lady the Snugglekitty:

For a few weeks now she has spent most of her time every day in character as a kitty. If you ask her a question, she meows. If you tell her to do something, she meows. If you talk to her, look at her, hug her, put food in front of her, brush her hair, or pretty much have any form of interaction with her, she meows. (More interesting when you consider that she's never seen a cat close up in real life.) She even meows at her therapists. They don't like it and keep telling me we need to crack down on it so she'll stop. (it's not something we encourage, I promise) Sometimes the kitty act is endearing. Most of the time, not so much.

Since yesterday, anytime I say her name or call her by any of her usual nicknames, she'll say, "No! Lady!" So I've been playing along and calling her Lady. Tonight we went to her friend Whitney's birthday party and it wore her out so she was nice and snuggly when I was getting her ready for bed. It was lovely since she started out the day having a 20 minute meltdown about a box of Wheat Thins:

I was holding her and I said to her, "Time for bed, my little snugglebunny!" She lifted her head off of my shoulder and said, "No! No bunny, kitty! And so I laid her in her bed and said, "Good night, Lady the Snugglekitty!" And she grinned fromm ear to ear and said, "Nah-night, Mommy." I'll worry about getting her past the kitty complex later. Right now I just want to squeeze her and kiss her little cheeks. :)

Thursday, July 19, 2012

Ripped from the headlines: Why Awareness is SO Important!

{Alternate title: Late night musings of an angry tubie momma who spent 2 hours working on this blog post only to have Blogger and/or an interruption in internet connectivity POOF it away so she had to start all over again}

{Alert: This will be wildly opinionated so feel free to have your own opinions but be respectful if you choose to comment on mine, please and thank you.}

Feeding tubes don't make headline news very often so when they do, those of us in the feeding tube community take notice. Especially when the story evokes fear and anger in our hearts.

A couple months ago, I wrote a scathing blog post about the story that ran on the Kathie Lee & Hoda hour about the use of NG tubes for the "K-E Diet" aimed at helping brides shed a few quick pounds before dress shopping and their weddings. This story was met with mixed opinions even among members of the feeding tube community. There was a question of ethics in the trivial use of a medical device, fear of what impact the story may have on the public image of tube feeding, and the flippant manner in which Kathie Lee and Hoda talked about feeding tubes. The story that was brought to my attention today, however, is without question outrageous and unacceptable.

Melinda Deaton was preparing to travel from Dallas, TX to Minneapolis, MN to undergo medical treatment at the Mayo Clinic. In a story reported by Omar Villafranco of NBC 4 New York, Deaton had made this trip many times recently with no trouble at airport security, but this time things did not go as usual. Due to complications of gastric bypass surgery, Deaton has a PEG-style G tube similar to this:
Photo Source:

The balloon at the bottom retains the tube in the stomach and the round plastic disc keeps it in place from the outside. As Deaton passed through the security checkpoint, TSA agents noticed something hanging from her stomach and pulled her aside for a pat-down. Several of the articles stated that Deaton was then selected for a "strip-search" in which the TSA agents visually inspected her G tube. Deaton reported that upon seeing the tube and surrounding granulation tissue, the agents reacted with disgust. Then they proceeded to handle the tube at which time they decided that her stoma needed to be swabbed with chemicals to test for bomb making materials. SWABBED WITH CHEMICALS. HER STOMA. WITH GRANULATION TISSUE. TO TEST FOR BOMB MAKING MATERIALS. {Because terrorists are always hiding bomb making materials in painful holes in their stomachs, right? Idiots. Moving on...}

After handling her tube and swabbing her stoma, they confiscated the pre-packaged applesauce and pudding she was attempting to bring on the plane with her. Because of her medical conditions, she is on a restricted diet which requires soft foods. Her food was thrown into a trash can and later retrieved by a supervisor who took it to a location out of her sight and performed some kind of testing on it before returning it to her.

{Deep cleansing breaths...}

When I first heard about this story today, I was livid. I felt sick for this woman and what she was subjected to in the supposed name of public safety and antiterrorism. There are SO many wrongs here.

(If you want to see the news reports that I got my information from, they are here, here and here. Watch the videos too.)

First and foremost, if everything happened the way it was reported in the numerous accounts, the TSA agents involved violated several of the TSA's own policies which are readily available on their website. I'm rather well versed in these policies because I researched them thoroughly before flying with Raya last month. Second, there is an issue of common decency here. By her account, this person was not treated with respect, no consideration was taken for the fact that she had what was clearly a medical device STICKING OUT OF HER STOMACH, and her health was potentially jeopardized by the misconduct of the TSA agents who screened her.

Here are some of the statements from their website that apply in this situation:
1. "If you are wearing an exterior medical device and are uncomfortable with going through the metal detector or be handwanded, you may request a pat-down inspection and visual inspection of your device instead." Ms. Deaton WAS comfortable going through the metal detector and did not request a pat-down or strip-search.

2. IF in fact, there was some valid reason for conduction a pat-down/strip-search, then THIS statement applies: "Advise the Security Officer if you have an ostomy or urine bag. You will not be required to expose these devices for inspection." While I do realize that this statement is likely referring to colostomy bags, a G tube is technically an ostomy as well. GastrOSTOMY. Therefore, she should not have been required to remove her shirt and have her tube inspected, visually or otherwise. And really. WHY would anybody who is not a healthcare provider or caregiver even WANT to touch a stranger's G tube?!? REALLY. I remember being afraid of that the first time I flew with Raya. She had a GJ tube and I was extremely protective of it because I didn't want to risk having it come out, especially during travel. She was continuously fed into the J port and had a bottle or bag of bile hanging from the G port which ranged in color from fluorescent yellow to dark green and smelled like a combination of vomit and poop. As we approached the security checkpoint, in my head I was just DARING them to insist on inspecting the nasty thing. It would have served them right, but they didn't. They were actually quite nice, but I digress...

3. Since they DID decide that a pat-down/strip-search was warranted, special care should have been taken to not irritate or disturb a sensitive area such as a stoma with granulation tissue. If you're not familiar with granulation tissue, it's the bain of every tubie's existence. Granulation tissue forms as the body attempts to heal the stoma. It is delicate, sensitive, bleeds easily, grows rapidly, and is extremely painful (or so I've been told). On the TSA's website, it states, "Security Officers should be sensitive to your condition by avoiding accidentally bumping or hitting the handwand against your body where a sensitive area is located. They should also use light pressure and contact when inspecting a sensitive area or painful area." Pardon me for asking, but how does being sensitive to a painful area include handling a tube attached to a woman's abdomen and then swabbing painful, delicate granulation tissue with presumably non-sterile swabs containing mystery chemicals?? (Yes, a TSA representative confirmed that chemicals were involved but wouldn't release what type so Ms. Deaton's granulation tissue has been exposed to mystery chemicals.) Even without granulation tissue, some people's G tube sites are very sensitive and should not be bothered except to connect and disconnect feeds, clean, and give medications.

Because granulation tissue IS delicate and bleeds easily, it is prone to infection. Infections at the tube site can be very difficult to clear up, even in healthy individuals. Ms. Deaton's husband stated that as part of his wife's condition, she has a weakened immune system. For her, a simple G tube infection could lead to serious complications and even death. Her tube site never should have been touched. (*Side note: For people traveling with TPN requiring an accessed port or central line, here are the TSA's policies on inspecting dressings. They should also NEVER be touched! YOU know that, but the general public may not understand the gravity of that.)

Which leads me to another point. Have you ever seen a TSA agent remove their gloves and put on new ones? Me either. (except once when I asked them to) That's because they're wearing the gloves to protect them from whatever they're touching. Not to protect whatever they're touching from whatever else they've been touching. Unless Ms. Deaton specifically asked the agents to put on clean gloves prior to handling her G tube (which they were not supposed to do), they potentially exposed her to goodness knows what kinds of bacteria and germs from everything else they touched with those gloves. None of the articles mentioned whether or not agents wore clean gloves, but they don't routinely change their gloves in between passengers or else they'd go through thousands of gloves per day.

4. According to Ms. Deaton, the TSA agents who performed her search were anything but professional about it. In an interview with a Dallas Fort Worth news station, Deaton said, "When I pulled my shirt out and they catch a glimpse of it, they both go, 'Ugh!'" TSA's website states, "You can advise the Security Officer when you have a special situation such as accompanying loved one's remains, accompanying a terminally ill parent/family member, en route to a medical facility for an operation, medical procedure, or treatment. Security Officers have been trained to offer their support and assist you during these difficult times." Ms. Deaton WAS en route to a medical facility for treatment and by the time these agents decided to subject her to a pat-down/strip-search, it was quite evident that she had a "special situation". IF these agents had actually been "trained to offer their support and assist during these difficult times," then they should have responded respectfully to seeing a medical device. I realize that G tubes are not pleasant to look at, especially when they're surrounded by angry-looking granulation tissue, but there's no excuse for reacting that way. This woman was alone in a semi-private screening area with two TSA agents who required her to lift and/or remove her shirt and they add to her humiliation by reacting with disgust upon seeing her bare stomach. Absolutely unacceptable.

5. The food is a sticky situation. TSA's liquids policy states:
3.4 ounce (100ml) bottle or less (by volume) ; 1 quart-sized, clear, plastic, zip-top bag; 1 bag per passenger placed in screening bin. One-quart bag per person limits the total liquid volume each traveler can bring. 3.4 ounce (100ml) container size is a security measure.
 The containers of applesauce and pudding that she had in her carry-on luggage were about 4 ounces each. In most cases, these foods would be considered over the limit of what's acceptable under the 3-1-1 liquids policy. HOWEVER. There's a loophole. Here's what another section of the liquids policy states:
To ensure the health and welfare of certain air travelers, in the absence of suspicious activity or items, greater than 3.4 ounce (100ml) of the following liquids, gels and aerosols are permitted through the security checkpoint in reasonable quantities for the duration of your itinerary (all exceptions must be presented to the security officer in front of the checkpoint):
  • Liquids including water, juice, or liquid nutrition or gels for passengers with a disability or medical condition;
  • Frozen items are allowed as long as they are frozen solid when presented for screening. If frozen items are partially melted, slushy, or have any liquid at the bottom of the container, they must meet 3-1-1 requirements.
Melinda Deaton has a medical condition that requires a soft foods diet consisting of things like applesauce and pudding. These are food items that may not be readily available to her on the airplane or in the airports. Due to her condition, she likely needs to adhere to a consistent meal schedule in order to avoid becoming ill. This "loophole" should have protected her from having her medically necessary diet thrown in the trash. (I included the part about frozen items because things like applesauce and pudding could be easily frozen.) Ultimately a supervisor removed her food from the garbage can where the original agents put it and allowed her to have it, but only after taking it to another area out of Ms. Deaton's sight and testing it. Would YOU want to eat your food after it had been thrown in the trash can and then subjected to some kind of testing that you were not allowed to observe? Should not have happened.

Okay. I understand. I get that in order to protect all of us, certain security measures must be taken and procedures must be followed. Adequate security measures and common sense are not mutually exclusive. We can have adequate security without badgering and endangering the health of passengers with medical conditions. My heart really goes out to Melinda Deaton. What happened to her was unacceptable and I think there is much to be learned from this situation, both for those traveling with medical devices and for the TSA.

Here are some things to keep in mind when traveling:
1. If you are traveling with a tubie or if you are a tubie that will be traveling, it is VITAL that you research policies and understand your rights and responsibilities. I tend to be overly cautious in certain situations so in preparation for my recent travels with Raya, I looked up every TSA and airline policy that was applicable to the items we were traveling with, printed hard copies and highlighted everything that pertained to us. I put those copies in a plastic bag and tucked them into the soft cooler that held her medications, Cole's EpiPen, bottles of sterile water, and a baggie of syringes. The reason I put them in with the medical supplies they were in reference to is because of a story I saw on the news about a woman who was detained because she was flying with a large quantity of breastmilk but no baby. She had printed out the TSA's policy on breastmilk but when the agents detained her, they would not allow her to retrieve the printed policy from her carry-on bag to show it to them. After seeing that, I thought it seemed like a good idea to have the policies in a place where they couldn't NOT be seen by TSA agents if necessary. Know the policies that apply to you, print them, and have them readily accessible when you go through security and not buried in your carry-on luggage. If you have them, you won't need them but if you don't, you will.

2. Melinda Deaton was wearing a medic-alert bracelet that contained a USB drive with statements from her doctors in regards to what she would be traveling with, why she was traveling, etc. This was a very smart thing to do from an emergency standpoint, however none of that information was ever accessed by TSA agents, so in this case it is better to have a printed hard copy of any letters or statements by your medical providers. Keep them with your printed TSA policies so they will be readily accessible. This is especially important in a situation like Melinda's where the foods she was carrying on are not typically identified as medical food but were required as a part of her medically necessary diet. If this was Raya and I needed to bring a container of her beloved plain Greek yogurt because that's the only thing she wants to eat, I would get a letter from her doctor, highlight the part about the yogurt, and put a copy of it in the baggie WITH the container of yogurt. (that's how overly prepared I like to be.) I got a letter from our doctor the first time I flew with Raya. Nobody ever asked to see it but just knowing that I had it gave me peace of mind.

3. The TSA allows people who need assistance through security checkpoints to have someone come with them. When I flew home with the kids last month, my mom was able to get a gate pass so that she could help me get my crew & all our gear through the security checkpoint. TSA policy states: "If you require a companion or assistant to accompany you through the security checkpoint to reach your gate speak with your airline representative about obtaining a gate pass for your companion before entering the security checkpoint." I would venture to guess that Melinda would have felt much better if someone had been with her to help her stand up for her rights. Maybe the whole situation would have played out differently if she hadn't been traveling alone. If you are a tubie and will be traveling, PLEASE KNOW that you CAN have someone accompany you through the security checkpoint by explaining your needs to the ticketing agent and asking for a gate pass. If you do bring someone to assist you and end up being selected for additional inspections, "Your companion, assistant, or family member may accompany you and assist you during a private or public screening. After providing this assistance, the companion, assistant, or family member will need to be rescreened." Well, really this whole section bears quoting:

"If a personal search is required you may choose to remain in the public area or go to a private area for your screening. If you refuse either option you will not be able to fly. You should be offered a private screening before the beginning of a pat-down inspection if the pat-down will require the lifting of clothing and/or display of a covered medical device.
You should be offered a disposable paper drape for additional privacy before the beginning of a pat-down.
You may request a private area for your personal search at any time during the screening process. Your companion, assistant, or family member may accompany you and assist you during a private or public screening. After providing this assistance, the companion, assistant, or family member will need to be rescreened."
In reading the different accounts of Melinda's story, it appears that some of these procedures were not followed. I don't see anything anywhere about the policy on "strip-searches." None of the articles went into detail about what anyone meant by the term "strip-search" so it's up for interpretation but I just can't imagine why they would have needed her to remove any of her clothing.

If you are a TSA agent, BE RESPECTFUL. Be patient and polite. TRY TO UNDERSTAND that having medical devices, especially things like G tubes, trachs, and colostomy bags can be embarrassing for people who aren't used to exposing them to strangers and be considerate. They are difficult to live with and scary to travel with. USE COMMON SENSE. Put on clean gloves if you're doing a pat-down on someone with a medical condition. Don't get on a power trip just because you have the authority to prevent people from getting on airplanes. And for heaven's sake, PLEASE don't touch anyone's medical devices!! (Seriously, don't touch. You don't really want to anyway, you know.)

The key to traveling with someone who is tube fed or has any other type of medical device or condition is PREPARATION. The more research you have done and the more prepared you are, the less likely you are to have problems arise. ARRIVE EARLY. Be patient and polite. Don't go into it expecting trouble. Be prepared to explain your conditions and what you're traveling with. Don't be belligerent or cop an attitude with the TSA agents; I think most of them don't get paid enough to compensate for some of the things they have to put up with. Only carry on what you need for the duration of your travel time and what can't be quickly replaced if your luggage is lost (i.e. feeding pump, specialized formula, meds, etc.). Expect to have to unpack everything and open cans or cartons of ready-to-feed formula (have empty bottles or a pump bag to pour it into in case you have to open it). Don't be surprised if you're selected for a pat-down. BE RESPECTFUL. And above all, please don't allow stories like what happened to Ms. Deaton to scare you into not traveling. Crappy things happen to everybody at some point so you might as well just do what you want to do. Live your life and embrace the challenge. Do the best you can to prepare ahead, expect the unexpected, and don't let fear prevent you from experiencing new things.

{I have to say that although I've only flown 4 times with Raya, the TSA agents that have conducted our security screenings have for the most part been fabulous and treated us professionally. In all but one case, they never even asked to see Raya's G tube. I don't think any of them wanted to make trouble for us and we certainly didn't want to make trouble for them. We did have one formula spillage incident where the TSA agent didn't put the lids on tight, and we had one close call where I thought we were going to have to open all of our unopened cartons of formula, but overall we have had good experiences going through security.}

This story is just another illustration of the importance of raising awareness of tube feeding. If those TSA screeners had a friend or relative with a G tube, maybe they would have been more understanding of Melinda Deaton. If they had seen a presentation in their elementary school as kids or seen stories on their local news during Feeding Tube Awareness Week of how G tubes saved lives of small children, maybe they would have recognized the device and treated her differently. {if their mommas had raised them to be polite, they wouldn't have been so disrespectful when they saw her tube and acted all disgusted by it...} All I'm saying is that as the general public becomes more familiar with feeding tubes and other medical devices, the less Melinda Deaton stories there will be. If we want greater understanding and acceptance, it is our responsibility to educate those around us.

Tuesday, July 17, 2012

Mess Maker

We had a messy weekend. First there was the unplugged feed which fed about 8 ounces to her bed and also let whatever was in her stomach freely flow out. (double layer waterproof mattress pads? yes please.)

Then there was the twisted up shirt incident:
Which wasn't really a mess but it was funny. It wasn't like that when I put her in bed.

Then there was the MASSIVE rainstorm:
(Just for the record, I was the passenger, not the driver.)
That was one mess we didn't mind. Rain like that only happens a couple times a year so we get pretty excited when big thunderstorms roll in.
Then there was the really big formula mess. Bigger than the aforementioned bed feeding mess. Sunday evening I was working on some things upstairs and when I came down, Raya started talking to me and repeating the same thing over and over. I couldn't figure out what she was saying until she had repeated herself about 20 times and then finally I realized she was saying, "Formula fell out." I thought she was saying that the plastic pump bag had fallen out of the backpack, which happens sometimes. I told her to bring it in the kitchen and I'd fix it.
When she started walking towards me, I realized that what she meant to say was, "Mommy, the pump bag that we're using today turned out to be defective and now there are 3 holes through which formula is leaking profusely into my backpack and is now starting to drip through the seams into a giant puddle on the floor." And she wasn't kidding.

We kind of lost all hope of knowing how much she'd been fed that day. It was a mess. Her new backpack has been properly christened though. It took me a little bit to figure out where the formula was coming from but here's what I found:
Upon further investigation, I also found this:
This started out as one little slit but when I touched it to see how big it was, it turned into 2 holes all the way through the bag. We've had defective bags before but never with holes like this. We've had a couple where the plastic was stuck to itself and when I peeled it off, the bag tore. Most of the defective ones we've had were the kind where there's tiny pinholes in the bags and you don't know they're there until you squeeze the bag to prime the air out of the line and formula sprays you in the face. We've had lots of those. This was a new one for us but after checking with some other tubie families, apparently it's a pretty common defect.

Monday's mess was more of a figurative mess. Rowdy, bouncing off the walls, meowing instead of using words, climbing on everything, spinning, jumping, etc. In the evening we went to the library. We stopped on the way and got a pizza for dinner and since it was an unseasonably cool 100 degrees outside, we ate at a picnic table outside the library. Raya was not included in the "we". She was mad that I wouldn't give her a whole piece of pizza so she refused to have a taste of it at all.

After we had made the pizza disappear, we headed inside to the air conditioning. Usually we have Raya in the stroller but this time we didn't. Next week we will be putting her in the stroller. She jumped instead of walking, took a wild ride on the rocking chairs, fought with Kaida over chairs, ran, talked loudly, cried, had a poopy diaper, and wouldn't stop planking on the kiddie bookshelves.
Planking is her new favorite activity. She does it everywhere we go that she can find a surface that's the right height to lay on her belly on. She was responsible for the books on the floor too. She did have a few fleeting moments of sitting on a chair looking at books but mostly she was sitting on the chair picking at the loose piece of tape on the book.

And then we all took a moment to watch the little jackrabbit running around under the tree outside the window.
When it was about 20 minutes until bedtime, we headed home just in time for pajamas and family prayers and sent them all off to bed.
She had a pretty good OT session today. We used the SPIO vest again with pretty good results. Not quite as drastic as last time but she was a lot more wound up from the beginning this time and I think that had something to do with it. It still made a big difference though. Her therapist is employing a lot more tough love these days because Raya is in her "self-regulating" mode and has a lot more opinion about what she does and for how long. Today she decided to push Raya's limits and see how long she could get her to sustain the same activity. She let Raya choose between the swing and the scooterboard and she picked the scooterboard. She ended up staying with it for almost 15 minutes. We had to get her attention a few times and remind her to keep going but she definitely did pretty well. She had the SPIO on the whole time and it makes a difference. It's easier for her to stay on the scooterboard when she's wearing it. It seems to help her have a better sense of where her body is in space.

After OT we came home and had FT. Things have been going well this week with being able to get her to eat baby food with "incentives" like candy, sour cream, and ice cubes. Today I wanted to test her limits too and see if we could get her to eat baby food vegetables. I felt a little bad doing that to her but she needed it. I put some seasoning salt in it so it would have a little flavor but really, how much can pureed mixed vegetables be helped. She did end up eating the whole thing but it turned into an exercise for me where I had to ignore and not react to all of the gagging and yuck faces she was making. We also pushed her beverage limits by making her drink apple juice. She really has never been interested in drinking anything but water and today was no exception. Her therapist hadn't brought the M&Ms this time so Raya's incentives were water and taking licks of a Jolly Rancher. She had to take 3 bites of food and 3 sips of juice in order to earn her water and her licks of the Jolly Rancher. When all was said & done, her hands were covered in Jolly Rancher stickiness and her shirt was covered in mixed vegetable puree but she had eaten a whole 4oz container of it and had drank about 2 ounces of apple juice. She chased it all down with a total of about 6 ounces of water, so all in all it was a very good feeding therapy day.

None of the previously mentioned messes measured up to the big disgusting poop mess today. (Stop here if you don't want to read about poop.) In my 9.4 years of being a parent, I can honestly say that I've never seen poop exit a diaper in quite the fashion that hers did this afternoon. I was upstairs working on editing a photo session and Ashtyn came up and told me that Raya had a poopy diaper and that a piece of it was on the floor in the play area. Gross. However, upon inspection, it was not a piece. It was a giant drip. That had been stepped in. She was chattering away and playing with toys but she wouldn't move because her bum hurt. She was wearing a big poofy dress-up costume and once I had peeled that off of her (and sent it to the washer to take care of the...collateral damage) I realized that there was poop running down the inside of both of her legs. I removed her shorts, which were soaked, and laid her down on a plastic bag to clean up. Somehow it had oozed out the inside of both legs. She'd just had a poopy diaper about an hour before that and she never has more than one poopy diaper in a day. I suppose it could have been because of the baby food she ate but she'd only eaten it an hour before so I doubt it. I guess we'll see what tomorrow brings.

Friday, July 13, 2012

Cooling vest and more "Farties"

We live in a very very hot place. Very hot. Triple digits for 3 or 4 months in a row. Raya doesn't seem to handle the heat like the rest of us can. She sweats nonstop all the time, even in air conditioning. I know I get crabby and tired when I'm overheated so I started thinking that heat could be at least part of the cause for Raya's recent crabbiness. I had seen links on a couple of special needs-related facebook pages for cooling vests and decided to make her one rather than shell out $$ for one.

I am impatient when it comes to sewing. And many other areas of my life, but let's not get into that right now. I've made a LOT of things since I got my sewing machine 8 years ago, and I think I could probably count on one hand the number of times I've used a pattern. I like to wing it and a lot of the time it works out in my favor. :) For Raya's vest, I decided to trace a vest I had made for Cole's pirate costume a couple years ago that was about the right size.

The hardest thing to decide on was what fabric to use. I decided on some corduroy and broadcloth that I had left over from when I made a diaper bag. Because she's small, I put 2 small pockets on each side on the front and 2 larger pockets on the back. Here's how it turned out:


Since it was a prototype, I decided to keep it simple and just cut openings for the ice packs and then sewed a flap over them. (If I'd had more fabric, I would have made the flaps bigger and put velcro or snaps on them.)

For ice packs, I wanted something cold but not frozen solid so I used 1 part rubbing alcohol and 2 or 3 parts water in plastic baggies. They worked pretty well and were the perfect size for the back pockets. The first time I put it on her, she just wanted to take it off and play with the ice packs. I should have guessed. :) Yesterday it was really hot and I asked her if she wanted to wear heer vest to cool off. That time she liked it and wore it for 15-20 minutes. She didn't sweat nearly as much while she had it on and it did seem to perk her up a bit.

I definitely need to make another one. Even though it seems wrong to make a toddler wear a flannel vest in the summer, I'm going to use flannel to line the next one so it will insulate her back more. Maybe even a double layer. I will also need to make it a teensy bit bigger because it won't close. Oops. :)

It's a good start anyway. Hopefully the next one will turn out better now that I know more of what I want it to be like. In other news, the "Farties" didn't do the trick today like they did yesterday. We sat down to have some food and she didn't want anything but ice. I gave her a Smartie and she just stared at it with a frown on her face. Eventually she picked it up and ate it but it took her about 12 bites.
So what am I supposed to do when she has no motivation to eat the motivator?? Fortunately for me (and her) she REEEEALLLLLY wanted an ice cube, so that became the motivator. I love it when she takes a bite out of an ice cube and says, "Yummy!"

The deal was three bites of baby food pears and blueberries for one bite of an ice cube. She suddenly prefers for me to feed her whatever I'm bribing her to eat and I'll admit that I love feeding her. We're making up for lost time, I guess. Once in a while she would say, "Have Fartie?" So I tried to keep a straight face while I handed one over. Once she had eaten as much as she could take, I let her finish the ice cube and eat a couple more Smarties and then she wanted sour cream. I put it in the bowl and gave her the spoon and she started to scoop up a bite. Then she held it up to me and mumbled something I couldn't understand and frowned at me.
It took some doing but I realized that she was mad at me for putting the sour cream in the same bowl as the other food. She didn't want them mixed. I can't blame her, I don't like for my food to touch either. Later on the big kids went to karate and we snuggled (sort of) on the couch. I read my developmental psychology book and she watched Backyardigans and Dinosaur Train.

She's still meowing more than talking this week but sometimes when she pretends to be a kitty, she climbs up on my lap and meows at me and I pet her head and pretend she's my kitty and we're both happy. :)

Thursday, July 12, 2012


I'll admit it. Sometimes I just plain hate feeding therapy. I love our therapist. She's very good at what she does and we are very lucky and grateful to have her. Raya has made SO much progress since we started working with her and my feelings have nothing to do with our therapist, but I hate feeding therapy. I'm not even entirely sure why, but it could have something to do with the feelings of resentment and inadequacy I feel when I watch my 2 1/2 year old willingly open her mouth for her therapist and take a bite of something that she's never been willing to take from me. Or having to be taught how to feed my own child, who is my 4th child. Or the fact that it reminds me that my motherly love for her wasn't enough to make her be able to eat in the first place. Or the fact that we even NEED feeding therapy. Yeah, that might have something to do with it.

For the last 2 weeks Raya has been fighting this head cold and junky cough that thankfully she's finally over now. Since she first got sick, she's refused almost every food I've offered her. She's even refused sour cream. All she's wanted to eat is ice cubes, a little bit of sour cream here and there, and an occasional cracker. I've tried to give her other things but she wouldn't go beyond a small nibble of the few things she actually accepted from me. Since she was sick and that's how it always is when she gets sick, I didn't force the issue. Not worth it.

Tuesday, her feeding therapist came for the first time in about a month due to vacations & canceling because Raya was sick last week. I didn't expect much out of Raya. I told her therapist about how great she did with trying new things when we were in Idaho but that a lot of it didn't agree with her stomach. I told her how Raya ate 4 whole french fries when we went out for Donny's birthday a few weeks ago, which she had NEVER done before. Then I told her how Raya had been sick and stopped eating anything but ice.

(This is the part that made me want to say that I hate feeding therapy.)
After we had caught up on the last month, I got out some baby food puree and a slice of a baguette for Raya. To make a long aggravating story short, all her therapist had to do was give her mini M&Ms and the little stink ate about 1/4 cup of the baby food and half of the piece of bread. She made yuck faces at first but she really likes those little M&Ms so she ate it anyway. Swallowed it down like a champ. Chewed up the nice neat bites of bread and swallowed those too. Why was this aggravating for me? Because I had tried to get her to eat the exact same baby food the day before. It tasted good, I tried it. It was one of those fancy new pouch baby foods. (I had a coupon so it was free.:) She refused. She clamped her mouth shut, pushed my hand away, knocked it off the spoon, made a mess with the little pouch, etc.

I know I looked annoyed. I should have been excited to see how much she ate and how well she ate it, but I wasn't. It actually made me angry. It was just another straw on the camel's back in a very frustrating and difficult week for me. I was annoyed that Raya was eating so well just because she knew she'd get candy. Her therapist asked me if I'd tried rewarding her for taking bites while we're sitting down for dinner. Of COURSE I haven't been doing that. It goes against EVERY fiber of my being to bribe my child to eat by giving her candy in between bites of food so it had never even occurred to me to try it since our last FT visit. I'll reward a kid for going potty in the toilet, but to reward her with candy for eating a bite of something? That just feels wrong in every way.

I get her point though. This is a SIGNIFICANT developmental delay. Raya has no innate motivation to eat and hunger signals (if she has any) mean relatively nothing to her. Eating is hard work for her. She doesn't derive enough pleasure from the sensation of being full or the flavor or texture of food to make her feel like it's worth the effort. Because she lacks that innate instinctual drive to eat, she has to be given external motivators. Up until her therapist brought M&Ms last month, there really wasn't anything that motivated her. We had tried treats before and she was indifferent to them. For whatever reason though, she has decided that she will work for candy and I do understand that because it's working, we need to go with it. Which leads me to the title of this post: Farties.

When we were in Idaho, Raya discovered that she likes Smarties. She can't seem to make the "sm" sound though, and she replaces it with a big fat "F" sound. Farties. I giggle immaturely to myself every time she says, "I want Farties!" Or, "Can I have Farties?" Crass as it may be, finding amusement in things like that has been a great coping mechanism for me over the past 2 1/2 years. There are so many times when I've had to choose between laughing and crying and I'd rather laugh so I do, even if it's because my daughter uses the letter F instead of the letter S. I don't have any mini M&Ms but I have a bag of Farties in the cupboard, so I decided to try and duplicate what we did at feeding therapy with her this afternoon.

Raya wanted sour cream so I told her she could have a bite of sour cream if she took a bite of baby food. (I had another pouch of a baby food puree that I got for free. This one had a princess on the front but it was not very tasty.) She was not excited about my offer, so I told her she could have a Smartie if she ate a bite of it. She ate it and then said, "Have Fartie?" and held out her hand. Once she had eaten it, I told her that if she ate another bite, she could have a bite of sour cream. She reluctantly ate another bite while making a yuck face, and then I gave her a bite of sour cream.
(body language speaks louder than words, eh? :)
I continued to make her offers of bites of baby food in exchange for a Smartie or a bite of sour cream and she continued to accept. In between, she'd say, "I want 2 Farties." or "I want more Farties." or "Yay! Farties!" Go ahead and try to keep a straight face while you read that. Immature as it may be, it's downright funny when it's coming out of a 2 year old who is talking about candy and doesn't understand why that's funny.
I used to think that I didn't care what it took to get Raya to eat. I'm still very happy with the amazing progress she's made in the last year, and I'm so proud of her for what she's overcome. However, when I thought that I didn't care what it would take to get her to eat, I didn't realize it was going to mean bribing her with candy. I don't like it. It doesn't feel right. But, like I've said before, the rule book went out the window a long time ago with this girl. Just like we've been doing all along, we'll keep doing what we have to do to get her through to the next phase. I've had to re-adopt my little mantra that got me through the crazy hospital and testing phase: It won't be like this forever. (And she'd better listen to that because heck if I'm going to keep giving her candy to eat good food for very long!!)

SPIO Compression Vest for Sensory Processing Disorder

This week is Circus Week at OT, so Raya got to dress up as a butterfly and play carnival games. She was irresistably cute with her little butterfly wings, tutu skirt and pigtails. Her therapist wanted to try out a SPIO compression vest on her again today so we decided to make an experiment out of it. On Tuesday when Donny took her to therapy, they put it on at the beginning of the therapy session and took it off towards the end. They thought there was a difference but it was hard to tell because it could have also been fatigue from working hard during her session. This time, we decided to leave it off for the first part of therapy and then put it on and see if anything changed.

WHOA...back up...what the heck is a SPIO?? According to the SPIO website, "Stabilizing Pressure Input Orthosis (SPIO™) assists patients with stability and proprioceptive deficits through deep pressure. Since deep pressure appears to be an important somatic input for balance and movement control, SPIO is designed to provide and enhance deep pressure sensory input around and toward the midline of the body to improve dynamic stability and postural activation."
SPIO compression garments are made out of Lycra and come in a variety of colors and products. They have vests, long and short sleeved shirts, pants, and shorts. According to the website, they're recommended for kids with sensory processing disorder, cerebral palsy, hypotonia, hypertonia, Rett syndrome, autism, pervasive developmental disorders, brachial plexus injuries, Down syndrome & other syndromes, and other developmental delays. There are some contraindications, such as neurological impairments that would affect the child's ability to regulate body temperature and heart or lung defects that could be affected by the pressure of the garment compressing the chest cavity but from what I've been told, these things are evaluated on a case-by-case basis.

So remember how Raya is a very sensory-seeking kid who is easily distracted by anything and everything, lacks core trunk stability, etc.? The SPIO vest provides constant deep pressure input and that compression allows her to focus and helps engage her core muscles to give her more trunk control. I'll explain more about what her specific benefits have been later.

For the first few minutes of therapy, she was on the upside down "T" swing. After a minute or two, I noticed that she had a very serious look on her face. There was a lot going on in the room and she was really interested in what the other kids were doing. I don't know if it's because she was looking around so much or what but I'm pretty sure that the serious face was really a "if you don't get me off this thing right now, I'm gonna puke!" face. So I told her therapist and she stopped the swing and Raya jumped off and ran to hug my legs. She does that ALL.THE.TIME when we're at therapy now. And she's on a kitty-cat kick this week and won't use words at therapy. She just meows. Sounds cute but rather irritating after a few days.

After the swing, she moved on to the inflatable jumpy thing. She LOVES LOVES LOVES jumping. We let her jump for a few minutes before putting the SPIO on her. As usual, she was pretty well controlled for the first minute or so. After that, her core muscles start to fatigue and she gets floppy. She bounces all over the place, falls down a lot (sometimes on purpose, sometimes not) and she stops a lot. Enter SPIO. It's supposed to be worn in place of a shirt and without pants under it but we left her pants on anyway since we were only using it for a few minutes. It's actually rather cute on her, in my personal and completely biased opinion. :)
See what I mean? Completely and totally irresistable.

As soon as we put the SPIO vest on her, we could see an immediate difference. She instantly had more trunk control and her jumping was more controlled and calculated. Instead of just flying all over the mat in whatever direction her body happened to bounce, she was able to stay in the center of the mat. She decided that she wanted to jump to me, so she jumped to me.

She was very much in character as a butterfly too, hence the flapping arms and blurry picture. :) It was very interesting to see how much things changed instantly once we put the SPIO vest on.

After the jumping, it was time to play the OT version of a ring toss. Instead of tossing the rings, she wore them on her head, scooted across the room on the scooterboard and put them over the pegs. Everything is cuter with butterfly wings on. There were three big differences that I saw with the scooterboard activity.
1. She seemed to be more aware of her position on the scooterboard and only fell off of it once, where normally she slides off several times in one OT session.
2. Her posture looked AMAZING. She sat up SO straight and tall, which again illustrates how the SPIO helps to engage the core muscles and helps with trunk control.
3. She was much more focused. She did still stop a couple of times to look at other people who were walking past her or working in a nearby area but all it took was her therapist saying her name once or twice to remind her what she was doing and get her moving again. Such a far cry from the girl we had a week ago who spent 2 minutes picking lint out of the carpet while we tried uselessly to get her attention and remind her what she was supposed to be doing.

Okay, so look how tall she looks in this picture:
EEK! My baby is a big girl!!
Isn't that crazy?? She's sitting up so straight. I was impressed.

When we finished with the scooter board, she got to play the milk bottle game where you throw something at stacked up milk bottles and try to knock them down. (circus week, remember? :) This was pretty amazing with the SPIO too. Her therapist had her sit straddling a big bolster. She would hold a bean bag out to her and Raya had to reach across midline and grab it and then throw it at the milk bottles.
When she was wearing the SPIO, she sat still on the bolster, grabbed the bean bag with the correct hand, looked at the milk bottles, and chucked the bean bag at them. More often that not, she hit them. It was pretty impressive. Then she switched directions and had her use her right hand and she performed about the same.

Then we took the SPIO vest off. INSTANTLY we had the Raya that we know and love back. :) She immediately went back to jumping, spinning, bouncing on the bolster, rocking back & forth on it, meowing at us, looking around the room instead of paying attention to what she was supposed to be doing, and only being able to focus for a few seconds at a time. Her balance was less stable and her movements were choppy and jerky instead of being a little more smooth and fluid like they were with the vest on. When she did reach for the bean bags, her therapist had to verbally cue her to use the correct hand about half the time. When she threw them, they went all over the place and she only hit the milk bottles once or twice out of all the attempts with either hand. (In the picture below, you can see the orange bean bag she had just thrown over next to the blue mat.)
 HUGE HUGE HUGE difference. As I'm thinking back on it, the more I think about the before & after, the more disturbing it is to me that there could be such a drastic change just from putting on and taking off a compression garment.

At that point, we were ready to go home so Raya bounced across the room to get her flip-flops on. When she got to them, she picked them up and then instead of sitting down to put them on, she jumped up and seat dropped flat on her butt on the floor, completely on purpose, and didn't even flinch. I'd say that after that we walked to the car but it was more like I walked and Raya bounced, spun, tripped over herself, and jumped to the car. I felt like I was holding hands with a little bouncy ball. As we were leaving, her therapist said, "If she's still like that when you get home, do her massage and that should calm her down. Hopefully. I'm sorry. Good luck."

Thankfully, once I had the bouncy ball contained in her carseat and started driving, she relaxed a bit and calmed down. Not enough for a nap though. She decided to poop at naptime. Why is it that a toddler who poops at naptime can't go to sleep after they poop?

So back to the SPIO vest, we have discussed possibly getting one for Raya, but there are a lot of things to consider. One is cost. These things aren't cheap. There's a good reason for that and if I had the money to do it right now, I would. Another factor we're considering here is that a primary reason to get this for Raya would be to help her focus at school. She's not in school yet and possibly won't be until kindergarten, so our money would be better spent by waiting another year or so before we invest in it because if we get it now she'll outgrow it by the time she's in school. The third consideration is that because she has a G tube that would need to be accessed during the day for feeds, she would need to have the garment modified to accomodate that. If we wait another year, maybe...MAYBE...she won't need that modification. Maybe. If we were at least to a point where she was only needing a couple of tube feeds per day and taking in calories orally during school hours when she would be wearing the SPIO, then we wouldn't need to modify the garment because her tube is so low-profile that I don't think it would bother her. And last but not least, some of the behaviors that seem to be modified by putting the SPIO vest on her are also things that typically come with the age that she's at so it's possible that a few months down the road, some of these issues will have resolved due to maturity. (but I'm not totally convinced of that. just sayin')

All things considered, this is definitely something that I would like to get for her when she gets into school. It's pretty amazing to watch your child who is normally all over the place sit still and focus on an activity. This wasn't our first experience with the SPIO vest. We used it several months ago with Raya's previous OT and had very similar results. That was honestly the first time any of us had ever seen Raya sit still in one place and play with something for more than a few seconds at a time. One of my biggest concerns looking ahead with Raya is whether or not she'll be able to pay attention in school, sit still when she's supposed to sit still, and focus on her work. After seeing what the SPIO vest does for her, I can honestly see us utilizing it when she gets into school if any of those things continue to be problematic for her.

(FYI, this is NOT a paid advertisement. That would be lovely, wouldn't it? I'm just kind of excited about a cool product that we tried out so I thought I'd share it. :)
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