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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.**

Thursday, February 28, 2013

Rare Disease Day-- 2-28-13

If you happen to have any friends on facebook with rare diseases or whose children have rare diseases, chances are you've seen this picture. (well, with a different face in it, of course) I will admit that as Rare Disease Day approached and more and more of these have popped up as profile pictures on facebook, I've struggled a bit. Notice the quesion marks across the "jeans for genes" ribbon? Most people have a diagnosis to put there in place of the question marks. We don't. There is a list on the global genes project's website of approximately 7,000 diseases that are considered to be rare in the United States, meaning that they have an occurrence of less than 200,000 people. SEVEN THOUSAND. My question is, why haven't we been able to identify one that fits Raya yet? (Ok, well she did have c. diff a couple times and that happens to be on the list, but that SOOOOO doesn't count...)

Until Raya was born, I had a very limited and concise view of the medical world. All of my previous experiences, both my own and my children's, had led me to believe that when something is wrong, you go to the doctor, the doctor does tests to find out what's wrong, and then based on that diagnosis, a treatment plan is administered and you go on your merry way. Some of those experiences were your average run-of-the-mill ear infection treated with antibiotics or peanut allergy that resulted in my purse always having Benadryl and EpiPens in it. Others were a bit more complicated, but we always knew what they were and they were always resolved. Now don't get me wrong, I knew there were a lot of medical conditions that can't be easily fixed and a lot that can't be fixed at all, but I had never had an experience where a diagnosis couldn't be found.

Having Raya changed my idealistic view of medicine, both western and alternative. When she got her first feeding tube at the age of 2 months old after less invasive interventions had failed her, our quest for answers began. 3 years and 2 months later, that journey has not ended. She has been tested for a myriad of medical conditions (including but not limited to mitochondrial disease, metabolic disorders, gastrointestinal anatomical abnormalities, eosinophilic disorders, motility disorders, genetic syndromes, and neurological conditions) and has a fairly lengthy list of diagnoses/symptoms, but there is nothing to explain or unify all of her conditions.

I've been asked what it's like to be "undiagnosed." If there was a stronger word for frustrating, that's what I would choose to describe it. It's like the most nauseating, miserable, stomach-dropping, twisting and turning roller coaster you can imagine. Sometimes it's not a big deal. We get on with life, diagnosis or not, and treat the symptoms to make her as comfortable & healthy as we can. Other times, it's agonizing to not know why she has these problems or if we're going about her treatment & management in the wrong way.

In the beginning, I lived with the notion that the next test we did was going to find "the problem," which would give us a treatment plan so we could fix it. Over time, that feeling unraveled. I'd get nervous the night before a test of any kind, whether it was blood work, MRI, endoscopy, upper GI, or anything else because I thought that maybe this would be the time that the pieces fell into place. With test after test that came back with results that were "WNL" (within normal limits) the hope I had would come crashing down again. Even flying clear across the country to consult with a well-respected specialist out of state did not produce helpful results. Eventually, we got to a relatively stable phase and I stopped looking for answers. I resigned myself to the idea that she just had a lot of funny little quirks, and that it really didn't matter if we ever figured out why. But inevitably, something would happen that would start my mind working again and I would end up researching, getting excited, emailing the doctor with my latest theory, only to realize or be told that this new theory wasn't "it" either. The past 3+ years have felt like a constant guessing game.

There have been two things in particular that have made being undiagnosed difficult for me. First, when you don't have a specific diagnosis, it is hard to find support. The heart moms have other heart moms, the mito moms have other mito moms, the EoE moms have other EoE moms, but we don't fit into any of those categories. If I hadn't come across Feeding Tube Awareness, I really don't know what I would have done for support. Second, knowing that there is SOMETHING wrong but not being able to find a name for it makes it very easy to doubt yourself. When test after test after test continues to come back "normal," you can't help but question whether you're making a mountain out of a molehill and thinking that things are worse than they really are. Sometimes you even encounter medical professionals who seem to go out of their way to make you feel like it's all in your head even though you know it's not. Then there is also the expense of continuing to pursue diagnoses and/or treatment, which for medically complex children often includes trips to specialists out-of-state that insurance doesn't always cover completely. It is all overwhelming and exhausting. Thankfully we don't live every day in that state of exhaustion, but it comes and goes in wildly unpredictable phases.

As negative as all of that may sound, I do still hold out the hope that we will someday find an explanation for all of Raya's medical conditions. The last 3 years have made it hard for me to truly believe that we ever will, but I still have the hope. New advancements in medical technology happen all the time. This is why, even though I have admittedly felt a little bitter this week seeing everyone else's pictures with their diagnoses written out across the ribbon, I support Rare Disease Day. There are 7,000 rare diseases already listed, and goodness knows how many children like Raya are undiagnosed, not because there isn't a name for what they have, but because it is so unheard of that their doctors just haven't located it yet. And goodness knows how many children DO have a disorder that is yet to be named. The more research that is done, and the more information that is shared, the better chances all of those afflicted with these rare disorders have of being diagnosed and receiving better treatments.

And that's all I have to say about that.

Tuesday, February 26, 2013

Tubie Momma Moment

If you've ever used the plastic bag from a pump set to put your leftover orange rolls in because you're out of Ziploc bags, you might be a tubie momma...

Oh, what a frustrating morning...

Most days, {aside from the whole feeding her "medical food" with a machine through a piece of silicone implanted in her belly thing}, I feel like Raya is a pretty normal kid. Then we have mornings like this one and I feel like I've been slapped in the face with reality again. I think my sister described it best when she said that Raya is wired differently. In so many ways, she's just a 3 year old, but then there are the other things that remind me that parts of her body & mind don't function the way that "just a 3 year old" should function.

Last night, she was feeling crappy thanks to the cold she has caught. She looked pretty pathetic and felt like snuggling on the couch, so we did.
See what I mean? Pathetic. Poor girl didn't feel good. No fever, no cough, no runny nose, just a stuffy head and her cheeks were bright red for no real reason. So we snuggled on the couch because she was comfortable, and it was a good snuggle for both of us.

This morning was an entirely different story. It started with Raya waking up in a cold, soaking wet bed with cold, soaking wet clothes. I had changed her diaper at midnight and her last feed had ended well before that, but she must have been holding it in because she peed everywhere. That meant she needed a shower before school. Getting her in the shower is a piece of cake but getting her out is iffy. Actually, "iffy" isn't a strong enough word. More like tiptoeing through a minefield. We use many different techniques to help her transition from being in the bath to getting out of the bath without freaking out, but she doesn't do well with being rushed and sometimes there just isn't time to play games with her. This morning was one of those times. I was more than patient but eventually had to just pull her out of the tub kicking and screaming so she wouldn't be late for school.

From there, I laid her down on the living room floor where I had her clothes, diaper, and basket of remedies for the horrendous diaper rash we're fighting off. She was crying and mumbling something about "two more minutes" (meaning that she wanted to be in the bath for 2 more minutes before I got her ready for school, never mind that she'd already been in for at least 15...). She fought me on everything. I got her diaper on, but she was fighting me on it so I couldn't put the medicine on her that I needed to. Then I started trying to put her pants on. She kicked and fought, so I tried the shirt. As fast as I could get one arm in a sleeve, she was pulling it out. (at which point I wondered why I had chosen a long sleeved shirt...) It took a lot of pulling & tugging, but I got the shirt on. Then she pulled it off and was crying and saying that she wanted a different shirt, which nobody could find. Not that it mattered what shirt I had been trying to put on her, the response would have been the same no matter what because she wanted to be in the bath and not having clothes put on her.

By then, it was time to be getting in the car. I knew there was no way we'd make it to Raya's class on time so I let the big kids ride the bus and tried to get Raya calmed down and dressed. (they're at the same school but start 20 minutes after the preschool kids) By this time, she was spinning around in circles, wearing nothing but a diaper, and still crying about wanting 2 more minutes in the bath. School starts for her at 7:45, and since we hadn't left by 7:45 and she was still unclothed and crying, I decided she was not up to going to school today. I asked her if she needed to stay home today and she nodded her head yes. I put her blanket around her and she sat down on my lap. She curled up on my lap and sniffled while I called the attendance hotline to report her absent. Eventually she let me help her put clothes on (the shirt I had been trying to put on her before and a pair of pajama pants) and she finally relaxed.

A few minutes later, I sat down to check my email and there was a message from Raya's support coordinator from the state. (quick refresher, we got a new one because she turned 3, and the old one had failed to mention that I needed to get prescriptions for Raya's therapies so the new one asked me to call the ped's office and get scripts for OT and FT and have them back dated for 11-17-12.) The email said that I needed to call and get a new one for feeding therapy because the script said "speech & feeding therapy" apparently it can't have the word "feeding" on it. She had told me in a phone conversation that I needed to get a script for OT and for "speech" (which they use for feeding) but she didn't say that it COULDN'T say "feeding" on it, and when I called the doctor's office I thought I was covering my bases better by having them say both. Even after discussing it with the support coordinator, I still think it's a load of crap don't see why having it say "speech & feeding" instead of just "speech" completely invalidates the script but sure, I'll make a few more phone calls with all my spare time.

In the mean time, Raya's state of mind had shifted from disorder/irrationality to being mad at me for not taking her to school. Seriously, kid?? While I was on the phone with the support coordinator, she was hanging on my leg and whining, "I thought you were duss' taking me to SCHOOL!" Um, honey, remember the part where you were pulling your arms out of your sleeves faster than I could pull them in?? She wanted pudding and a drink of water, so I pulled the pudding out of the fridge and gave her a cup with ice water in it, just like she likes. Only she didn't like it. She threw a fit because the pudding and water were cold and she wanted them warm. She NEVER wants anything warm. I warmed up her pudding and dumped out the ice water & refilled the cup with lukewarm tap water. She thanked me and said she liked it warm. REALLY?? That's news to me. Complete opposite from how she normally is.

THIS, my friends, is why I hate it when Raya gets a cold. I'm not sure I'd even call what she has right now a cold. Her head is stuffy but it doesn't seem to be going anywhere. She doesn't have a runny nose and doesn't have a cough from post-nasal drip. Whatever it is though, it has done a number on her today {and subsequently, on me} and has made it feel like we just lost a year of OT. The timing is really sucky too since she's still trying to adjust to having her formula changed a month ago. The combo of her GI issues still being a problem and catching a funky head cold is not good.

Speaking of the GI issues, I sent off another email to her GI doctor because I feel like we're stuck right now. Still refluxing many, many times a day, still complaining every day that her throat hurts, still talking about having puke in her throat or mouth, and now she's having very liquidy stools because of the Neocate. The only things that have improved since she went on Neocate are the keratosis (chicken skin) on her arms & legs and she seems more comfortable than she was before switching. She's not waking up late at night with a stomach full of food & formula anymore but that's because she's not eating any food and her formula is moving through her very well. So like I said, I feel like we're totally stagnant right now. Hopefully she'll have some suggestions.

Sunday, February 24, 2013

Vanilla Elecare

Raya has never been a formula drinker. The reason she got an NG tube at 2 months old was because she was not tolerating or growing on breastmilk so she needed an easy-to-digest, relatively hypoallergenic formula. It smelled (and I'm sure taste) absolutly horrid, so she refused to drink more than a small portion of each of her 8 daily feeds. When she switched to Neocate Infant 2 weeks later, she drank it a little bit better but was having so much reflux, vomiting and general discomfort that she still just wasn't interested in drinking formula. We have never pushed her to drink her formula because we have felt like there was no benefit in fighting to get her to drink unpleasant tasting formula when there's a perfectly good tube to feed it to her through, and that the pushing from us should be towards eating solid food. Not everyone agrees with that sentiment, including the dietitian who lectured me for most of an hour about not putting blenderized food through the G tube (which we weren't really even doing) and pushing her harder to drink formula. The people who disagree with us have also not been in our shoes with our daughter, so although they may be educated on dealing with children who have feeding difficulties, they don't know Raya. I've been asked why we don't try to get her to drink flavored formulas or the other hypoallergenic drinks, and the honest truth is that Raya really has not been interested in those things and when you're trying to undo psychological damage from years of disordered feeding, some things aren't worth the fight.

Since Raya went elemental almost a month ago, she has missed eating the things she was used to eating. I didn't realize until yesterday that she is also missing another little ritual that we've had. For a good portion of the 2 years that she was on vanilla Peptamen Jr., our routine was that I would say, "Raya, will you get me a bag for your backpack please?" and she would get me a pump bag. Then while I opened the pump bag, she would run to the cabinet where we kept her cartons of Peptamen and bring me 4. Sometimes it took her more than one trip, but it was something she always wanted to do for herself and wouldn't let anyone help her with. She would shake them and set them on the counter for me. After I poured the formula into the pump bag, I would set the empty cartons on the counter and she would pick them up and drink the last few little drops that were left in them. Even I will admit that just a few drops of Peptamen tastes pretty good. It was our little ritual for probably a year, maybe more, and it's not the same now that we're back to Neocate.

She still brings me the pump bag, but since we're using powdered formula, I mix it in a big container, pour it into her pump bag and then put the rest in the fridge. It's just not the same. Honestly, it hasn't bothered me too much that she hasn't been under my feet and grabbing at the containers every time I'm filling her pump bag for the last month. What I didn't realize until yesterday though, is that she has missed tasting her formula every day. While I was filling her pump bag yesterday morning, she came in the kitchen and said, "Mommy, can I taste formula?" I didn't know quite what to say. I haven't been brave enough to taste Neocate on purpose. There were some accidental tastes back when we were using it before but we won't go into that. Anyway, I know Neocate doesn't taste good and especially to a little girl who is used to tasting very sweet vanilla Peptamen. I let her taste it anyway though. I poured about 5ml into a cup and gave it to her. I wish I had a picture of her face, and subsequent pictures of the formula dribbling out of her mouth, followed by me wiping the rest out of her mouth with a towel. It was cute but sad but cute.

After we had cleaned the slobbered teaspoon of formula up, I asked her if she wanted to try some vanilla formula. To my surprise, she nodded her head "yes." I guess she's really missed those little tastes. A friend had brought over a can of vanilla Elecare last week, so I got it out and mixed up a little bit. I really didn't expect her to want more than a taste, and would not have been surprised if she had spit that out too. She was very quiet and skeptical, but gave it a try.
To my surprise (and delight), she cautiously and thoughtfully drank the first 2 teaspoons that I put in the cup. (ps the cup was a scoop out of Donny's empty container of protein powder. great cup for a 3 year old who takes her beverages 2 teaspoons at a time.) When she had finished that, she softly and quietly asked for more. She ended up drinking 20ml (4 teaspoons) of vanilla Elecare before putting the cup down and telling me she was done. She thanked me for the "yummy vanilla formula" and went off on her merry way. Later on in the day, she had another small sip, and today I think she's had almost a full ounce. It doesn't seem like much and is really a drop in the bucket compared to her daily caloric needs, and I'm trying not to get too excited about it, but it really is exciting. Why? Because it was HER choice. SHE asked ME to give her some vanilla formula, and SHE has asked multiple times since then for more tastes.

The fact that she was being so quiet and calm about it spoke volumes to me. The majority of the time, she is not a quiet child. She makes her presence known. The only times Raya is quiet are when she doesn't feel well, when she's concentrating on something she's trying to do, and when she's thinking really hard about something. I wish I could hear what's going on inside her head at times like that. She was being very thoughtful about tasting the Elecare. She knew she wanted to taste it, but I could see that she was having to push herself to overcome her fear.

We are now in a unique position with Raya that I didn't ever expect to be in regarding food. (not that I ever expected any of the unique positions we've been in regarding food...) We've gone through so many phases with her and eating, but now we are finding ourselves in a place where she is no longer allowed to eat and she is realizing that she actually does enjoy eating certain things and that she does miss it. She has never had ANY interest in drinking anything but water. The sips of Peptamen that she would take were fractions of a teaspoon. Now that she is taking small quantities of vanilla Elecare at her own request, I'm hopeful that we could start introducing her to the other elemental options that are available, like chocolate Neocate and the different flavors of Splash. I really don't care if she ever drinks significant quantities of any of them, I'm just glad to have more options to let her try when she wants something to eat.

There is a part of me that wants to feel very optimistic about Raya going full speed ahead with eating once we're able to let her have food again. I think if we were to let her eat, she'd be blowing her old self out of the water right now. Not being allowed to have food has helped her to realize that she wants it. However, there is another part of me that knows too much to give in to that optimism. It's not that I don't HOPE she'll be a more enthusiastic eater when she's able to, but realistically, putting food back into her diet is going to be a very slow process. We haven't even started that process yet. Unfortunately, food allergies are not the only thing we're up against here. We're also dealing with the issue of delayed gastric emptying with solid food. Even if the foods she eats are not things she reacts to, there is still a problem with getting her stomach to move them through efficiently. We've seen the ill effects of this problem recently and have no way of knowing what the effects will be in the future when she starts eating again. Knowing what her little body is up against makes it hard for me to allow myself to be overly optimistic about her eating, but it does my heart good to know that her desire is there now. Who knew she'd ever be so happy about vanilla Elecare!

Saturday, February 23, 2013

More alternative uses for medical supplies

It's time for another installment of alternative uses for medical supplies, by Raya and siblings. (some authorized by Mom, and some NOT authorized by Mom)

Some of our previous alternative uses included:
"A" pancakes made with a 60ml cath tip syringe to celebrate Ashtyn's birthday last March
Fixed my favorite snowman with Medipore (because home health sent it by mistake and I have no real use for it)
Cases of Peptamen as a computer chair
Many, many cases of Peptamen and Pedialyte used in conjunction with towels on top of and underneath the rug to soak up the large puddle of apple juice that a child took out of the fridge without permission and drank in the living room, which is off limits to food & drinks, and then spilled alllllllllll over the rug.
Donny labeling his students' belts with Micropore for the belt promotion ceremony, which I did not know about until I got there
Last minute labeling of Christmas stockings with Micropore
Children using Micropore to tape notes on each other's bedroom doors. Not authorized.
Even Grandma is using medical tape to label things. My dad took a roll home with him when they visited last month and Mom used it to label the kids' Valentines. They noticed right away that she has used medical tape and thought it was really cool. :)

I'm sure there have been others but those are the ones I can think of right now. Which brings us to the recent ones. This morning, I slept in and I heard the kids making all kinds of noise in the living room. It wasn't the usual noise but sounded like their super-cheesy "let's do teamwork" kind of noise. I walked into the living room and they had built a "stage" out of boxes of medical supplies so they could do performances to their Disney station on Pandora.

They had a great time singing & dancing. Of course Raya just wanted to use the stage as something to jump off of. Oh, and speaking of singing, check out Kaida's microphone:
Yep, that would be a carton of Peptamen Jr. They're so resourceful.

After I had them clean up their stage, I went outside to start digging up the ground to plant a garden. I came back in a few minutes later and they had built a fort in the living room, also out of boxes of medical supplies:
I'm glad that they're so easily entertained and have such good imaginations. We did have a discussion about not dropping {or stacking & knocking over} cases of Peptamen Jr tetra paks though. It's a disaster waiting to happen if those things get damaged.

I spent most of the day today outside in the beautiful weather getting the ground ready and planting a garden. The girls helped me by pulling weeds while I turned over the rock hard dirt and spread good soil over it. They all get really excited about growing a garden since we've done it a few times now, so they all wanted to help plant something. Turns out that planting a garden is great OT. Raya got some good fine motor exercise in by picking up bean and beet seeds out of my hand to put into the holes I poked for her, and some good sensory work with touching the different textures and getting her hands dirty. We may end up with random plants scattered in various places because she got a little carried away at times, but she had fun.

After everything was in the ground (except for the giant patch in the middle that I haven't figured out what to plant in yet) it was time to get the soaker hoses spread across the garden. To my dismay, someone had broken one of the hoses.
Bummer. I really needed both of them and didn't want to make another trip to the store to buy either a new hose or the supplies to fix the broken one, so I put my Mom-Gyver medical supply skills to the test. Who needs a hose repair kit when you have Hypafix and packing tape anyway.
BAM. Fixed it. Luckily, being a soaker hose, it's SUPPOSED to be leaky so it's totally okay if it doesn't hold perfectly. I just needed it to be put back together so I could cap the end of it and put it to work. So far, my patch job seems like it will work out even if I have to replace it sometime down the road.
And there it is. Hopefully everything I planted will grow and Raya will be able to eat fresh, homegrown salsa and tortilla chips sometime this summer. That would make both of us very happy. :)

Friday, February 22, 2013

Why I use a scale to measure & mix Neocate

We recently switched back to powdered formula (Neocate Jr) after being on ready-to-feed Peptamen Jr for 2 years. When we used powdered formulas before the Peptamen, we always just used the scoops inside the cans to measure the powder with. Raya is our 4th child but she's the first one we had ever used formula with, so I don't think it even occurred to me during the first year of her life that there was another way to do it aside from the scoop. This time around though, we happen to have a digital food scale thanks to our brief adventures with counting oral and blended food calories, so I decided to do a little experiment. {note: I'm not saying that either way is right or wrong, I just made an observation that I thought was interesting and wanted to share the results. this could go for any powdered formula too, not just Neocate.}

When we started using Neocate again a few weeks ago, I was curious how accurate the scoops would be so I got out the scale to weigh the powder.

I started by putting a styrofoam cup on the scale and zeroing it out with the empty cup on it.

I had just opened a new can, so the powder was kind of compacted from settling during shipping. I scooped, patted the formula down with my fingers to make sure there was powder in the bottom of the scoop, and then leveled it off.
For an 8 ounce bottle, it takes 6 scoops, which should equal 49.2 grams. I found out while doing this little experiment that my scale does not display odd numbers, so I rounded up to 50 grams. When I scooped, patted, and leveled, this is what I ended up with:
Instead of 50 grams per 6 scoops, it came out to 54 grams.

Then I started over but this time, I stirred the formula in the can to loosen it up. When I sooped the formula out, I tapped the scoop to make sure it was full down to the bottom and then leveled off.

6 scoops later, here's what I had:

This time, it was 46 grams instead of 49-50 grams. Neither of those discrepancies sounds too far off, but then I did some calculating.

Currently, Raya gets the equivalent of 4 8oz bottles per day (plus a little extra which I didn't figure into this because I mix it separately). At 54 grams per 8 ounce bottle instead of 50, she would be getting an excess of 16 grams of powder per day. Multiplied out over 30 days in a month, she would be getting an extra 480 grams of powder per month. To put it into perspective, that's more than ONE FULL CAN of Neocate. Having just switched to Neocate, we do not have ANY extra, and our home health company does not allot us any extra, so if we were to measure the formula that way for every "bottle" every day, we would run out of formula before the end of the month. Not only would we be using 480 extra grams of powder per month, but she would be getting an excess of 2294 calories per month, which divides out to 76.5 extra calories per day that she doesn't need.

At 46 grams per 8 ounce "bottle" instead of 50, she would be short 12-16 grams of powder per day. Multiplied out over 30 days, that's a shortage of 360-480 grams, or approximately 1 can of formula powder. The shortage would equate to 1720-2294 calories per month. That's a deficit of 57.4-76.5 calories per day. These numbers may not be greatly significant to a 3 year old who is maintaining a good growth rate, but it could have a significant impact on a small infant or on a child who has difficulty gaining weight.

In fairness, I did measure a third time and happened to hit exactly 50 grams. I think the lesson to be learned here is that using a gram scale to measure formula powder is going to be consistently accurate, whereas using the scoop to measure will be consistently inconsistent. And again, the differences may not make a significant impact on everyone, but for some, they very well could.

On to the next subject...

Mixing Neocate doesn't seem like rocket science, and it's not, but there are some things that can make it easier and can result in less pump alarms. When I mix Neocate, I like to mix the entire 24 hours' worth at a time before I go to bed at night and put it in the fridge. There are several advantages to this method, with convenience being a huge advantage. It's much easier and faster to pull pre-mixed formula out of the fridge and pour it into the pump bag than it is to have to mix formula several times throughout the day and night. When you're on the go during the day, you can put whatever amount you're going to need either into the pump bag or into a baby bottle with a tightly fitted lid and keep either one cold with an ice pack. Another advantage is that mixing at night and refrigerating overnight allows the formula to settle so that there is no foam or tiny lumps of powder that will clog pump bag tubing or cause the pump to alarm. Another thing that makes a difference in the way that the formula dissolves is using warm water instead of cold water. It doesn't need to be hot, but formula generally mixes better in warm water. There aren't as many tiny little lumps of formula when it's been mixed in warm water.

We've experimented with a lot of different containers since we started mixing Neocate again. When we used it 2 years ago, Raya was on a smaller volume so the container we used to use isn't big enough anymore. (and yes, I still have the same container. I never get rid of things...) I mentioned that I like to mix 24 hours' worth at a time. Sometimes I don't get the entire volume mixed at once though so I do half. When I do that, the best container to do it in is a blender bottle, which you can get at nutrition stores or the protein powder aisle at Walmart. They come with a little springy metal ball in them, and they do a FABULOUS job of mixing Neocate. The other nice thing about them is that they have measurements marked on them so when I'm mixing 480ml of Neocate, I fill the bottle to the 400ml line with warm water, dump in the powder, put the lid on and shake it.

When I do mix the whole day's worth at once, I like to use an empty 1 liter Pedialyte bottle. It gets extremely messy (and wasteful) without a funnel, and the absolute best funnel I've come across for pouring formula powder into a container is this:
Thaaaaaat's right. The plastic shield from a breast pump. Medela, to be exact. (you can find them on Amazon) The neck is small enough to fit into most containers that would be the right size for mixing formula in, and it's wide enough that the powder doesn't get packed into the bottom of it like regular funnels. {So glad that breast pump can come in handy since I didn't get to use it for its intended purpose for very long. ha ha}
I can mix Raya's full volume of formula in a Pedialyte bottle, refrigerate overnight, swirl it around in the morning to make sure there's nothing settled on the bottom, and it's good to go. The down side to the Pedialyte bottle is that it doesn't have any volume markings on it so I measure with a different container. If I was really on the ball, I'd put in the amount of water I need and then mark the water level on the bottle...

As with any of the "instructional" blog posts I've done, there are many ways to do things. I'm not saying that the way I do it is the only/right/best way and I'm sure there are lots of other great methods, this is just what works for me. In the month that we've been using Neocate again, we have not had any pump alarms from clumpy or foamy formula, so what we're doing is working. :)

Wednesday, February 20, 2013

What to eat when you can't eat

The last 3 weeks have been challenging for Miss Raya. She has been off of all food except for Smarties and DumDums. After spending so much time trying to get her to eat, taking food away has felt mean and wrong. When all you can have is Smarties, DumDums, water, and ice, eating gets pretty dull. We don't know how long she will be on an elemental diet and we don't want her to lose ground with her oral motor skills or lose interest in eating, so we've been trying to get creative with what we have to work with. (she is not interested in drinking Neocate, nor are we interested in trying to make her)

There are a few things that we are not doing at all right now:
  • No eating out with the kids. Back when she didn't care about food and back before we knew about her food allergies, she was content to sit at the table and play with crayons, drink water out of a 60ml syringe, and nibble at ice cubes/tortilla chips/fries. Now that she has gotten used to nibbling at food when we're eating and enjoys going out to eat, we feel like taking her to a restaurant would be cruel. At home, she can leave the table if she doesn't want to watch us eat things she can't but she couldn't do that at a restaurant.
  • We don't eat any of Raya's favorite foods. We haven't had pizza in our house since November. I had JUST bought the special fake cheese to try and make her some safe pizza right before she went on the elemental diet again. There are some things that we know she likes that we still eat just because we have to eat SOMETHING, but there are certain foods that make her very sad when other people are eating them and she can't, so those are the ones we're avoiding.
  • We don't bake treats. I've been too busy with school to even think about baking anyway but since I've been on a break, I've thought about making cookies a couple of times. Then I think about how sad Raya will be that everybody else is eating warm, fresh chocolate chip cookies when she can't and I change my mind.
  • We're trying not to remind her that she misses food. The big kids are not {supposed to be} asking her if she's hungry, talking about being hungry in front of her, or asking for snacks in front of her.
Now I realize that some people might disagree with the idea of the rest of us avoiding things she likes just so she doesn't get her feelings hurt. If the no food thing lasts for a long time, then she will need to learn how to deal with the unfairness of not getting to eat things she likes when other people can. However, right now she's 3 years old and is not able to comprehend that so we feel like it's better for us to sacrifice a little right now in order to help her cope. She's getting reacquainted with watching everybody else eat but sometimes it gets to her so those are the things we're doing right now. Mealtimes have been more difficult than snack times. Here's what we're doing to cope with mealtimes:
  • Let her do something else while everybody else eats. When I can convince her that she would rather play games with me on the iPad in the living room, we do that. When you're hungry, the smells of food can trigger a physical response in the digestive tract that would prepare it for digesting food. For someone who is not able to eat, that response causes discomfort. If she doesn't want to be at the table, we don't make her.
  • Take her for a walk. Sometimes it's nice to just get her out of the house and away from the smell of food that she won't get to eat. Sunday evening, Raya and I took advantage of the beautiful weather and went for a 1.5 mile walk around our neighborhood. She got bored part of the way through, but it was better than having her sit at the table and cry and beg for food the whole time like she'd been doing all week. I've also taken her with me to run errands while everybody else eats.
  • Let her color at the table. Lately, she's really enjoyed coloring books so we've started letting her bring a coloring book and crayons to the table just so that we're all at the table together and enjoying each other's company.
  • Let her choose something to eat. Her list of options is really short, but we try to give her as many opportunities to make choices as we can because it helps her to feel like she's got a little bit of control over the situation. Sometimes all she wants to do is eat ice cubes while we eat dinner and for now, that's totally fine.
While we're on the subject of what she can eat, here are a few of the creative things we've tried with her 4 options (Smarties, DumDums, ice, and water) beyond just eating/drinking them as-is. One of the biggest things for her is that being 3, she likes things better if we use the right verbiage. Instead of asking her if she wants a bowl of ice with water, we ask her if she would like a bowl of ice soup. Flowery language can go a long way with a 3 year old.
  • Ice soup: crushed ice in a small bowl with enough water to get the ice wet. This is her current favorite.
  • "Wet ices": 2 wet ice cubes in a cup. Not 3, not 4, just 2.
  • Smartie soup: This was the genius suggestion of my sister. We added thickener to some water and dropped Smarties in. Thickened water is more scoopable than regular water, and the Smarties make it more interesting. The problem was that thickened water is just plain weird and she was a little put off by the flavorless gel in her bowl. (side note, I don't blame people one little tiny bit for not wanting to drink thickened beverages. Thick water is just wrong.) Next time, we'll crush Smarties into the water before thickening it or something.
  • Popsicle soup: This was slightly ridiculous but she loved it. I crushed about a dozen DumDums (2 flavors mixed together), put the crushed candy in a pan with about 1C of water, and melted it down into a syrup. Then I attempted to freeze the syrup in an ice cube tray, which was a fail because the syrup was too sugary to freeze completely. They were partially frozen but not enough to just give her the cubes like I had originally planned. The solution was to put a cube into her small bowl and put a little bit of water in the bowl to dilute the sugar, and ta-da, popsicle soup. This would probably go better if it was thickened also.
Popsicle soup

Things we plan on trying sometime in the near future (maybe):
  • Neocate Splash. Not the tropical flavor though, we've tried that and she thinks it's gross. I've tried it and I think it's gross too. I also plan on making Splash-sicles and/or Splash-sicle soup
  • Neocate Nutra, flavored with DumDum syrup. I will be telling her it's pudding.
  • Revisit DumDum popsicles only dilute the syrup a LOT more so they'll actually freeze solid. Throw them in the Vitamix to make them slushy. She likes slush.
  • Chocolate Neocate made into slush. Since she loves "ice soup," we think she might like slushy Neocate "ice cream."
When we're able to start adding foods back in, we will be able to do a lot more with her "soup" and popsicles. Thank goodness she likes cold things or we wouldn't have anything for her!

Aside from the very few things she can eat (which have absolutely NO nutritive value and are just sugar), there are other things that we encourage so that she doesn't lose her oral motor skills. I've noticed (and so has Raya's respite provider) that Raya's speech is getting lazy again. Words that had been clear and easy to understand are now getting soft and choppy again. I'm not sure if a speech therapist would agree with me, but I feel like it's from the lack of exercise that she had previously been getting by eating. Even the small amount of food she was eating required her to bite, chew, manipulate the food with her tongue, and swallow it. Smarties and ice don't require that same effort and after 3 weeks, she seems to be slipping a little. Here are some of the tools we use to help her retain her oral motor skills:
  • Chewy tubes: Chewy tubes come in a huge variety of shapes, sizes, colors, and even flavors. They can be purchased online from Amazon. Ours were given to Raya by her previous feeding therapist and are made out of heavy rubber tubing used for exercise. I've thought about getting her some of the flavored ones but I'm not sure that she'd really care that much for them.
  • Flavored tongue depressors: These can also be ordered in various colors and flavors from Amazon. There are plastic ones and wooden ones, and I would recommend avoiding the wooden ones. Raya's previous FT brought her a couple of plastic ones with animals on one end that were banana flavored and she seemed to like them. We haven't gotten to the point of using flavored objects yet but if we do, those are the kind I will get her.
  • Wet washcloth: Chewing on a wet washcloth was the catalyst for Raya accepting water in her mouth. I don't remember exactly why or how she got started with chewing on the wet washcloth, but before long she was sucking water out of it. We used it as a feeding therapy tool and would have her bite the corner of it between her molars and play tug-of-war with us to help her get used to biting between her back teeth.
  • Textured toothbrushes for babies: In the baby toothbrush aisle at places like Target and Babies R Us, there are double ended toothbrushes that have different textures at each end. They are awesome for kids who need oral sensory work and also for kids (like Raya) who refuse to let a parent near their mouths with toothbrush in hand. Chewing on a toothbrush is better than nothing!
Textured baby toothbrush and chewy tube

 I know there are other things that we could probably try and things that other people have thought of that we haven't, but these are the things we're doing for now that have helped Raya cope with having to stop eating food. 

Monday, February 18, 2013

Raya's new video

I had planned on making a new video for Raya for Feeding Tube Awareness Week this year but because I was so busy working on the official video for the Feeding Tube Awareness Foundation, I didn't have time to get it done in time to post it on the first day of FTA Week. Or the second, third, fourth, fifth, or sixth day. I did finally finish it on Sunday and posted it on facebook but I haven't shared it here yet.

As I started thinking about what direction I wanted to go with the video, I decided that I needed something more upbeat and peppy this time. I need something that I can watch when I start to get stressed out because of the pressure I feel from outside sources in regards to Raya. Every parent feels pressured to make sure that their kid measures up to everybody else's. Being the mother of young children often feels like a competition. Whose kid learns the ABCs first, whose kid is potty trained first, whose kid can read before kindergarten, whose kid can start kindergarten at the youngest age, whose kid goes to the best preschool, and so on. When your child has special needs, the pressure to just be "normal" gets overwhelming. We have long since passed the "normal" time frame for things other kids Raya's age have been doing for quite a while. Don't get me wrong, I'm okay with it, but sometimes I feel like other people aren't and I don't want Raya to ever feel like she's "lesser-than" just because of her medical issues and their repercussions. If you are the parent of small children, whether they have special needs or not, don't buy into that crap. Your child does not need to measure up to anyone's standards but his or her own!

Anyway, I chose two songs that I feel are good representations of how I feel about Raya, and how I want Raya to feel about herself. She is exactly the way that God wanted her to be when He put her on this earth, and we are embracing life the best that we can and not letting her difficulties stand in the way.

Here's this year's video:

Raya FTAW 2013 from Brandis G on Vimeo.

Sunday, February 17, 2013

Another FTA Week comes to an end...

Well that was a heck of a week. It's been pretty exciting to watch the Feeding Tube Awareness facebook page grow so much so quickly. I'm not sure what the exact numbers are but we grew by close to 1,000 people over the past week. Very exciting to see that more people are hearing abou Feeding Tube Awareness and connecting with each other.

It was a pretty exhausting week for me. The ASPEN Conference was a great experience but after spending the last 4 months in my desk chair taking really intense online classes, my body is not used to that much walking and standing. To make things more fun, Raya has had a rotten week of sleep. Monday night, she was up from 10:00 to midnight crying. Reflux woke her up and then she couldn't get back to sleep. We finally fell asleep on the couch together shortly after midnight. I didn't take her to school Tuesday morning because we were both too tired to get off the couch in time to get her there by 7:45. (Side note, every time I connect her to her feeding pump as I'm dropping her off by 7:45am, I wonder how the parents who actually have to make their kids eat breakfast by mouth are able to get them there on time.) She slept better Tuesday night but Wednesday was awful.

Wednesday morning I went to Raya's parent-teacher conference that morning and had a nice discussion with her teacher about what's going well and what the concerns are. I now have to decide if I want to make the school declare her classroom a nut-free zone because of her allergies. I had assumed that it was school policy that if there is a nut allergic child in a classroom, the classroom is automatically nut-free but apparently that's not the case, so the teacher said I can decide. I don't like being put in that position. It also turns out that she IS getting speech therapy. I didn't think she was because after the initial letter came home about it, I never saw anything in her backpack about speech again but it sounds like pretty much the whole class is getting speech therapy. The issues we're seeing at home that we don't feel are age-appropriate are pretty much the same things they're seeing at school, and we're both using pretty much the same techniques to deal with it so it's nice to know that we're on the same page about that.

As soon as we got home, Raya's new support coordinator from the state came over to have our quarterly meeting. I was very, very sad when I found out that our previous SC would not be continuing with us once Raya turned 3. She was a wonderful woman who truly cared about the kids on her caseload and did the best she could to make sure that we had what we needed. I hope that the new SC will be just as good. Our meeting was long because I had to fill her in on a lot of Raya's history and what her needs are. She will now be getting habilitation as well as respite, or at least I hope the SC's supervisor will approve the hab hours. The only frustrating thing so far is that the new SC admittedly does not have much experience with kids as young as Raya so it was hard to come up with goals for hab because I'm completely new to hab and the SC doesn't work with 3 year olds to know what a 3 year old's hab goals should be. I think we got some figured out though so hopefully it will be approved.

Wednesday night started out okay. We put her in bed at the normal time, but then unbeknownst to Donny and me, she climbed out of her bed, took her backpack off of the IV pole, and went to sleep on the floor in the girls' bedroom. At 10:30, reflux hit her hard and she was awake and unhappy. She cried off & on from 10:30 until just after 2:00 when she finally was able to calm herself down enough to ask me for Smarties. Since I'd had to drain the contents of her stomach (about 220ml of formula) I figured she was probably hungry so I gave her Smarties and a drink of water and then she snuggled up next to me on the couch and went to sleep. If Thursday hadn't been Valentine's Day, I would have called off preschool again but I took her anyway. I didn't have time to connect her feed or do meds first, but she got there on time. The teacher had let me know ahead of time that they would be doing activities with food starting around 9:00, so Kaida and I went back to the school at 9:00 to pick her up. The kids were listening to a Valentine's Day story, so once the book was over, the teacher gave Raya a hug and told her to have a nice weekend and we left. She had also been kind enough (at my request) to email the other parents and ask them to not put candy in Raya's valentines. I really appreciated the other parents honoring that request because I didn't want to have to be the meanie that stole all her candy.

Thursday afternon, we went to play at a friend's house. Raya had been jumping on the trampoline with her pump backpack on and after a while, she came into the house to find me. She said, "Mommy, I'm getting wet." Her dress was a little wet but I couldn't figure out where it was coming from. Then she turned around and it was immediately clear that the pump bag had broken. Formula was dripping out of the bottom of the backpack. Luckily, her dress soaked up quite a bit of it, and luckily, my friend had extra clothes for her to wear.
Later that evening I went to visit my little buddy Jaxson at the hospital. He was admitted for a 24 hour impedence probe study so I went to keep him and his momma company for a while. He is the cutest little guy and I just want to squeeze him all the time.

Friday, Raya had the WORST session EVVVVVVERRRRRRR at OT. Ever. It had nothing to do with her therapist or with me, she's just a mess right now. I can't remember what she got upset about in the car but she was upset about something really silly. Like, she wanted me to drive when the light was red or something like that. When we got to therapy, I opened her door and unbuckled her and instead of getting out herself like she usually does, she wanted me to carry her. She had her head on my shoulder all the way into the clinic and clung to me while we were in the waiting room, neither of which is typical behavior for her. She did not insist on getting me a pen to sign her in with, nor did she climb on the chair next to the water cooler and get herself a cup of water. She continued to cling to me all the way to the therapy room we were using, which is a pretty long walk that she usually wants to do by herself. While we walked, I filled her therapist in on the lousy sleep she's had this week and she decided that Raya needed a good sensory diet day to help organize her system. I agreed.

We walked in and I laid her on the bean bag chair with a blanket over it. Her therapist started to put lotion on her legs (which usually helps) and Raya started to flip out. We decided that I just needed to disappear for a bit, so Kaida and I went over to another side of the room where she couldn't see us. She kept crying. Her therapist decided she needed to get in the cuddle swing with the heartbeat bear, which usually helps. Raya had a fit. We could hardly get her into the swing, and then she kept screaming and thrashing around the whole time she was in it.
She's supposed to be all curled up and relaxed, but that obviously did not happen. She's straight as a board and one foot is hanging out. After a few minutes, her therapist decided that she was not in a safe state of mind and needed a different kind of sensory input, so she got Raya out of the swing and headed for the ball pit.
That was a disaster before it even started. Raya got to the edge of the ball pit and her therapist picked her up and set her in it. Raya wanted to climb in by herself, so the wailing got worse. Her therapist got her out to let her climb in by herself. She still cried & screamed. I climbed in with her to try and hold her. That did NOT help. She wanted out but she was so worked up that her therapist did not feel like she was behaving safely enough to get out. She kept trying to climb out, but we told her she could get out when she calmed down. Finally after about 40 minutes of all-out, inconsolable, fight-or-flight meltdown, her therapist told her that she had to go home because she wouldn't calm down. We gathered up our things and her therapist carried my bag so that I could carry my kicking, screaming, freaked out kid.

When we got inside to where the feeding therapy room is, Raya pointed to it, meaning that she wanted to go in. I asked her if she wanted to say hi to her feeding therapist and she nodded her head yes. Her OT went to get the FT and we went inside the FT room. While we waited, Raya calmed down enough that I felt like it was okay to put her down. She walked right over to the high chair and sat down. Her therapist came in and asked her if she wanted some ice to eat. At that point, Raya had her arms folded on the table and her face on her arms. She was still sniffling but not really crying anymore. I asked her if she would like a bowl of "ice soup" and she nodded her head yes. Her therapist followed my cue and asked her if she wanted a green bowl or an orange bowl, and she chose orange. I put crushed ice and a little bit of water into the bowl and gave it to her. She happily ate her ice soup for the next 15 minutes or so. I held her to using her nice manners when she wanted more ice, and she easily obliged. It was a completely different kid than what we'd had in OT.
As distressing as these really bad meltdowns can sometimes be for me, I'm more or less used to it. I've seen it before and I'll see it again. However, this was the first time her therapists have seen her like that. This may sound bad but I was SO relieved to have someone other than myself or Donny see Raya get that out of control. She wasn't behaving badly or being naughty, she was literally in fight-or-flight mode. It is truly disturbing to see that wild look in your child's eyes and not be able to calm them down. Hopefully her body will adjust soon to the changes we've made to her diet, because diet and sleep are the nervous system's two primary regulators. Her diet change was supposed to help the reflux that was screwing up her sleep, but that hasn't happened so she's just completely a mess.

In other, more uplifting news, The big kids have been so cute lately. They really love helping with Raya, and this week Ashtyn has taken an interest in learning how to set up the pump inside the backpack. She likes to take the old bag out and throw it away. She's not quite ready to load the new one in unless I've already filled it up and primed all the air out of it, but she'll get there. It's great to have such a helpful big sister around!

Saturday, February 16, 2013

FTA Week 2013: Day 7, Humor

Sometimes you just have to laugh: Tubie Humor
We all have those funny tube feeding moments. What is yours? Share your funny tube feeding stories!

“The only way to get through life is to laugh your way through it. You either have to laugh or cry. I prefer to laugh. Crying gives me a headache.”
Marjorie Pay Hinckley

I was raised on a dairy farm in Idaho. There isn't really much about dairy farming that's funny, but I learned from a very young age that having a sense of humor in the face of large amounts of bodily fluids (bovine or otherwise) can keep you from being thoroughly disgusted. Like the time my brother decided to throw a giant chunk of what he thought was dry cow poop at me while I rode past on my bike, and it turned out to be not dry cow poop, and it was the one time that he happened to have perfect aim. At the exact moment that the flying poop hit me square across the face and knocked me off of my bike, it wasn't very funny but even now I can't keep from chuckling just thinking about it.

Farm humor has translated very well into tube feeding humor. So has the ability to laugh when I feel like crying or throwing things. When Raya was in the hospital the first time, she had been switched from breastmilk to Pregestimil, which I'm still convinced is one of the most foul smelling formulas on the market. She no longer smelled like my sweet little newborn. She smelled awful, her poop smelled awful, and her puke smelled awful. I had planned on breastfeeding her just like I had with the 3 other kids, and being blindsided by the feeding tube and the nasty formula, plus being in the hospital unexpectedly, was weighing heavily on me. I was sad. It hurt. Donny had come by to visit us one afternoon and as the three of us sat on the little vinyl couch in our tiny corner of the shared room, Raya spit up. I cleaned it up, and Donny spontaneously started singing the "Smelly Cat" song from the show Friends. The words are, "Smelly cat, smelly cat, what are they feeding you? Smelly cat, smelly cat, it's not your fault!" I was probably the only one that would find that funny, but it was exactly the laugh that I needed right then.

So many times in the last 3+ years, I've found myself teetering on the edge of an emotional breakdown and HAVE to find something to laugh about so that I don't cry. I never found vomit to be at all humorous until Raya came along. It's still gross but it can be pretty darn funny too. I think my best vomit story was a little incident that happened at a therapy appointment once. Raya was about 10 months old and at that point, she was vomiting 3-5 times a day on average. When we went to therapy appointments, I always sat within arm's reach with a cloth diaper so I could catch the inevitable vomit. On this particular day, I saw "the look" sweep across her face and with catlike reflexes, my hand shot out to put the burp rag in the path of the puke. I was a little overzealous though, and my hand got a little too close to her mouth. Instead of the stream of vomit being soaked up by the burp rag, it hit my hand, shot straight up in the air, and landed directly on top of my head. The therapist and I just sat there staring at each other for a few seconds in stunned silence before we both started laughing. She got me a towel, I cleaned up, and we went on with the session. A laughable vomit episode helped me to not hurt so much over the ones that were so bad that I wanted to cry along with her.

There have been plenty of other things to laugh about too. I did a whole blog post a couple of months ago about the things I hope our neighbors don't overhear while our windows are open. It's open window season again and I cringe every time I say something like, "Raya, PLEASE don't put formula in your teddy bear's tubie. She's not hungry and it just makes her smelly." Or, "I'm sorry, sweetheart, I can't let you eat spaghetti. Do you want some more ice soup?" Some things seem normal until you say or do them in front of someone else and see the look on their face. One night about a year ago, we went out to dinner for Cole's birthday. At that point in time, Raya wasn't really all that interested in food but she liked water. Her favorite thing to drink it out of was a 60ml catheter tip syringe.
I fully acknowledge that it is not normal for a 2 year old to suck water out of a giant syringe. It worked for us though, so we let her do it anyway. She'd been playing with it for a few minutes when she accidentally dropped it on the floor. Right then, a lady who was walking by saw her drop something and was kind enough to pick it up. As she reached out to hand it to me, it suddenly dawned on her that she was holding a giant syringe that a baby had just been sucking on. Her facial expression instantly changed from that of a happy nice person picking up what the baby dropped to equal parts shock, fear and disgust. Her face froze that way and she cocked her head to the side and opened her mouth a little, as if she was going to say something but nothing came out. The way she was looking at it, you would have thought that she had looked down and seen a bloody hatchet in her hand. I smiled and thanked her and she turned and scurried back to her table. As soon as she was gone, Donny and I looked at each other and erupted into uncontrollable laughter. I suppose that's not something that woman sees every day.

I've been known in the past to laugh my way through difficult situations, even if laughing is probably completely inappropriate at that particular time. I much prefer that to crying. There is so much about having a child with medical complexities that is hard and heartbreaking. Laughter truly IS the best medicine. A healthy sense of humor will get you through just about anything. However cheesy this may sound, the lyrics of the song "Smile" sum it up pretty well:

Smile, though your heart is aching
Smile, even though it’s breaking
When there are clouds in the sky
you’ll get by
If you smile through your fear and sorrow
Smile and maybe tomorrow
You’ll see the sun come shining through
for you

Light up your face with gladness
Hide every trace of sadness
Although a tear may be ever so near
That’s the time you must keep on trying
Smile what’s the use of crying
You’ll find that life is still worthwhile
If you’ll just

And that's the key to life with a feeding tube. Learn as much as you can learn, speak up when you need to speak up, cry when you need to cry, but learn to find the humor in life too. The sooner you learn to laugh about poop, puke, and leaking stomach goo, the better you will handle them.

Friday, February 15, 2013

2013 FTA Week: Day 6, Outreach

Today's topic is Outreach: Spread the Word!

How are you spreading the word about Feeding Tube Awareness Week? This is a great day to give a school presentation or tell docs, nurses and therapists about Feeding Tube Awareness Week and share information about it.

I really could split this topic into 2 posts but I don't want to so this will just be really long. If you've read the blog for any length of time, that should come as no surprise. Last year was our family's first Feeding Tube Awareness Week. I had come across FTA on facebook shortly after FTA Week in 2011, so we missed out on that one. Last year though, we were VERY excited. The older kids and I had decided that it would be fun for them to do short presentations about feeding tubes for their classes at school. I emailed their teachers a couple weeks in advance and they were completely on board with the idea. I put together a 3rd and 1st grade level version of the presentation, the kids practiced several times at home, and then did a FABULOUS job presenting for their classes. They are not the most outspoken kids by nature, but having the opportunity to speak in front of their classes about something unique that not many kids their age know about was a great way to boost their self-confidence. (Read about the presentations here.) Ashtyn's picture made it into the Oley Foundation's newsletter in their article recapping FTA Week, which was SO exciting for her! (Click here, it's on page 4.)

When the kids realized that FTA Week was coming up again, they couldn't wait to do their presentations again. Cole ended up changing his mind and decided not to but Ashtyn has been asking me for a month if she could do it for her class. This afternoon, after Raya's horrendous OT session, the little girls and I went to the school to help Ashtyn with her presentation. Kaida was really excited. Raya was just plain bushed from the aforementioned horrendous OT session, so she could have cared less. She's been really attached to Tubie-rina (her Tubie Friend) today for some reason, so they snuggled in her stroller while we waited for Ashtyn's class to come back from lunch.
The other 4th grade class walked past while we were waiting and several of the kids recognized the girls as Ashtyn's little sisters and told them how cute they are. One boy pointed at our "I ♥ a Tubie!" shirts and said, "Hey, I remember them! It was that tube thing!" He must have been in Ashtyn's class last year. :)

When the kids got to the classroom, I parked Raya in the back of the room and started going through things quickly with Ashtyn since we haven't really gotten a chance to practice this week. I had emailed her teacher the PowerPoint presentation so she pulled that up and had it ready to go on the smart board. Ashtyn had walked to the front of the classroom and I was just about to follow her when Raya said, "Mommy, my pants is getting wet!" I hurried to see what the problem was and sure enough, for the first time in probably 2 years, her pump bag had disconnected from the extension tube and everything that had been in her stomach was gushing out of the tube and into the stroller. Formula was running down the leg rest and pooling in the foot rest. Her jeans were drenched. If we had not been in a 4th grade classroom, seconds away from Ashtyn giving a presentation for which she needed my help, I would have been laughing hysterically at the irony of it. I clamped the tube, plugged it back in, wiped the Neocate+stomach off of my hands, and got the show on the road. Still snickering about it though. :)

Ashtyn did a fabulous job. The presentation started out with a VERY abbreviated version of how Raya ended up with a feeding tube. She then explained a little about NG, G, and GJ tubes as well as some of the reasons why people need feeding tubes. Then she talked about the different ways a G tube can be used (pump feeds, syringe feeds, in the backpack, on the IV pole, formula, blended food, etc.). She listed and answered a few of the frequently asked questions, like how long Raya will have her G tube and whether she can play & swim with the tube.
During the presentation, Kaida helped her by holding up whatever it was that she was talking about. Kaida LOVED it! I really didn't do Ashtyn justice this year because we hadn't practiced at all this week so she had to read everything off of the papers. They have a microphone in their classroom, which I thought was a nice touch. Ashtyn is not the most outspoken kid, and seeing her do a presentation like this with so much confidence is awesome. She answered a few of the questions her classmates asked but I had to step in and help when they got a little tougher.

Most of the questions that the kids had were similar to what was asked last year, but there were a few that really blew me away and made me SO glad that we did this presentation. The first one was a girl who asked, "Why did you want to tell the class about feeding tubes?" Ashtyn answered her first and said that we did it because we want people to understand it better. I thought that was a great answer. I expanded on that a little by telling them that it's important to our family that people understand that feeding tubes are not weird or gross (okay, maybe a little gross) and that they're nothing to be afraid of. I told them that now that they've learned about feeding tubes, they'll know if they ever meet someone who has one that the tube is no big deal.

The next question that made me really glad we had done the presentation was, "Is she contagious?" Wow! That's the thing I love about kids. If there's something on their mind, they're going to let you know. I was so glad that she asked this question because it's such a classic example of being intimidated or put off by a physical, outward sign of a disability. I explained that there was absolutely nothing contagious about feeding tubes and reiterated some of the reasons Ashtyn had gone over that would cause someone to need a feeding tube. I also went into a little more detail about the reasons Raya got one.

Another question that was new this year was, "Is it harder to take care of her because she has a feeding tube?" (Mind you, this was about an hour after a HORRENDOUS session with her OT and a very short feeding therapy session that involved nothing more than Raya eating "ice soup" just to help her calm down from the awful OT session, and immediately after her tube disconnected and filled the stroller with formula.) I laughed a little and told them that while Raya is very much like other kids in a lot of ways, the feeding tube definitely makes it harder to take care of her. I pointed out to them that when they're away from home and get hungry, their parents can just grab them something to eat at a restaurant or grocery store and they can actually eat it. With Raya, if we forget any of her equipment or her formula, we can't feed her.

All of the kids and their teacher were totally engaged in the discussion and asked a lot of really great questions, which was exactly our goal. Now they've seen it and now it won't seem so foreign to them if they ever meet someone with a tube. Mission accomplished.

Outreach Part II:
This year, I've also had the opportunity to do outreach on a much larger scale than elementary school. This has been one of the most exciting weeks I've had in a very long time. I don't think there could have possibly been a better way to kick off Feeding Tube Awareness Week than the way I did it this year. About 4 months ago, we (the staff of Feeding Tube Awareness) found out that our founder, Traci Nagy, was going to be receiving the Lyn Howard Nutrition Support Consumer Advocacy Award for her work in starting the Feeding Tube Awareness Foundation. Through what I KNOW is not a coincidence, the award was to be presented at a conference for medical professionals involved in nutrition (i.e. GI doctors, nurses, pharmacists, dietitians, etc.) and the conference was being held in Phoenix. This meant that I got to be Traci's "and guest" at the conference. Even more exciting, we found out that the wonderful folks at the Oley Foundation were going to be sharing their space with us in the exhibition hall during the conference. This was great news because we only recently became an official non-profit organization and are still looking for funding and sponsorship {hint, hint}.

Traci and I met up on Saturday afternoon to get our little display put together.
Hmmm...that picture makes it look tiny but really, we didn't care. We were just thrilled to be there and SO grateful to Oley for sharing their space with us and for promoting FTA Week along with us. They have such a great staff!

The rest of Saturday afternoon was spent at the Oley Foundation's regional conference. We missed the first part but got there in time to join in some wonderful roundtable discussions about enteral and parenteral feeding (parenteral=via IV). It was at this meeting that we had the pleasure of meeting Dr. Lyn Howard, who is the namesake of the consumer advocacy award that Traci was presented with. She is an incredible woman and I wish we could have had more time to visit with her.

The Oley meeting was our first taste of what our weekend was going to accomplish. It was the first time that I've been able to represent Feeding Tube Awareness in person. We sat at a table with a physician, dietitians, a woman who has been on TPN for 20 years and will be for the rest of her life, a man whose son has been on both TPN and tube feeds, and a representative of a local branch of a home health company. Now in the last 3 years, I've been asked a LOT of questions about Raya and her feeding tube, but this was the first time that I've had medical professionals recognize me as part of an actual organization with a valuable mission and purpose and ask questions with the intent of understanding what the experiences of a parent are like. It was a pretty awesome feeling, and that was just the beginning.

Saturday evening after the meeting was over, Traci and I met up with some local "tubie mommas" to have dinner and chat. It was fun to meet them and they loved the opportunity to get together with each other and to meet Traci.

Bright and early Sunday morning, we headed to the session where all of the awards were being presented. This is funny. When we had originally looked at the schedule of events and saw that the awards presentations were at 8:00 on Sunday morning, we thought for sure there would be no more than 20 people showing up. Who gets up that early on a Sunday morning just to watch a few people get some awards?? Well, apparently a LOT of people. About 1,500 people, actually. We walked into the room, which doesn't look big when you're looking at the doors from the hallway, and yeah, it was huge.
That is only HALF of the room and you can't see how wide it is in this picture. HUGE. We got there early enough that I snagged a front and center seat so that I could have a clear view when Traci got her award. As I sat and watched the other awards presented, I couldn't help but think about how amazing it is that in such a short time, what started out as nothing more than a whim has now become an organization with a following on facebook of just under 10,000 fans and a website that is a wealth of information and support for families and individuals with feeding tubes. There just aren't words for how great it is.

Then it was Traci's turn. As soon as I saw her picture pop up on the giant screen above the stage, my eyes filled with tears and I had to dig a kleenex out of my "I ♥ a Tubie" bag. She hadn't even come out on stage yet. Then she came out and I was caught somewhere between wanting to cheer for her and blubbering like a big cry baby.

Traci gave a short speech explaining what Feeding Tube Awareness Foundation is and what we do, and told the story of how it came about. As I listened to her, I realized that she was standing in front of a captive audience of 1,500 medical professionals who now know about FTA. That was a great feeling! She did a fabulous job. I was and am SO proud to be a part of an organization that is making such an impact on families all over the world, and proud of Traci for all of the hard work she has done to make it happen.

After the awards presentations were done, the keynote speaker, a professor from Harvard, gave a brief 45 minute overview of the Affordable Care Act, aka Obamacare. He said that when he teaches about ACA at Harvard, he spends 30 HOURS on it and still feels like he has only scratched the surface, so we got a VERY brief overview. I came away from his address with a couple of impressions. First, the news media REEEEALLLLLLY does a lousy job of presenting facts when it comes to anything...well, yeah, just anything. They put whatever spin they want to on things and people take it as gospel truth. Second, although there are parts of Obamacare that I don't necessarily agree with and don't understand how they will be fiscally possible, there is a lot of good in the act as well. Especially for families with ongoing medical expenses like our family. The thing that I really appreciated him pointing out was that just like other major government acts that have been passed in the past, this act WILL undergo massive changes over the coming years. The ACA as it stands today is not going to be the final deal, but it is a catalyst for major healthcare reform and even though it is not perfect, it is a huge step towards doing the right thing. And that's enough about that.

After the session ended, we made our way out of the ballroom and into the corridor, but not before stopping many times for people to shake Traci's hand and congratulate her. That continued throughout the weekend. I felt like I was walking around with a celebrity. :) The most exciting thing (for me) that happened the whole weekend was the impromptu meeting we had with the representatives from Moog, which is the company that manufactures the Infinity feeding pump that Traci and I both use. We stopped by their booth to chat, and as soon as we explained who we were and what our organization is, they pulled up chairs for us and we sat down and talked. On behalf of the thousands of people on FTA's facebook page, we told them every complaint we hear from parents about the Infinity pump. Bags leaking, bags breaking, pump alarms in the middle of the night for no reason, not getting any instructional materials with the pump (because apparently there is a whole packet that should be sent out with every pump...), and anything else we could think of. They LISTENED. Their product development rep took copious notes the whole time we were talking and then reviewed them with Traci when we were done to make sure he hadn't missed anything. We exchanged business cards and talked about possibly doing more product feedback in the future. I walked away from that "meeting" feeling like if we left and went home right then, it still would have been a successful weekend. Parents, they HEARD you and they were INTERESTED in the problems you have with their product! I hope other people will feel as good about that as I do.

We were able to open up a lot of dialogues with the companies that were in the exhibition hall. We talked to reps from Abbott Nutrition, Nestle' Nutrition, AMT, Kimberly-Clark/MicKey, Byram Healthcare, Nature's One, ThriveRx, Preferred Homecare, Mead Johnson Nutrition, Walgreens Infusion Services, and several others, as well as physicians, dietitians, and pharmacists. We tasted formula (and I'm sorry, Nestle' but the new Peptamen is actually not better tasting than the old Peptamen), and we even ate ice cream that was made out of chocolate flavored Ensure. With sprinkles on top. It was actually pretty good!

Sunday was a really, really exciting day. I can't even describe how great it feels to talk to all of these companies on behalf of thousands of other parents and feel like the reps are actually interested in what we have to say as the consumers. (most of them, anyway...) Monday was more of the same. We had more conversations, exchanged more business cards, and had our picture taken at the novelty photo booth:
There's a bit of a height difference between us. I had to squat down pretty low to get both of our faces in the picture. :)

This week has been exhausting but so very exciting at the same time. If you haven't already guessed that by the number of times that I've used the word "exciting." I have come away from this week feeling like speaking up DOES matter, no matter how big or small your audience. Who knows what the impact of this week will be. I can tell you that the FTA facebook page has grown by nearly 800 people in less than a week. That means that 800 more people have now at least heard the term "Feeding Tube Awareness." There are now 25 4th graders and a teacher who know more about feeding tubes than they ever have before. Who knows, maybe someday (heaven forbid) one of them will need one or have a child who needs one. They will have at least heard of it, and they will remember that it was presented in a positive way. 1,500 medical professionals have now heard about Feeding Tube Awareness Foundation and know that there is a large following on facebook where people who are dealing with tube feeding can find practical support for things beyond the pure medical aspects of tube feeding. Who knows what the impact of that will be. We will probably never know, but the important thing is that we keep spreading awareness in whatever ways we can. If you are the parent of a child with a feeding tube or if you have a feeding tube yourself, connect with others in your area. Find someone who has been doing it longer than you and see what you can learn from them. Find someone who is brand new and share your story with them so they know they're not alone. It DOES matter, and it DOES make a difference.

I also thought it was worth mentioning that this is my 500th post on this blog. I think today is a fitting day to have a milestone like that. I never imagined that the blog I started just so that Raya's medical stuff wasn't taking over our family blog anymore would ever be read by anybody but my mom. It still seems funny to me that anyone is interested in anything I have to say, but I'm so glad that this has been helpful for other people because it is certainly therapeutic for me to write it. To everyone who has ever left me a nice comment or sent me an email, thank you!
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