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Thursday, January 31, 2013

A few random thoughts.

There have been too many "big rocks" to fit in my jar this week. In case you've never heard of that analogy, it goes like this. You have a big jar that represents your life. Then you have a pile of big rocks, a pile of pebbles, a bunch of sand, and some water. If you put the sand in the jar first, you can only fit some of the big rocks & pebbles in before the jar is full. If you put the pebbles in first, same deal. You can't fit everything in. In order to fit all of it in the jar, you have to put your proverbial priorities in order and start with the big rocks, followed by the pebbles, then the sand, and finally the water. Then and only then is your jar really full.

The religion teacher that I saw give this demonstration compared the big rocks to the things that are the most important and urgent in our lives. Back then, I was a single college student and all I had to worry about in life was myself. The big rocks for me then were turning in my homework on time, showing up to class on time, not dying at track practice (didn't die but did get a minor spinal fracture...), and feeding myself since I lived off campus. Those were the things that HAD to be done on time all the time. Including the eating part. College athletes are ALWAYS hungry. Even though I remember exactly how overwhelmed I felt at times with the pressure of doing all of those things AND everything else that I needed to somehow fit into my life, there are days when I would like to take a little vacation back to that point in life just so I could have my world revolve around me again for a little while.
college freshman me doing what college freshman me loved most
The current me could TOTALLY pull off the college freshman me's life (except that I am in no way, shape, or form in the physical condition that I was then and probably WOULD die at track practice). Life is funny like that. We feel at times like we're being crushed under the weight of our responsibilities and can't possibly fit another thing into our lives. Then later on down the road, we look at what's on our plate and laugh at our former selves for being stressed out over what now seems like a walk in the park. I think handling our responsibilities is kind of like exercising. The more we deal with everything we have to do, the greater our capacity becomes. It's kind of a scary thought because I'm not sure that I really want to take on more than I've already got. :) 

I've been thinking about that a lot this week.

It's been a pretty ridiculous week, actually. It's one of those weeks where I didn't intend for so many "big rocks" to happen in the same week, but that's just how it ended up. I've wondered many times if being in school is really the right thing to do right now. Monday was Raya's first GI appointment in 4 months, and we had a huge list of issues to talk about so it took some time & energy to prepare for that appointment. And about 2 hours of my day to actually go to the appointment. I also had to do a couple of very time-consuming assignments for one of my classes on Monday. Raya was supposed to have a follow-up with her surgeon on Tuesday, but I decided Monday morning that we really didn't need to waste our entire afternoon there just to have him pop his head in the door and say that things looked great & he didn't need to see her back. Then at the GI appointment, we ended up scheduling a flexible sigmoidoscopy (aka flex-sig) for Tuesday so that ate up most of the day Tuesday. Wednesday was Raya's sedated MRI that we've had scheduled for a month and couldn't change without having to wait another month or two to get in. Did I mention that I have finals this week? Yeah. I didn't get much time to study on Monday or Tuesday, but I did get a good solid 45 minutes in on Wednesday during the MRI. (Except for when I was distracted by the lady that was blabbing on and on about her baby being a "preemie" but then said that she was born at 37 weeks. Last time I checked, that was considered full term but whatev.) Cole had to have his Pinewood Derby car completely finished in time for the 6:00 weigh-in last night and luckily he and Donny were able to transform it from a block of wood into a cute little red race car very manly specimen of Pinewood Derby awesomeness just in time.

Today has been a relatively quiet day for regrouping & tidying up the kitchen to a livable level again. (deep cleaning will come later) Raya has been feeling really good today, aside from feeling yucky for a little while when she first woke up, being sad every time she asks me for something to eat and I have to tell her no, and telling me "my froat hurts. there's puke in it." We are getting reacquainted with our long lost buddy, Neocate, after 2 leisurely years of ready-to-feed formula. It's much more pale and watery-looking than I remembered it being. Still smells like french fries though. So far she seems to be tolerating it well, knock on wood. Hopefully our old nemeses Neocate puke and bile poop won't come back with it.

Tomorrow we have 2 more appointments and I will be taking my other final. Side note, I was reading through the review materials and one of the essay questions that might show up on the final is "A patient has no peristalsis in the gastrointestinal tract. Explain a possible complication of this condition." I laughed out loud when I read that. PLEASE PLEASE PLEASE let me answer that question on the final!! I could write a novel about the potential complications of no peristalsis in the GI tract. After I'm done with the final (and donating blood & going to Cole's Pinewood Derby on Saturday), it will be time to hit the ground running on the projects I'm working on for Feeding Tube Awareness Week. I'm SOOOOO very excited {blessed, grateful} to be a part of the FTA staff. You won't find another team of people more dedicated to educating and empowering people who are facing the difficult challenge of dealing with tube feeding and the many conditions that lead to it. It's a resource that I wish had been in existence when we were first starting out with the NG tube. I'm excited for this year's FTA Week.

5 things that have crossed my mind today

Here are 5 things that have crossed mind today, in no particular order:
1. Wow, I feel like the meanest mom ever. (repeated in my head every time Raya asked for corn chips, marshmallows, quinoa pancakes, peaches, and crackers and I had to tell her no)
2. Has Neocate always been this watery and white? (after 2 years on Peptamen, Neocate just looks wrong.)
3. How many different ways are there to serve Smarties and Dum Dums?
4. What is up with this diaper rash?! Oh, wait, I let her eat fries with crispy stuff on them even though I knew it probably had wheat. *hangs head in shame* (sorry, Raya, I just wanted you to be happy and you WERE happy while you ate them)
5. Oh yeah, that's what Neocate poop looks/smells like.

Tuesday, January 29, 2013

Elllllllllllllemental.

Elemental. That's the word of the day. (well, it was yesterday when we had a GI follow up. Today's word was enema but we'll focus on elemental for now.) Elemental is not my favorite word and it won't be Raya's either when she realizes what it means.

We had our longest ever stretch between GI appointments: 4 whole months! We saw her towards the end of September and made it clear until the end of January. We did have that little endoscopy/surgery in December and we've exchanged several emails and a couple of phone calls in the last month, but still, 4 months without an official GI visit. It seemed like forever.

Raya weighed in at 14.4kg (31 lbs 12.7 oz) and I already forgot how tall she was. She had gained 1 lb and 3 oz in the 4 months since we saw GI last. Not a great weight gain but she's still in about the 60th percentile for weight-to-height so we're not concerned. I'm really not surprised either considering how many nights I've had to drain whatever was left in her stomach to keep her from feeling awful. She's lost a lot of calories that way so I was actually surprised that she gained at all.

Raya was in rare form yesterday. She's usually really reserved and refuses to talk, especially TO her doctor. She loves her, but she gets pretty bad anxiety when we go to appointments. Yesterday was a completely different story though. Before the doctor came in, Raya was giving me a little performance of a Taylor Swift song that one of her friends at school sings. She kept repeating, "Nevah evah....baa to-dethah..." with one hand on her hip and her bum wiggling. It was both hilarious and adorable. The shocker was that after I had been talking to the doctor for a few minutes, she asked Raya to sing & dance for her and Raya actually did it a little bit. It was barely above a whisper but she wiggled and it was cute.

We had a lot to talk about. I actually typed up an agenda for our appointment. (*pausing for laughter*) Yeah. I printed 2 copies of it, one for her and one for me. I feel like a total nerd handing her an outline but it sure makes it easier to remember everything we need to talk about when it's all right there in outline form. :)

Item #1: We haven't been able to increase her feed rate at all like we had hoped after her EGD & scar tissue removal in December. Bummer.

Item #2: She's had an increase in reflux that actually got worse after she got over the cold and ear infection(s) she had in December/early January. She's telling me 3-4 times a day "there's puke in my mouth," we can hear her refluxing and swallowing, she actually spit up 3 times on Sunday, she's been waking up miserable late at night several times in the last month to 2 months due to GERD and delayed gastric emptying (DGE), and she's even started asking me for Carafate (ulcer med) and Maalox or Tums. A couple days ago she wasn't feeling good and asked me for "the yutty white meh-cine," aka Maalox. I knew she really must not have felt good if she was actually asking for it.

Item #3: She seems to have delayed gastric emptying again/still, and especially with solid food. She's been waking up late at night not feeling well and will still have 4 ounces of formula & partially digested food in her stomach from as much as 5-6 hours earlier.

Item #4: Food allergies and protein intolerances.

Item #5: Should she have a sigmoidoscopy with biopsies to rule out any lower GI involvement since most of her reactions seem to have primarily lower GI symptoms?

Item #6: Should she have a gastric emptying study with solids?

Item #7: Should she go back to an elemental diet? (if I could have typed an audible groan on this one I would have)

So we're feeling pretty stuck & frustrated right now. There's not any rhyme or reason to her increase in reflux. She's on an adult dose of her PPI (reflux meds) and increasing that would not help. Sometimes we go to doctor appointments and the doctor (whichever doctor it happens to be that time) will say something that feels like a punch in the gut. Yesterday it was something to the effect of, "She's 3 years old and this is not going away. Do you think it's time for a fundo?" That knocked the wind right out of my sails. For the record, no, I don't think a fundo is a good idea for her, but this is also not a doctor who is a fan of doing fundos. {FYI, fundo=fundoplication, aka Nissen; anti-reflux surgery that's done by taking the top of the stomach (aka fundus) and wrapping it around the lower end of the esophagus to tighten the sphincter that is supposed to keep gastric contents from refluxing into the esophagus} I have a lot of reasons for not wanting to do it that I won't go into right now, but the main thing is that before we do that, I need to feel like we've done everything possible to avoid it. The first thing we need to do is Item #7 on my list : go elemental. However, before we do THAT, I wanted to do the sigmoidoscopy to see if there are any abnormalities in her colon. That needed to be done before removing food from her diet because if there is any type of food reaction going on, it will go away once the food is removed. It just so happened that there was an opening for a "flex-sig" today, so we did that this morning. The pictures of her colon looked nice & pretty and we don't expect to see anything abnormal in the biopsies.

So now that the flex-sig is out of the way, she's going back on an elemental diet. She'll be going back to Neocate Jr, which is what she was on before we switched to Peptamen Jr 2 years ago. If her reflux improves (and her skin issues improve or go away), then we will know that even though we've never been able to find a diagnosis to support it, food is a problem for her. If that's the case, we will keep her on the elemental formula and add in one food at a time and watch for reactions. However, if that DOESN'T help her reflux, we'll have to do something else. There are basically 2 options and I honestly don't like either one, so I'm crossing my fingers that the formula change will work.

Here's the sucky part. It just seems cruel that after a good solid 2 years of trying to get her to eat, we're now going to take away EVERYTHING but Dum-Dums. It's going to be hard. She may not eat more than 200 calories a day, but there are certain things that she has learned to actually like. She likes quinoa pancakes, tortilla chips, beans, fries, peaches, applesauce, and she even ate a few nibbles of a taco on Sunday night. How the heck am I supposed to A. keep her from finding things and eating them, and B. feed everybody else in front of her? The Dum-Dums will definitely help, but I don't want them to lose their bargaining power. We've already stopped eating certain things because she gets too sad when she can't have any. I've actually found enough alternative ingredients that I could probably make her an allergy-friendly pizza, but that will have to wait. This elemental thing could just be temporary. If it doesn't change anything then we may as well go back to the Peptamen that we have a big fat stockpile of. Which reminds me of the other sucky part, switching back to Neocate Jr means that my 2 beautiful years of ready-to-feed formula convenience are over.

Now that we've done the flex-sig, we'll hopefully be doing a gastric emptying study with solids just to {hopefully} confirm that her stomach is not emptying solids well. I already know it's not, but the test may or may not show that which is why I haven't pushed for it sooner.

Today has been kind of a rough one. Instead of spending the day studying for my chemistry final that I'm planning on taking tomorrow (after Raya's MRI), I spent the morning holding a stressed out, scared, starving and thirsty little girl while we waited for her procedure. Then I spent the afternoon trying to study but had about a hundred interruptions, mostly from my darling children, and couldn't hardly stay awake to study anyway. Then I changed the bloodiest poopy diaper I've ever changed, tried to study some more, got interrupted about a hundred more times, left a message for the nurse about aforementioned bloody diaper, talked to the nurse when she called back to tell me just to keep an eye on her, let the kids make their own burritos for dinner, yelled at them when they were supposed to be in bed and weren't, took Raya's temperature because she felt a little warm (no worries, it's 36.5C, aka 97.7F), and sat down to try and study again. I've been thinking this afternoon & evening that this week feels so ridiculously unbelievably insanely busy compared to even the busiest weeks we've had before, and the funny part is that I don't even care. We had a GI appointment yesterday, flex-sig today, sedated MRI tomorrow, 2 therapies on Friday, and my finals for chemistry and anatomy. Plus everything involving the other 4 members of the family aside from Raya and me. It's busy, but so what? I don't feel stressed or anxious even though I probably should. Maybe that's not a good sign, who knows. Either way, we'll survive the week and keep truckin'.

She was all smiles during check-in but then she got stressed/anxious/scared
Sleeping it off in recovery
Sleeping it off some more in the car
Bring on the Dum-Dums
"snuddeling" with Nurse Kaida


Monday, January 28, 2013

You know you're a tubie momma when...

You know you're a tubie momma when you go to Walgreens late in the evening and buy this: 2 saline enemas for a surprise sigmoidoscopy tomorrow morning, a bag of Dum-Dums because that's all she'll be eating for the next couple of weeks, and a bag of peanut butter M&Ms for Mommy. Too tired and too busy for an explanation tonight but there will be more information later on in the week. Wish me luck on my finals, I need it!

Sunday, January 27, 2013

The dancing hands

There is no shortage of entertainment in this house and most of it comes from the two little girls. They are pretty darn funny, even if I am completely biased. They have great imaginations. Kaida's imaginary horse accompanied us to the grocery store last week and was kind enough to not poop on the carpet while we were gone. (because she was able to morph herself home while we drove in the car so she got there before we did.) Here is Kaida with her imaginary horse, Blue Streak, who eats salad, carrots, gummy bears, and oatmeal, and is not allergic to Wheat Thins but IS allergic to rice like Raya:

And here's one of Raya's dancing hands petting Blue Streak while we were grocery shopping:

I totally played along with them. (hence the picture of Kaida with her arms around Blue Streak's neck.) Hours of entertainment and it doesn't cost me a penny. It was a good grocery store distraction for both of them. Then Raya's dancing hands got in trouble for smashing the bread. And what exactly are "dancing hands," you ask? I introduced them briefly a couple weeks ago when they performed during the entire feeding therapy session. They were very helpful in lifting Raya's fork to her mouth so she could eat her pancake.

Her hands do all kinds of things but it seems like one of them is always falling (or jumping) off of cliffs and needing to be rescued by the other one. We can always tell she's playing "dancing hands" when we hear her say, "Don't worry, I caught-cha!" Words really don't do justice to the dancing hands. You kind of just have to see them in action. I've been fortunate enough to catch some video. This was while I was cooking dinner a couple weeks ago. Her hands were climbing on the hinge of the pantry door and falling off and rescuing each other. (please excuse the sounds of a child emptying the dishwasher in the background. that's a beautiful sound, by the way.)



Here's more from that night:


Here's one from Christmas day when her nose was all stuffy and she didn't feel good:


Then there are the times when she "helps" me with my homework. This video is from last night while I was prepping for a lab practical with Raya on my lap:

That time, one of her hands was named Princess Sella (and was wearing an imaginary pink dress) and I can't remember the name of the other hand. So there you have it. Raya's favorite toys as well as her latest and greatest method of distracting herself from whatever it is she's supposed to be doing. I love it. :)

Friday, January 25, 2013

It smells like stomach in here.

A couple months ago, I wrote a blog post entitled Things I Hope the Neighbors Don't Overhear While the Windows are Open. We're rapidly approaching open window season yet again (woo hoo!) and I shudder to think what we'll be adding to that list. If someone had happened to pass by our windows yesterday, they would have heard things like:
Mommy! Raya's stomach is leaking!
Mommy, I just stepped in Raya's stomach goo.
Look, Mommy, there's green stuff in my tube!
Mommy, can you clean the formula out of my toes?

And then later:
Mommy, it smells like stomach in here. Did Raya puke or did her stomach just leak?

Thankfully, it was rainy all day so the windows were closed. Although open windows would have helped get rid of the stomach smell. And the answer to that question is that her stomach leaked. A lot. All over the place.
The extension tube came unclamped. She insisted that, "It did it itself," but I'm not sure that I buy that story. If only this picture could do justice to the magnitude of this stomach leakage. You can see a little bit of it on her pants. What you can't see is that it's all over the back of her pants and her feet, which left sticky little stomach goo footprints on the tile. You also can't see the drips of stomach goo on the tile, the living room rug, the living room carpet, the hallway by the bathroom, or the floor by the kitchen. If it had been visible to the naked eye, I would have taken a picture. I also wouldn't have stepped in so much of it or knelt on it while I was scrubbing what I could see off of the floors. So yes, our whole house smelled like stomach. (vanilla Peptamen with a hint of partially digested Tostitos and bile) While I scrubbed, I decided that I need to buy Raya some blue corn chips so that I'll be able to tell the difference between formula and chip when I'm analyzing her stomach contents. That way I'll have a better idea how fast (or slow) her stomach is emptying solid foods. And while we're on the subject, no, I never imagined that I'd be A. analyzing my kid's stomach contents, B. completely fascinated by analyzing my kid's stomach contents, and C. thrilled to have the ability to prevent vomits by rapidly emptying said stomach of said stomach contents for analysis. That was sure as heck never in any of those parenting books I skimmed through.

Wednesday, January 23, 2013

Educational visit to the allergist

The food allergy saga continues. Since Raya FINALLY tested positive for a few food allergies in September, we've done pretty well with avoidance of those foods. There have been a few exceptions when we've either decided that the risk of a reaction was low enough or just didn't want to break her heart so we let her have a small amount of something. Some of those exposures have been fine but others have blown up in our faces. To date, she does not have any anaphylactic allergies, but she has tested positive for peanuts, tree nuts and shellfish which could all potentially become anaphylactic for her.

(backing up...) Ok, so immunology is something that I'm still (and probably forever will be) trying to wrap my mind around. I've read textbooks, written essays, answered test questions, and researched on the internet but there's a lot to learn and understand. There are some tricky aspects to food allergies. For one thing, a food allergy can have very different effects on different people. A particular food might make one person vomit and someone else break out in hives. Reactions vary and severity of reactions varies. Then there's the IgE mediated vs non-IgE mediated reactions. This is something I've just been learning about in the past month. After our visit to the allergist this morning, we've clarified that Raya does seem to have both IgE mediated allergic reactions AND non-IgE mediated reactions to some foods. With others, there is either an IgE reaction OR a non-IgE reaction.

First round of skin testing, Feb 2011. Even the positive control was negative. Fail.
(backing up again...) IgE mediated allergies are the ones that scratch testing and blood tests (RAST) can identify, although neither one is completely accurate. We did at least 2 rounds of scratch testing (maybe 3) before we finally came up with some mild positives to wheat, rice, milk, peanuts, tree nuts, shellfish, chicken, and oats. Why did it take multiple attempts and 2 yrs 9 months to finally confirm that she was allergic to those things even though we knew long before that that she had reactions to some of them? I think it was due in part to the complete lack of exposure for a very long time. Knowing what I've learned recently, some of the reactions she has are non-IgE reactions, aka food protein intolerances. What's the difference? So far, this is what we have seen:

Raya eats crunchy peanut butter. Raya vomits 15 minutes later. (IgE mediated food allergy)

Raya's big brother Cole eats a banana. 10 minutes later, hives appear around his mouth and a couple minutes later he's puking his guts out. (IgE mediated food allergy and/or oral allergy syndrome (OAS))

Mommy smears cashew butter on Cole's cheek. 10 minutes later, the whole cheek has broken out in hives. (IgE mediated allergy)

Raya finds and eats a peanut M&M. Raya's mom sucks as much of the peanut M&M out of her G tube as possible. Raya's throat gets phlegmmy (is that a word??) and she clears her throat a lot for the next half hour. (IgE mediated allergy)

Raya eats wheat. Between a few hours and a couple of days later, Raya gets dotty rash around her mouth & nose, has diarrhea, and gets massive diaper rash. (non-IgE mediated reaction/protein intolerance)

Raya gets into cream cheese frosting before preschool. Raya gasses out her preschool class the whole 2 1/2 hours and poops 3 times in one day as opposed to the once every 1-2 day norm. Raya's poor little bum gets a rash and looks like it's been burned. (non-IgE mediated reaction/protein intolerance)

Tiny baby Raya drinks a bottle of breastmilk with rice cereal blended in for added calories. 1-2 hours later, Raya covers herself and her mother in vomit and continues to dry heave for a bit while at a cousin's wedding reception. (awesomeness, right?) (non-IgE mediated reaction/protein intolerance)

Raya smears pureed black beans & rice all over herself. Mommy cleans it off and sees that everywhere that the rice touched, Raya's skin is bright red. (?? but probably IgE mediated reaction ??)

So yeah, there's a difference and I'm still learning which symptoms indicate which type of reaction. Realizing that there's a difference between IgE and non-IgE reactions helped me to make sense of why it took us so long to get positive allergy test results for rice and milk, even though we knew from the early months that she had a problem with both of those.

We had a good visit with the allergist today. Well, except for the part about Raya crying through pretty much the whole appointment. Poor girl just gets stressed out at doctor appointments.
We have the BEST allergists. They are both wonderful to work with, both for me and for the kids. It's not uncommon to have a long wait when we go there but the last couple of visits have been much quicker and they've added a 3rd doctor to help with the patient load. Anyway, we had an early appointment this morning so we had a little more time to discuss things. Probably at the expense of everyone else on his schedule today, but that shoe has been on the other foot plenty of times.

We talked about the recent accidental food exposures (which were not so accidental on Raya's part) and the reactions she had to them. We discussed the differences between IgE and non-IgE reactions and agreed that she has some of both.

The theme of her life has been trial and error, and that will not be changing anytime soon. He said that they are seeing more and more kids with multiple types of allergies, as well as other similar conditions, and that figuring out what is and is not okay for them to eat is a process of trial and error. The potentially serious/fatal food allergens like peanuts, tree nuts, and shellfish are things we will avoid completely and just assume that she will always have those allergies. The foods that have less serious potential reactions are things that we will have to use judgement and more or less experiment with to see how they affect her. She may be able to tolerate small amounts of certain things, and she may eventually grow out of some of these allergies & intolerances. For now though, we are doing our best to avoid them completely. We will also not be adding any new foods until after we see GI again and possibly do some testing. Right now, she's eating quinoa and quinoa-based foods, corn/corn-based foods, peaches, applesauce, white potato, egg, black & pinto beans, and corn pasta w/spaghetti sauce. There are still question marks about solid food in general and possibly about quinoa, but for now we'll leave things as they are. At least until we see her GI doctor next week. I'm anticipating that being a busy appointment because we have a lot to talk about.

Tuesday, January 22, 2013

3 years later...still a tubie

This weekend we passed the 3 year mark of when Raya got her NG tube. I let it come and go unannounced. I didn't feel like commemorating it and it felt good to not acknowledge it. I just wasn't in the mood for it this time. Even if she was the cutest little red headed baby with a tube up her nose that you ever did see.

When she got her NG tube, it was not my choice. I was stressed, I was scared, I was frustrated, I was confused, and I was sad. (and completely grossed out by the fact that one of our roommates during that hospital stay had head lice but that's a story for another day) There's a line from a song that says, "Every new beginning comes from some other beginning's end." Raya getting an NG tube was the end of motherhood as I had previously known it (i.e. being in charge of what, when & how she was fed and being able to handle her care without a herd of medical professionals) and the beginning of something completely unlike any challenge I had ever faced before. Nobody EVER starts a family and plans on life including this:
But for us, it did. It does. In the beginning, I honestly thought we'd have the tube for a couple weeks, maybe a month or two tops. I thought we'd do some tests that would reveal a diagnosis, which would dictate a course of action, and then we'd fix her and be off on our merry way. (*pausing for laughter...*) Clearly, it didn't happen that way. I'm not sure that it EVER works out that way for ANYBODY, or at least not without some bumps in the road between point A and point B.


For some reason, the anniversary of Raya getting a G tube doesn't make me feel the same way that the anniversary of the NG tube does. The NG tube was not our choice. It came seemingly out of nowhere. It wasn't an imminent life-or-death matter, but it was serious and happened quickly. I had no idea it was coming, let alone everything that came after. The G tube, however, WAS our choice. We could have kept going with the NG. I flip flopped back and forth for months about getting a G tube, but ultimately, it did not happen until I was ready for it. That felt like some tiny semblance of control in an out-of-control time in my life.

In the last 4 months I've done a lot of soul searching. Not really because I wanted to, but because things just popped up that made me take a step back and look at everything. The last 3 years have been the roller coaster ride from... yeah. It seems to go in spurts of high maintenance and low maintenance (and I'm actually grateful that we're lucky enough to HAVE phases of low maintenance!). We've had huge setbacks. Moving from a G tube to a GJ tube was a huge setback. Having the vomit continue and new problems came up with the GJ tube was a setback. Eventually we got past it and went back to a G tube, relatively vomit-free. Then she started putting things in her mouth and occasionally swallowing them. Then she started to actually eat things. We cruised along for a while feeling like the worst was behind us and it was all a matter of getting her to eat enough of the right foods so she could get off the tube. We even got to the point of only needing 4 bolus feeds per day that were fed at the maximum pump rate over 25 minutes. Then we moved and she started preschool. A double whammy that her little system just couldn't take. Back on the pump for 8 hours a day instead of 1 hour and 40 minutes. Food allergies took away pretty much all the food she liked. And so on.

When we get to the times where things are going smoothly, I start to feel like I'm creating drama where there really isn't any. I start to feel bad about the fact that I don't push her harder to eat more food. She eats SO well at in-clinic feeding therapy, so why can't we get her to eat more at home? I start to feel bad about the fact that she's not potty trained, and worse about the fact that the thought of trying just makes me want to lay down and take a nap. Am I the problem? Am I holding her back when I should be pushing her forward? Maybe, but I don't think so. We've been so blessed with wonderful friends whose kids are on similar journeys, and when we're doing well and any of them are not, I feel like I'm stressing over nothing and making a big deal out of "problems" that are just a drop in the bucket of what others are dealing with. I get self-conscious about using the term "special needs." I feel like her special needs aren't "special" enough to fall into that category. Especially when I hear so many "Well she looks healthy!" and "If it wasn't for the feeding tube I never would have guessed that there was anything wrong with her." and other well-meaning comments. She's over the worst of it and now she just has a feeding tube. Doubt creeps in, and the more distance there is between now and the crazy vomiting in & out of the hospital phase, the harder it is for me to remember why we are where we are. Sometimes I read through old blog posts and think, did we really do that? Did I really used to have to wash at least 1 load of laundry a day that was primarily vomit laundry, and wake up 4 or 5 times a night for meds & feeds, and on and on... And yes, I did. We did do all of that, it happened, it was real, and looking back on those first days and weeks with the NG tube, I can see now that my initial expectation of a couple of months tops was completely and utterly insurmountable for a little bitty girl whose body just couldn't get things working right. Apparently so was 3 years.
February 2010, 3 months old
Back then I hoped that the tube would be short term. 3 years later, it's bittersweet to know that it's not. Some days more sweet than bitter, and some days more bitter than sweet. Everything with her requires more thought and planning than it does with the other kids. Everything is harder (except for loving her, that's a piece of cake). Taking care of her requires a whole other set of parenting skills that I somehow did not acquire in my pre-Raya years with the other 3 kids. Thanks to a merciful Father in Heaven, for all the bitter, there is plenty of sweet. The tube keeps her full of all the good stuff she needs to grow and be healthy. It makes up for what she is not able or ready to do yet. Heaven only knows how long she'll have it, but thank Heaven she does because as long as she has the tube, we have a healthy girl. Even so, if anyone had asked me 3 years ago where I thought she'd be at this point, 75-90% tube dependency with multiple food allergies and a plethora of other little diagnoses is NOT what I would have said. But it is what it is. My sweet girl is full of life and energy (and vanilla flavored Peptamen Jr) and I wouldn't have it any other way, tube and all.
I don't know what the next 3 years will bring. There are still a lot of unanswered questions. She's having issues right now that she either hasn't had before at all or hasn't had for a long time. I still have a nagging feeling that we haven't turned over the right stone yet and there are still missing puzzle pieces to be discovered (and all sorts of other figures of speech about figuring something out). I've always operated on the assumption that she will, at some point, be off of the feeding tube. I still think she will, but lately I've been entertaining the thought that we may discover that she has some condition that will necessitate some degree of tube feeding long into her childhood, teenage years, and maybe even adulthood. And you know what? I'm okay with that. I hope that's not the case, but if it is, it is. Worse things have happened than someone needing a feeding tube. It's worked pretty well for us these last 3 years.



 
And that's all I have to say about that. (Now I'm going to go make another attempt at scrubbing the smell of Raya's stomach off of my hands. Unfortunate stomach content spill. Such is the life. :) 

Monday, January 21, 2013

Weekend visitors

We were so happy to have Raya's grandparents come into town this weekend! We only get to see them once or twice a year so the kids get really excited when we get to see them. They came on Friday evening so they could be here for Cole's baptism on Saturday. The kids spent all of Friday evening snuggling on the couches and playing with them.

On Saturday, we all got dressed and went to the church for Cole's baptism.


After the baptism, we had all of the family & friends that came over for lunch and birthday cake. It was a great day and we really appreciated everybody's support. The kids had a blast playing with their cousins & friends but by the time everybody left, Raya was worn out. She didn't seem to be overwhelmed by the noise & excitement but it seemed to zap her energy.

She really loves her grandpas. Friday night and Saturday morning, she had been playing with the grandpa that was visiting for the weekend. Then on Saturday afternoon, the other grandpa was at our house too. At one point, she was looking for the out-of-town grandpa and she stopped, put her hand on her cheek, looked at me and said, "Mommy, there's TWO Grandpas!" And she sure does love them both!
Everybody was pretty tired that afternoon so the kids all laid down and watched a movie. Raya has decided that she really likes her new "blanket" that her Aunt Joanne sent her for Christmas and insisted on being covered up with it.
Later in the evening, we got ready to go out to dinner.
That turned out to be a marathon of an evening. The place we were going to eat at was PACKED when we drove up. The line was out the door and down the sidewalk, so we decided to drive a couple miles and go somewhere else. That turned out to be a bad idea because EVERY restaurant was just as packed as the first one. We decided we'd just put our names in and walk around the store across the parking lot while we waited. They said it would be about an hour wait if we ate on the patio, which was fine since the weather was so nice.

We walked around the store for a while and the kids got hungry so we got them some pizza to hold them over. Except Raya, because she had fallen asleep as soon as we got in the car. We had just adjusted the dosage on one of her meds so between that and being worn out from such a busy day, she was sleeping hard.
She slept in the cart the whole time we were at the store, during the walk across the huge parking lot, and for the whole time we sat outside the restaurant waiting for a table. She was SO tired and I will admit, I very much enjoyed the snuggle time.
She kept me warm while we waited. It turned out to be MUCH longer than the hour they had told us originally but after you've waited for a while, there's no point in leaving so we stayed. Cole and Grandpa played rock-paper-scissors and the girls played charades with Grandma.
We had gotten there and checked in at about 6:15 and it was about 8:30 when they finally took us to a table. Outside on the patio. By then, Raya had taken a good nap and was waking up, and not in a good way. She was a very unhappy girl. She was overdue for a formula feed because we hadn't planned on being gone that long so we had left the pump at home. She was crying when we ordered our food. She heard me say the word "fries" and decided she wanted some, so for the next 20 or 30 minutes she cried about wanting fries. It was sad. I thought I was going to have to just leave but then the food finally came. The fries were the kind that have potato skin on the ends so she wasn't too sure about it at first. Then she dipped one in tartar sauce and liked the tartar sauce so she ended up eating a lot of tartar sauce and a couple of fries. We didn't stay very long after the food came. Raya was too tired and too upset to stay. We packed everything up and headed home just after 9:00, which was WAY too late for my poor kiddos who are used to going to bed at 7. It was not exactly how we had planned the evening but we still had a good time. When we got home, she snuggled on the couch with Grandma (who just had surgery on her hand last week).

Sunday morning we got up and went to church. Afterwards, the kids wanted to go enjoy the great weather so Grandma & Grandpa took them outside to ride bikes.

Grandma & Grandpa were enjoying the lovely weather too. Much warmer than the single digits they've had at their house! Mom got some cute pictures of Raya and Dad.
So sweet! We had dinner and watched Goonies and then the kids went off to bed, but not before a few more snuggles with Grandma.

This morning everybody got dressed and played for a while.
Grandpa played cards with the girls.
And they snuggled.
Raya wasn't feeling too good until she got her medicines and had a little formula in her stomach. Then she was ready to go. We had a few hours before Grandma & Grandpa had to be at the airport so we decided to meet up with some friends at the zoo. It was PACKED. The regular parking lot and the overflow parking lot were both full, so we had to park REEEEEEEALLY far away and walk. The weather was perfect so we didn't mind too much. Once we got inside the zoo, Raya didn't want to be in the stroller at all. Who could blame her. You can't really see the animals when you're sitting down. She would jump up and run to an exhibit, look at the animal for a few seconds, and then get back in the stroller.

After a couple hours of walking around, the kids were getting worn out and we still had a long trek back to the car. We said goodbye to the friends we had met up with and headed for the exit. The exit is cleverly located in the gift shop, so as we were about to walk into the gift shop to leave, we saw this fabulous window display that made me think of all my tubie momma friends:
You know you're a tubie momma when you can have a detailed conversation about poop while you're eating lunch together. Or via late night text message, middle of the day facebook message, etc. We talk about poop a lot.

Moving on... Raya was just plain...pooped after all of that excitement in the very warm weather. She fell asleep in her stroller before we even got back to the car. Must be nice to have a nap while somebody pushes you around in a stroller. She was so tired that she slept through dropping Grandma & Grandpa off at the airport. Grandpa tried to wake her up but she was just plain out cold. Everybody was worn out when we got home. Ashtyn laid down on her bed and cried because she was sad that her grandparents had gone home. It took Raya a while to realize they were gone. She came in my office at about 5:00 and said, "Where's Grandpa??" She wasn't happy when I told her that he had gone back to his house. We sure had a good weekend!



Friday, January 18, 2013

Going, going, gone!

I'm happy to report that Raya had a productive day at feeding therapy today. Before we left to go to the appointment, I asked in a thinking-out-loud sort of way, "What food should you bring to therapy today?” To which Raya replied, "CHEE-YIPS!!” To which I replied, "Nope, no chips. How about peaches?" We decided it would be a good idea for Kaida to bring some peaches too so that the girls could eat together. That didn't exactly happen because Kaida wolfed hers down in about 7 seconds, but it was a nice idea. :)

Raya started out slow. She got peach juice on her fingers and really REALLY wanted it off. She's funny about having her hands wet/dirty. Sometimes she doesn't even seem to notice or care and other times she wants it cleaned off YESTERDAY. She started taking bites a little at a time with a lot of playing and goofing around in between.
This is her "Um, Mommy, you need to clean up that peach juice" look. Please ignore the red eyes.
Slowly but surely, she chipped away at her cup of peaches...

...AAAAAAAND she got distracted. A lot.

But finally after 40 minutes, the cup of peaches (including most of the juice) was GONE!

Ta-da!

All done! I've lost count of how many fruit cups she's eaten a few bites of, but this was the first one she's ever finished. Good job, Ray-ray!!
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