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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.**

Wednesday, December 25, 2013

Merry Christmas from Raya & Family

(Raya ate a blue dum dum right before we took the picture. Not a Smurf.)

Monday, December 16, 2013

I'm done.

Today, I'm done. I'm done with going to another doctor appointment and trying to carry on a conversation with the doctor and keep Raya from jumping off of things and emptying the soap dispenser at the same time. I'm done with having the same discussion that we've had time and time again for the last year (well, the last 3 years and 11 months, actually). I'm tired of doing the same things over and over and hoping something will change but I'm also tired of doing dozens of different things hoping that one of them will make a difference when they never really do. I'm done trying to find answers to questions that just flat out don't have answers. I'm done with speculating whether changing her diet, her feed schedule or her medications will change anything. I'm done with talking about going out of state again for testing that may or may not end up being productive or beating our heads against the wall trying to get insurance to approve a minimally invasive procedure that actually COULD make a difference. I'm done with wondering what has caused this week's mysterious rash or strange symptom or behavior and if it was food related or not. I'm tired of the vicious cycle of imposing extreme dietary restrictions, seeing things go well, thinking we're being too extreme on the dietary restrictions, relaxing on the dietary restrictions, and then being rudely reminded by unpleasant symptoms WHY we're sticking with the dietary restrictions. I'm also tired of trying to explain the dietary restrictions to other people who either judge us as being overly cautious and paranoid or assume that we must subscribe to the same extreme views that they do about what ALL people should be avoiding in their diets. I'm tired of trying to determine if things are better or worse or if changes are because of this or that or the other thing, or if a behavior is an indicator of something that's wrong with her, or if it's just her being her or her being a 4 year old. I'm just done.

You know what else I'm done with? I'm done with people who are convinced that their personal philosophy on food and diet are the absolute truth and everyone who believes or does differently than them is wrong, and is ultimately harming their family by allowing them to eat or drink certain things. I'm done with people who don't understand that for some people, food is more harmful than the so-called "chemical formulas" that can and do sustain life and help people who would otherwise starve to death or suffer constant misery because of food to instead THRIVE and live healthy lives. I'm just tired of not having the answers I need, and I'm tired of the people who think that they DO have the answers to things they know relatively little about.

*deep breaths* Rant over. For now.
 But yeah, I'm just done. I'm ready for a vacation from all things medical. Finding out on Friday that our wonderful, amazing neurologist had resigned and knowing we'd have to start over with someone new was kind of a big blow. We only see her a couple times a year so I can only imagine how other people feel who need to see neuro on a more frequent basis. Today just started off on the wrong foot altogether with Kaida waking up sick again AND Cole saying he had a sore throat & needed to stay home. I try really hard to be courteous and keep germs at home, and I really didn't want to send him to school and then get a phone call half an hour later that I needed to pick him up so I kept them both home. Selfish as it may be, I was really frustrated because having 2 kids at home meant that I did not get to any of the things I needed to do while Raya was at school this morning. I had planned on doing some Christmas shopping, getting packages ready to mail, and mailing them and none of that happened. (then I felt like a jerk for being annoyed that the kids were sick & messed up my plans for the day) After I picked Raya up from school, her respite provider came and for whatever reason, they were so loud and rowdy the whole time she was here that I couldn't hear myself think and didn't get much of anything accomplished all afternoon either. I was relieved when it was time to get out of the house, even if it was just to go to another appointment.

I was not looking forward to this GI appointment because I knew Raya's weight gain was not going to be good and was actually afraid she might have lost weight. We've had problems in the past couple of weeks with her feeding pump not working correctly at night and getting clogged but not alarming so that we'd know to fix it. Because of that, there have been several nights where she hasn't gotten as much as 1/3 of her calories for the 24 hour period and it's really difficult (or just plain impossible) to make up for that. Then there was the week that she was either sick or just having terrible motility and wasn't getting all her calories. So yeah, I anticipated bad news on the scale and it wasn't as bad as I was afraid it might be but it wasn't good either. She went from 15.0kg to 15.1kg, so she gained about 3 ounces in the last 2 months. Who knows how much she actually lost & gained, but at least she netted a 3 ounce gain. Measuring her height at the appointment turned into quite the circus act. The tech was new, bless her heart, and did a really good job of getting Raya to stand up really tall. About 2 cm too tall. :) As per usual, she also wanted to redo Raya's BP after it came up at 84/55. I was all excited that her systolic was above 80 and the machine didn't beep but she thought something had gone wrong and was going to redo it until I told her that 84/55 was higher than usual.

Now that Raya is a big girl, she always wears the "big girl dresses" at the doctor's office. She wasn't too happy about having a blue dress until she saw that there were boy AND girl astronauts on it. That made it okay.
And yes, I am the mom that let the kid lay on the floor and color. In honesty, that floor is probably cleaner than our floor at home. You pick your battles.

I had showed Raya a picture of her friend Alexandra who happened to be at a different doctor's office at the same time. Alexandra was wearing a "tiger dress" so we sent her mom a picture of Raya in her blue astronaut dress. Alexandra replied that blue was a good color on Raya. These kiddos are so funny! It's kind of sad that they think nothing of complimenting each other's hospital gowns but it's adorable at the same time.

Now that she doesn't freak out and vomit all the time anymore, the worst part of taking her to the doctor is keeping her from bouncing off the walls. I realize that most 4 year olds are pretty busy, but dang this kid is busy. Whoever designed the flooring in these exam rooms didn't think things through very well either because all she ever wants to do is play on the multicolored tiles that are right in front of the door. It's amazing more kids don't get whacked by the doors. I can't imagine she's the only kid that does it.
When she wasn't hopping from square to square directly in the path of the door, she was trying to climb between the bench I was sitting on and the chair, or trying unsuccessfully to get hand sanitizer out of the empty dispenser on the wall, or trying to hide behind the exam table, or trying to get soap out of the soap dispenser above the sink, and so on. Busy child. Of course any time I get after her and tell her to settle down, she pulls one of these on me:

When the doctor came in & saw the height that the MA had written down, she thought it seemed off so we went and measured her again. That one seemed off too, so she had the MA do it again. Her measurement was 3cm shorter than the first one she had done so they did it again at the same spot they had done it before. Eventually we kind of just concluded that she's about the same as she was at her last appointment and left it at that. (right around 99cm tall) Height is much more difficult to measure than weight, apparently.

This appointment wasn't as frustrating for me as some of our other recent ones have been but clearly, it was not one of our most helpful ones either. I left feeling like I just want to throw everything we've been doing out the window and start from scratch. I'm frustrated. I'm not frustrated with the doctor, with myself, or with Raya, I'm just frustrated with the entire situation. I'm frustrated that everything is such a slow process and that any and all signs of problems are so subtle but still significant enough to worry about. I knew fairly early on that our feeding tube journey was going to take time and involve a long and complicated process but I guess there's no way that anyone can ever truly anticipate exactly what that entails.

Sometimes I feel like we're just nit-picking to try and find things to micromanage. Weight gain is one of those things. I went into the appointment knowing that we have had too many days recently where Raya did not get enough calories for one reason or another so I was expecting poor weight gain, if any. Because I knew WHY it was going to be like that, I was not concerned about the lack of weight gain. The doctor, on the other hand, was a bit concerned and wants us to start adding calories by adding a small amount of oil to Raya's food or formula. While I see her point, I don't feel like we need to do that yet. I think it makes more sense to get her back on track with hitting her calorie goal every day for a couple weeks, weigh her again, and THEN add oil if she's still not back where she needs to be with her rate of weight gain. Another concern I have with it is that adding oil (which is FAT) will most likely cause her motility to slow down more because when fat hits the duodenum (first portion of the small intestine), hormones are released that signal the stomach to slow down its rate of emptying because it takes longer to break down fat. Slowing her motility even more would obviously be counterproductive so I'd rather give her body a chance to see if it can catch up without the oil.

Medications are another thing that has me frustrated. (She is on everything she's on for reasons and anybody who wants to challenge me on any of them will be playing with fire. Whether or not we've made the right decisions with putting her on any particular medication at any point in time is not up for debate. Just had to get that out there.) The thing that frustrates me is that even WITH the medications that should be controlling her out-of-control reflux, she's still not quite where I think she should be with it. She's taking 2 different types of reflux medication (a PPI and an H2 blocker) and taking either Tums or Maalox for breakthrough symptoms, and the Tums & Maalox are becoming a more frequent thing recently. On one hand, it makes sense that her reflux has been worse because her motility has been worse. When your stomach isn't emptying at a normal rate and food & liquid are hanging out in there longer than they should be, there is more opportunity for stomach contents to be refluxed into the esophagus. If they leave the stomach like they're supposed to, there's not as much there to reflux. Slower motility=more reflux. It's kind of like a clogged drain. If the drain can empty like normal, the sink doesn't overflow. If the drain clogs & slows the rate that the sink empties at, eventually the sink will overflow. We're addressing the heck out of her reflux right now, but without any improvement to the motility, it's futile. (Where's the friggin' Drano when you need it?!)

So back to the medication issue, we had been discussing at a previous appointment that we both felt like we should wean Raya off of one of her reflux meds (the H2 blocker). She had done much better on just a PPI than she had on just an H2 blocker, and we don't want to kill ALL of her stomach acid production since obviously stomach acid is a necessary thing. {note: lest anyone be tempted to tell me that we're doing her harm by having her on any of these meds at all, let me just say that until you have personally experienced how horrible acid reflux feels, just don't say anything at all. in the 4+ years that she's had reflux, the ONLY thing that has controlled it well enough for her to be comfortable is PPIs so please don't tell me I should be taking her to a chiropractor, using xyz essential oil or supplement, or putting apple cider vinegar in her stomach instead. if they work for you, great but they do not work for her. stepping off soapbox} The plan had been to start weaning her off of it in the last 2 months but then her motility & reflux started getting worse and we didn't do it. Today we decided to do it anyway and see what happens. THAT is what I hate. Her whole life it's been, "Let's do this and see what happens." It's not like there's really a different or better way to do things concerning the medical issues Raya has, but I liked living in my little fantasy world where I thought that when you had a medical problem, you went to a doctor, they did tests and diagnosed you, told you what to do to fix it, and you went off on your merry way. Oh to be so blissfully naive again. Don't get me wrong, there are plenty of ailments that can be treated rather quickly & simply, just not the ones we're dealing with. Living in a world of trial and error gets old and today, I'm just done with it.

A few months ago, I had really gotten my hopes up that we were either going to be able to do something here at our hospital to help her or else go out of state to a motility center again where we'd be more likely to get the insurance to approve what we wanted to do. Frustratingly, the things that were discussed never moved past the discussion stage even though I had made it clear that we were on a strict timeline because of the baby, so now none of what we talked about will be happening anytime in the near future. In light of that, I am giving myself permission to take a break. Instead of stressing about what we'll be doing next in order to push things along, I am giving myself permission to do what works and leave it alone. We're not discontinuing anything important, I'm just taking a break from trying to get her back to where she was before we moved 15 months ago (meaning tolerating bolus feeds of 8 1/2 ounces in 25 minutes rather than 2 hours) since that is obviously not happening anytime soon. We will still be letting her eat whatever we can get her to eat by mouth and encouraging her to try new textures & tastes, but I'm not going to obsess over it anymore. We're going to squeeze in one more weight check & one more GI visit before the baby is born (as long as she's on schedule) and then we'll space out our next visit a bit more than we've been doing recently too. I'm tired of micromanaging, so we're just going to stop doing it. We'll keep managing her care as needed, but I just don't have the energy physically or mentally to keep obsessing over every detail like we have been. Some things just don't make sense and some questions just don't have answers, and sometimes it's best to just let it go and do what gets you by.

To sum up the appointment, we will be decreasing & then discontinuing the H2 blocker and then waiting a week or two to see how her body handles being off of it completely before we will know if that's a good thing or not. We will be doing whatever needs to be done to ensure that she gets all of the calories & formula she needs every day, which entails a lot of swearing in my head at the feeding pump lately, and a lot more checking up on the pump. (For whatever reason, the pump tubing has been getting clogged a lot and the pump doesn't always alarm to let us know that it's not flowing like it should be.) We slowed her feed rate down and I've now decided that if slowing it down more is what needs to be done, then I'm okay with doing it and someday we'll start working back towards faster feeds again since her body is telling us that now is not the right time. Oh, and after discussing it, her doctor also does not believe that the vomiting she had going on a couple weeks ago was a virus but rather just a couple of really bad motility days. Given that there were absolutely no other symptoms whatsoever, I'm inclined to agree with her even though that really stinks. We're leaving everything else the same until the weight check in 1 month and we'll see how she looks at that point.

I have to say that since her really off motility week when we basically gave her stomach a reset by doing Pedialyte at a slow rate & then working back up to full formula at a slower bolus rate, she has been a MUCH happier kid. It blows my mind that slowing her down by half an ounce per hour over the space of 2 hours could make a noticeable difference for her but it really has. She just seems to feel better overall. I hate that it takes going backwards yet again in order to get her feeling better, but it is what it is and I'm glad she's feeling good. Fingers crossed that she won't be sick on Christmas this year like she was last year!

By the time we were done at the doctor's office, everybody and their dog had tried to call and/or text me and Raya was bouncing off the walls even more than she had been when we got there. We stopped at the desk on the way out to schedule and thankfully I asked about scheduling a neuro appointment for March too. I'm still so, so sad that our neuro has officially resigned, but thankfully the GI made a couple recommendations for doctors that she thinks we would be a good fit with. I trust her opinion because let's face it, she and I have spent a lot of time together in the last 4 years so I think she knows me pretty well. When I asked at the front desk about scheduling, they told me to call the main office ASAP if there was a specific doctor I wanted to see or else we would be assigned to whoever the neuros decided to assign us to when they divided up all of our doctor's patients. As soon as we got home, I called and was able to get in with one of the doctors that had been suggested by our GI within the time frame that we needed so that's a huge relief. A lot of the local moms have told me that they love the one we're going to be seeing so that makes me feel a lot better too.

When we got home, Raya continued to bounce off the walls until she had been sitting at the table for a few minutes after she had her night meds. Normally she falls asleep about an hour after the meds, but this time it only took 20 minutes. I guess acting crazy all friggin' day long really took it out of her! She's pretty adorable when she's asleep, and especially when she falls asleep clinging to the back of her chair with her mouth gaping open.

Now that I've been nice and negative, I have to say that I'm so grateful for people who are inspired to say the right things at the right times. I was sitting in church yesterday and really just felt like getting up and leaving. Pregnancy makes me restless, I guess. Right now, I couldn't really even tell you what the topic of the lesson was but a sweet friend of mine who has a little boy that was born with some heart defects made a comment that made me glad I hadn't left. She talked about how difficult it was for her to make decisions about his medical care early on in his life and how she realized that she was trying to do it by herself and not letting God guide and direct her like He was willing to. Her son had an NG tube for a while and there was discussion about doing a fundo and G tube, which in hindsight was not necessary and would not have been the best thing for him. She listened to the spirit and decided against doing the surgeries and it was absolutely the right thing for him. In listening to her talk about her experiences and realizing that she was trying to do too much herself, I knew that once again, I have been doing the same thing. I need to stop taking so much of the burden of figuring everything out on myself and let God help me more. It's hard to do. I'm a problem solver. I want to understand the whys and hows of everything so that I can fix what's wrong but 4 years later, we're still chasing whys and hows that we may never understand fully and maybe it's time to just be still and let modern medicine have a break from trying to help us fix things.

Sunday, December 15, 2013

Halfway through December already??

What a week it's been. In all the fuss of detailing my miserably refluxy night this week, I didn't get around to talking about anything else and there was a lot to talk about, some good and some not good.

First, in case anyone was wondering, my birthday was lovely in spite of the yucky night that followed. Sometime between when I went to sleep and when I got up, Donny left some flowers & delicious chocolate peppermint squares on the table for me. (I ♥ chocolate & mint together. He knows me well.)

Raya went to preschool in the morning and Donny took the day off to tag along while I got free birthday food spend quality time with his beloved wife. There are some locally owned restaurants that do free food on birthdays so we always make the rounds to all 3 of our favorites. We started off with breakfast while Raya was at school and then when we got home from picking her up, I decided that what I really wanted for my birthday was a nap. It was fabulous. Raya snuggled up in between Donny and me and watched her favorite shows on the iPad while we took a nap. It was lovely. Just what this 7 month pregnant mother of 4 who routinely stays up too late needed. :)

After our nap, the 3 of us headed off to lunch. We got an extra plate for Raya and a whole cup full of ice (the nice soft pellet kind that doesn't break your teeth) and she ate a few bites of fruit and some ice while Donny and I enjoyed our sandwiches.

After that, we stopped off at restaurant #3 to pick up some heavenly BBQ for dinner. When the big kids had their homework done, I helped them make me a no-bake cheesecake for my birthday dessert. They each got to put in an ingredient and then Ashtyn spread the filling in the crust. They all thought it was "awesome" making Mommy's birthday cake.

We ate dinner while the cheesecake chilled in the fridge. Raya ate her food and then insisted on sitting on my lap while I tried to eat mine.
I also got to meet up with my BFF later that night for a snack & cheesecake so it was an all-around great day spent with a lot of my very favorite people.

Wednesday morning, Raya went to school and I worked on some Christmas projects that I'm rapidly running out of time to finish. (December ALWAYS goes too fast!) Raya had her 4 year well-check and since it happened to be right when her respite provider usually comes, she tagged along with us. Super fun for her, right? In almost 11 years of being a parent, I can pretty much count on one hand the number of times that I've had another adult with me at doctor appointments. They're always while Donny is at work (or while he was sleeping back when he worked nights) and I'm a little too independent to ever ask anybody to go with me. I really don't mind going by myself but I have to say that it was actually really nice to have another adult with me. Of course it also helps that she is pretty much Raya's favorite non-family member. You can't tell that they like each other at all, can you.

It was a nice change of pace to actually be able to have a conversation with the pediatrician and have someone else keeping Raya out of trouble. Ped appointments are always kind of amusing to me when it comes to Raya because I really don't feel like we ever accomplish much other than me updating the doctor on what's changed since her last well-check. I'm still undecided about whether the next kiddo will be seeing this ped or not.

Raya has not had a great stomach week. It's definitely better than the previous week (meaning no vomiting and back on bolus feeds) but it's still not quite "Raya-normal". She's had some dark colored leakage from her stoma that probably has blood in it but I'm not sure. We've gotten out of the habit of putting gauze or pads around her stoma because she hardly ever leaks anymore and has a lovely stoma now (thanks to scar tissue excision surgery a year ago) but the leakage lately has made her stoma sore. She asked me to put medicine on it so we got out the giant tube of Calmoseptine that we'll probably never be able to use all of and put a tiny dab on the sore skin and covered it with gauze. Interestingly, there was no leakage as long as the gauze was there. We already have extra water in the balloon but maybe we need a little more to keep her stoma from leaking. I'm still not complaining though, aside from our initial stoma problems, she has had a very healthy and happy stoma for most of the time she's had her tube. If this is as bad as it gets, I'll take it!
(hmmm, confusing picture. for the record, that's my thumb and 4 of her fingers :) )
After a day with Calmoseptine on it, everything looked great again. It's pretty good stuff and I'm not kidding when I say that the one tube we have will last us a lifetime.

Thursday was our day to stay home & catch up on things, or at least to talk about the fact that we didn't have anywhere to go so it was the perfect day to stay home & catch up on things. It never really happens that way. I did make some phone calls about finding a habilitation provider, which apparently is more difficult than I realized it would be, and the older 3 kids had their first performance with the community Christmas choir. That's about all we did on Thursday.

Friday morning started off with Kaida puking. Thankfully, she's my neat & tidy puker that almost never misses. She had a fever and felt yucky so she stayed home from school. Raya went to preschool but I had to cancel both her therapy appointments since I didn't have anybody that could stay with Kaida while I went, and much to Kaida's disappointment, I am not okay with leaving my 6 year old home alone. She would love it if I did. She did start to feel better in the afternoon, as is often the case with little stomach bugs. The girls were watching a Christmas movie & wanted hot chocolate so I made Kaida some. Raya can't have store bought hot chocolate mix because of the ingredients though so I called my super smart sister and asked her how she makes it for my nieces who can't have dairy either. Turns out all you need is some coconut milk, cocoa powder, and honey. Worked like a charm and Raya thought it was great. She drank a whopping tablespoon of it.
It never ceases to amaze me how she can eat or drink such a small amount of something but make it take SOOOO many bites or sips to get it down. I think it took her about 20 sips to drink the tablespoon of hot chocolate. I'm not sure if I could do that even if I tried.

I found out some very disappointing, sad, and quite honestly terrifying news on Friday too. Raya's neurologist, whom we love dearly, will not be coming back to work. She's been off quite a bit this year for different reasons and has had a very difficult year, so I'm not surprised to hear that she's not coming back, but I was really hoping she would. I may or may not have burst into tears and cried for half an hour when I found out she was resigning. Pregnancy hormones probably played a part in that but I really am sad that she's leaving. Aside from Raya's GI doctor, her neurologist has done more to make sure that we weren't leaving any stones unturned & that Raya was getting the care that she needed than any other doc we've seen. I'm not going into detail, but suffice it to say we would not be where we are now if it hadn't been for the neurologist. Thankfully we see GI tomorrow so I can hopefully talk with her about who would be a good fit for Raya.

Friday night was a rough night for Raya. She was sound asleep on the floor in the living room and Donny & I were relaxing on the couch watching a movie. All of a sudden completely out of nowhere, Raya stood straight up off the floor and started coughing and gasping, and her eyes were red & watery. She was choking on refluxed stomach contents. Awesome. I shut off her pump and we scrambled to grab something for her to puke on because it really looked like she was going to throw up. I'm honestly shocked that she didn't with the sounds that were coming out of her and the coughing & gagging. I drained what I could out of her stomach because she nodded her head "yes" when I asked her if she needed her stomach emptied. I used a syringe to get food out of her G tube that was blocking it from emptying but then just left a catheter bag connected to her stomach for a while. She wanted Tums and something to get rid of the yucky taste in her mouth. If I had been thinking, I would have had her swallow some Carafate but that didn't occur to me at the moment. I felt bad for her. She was awake for the next 2 hours or so but just laid on the couch looking miserable before she finally went back to sleep.

Saturday morning was pretty rough too. The big kids had a sound check for the Christmas concert at 8:00 in the morning. On a Saturday. When I could have stayed in bed. Unfortunately, Kaida was once again not feeling well. The kids HAD to go to the sound check or else they would not be allowed to sing in the concert that night so I took her anyway but didn't let her get near anybody or touch anything. I gave her a zofran before we left but it didn't really help so she sat on the floor in the hallway with one of Raya's puke bags while the kids practiced in a classroom before heading into the chapel to practice with all the microphones.
To clarify, I couldn't have left her home anyway because Donny was gone teaching his martial arts class. The practice wasn't supposed to last very long so I thought it would be easier on Kaida to just stay there than to get in the car to take the kids to the church, go back home, and turn around and go back to get them. Unfortunately, the guy that was running the entire professional sound system didn't show up until after 9:00. By then Raya was a hot mess and Kaida (my aforementioned usually tidy puker) had managed to vomit water all over the bathroom floor. Raya got mad at me because I hadn't brought her blanket with us so she was pouting. After a few minutes, the pouting turned into a full on meltdown that lasted a good 45 minutes. The most awesome moment was when the big kids were done with their practice and went with the rest of the choir back to the opposite end of the building to have donuts. I dragged a screaming, kicking Raya down the hallway while poor pukey Kaida held the barf bag up to her face so we could round up the big kids and go home. As part of the Christmas celebration, there were nativities set up in all the classrooms for people to look at when they came to listen to the musical performances on the 3 nights that the celebration was going on. Because the nativities belonged to people who had been kind enough to loan them out, there were men from church acting as security guards around the clock to make sure nothing happened to any of them. As we got to the end of the hallway, I had Kaida sit down on the floor while I chased after Raya and tried to catch the big kids' attention. The poor gentleman that was sitting in the hallway to guard the nativities saw me go after Raya (which I'm sure caught his attention since a raging 4 year old could probably do a lot of damage). As I picked her up and turned to walk back towards where he was sitting, I saw him looking the other way at Kaida. Goodness knows what was running through that man's mind when he saw a stray 6 year old sitting on the floor by herself holding a barf bag up to her face. I hollered to the big kids (probably louder than what is socially acceptable in a church building) and we got the heck out of there.

Raya didn't have shoes on anymore by then so I was carrying her, kicking & screaming the whole way. When we got to the car, I stuck her in her car seat and she got even more upset because I didn't let her climb in by herself. I didn't care. I wrestled her into the buckles, shut the car door, took some deep cleansing breaths, and drove home with her kicking my seat and screaming the whole time. She calmed down some but there was a bit more of this:
before she settled down. At one point she told me I was hurting her feelings but wouldn't tell me how. Of course she suddenly got happy about 30 seconds before Daddy walked in the door and was just as happy as could be the rest of the day. Such a stinker!

Thankfully the rest of the day went much better. Kaida was feeling a lot better by evening but not quite good enough to sing with the choir so she just watched. Ashtyn & Cole each sang solos and both did a great job. I'm pretty sure I wouldn't have been willing to sing a solo at a community event when I was 8 or 10. Since they were dressed up, I had gotten the other girls dressed up too and we took advantage of the photo op. :)
Yep, we're doing our part to repopulate the world with redheads. :)

This week will probably end up being just as busy as the last couple have been. We see GI on Monday, make-up OT session on Tuesday, I have an appointment on Wednesday morning, Raya's class has a Christmas program Wednesday evening, the big kids have church activities Wednesday evening, and Friday we have the usual feeding & OT appointments along with the kids' Christmas stuff at school and get out early. Saturday the 3 older kids are competing in a martial arts tournament that will take up most of the afternoon. I'm tired just thinking about it all. Somewhere in there, I have to finish getting ready for Christmas and pretend that the next 9 weeks until my due date aren't going to just fly by.

Wednesday, December 11, 2013

Sympathy and a message to parents & doctors about reflux

I've mentioned this briefly a couple of times before, but I've had issues on & off for the past couple of years with GERD. In that time, I have gained sympathy for my 3 little girls who all dealt with reflux as babies, and especially Raya who had the worst of it as a baby and still deals with it at the age of 4. Although I know that there's no way I can fully understand what Raya's medical conditions have felt like to her, I thought I was doing a pretty good job acknowledging her discomfort and imagining what she might feel like when her GERD is acting up because of what I've dealt with in the last couple years. After the night I had last night, however, I'm now fairly certain that I had NO real comprehension before and am a bit closer to it now. I decided that maybe if I describe in gross detail how my night went, other parents might have a little bit better understanding of how their children might feel too. (and maybe a medical professional or two might see it and gain something from it as well.)

Being 30 weeks pregnant at the moment, it's no surprise that heartburn is my frequent, if not constant companion these days. Before I was pregnant, I was taking Prilosec in order to hopefully prevent a 3rd recurrence of the esophageal strictures I had to have dilated last year. An esophageal stricture is a band of tissue in the esophagus that becomes tight and restricts the diameter of the esophagus. The tighter the stricture is, the more difficult swallowing becomes. Mine were in the lower end and although they definitely could have been worse (meaning that I was not having food impactions) I had the constant sensation of food being stuck in my throat and swallowing certain things like bread was taking more and more effort. And more water. As much as I didn't like being on Prilosec because of the way it made my stomach feel, it worked better than anything else I had tried (and there were several things, pharmaceutical and not pharmaceutical) and was much cheaper and less painful than another dilation. However, proton pump inhibitors like Prilosec can't be used while pregnant so I had to stop taking it and use Zantac, an H2 blocker, instead. That was my first lesson in sympathy because I learned quickly that although Zantac helps, it doesn't do what Prilosec does and I now understand why Zantac & other H2 blockers alone are not enough for a lot of babies & children with GERD. It's still better than nothing though and doesn't make me gag like Tums.

So there's a bit of history. During this pregnancy, I've spent a lot of nights sleeping propped on the couch because it's more comfortable than laying in bed. Yesterday was my birthday so I ate different food than I normally do and I guess that's probably what was responsible for my miserable night. I put on a documentary and dozed off on the couch. It wasn't long before the heartburn started, and I found myself waking up several times in the next couple of hours because of how badly it burned. It was a MUCH stronger and more painful burn than my usual heartburn. At some point in the night, Raya woke up and got upset because I was not snuggling with her (how dare I!). She joined me on the couch with the standard 2 pillows, 2 blankets, droves of stuffed animals, and her feeding pump backpack. We snuggled up on the couch & went back to sleep.

*This is where it gets gross so stop reading now if you don't want to hear about what a bad night with GERD feels like.*

Shortly before 2am, I woke up more or less coughing & choking on refluxed stomach contents (i.e. vomit). (and for a brief second, I thought about how ironic it would be if I vomited on Raya for a change instead of her vomiting on me...) My eyes were watering, my esophagus and lungs (or maybe just bronchial tubes but whatever) were burning, I couldn't catch my breath, I was on the verge of gagging and vomiting from the taste of what I had refluxed in my sleep, my stomach felt more full than it had after I finished eating dinner, and I felt HORRIBLE. I wiggled my pregnant body out from under a peacefully sleeping Raya and tried in my dazed, half asleep state to figure out what to do next. I was coughing still because I could feel that there was still refluxed stomach contents in my airway, and every time I coughed and something came up, I had to fight back the gag that wanted to follow because of the rancid, bitter taste of stomach acid and digested food. (hypersensitive pregnant gag reflex, remember?) For the next 15 minutes or so, I went back & forth between coughing & spitting into the sink trying to clear the rest of the nasty stuff out and dashing across the bathroom to the toilet thinking I was going to throw up. When that was pretty much over, I had to get the taste out of my mouth so I could stop gagging. I loaded up my toothbrush with about twice as much toothpaste as I normally use and tried to brush the taste out of my mouth to no avail. I used the tongue scraper (which also almost made me gag) and that didn't get rid of the taste completely either so I found a strong tasting piece of mint candy and ate it. When I had gotten the taste out of my mouth enough that I was no longer having to fight the urge to gag and didn't feel like there was stomach acid in my lungs anymore, I laid back down on the couch with Raya. That lasted about 10 minutes and then I had to get up again because I still felt awful and kept coughing, which made my mouth taste like vomit and made my chest burn. I was also still having very painful heartburn. I was awake for a good 2 hours (watching more documentaries on Netflix) before I was finally comfortable enough to go back to sleep but still kept waking up every so often because of the intense burning in my esophagus.

When things had calmed down a little after the first big episode and I wasn't feeling quite so desperately awful, I could not help but think of Raya. {pardon me while I get a kleenex...or a handful of kleenexes *sniff sniff*} Now that she's starting to be able to communicate how she feels physically, she tells me more things than she used to. It used to be that she would get a certain look on her face and I'd guess that she had just refluxed into her mouth, but I didn't really know what to do for her about it. Now, she gets that same look on her face and tells me, "Mommy, I have puke in my throat." or "Mommy, I have puke in my mouth." or "Mommy, I have a yucky taste." and she'll ask for "a Tum" to help with the burning and something to get the taste out of her mouth. She tells me every single day that her throat hurts. I've never told her no when she asks for Tums (unless she's already hit her daily limit) because clearly, if she's asking for something like that then she needs it, but now I GET IT. It feels AWFUL. Thinking back on all the times that I knew she was refluxing as a baby and all the times she spit up or vomited bile (which I can only imagine tastes 100x worse than normal vomit), I feel horrible knowing that she just had to live with that taste in her mouth since she was so orally aversive that trying to put something in her mouth to get the taste out would have only made her vomit more. Last night was certainly not the first night that I've ever had stomach contents end up in my mouth or the first night I've been uncomfortable because of GERD. I think we've all had those little moments where we bend over too far after we just ate a big meal and something makes its way back up, or we burp and it's not just air that comes up. What I felt last night was far beyond that though, and I imagine that's probably closer to what GERD can be like for a child like Raya.

What struck me was the feeling of confusion and panic that I woke up with as I was choking on horrible tasting refluxed stomach contents that I had inhaled in my sleep and trying not to vomit. This is what broke my heart as I thought about what that feeling must be like for a baby like this:
This is Raya 7 days before her first hospitalization. I took the picture at 9pm, which was probably 3-4 hours in to her nightly fuss-fest. She was miserable. She cried all the time, and I think last night gave me a little more insight into how she must have felt. How terrifying must it be for a baby who does not have the ability to understand what is happening to them? I could at least think to myself, ok, I'm not dying here, I can still breathe, I just need to cough it all out, take a Zantac, and pop some antacids and I'll eventually feel better. I'm an adult that's capable of doing all of those things for myself and my brain doesn't shift to fight-or-flight mode. I already know what it feels like to be the parent of a miserable refluxy baby. I've had more than one of those. You run out of things to do to help them feel better pretty quickly. You try all the things that your friends & family swear will cure their reflux. When none of that gives the relief they need, you take them to the pediatrician and maybe to a GI doctor and put them on expensive medicine and maybe an expensive specialized formula to try and help what you haven't been able to alleviate for them with the things you've already tried. The doctor tells you they've done what they can & you'll just have to wait for them to outgrow it. "Don't worry, Mom, it's just reflux. It's not a big deal, lots of babies have it. She'll outgrow it." Well guess what, Doctor. If those poor babies feel ANYTHING like how I felt all night last night, it IS a big deal. It is a HUGE deal, and no freaking WONDER they cry inconsolably all the time! No wonder they can't lay flat and don't sleep through the night or nap unless someone is holding them and no wonder they stop eating as soon as they've taken enough to make the discomfort of being hungry go away! No wonder they become afraid of food and would rather feel the pain of starvation than risk the terrifying and painful feelings of refluxing acidic stomach contents. (Did I mention it's after noon and I still don't feel like eating because my esophagus is still on fire and feels raw and my stomach still feels full even though I haven't eaten since dinnertime last night?)

I am not professing to have all the answers to dealing with GERD. Obviously I don't have them or I would not have had the night I had last night and my 4 year old would not still be on adult doses of 2 different reflux meds, without which she is miserable. What I do have is an inkling of what it must feel like to experience miserable, painful, and scary symptoms and not be able to do anything about it except refuse to eat.

Parents, if your baby is experiencing reflux that is affecting their personality, demeanor, sleep habits, eating habits, or ability to gain weight, be proactive. If you are breastfeeding, keep a detailed log of what you are eating and your baby's symptoms and look for patterns. Keep a detailed log of what your baby is eating and drinking as well, including the quantity (or time if breastfeeding), how long a meal takes, the baby's mood while eating, whether or not they keep it all down and an estimate of how much comes back up if they don't, whether they seem fussy or gassy in between meals, and anything else that you feel is significant or unusual. Do all of the standard reflux things, like keeping the baby upright for 30 minutes after he or she eats, talking to the pediatrician or GI about adding rice cereal to help the milk or formula stay down (and add calories if weight gain is slow), use gas drops, feed smaller amounts more frequently, stop part way through a feed to burp the baby, and avoiding foods that are known to cause excess gas or reflux. There are also natural remedies and dietary modifications that can help with reflux. The more information you are able to provide your baby's doctor about what you are doing to alleviate symptoms and what seems to make them better or worse, the better able he or she will be to assist you in finding the root of the problem and addressing it. Going to the doctor is not cheap and specialists can be difficult to get in to, so being prepared going into appointments helps you maximize your time and money by making more efficient use of the appointment time.

Not all reflux needs to be overseen by a specialist. A baby who spits up all the time but has no signs of discomfort, is still on track with weight gain, is not showing signs of aspiration of reflux (i.e. pneumonia/respiratory infections), and is not having difficulty eating is probably just a "happy puker." I had one of those. She spit up until she was 18 months old and it drove me crazy. We could only feed her light colored food or we ended up with spit up stains all over the carpet. Most of her baby clothes were totally trashed from all the spitting up. BUT. In spite of seeming like she spit up more than she kept down, she still stayed on track with weight gain and she was a good eater. She did not need reflux meds, she just needed to keep eating and keep growing and wait for her lower esophageal sphincter to mature so it could keep everything down. In stark contrast, my other two girls were miserable refluxers who could not lay flat to sleep, had to be held upright for a while after being fed, cried and arched their backs because of reflux, and had difficulty gaining weight. THEY needed to see the doctor for their reflux, but the first one did not.

As much as it pains me to say this, your child's reflux will not be fixed overnight. It could take a long time. For some kids, making a few small adjustments to feeding routines or starting them on a reflux med can make an immediate difference. For others, it takes much longer. There are other medical conditions that can mimic or cause reflux, and sometimes it takes diagnosing underlying conditions to finally be able to relieve the reflux. Understand that there will be a process and it will take a lot of patience. Don't assume that because one doctor has not fixed your baby's reflux as fast as you think they should, that another will be able to. There is nothing wrong with seeking a second opinion but it is important to stick with one doctor long enough for him or her to get the full picture of what is going on with your child before you jump ship and go to another one.

One more note to parents. Learn what reflux looks like beyond the obvious symptoms of spitting up, crying & arching during & after feeds, and things like that. If you are having to go to great lengths to get your baby to eat and drink, something is not right. If the only time your baby will take a bottle or nurse is when he or she is asleep, there is a problem. If your baby will only take an ounce or two at a time and then stop, there is a problem. If your baby seems to spit up more than they keep down, there is a problem. If your baby is crying inconsolably for hours at a time, there is a problem. If your baby is projectile vomiting rather than just spitting up, there is a problem. If your baby is a "happy puker" but keeps coming down with upper respiratory infections, there could be a problem. Any and all of those things are warning signs that reflux is at least worth discussing with your child's doctor, and some of them may point to something beyond reflux. My point is not to scare anybody, but I want parents to know that they should not just try to tough it out or suffer through it. I am especially feeling that way after the night I had last night. No baby should have to go through months of feeling that way, and no parent should have to go through watching their baby suffer through it.

Doctors (and PAs, NPs, and nurses), when a stressed out, sleep-deprived mother brings a baby into your office and goes through a list of the baby's symptoms, please for the love of Pete, do NOT tell them it's "just reflux" and their baby will eventually grow out of it. Your job is hectic and stressful, but please be patient and listen, and give the parent the benefit of the doubt. It may very well be the case that the child IS suffering from reflux, but understand that even for babies that don't seem miserable while they are in your exam room, reflux can be horribly painful. (I promise, it's miserable.) Please take the time to listen before simply prescribing Zantac or Prevacid and sending them off on their way. Dig deeper. Find out what the parents have already tried in order to alleviate the baby's symptoms. Make sure the parents know all of the little reflux tricks, like elevating the crib mattress to a 30 degree angle, keeping the baby upright after a feeding, feeding smaller amounts more frequently, and fortifying with rice cereal. If they have not kept a detailed log of symptoms and feed schedules, have them do that and see if you can help them identify a pattern that would lead to eliminating offending foods or figuring out a more successful feeding schedule. Know that they are coming to you because they are desperate for your help, and help them. Look at the child as a whole. Beyond "just reflux," if you see a baby that is projectile vomiting, refusing feeds, losing or not gaining weight, having recurrent respiratory infections, or becoming increasingly reliant on "dream feeds," dig deeper and don't write the baby off as just another "happy puker" even if they don't seem particularly uncomfortable while they're in front of you. If the parent tells you that the baby is crying for hours on end, believe them, and don't just tell them they have a colicky baby. Try to help them figure out why the baby is so miserable and help them understand what their options are. Speaking from the perspective of a parent, I can also tell you that it is crucial to help parents understand that successfully treating reflux (and underlying medical conditions that might be discovered in the process) will take time. Tell them that there are things that can give relief fairly quickly but that there may not be a magic quick fix for everything the child is experiencing. It DOES take time for a child to outgrow reflux, and some never do. Be honest and forthcoming with them so that they know you are truly interested in helping them. If you are going to order a test or lab, explain to the parents what you are hoping to find or rule out by ordering that particular test and why it's important. By explaining your plan of action to them and explaining what tests you're ordering and why, you will spare them the trauma of what they might find on Google if they attempt to research on their own. If you are a general pediatrician or family practice doctor and aren't sure what else to do for the child, help the parents find a good pediatric gastroenterologist who will know what steps to take next.

On a final note to doctors, please be careful with the language you use when you speak to parents. It is obviously important for you as a practitioner to be sure that the baby is being properly cared for, but it is possible to do that without making the parents feel as if they are on trial. Chances are that they already feel guilty and like they are failing as parents because they can't make their baby feel better, and the last thing they need is for the doctor they are seeking help from to say things that make them feel worse or like it's their fault. Guidance and correction can be given without being accusatory. They need to feel that they can trust you or else the partnership you are all trying to form with the purpose of caring for their child will never be successful.

I didn't mean for this to be so long, but I woke up this morning still feeling awful, both physically and emotionally, and felt like I needed to not let this go without speaking up. For some people, reflux is not a big deal. Some babies spit up and that's just the way it is, and they do grow out of it. For others, (as I have learned) it is incredibly painful, unpleasant, and can be very scary. It can do damage to the esophagus (again, I learned that from personal experience) and anything else it comes in contact with (i.e. teeth, sinuses, etc.). Just ask the baby clothes that Ashtyn and Kaida wore. When I got them out for Raya to wear, I found that one of the shirts that used to have a very cute printed pattern all over it had a large patch down the front where the pattern had literally been eaten off the fabric by spit-up. Not exaggerating even a little bit. Bottom line, if your baby is miserable and you are miserable from them being miserable, do something about it, and get your doctor to help you do something about it. NOBODY should have to feel like that and there are ways to help.

Friday, December 6, 2013

Holding steady

It's still hard to say if Raya's stomach weirdness this week is the result of an extremely mild and virtually undetectable virus or a sudden drastic decrease in her motility, but today has been a pretty good day. I chatted with the GI nurse yesterday in the late afternoon and she told me they've had several of their motility/GI kids' parents call with similar issues, but she said most or all of them had a low grade fever at some point and/or diarrhea along with the vomiting and Raya has not had either of those things, so I'm still not completely convinced that it's viral. However, there's also the dreaded possibility that a mild stomach bug has thrown her motility completely out of whack even though there is no longer any sign of a virus. (aka the complication we've always worried about) It really should be a law that all viruses should have to come with a fever so that parents like me would know whether their kid is sick or just having more GI problems.

She's had a good day other than being a little more tired than usual. I am attributing that to the fact that she has gotten just a fraction of her normal caloric intake all week since we've had to run pedialyte and diluted formula at slower than usual rates to keep her comfortable. I sent her to school without her pump on this morning because her stomach was still full of formula from her overnight feed, and because she was supposed to have feeding therapy after school. Her feeding therapist canceled last minute because of a migraine, but I figure that was probably for the best since Raya wasn't too interested in eating anyway. Sensory-wise, she's been a little out of whack this week and was not a fan of getting her massage & joint compressions at OT. You can almost always tell that something is off with Raya's GI tract by the changes in her speech. It's the strangest thing but it's absolutely connected. She gets harder to understand when her gut is acting up.

I accidentally made her puke today. I was trying to check for residuals to see if her stomach was still full of formula after school and the tube was blocked by potato chip goo. Usually if there's a little blockage like that, it doesn't bother her in the least bit for me to push & pull a little bit with a syringe to clear whatever is blocking the tube. Apparently her stomach is extra sensitive right now though because she started dry heaving. Then she kept dry heaving for a good solid 2 minutes but nothing came out so I'm guessing the formula had cleared her stomach by then. Lesson learned: don't try to clear potato chip goo or other food goo from the tube with a syringe when she's having a bad motility week.

I got a good chuckle out of her this morning. We were ready to leave for school and I heard her talking. I looked over the back of the couch and saw that she had tucked in some of her stuffed animals and was giving them instructions for while she was gone to school and saying goodbye to them. Stinkin' adorable.
Then I couldn't help but laugh and sigh at the fact that the majority of her stuffed animals have come from the hospital. The big lamb on the left (aka Momma Lamby) is one that she stole from a sibling. The raccoon came from her awful impedance probe overnight hospital stay in May. The small lamb is from an emergency endoscopy and first attempt at GJ tube placement, and the ugly parrot thing on the right is from her pH probe when she was 7 months old. Normally she has more than 4 with her at a time so I'm surprised there were only 4.

Hopefully she'll start to get some energy back when she's back on full strength formula tomorrow. Today she's been on 2/3 formula and 1/3 pedialyte with additional fluids as usual, and she's been at a continuous rate of 75ml/hour. I might cry if we can't get her back on 2 or 3 hour bolus feeds in the next few days. Having her go from tolerating a whole 8 oz feed in 30 minutes to not tolerating anything faster than 8 oz in 2 hours last fall was a painful setback. If what we're dealing with this week ends up being a motility problem rather than a temporary illness and we're stuck at 75 or 80ml/hour, that's pretty much going back to where we were about 2 1/2 years ago. Ouch. Fingers crossed that things will get back to normal (whatever that means...) very soon!

Thursday, December 5, 2013

Puke makes Mommy a little crazy

I hate vomit. I especially hate when Raya vomits and I don't know if it's dysmotility vomit or sick vomit. She puked at school on Monday and then finished emptying her stomach into a towel in the car on the way home. Once her stomach was empty, she was right back to her normal happy self. I fed her pedialyte all day Monday and she seemed to feel better than she has in weeks. Not that she seemed to feel bad the last few weeks, but she definitely felt better on pedialyte. By late that night when she had not had any more signs of possibly being sick, I concluded that whatever made her throw up was probably not viral and probably had to do with her motility issues.

Tuesday, she was absolutely delightful pretty much all day long. I didnt want to jump right back to her normal feed schedule with full strength formula just in case her stomach was still feeling sensitive. Instead of full strength formula, I did half formula and half pedialyte so it would be easier to tolerate. I also fed her at 75ml/hour for several hours instead of the usual 250ml feeds at 135ml/hour every 4 hours. She was in a great mood the entire day and aside from telling me a few times that she was tired, her energy level seemed normal too. No vomiting and only one poopy diaper.

Wednesday morning she was pretty tired and crabby when she got up. I accidentally woke her up by bumping her with my foot when I got out of bed because I didn't know she was on the floor by the bed. Oops. She wasn't very cooperative getting ready for school but once we were in the car, she was happy. I gave her 2/3 formula and 1/3 pedialyte and ran it in at 85ml/ hour so that she'd be able to get all of her fluids in for the day. When I left, she was happy as could be. I didn't really get a chance to ask her teacher all the detailed questions I wanted to about Raya throwing up at school Monday but I I did tell her that Raya was totally fine after her stomach was empty and had not shown any signs of being sick. The teacher said that by the time they got to the nurse's office, Raya was happy, dancing around, and chattering away like her usual self so she didn't think Raya seemed sick either.

She had another great day Wednesday. She played all afternoon, got her nails painted by her respite provider, and stayed happy & pleasant until about 5, which is later than usual. She had her evening meds, laid down on the couch and went to sleep (after demanding to snuggle with me and then telling me I had to lay on the other end of the couch). After she fell asleep and had scooted down off of the incline she was laying on, her shirt came up and I couldn't help but notice that her G tube was sticking out really far. If I pushed it back down, it would come back up. The balloon has plenty of water in it, so it shouldn't be this loose.

She mumbled in her sleep a couple of times but that's not unusual. Right as I was deciding it was time to go to bed, she was laying flat on her back on the couch and started erupting like a little vomit volcano. I grabbed her and rolled her over so she wouldn't choke and tried to keep it all in the blankets she was laying on and the t-shirts Donny was frantically throwing at me to catch puke with. She just kept puking and puking. I couldn't believe how much was coming out of her. For having only been fed at 85ml/hour, there was a TON of puke. Probably 6-8 hours' worth plus the tater tots she had eaten for dinner 6 hours earlier. Donny put her in the shower while I started a load of laundry and scrubbed the couch cushion that had gotten wet. We got clean jammies on her, threw a blanket down on the floor next to the clean/dry couch, gave her a puke bag just in case, and I got her late night meds and some pedialyte ready for her.

I didn't dare leave her in the living room by herself but I also didn't want to bother her since she was comfortable, so I did what any 7 month pregnant mom who didn't want to sleep on the floor would do: I threw a quilt over the giant wet spot on the middle cushion of the big couch and slept there. I gave her 50ml/hour of pedialyte all night long with a Farrell bag connected to her to vent her stomach. I think I finally went to sleep at about 2:00.

Once again, she's totally fine this morning. I'm at a loss. If it's not a virus, then why the heck is she suddenly having such a drastic decrease in her gastric motility? It's probably a virus of some kind, but if it's a virus, it's the strangest virus I've ever seen. There are virtually no symptoms other than her vomiting 2 days apart and not tolerating her usual feed rate. She's felt better in the last 3 days than she has in a few weeks, which I assume is due to being fed much more slowly and getting diluted formula instead of full strength. She hasn't had a fever at all and has stuck with her usual one poopy diaper a day. On the bright side, once she emptied her stomach last night, her G tube stopped sticking out like a turkey timer and looks much more normal now. Normally when she has a virus, I do pedialyte for 24 hours or until she no longer has a fever and then work back up to full strength formula at the normal feed rate as tolerated. How the heck am I supposed to follow that protocol when there's no obvious signs of illness to go from??

This kind of stuff is what makes me want to quarantine her and the rest of my kids for the entirety of cold & flu season. Parents of kids with normal digestive systems know that when their kid gets over a stomach bug, everything will go back to normal. Having spent so much of Raya's early life catching vomit, cleaning up vomit, explaining away vomit to strangers, and trying to figure out how to stop the vomit, all I can think about whenever Raya throws up is that it could be the start of another 18 months of uncontrollable vomiting and dysmotility. Before I had Raya, I didn't know that it was possible for a virus to cause a digestive tract to shut down. I had no idea that some people's digestive tracts just randomly shut down for no reason. I've been able to go along feeling like the worst was behind us and she's over the mysterious condition that made her vomit so much and required us to take such drastic interventions early on in her life in order to get and keep her healthy. I've felt like she's medically fine now other than her stomach being a little slow, and it's just a matter of finding food that doesn't make her sick and convincing her to eat it. Then something like this week comes along and I can't help but worry & wonder if maybe we're not as out of the woods as I thought we were. Even if it is a virus, it's possible that her medical history could make her more prone to longer-term complications from it than kids with normal digestion. In other words, any other kid that gets it would get over it and be fine but it might set her back to where she was 2 or 3 years ago and we'd basically be starting all over again. I can't really even put into words what that giant question mark feels like. (and it's probably best if nobody asks me the standard, "Is this something she'll grow out of or will she always need the feeding tube?" question this week) I am still incredibly grateful that her medical issues have not been imminently life-threatening like so many of our little friends, but setbacks and the fear of setbacks are never easy on a mother.

Monday, December 2, 2013

Thanksgiving weekend recap

I'm sad that Thanksgiving is already over. Fall is my favorite time of year (largely due to the fact that the weather finally goes from miserably hot to heavenly) and it always seems to go way too fast. We had a lovely Thanksgiving this year. I brought salad and cornbread. I thought it would be funny to bring a mess-free salad dressing dispenser along but it wasn't really the right crowd for that kind of humor. :)

Unfortunately, I didn't know until we got to Donny's aunt's house that my camera battery was dead and this is pretty much the only picture I have from Thanksgiving that doesn't have anybody else's kids in it:
Aside from the eating part, Raya loved Thanksgiving. The last time it was at this aunt's house, she fell and broke her arm. Thankfully there were no broken bones this year. The weather was perfect (about 73 degrees) and there were dozens of little kids running around so Raya and her brother & sisters had a great time. We got to see both of Donny's grandfathers too, which is always a treat. (more so when I have a functioning camera...) His Grandpa K will be 102 in April and I think everybody has stopped counting how many great grandkids he has now because there are so many.

I had brought Raya some mashed potatoes, applesauce, and some of the Raya-friendly chocolate pie I made for her. Out of that, she ate about 1/4 C of applesauce and maybe 2 tablespoons of mashed potatoes. There was way too much going on for her to sit down and eat, and on top of that, it was extremely bright & sunny outside and she has a hard time with bright light, so she kept saying it was too bright for her to eat. I ended up feeding the rest of the mashed potatoes to her and reminded her that I had pie for her when she finished. That did the trick and she eventually finished them. I thought she was going to gag on the last couple of bites but she ate them. I should have taken a picture of her eating her pie. She was SOOOO excited about it! The crust was made with flaxseed, coconut flour and coconut oil and the filling was pretty much a chocolate pudding made with coconut milk. It was actually really good, if I don't say so myself. As an added bonus, one of the cousins has a son with some food allergies and Raya's pie was safe for him to eat too, so he was pretty happy about that.

Speaking of cousins' kids and eating... Thanksgiving with Donny's family is always great. The food is fabulous. They do Mexican food for every holiday, so there's Mexican food on one side of the table and traditional Thanksgiving food on the other. It works out nicely because there's at least something that all the kids will eat. That says a lot considering there were about 20 kids under the age of 11.

Later in the afternoon, I was sitting on a stool in the kitchen watching kids run in & out of the house and trying to decide which dessert I wanted to pick at when I saw something that totally fascinated me. Donny's uncle was holding his granddaughter, who is about 8 months old, and she was eating a dinner roll. I sat there and stared at her for a couple minutes before I realized that I was staring at her, but I couldn't help it. She was just holding a roll in her hand and EATING it. Sure, there were crumbs going all over the place, but girlfriend was very much into that roll. She kept nibbling at it until it was gone. Somewhere during that time, my father-in-law speared the big chunk of ham from the bottom of the spiral sliced ham with a serving fork and held that out to her. She got all excited and nibbled on that too. Then he grabbed one of the turkey legs and let her get a taste of that. She drank a bunch of water from a big fat straw and then sucked down half of one of those foil baby food pouches. I was speechless. It was silly of me, really. I did have 3 kids that ate orally before Raya came along, but now that I know that there are babies who don't know how to eat and wouldn't even if they did know how, I'm totally fascinated by the fact that most babies DO eat, and they LIKE to eat. This kid was loving everything that went into her mouth. It's hard for me to remember what it was like to have a baby that just ate. I try not to even think about having to get another baby to eat because it's kind of overwhelming.

After we had all eaten and divided up all the leftovers, we came home and did nothing the rest of the evening. It was great. We let the kids watch a couple of movies, looked through the ads, did not do any crazy Black Friday shopping, and just enjoyed being at home together. We don't get enough evenings like that.

Friday was a nice relaxing day too. We didn't have any appointments or anywhere we needed to be. I did a little bit of shopping online and we just stayed home all day until it was time for Donny & the kids to go to their karate class. While they were gone, Raya and I started dragging out the Christmas decorations. Once again, our back-up medical supplies saved the day and made a great platform for the Christmas tree. :)

Saturday morning, Donny had to go to work so the kids and I got some cleaning & decorating done. We rearranged all the furniture in the living room and put all the ornaments on the tree. I love me some Christmas ornament irony, so once again we had Raya's little silver "baby's first Christmas" spoon ornament that she got about a month before she quit eating. Cole, who is allergic to peanuts and all tree nuts, has this little gem to commemorate the year that we found out he was allergic to nuts:
I remember laughing pretty hard to myself when I bought that. When all was said & done, the tree was decorated and the kids were giddy with excitement over having the Christmas decorations out.
(the camera battery was charging or I would have taken pictures with a real camera.)

Saturday evening was nice & quiet too except that I had to go to the store. I hate going to ANY stores after the 3rd week of November. Also, it never fails lately that as soon as I'm getting comfortable and settled in for the night in my nice, cozy bed, Raya wakes up or the pump beeps. We've had several pump malfunctions in the last couple weeks too, which never helps. The problem we keep having is that the pump keeps running even though it's partially clogged somewhere, so we wake up in the morning and the pump isn't empty like it should be and it says it's fed her about 400-600ml more than we put in the pump. Problematic. This is what it looked like at 11:00 Saturday morning:
I thought Donny had turned it off at night & that I had slept through it beeping. It should have been empty at about 1:30 that morning, but instead it kept running & running even though nothing was coming out of it. When I went to take the old bag out & put a new one in, the extension tube was clamped but the pump was running as if it was actually feeding her. Dumb thing. I haven't figured out yet if the problem is the pump or the bags since it's happened more than once with this batch of bags.

Sunday was the day that we had our own little family Thanksgiving dinner. I really wanted to start Raya on turkey but wanted to be sure that I knew what it was being cooked with so I didn't let her have any turkey at the big Thanksgiving. I roasted a turkey and made rolls, mashed potatoes (along with some separate ones for Raya), sweet potato casserole, green bean casserole, gravy, and popped open a can of good ol' cranberry sauce.

Kaida's kindergarten Thanksgiving program included a song that says, "Who will get the drumsticks? Yummy, yummy drumsticks" so she's been fixated on eating a drumstick ever since she learned the song. I don't think she even knew what the drumsticks were until Donny got her one.

Being the mean mom that I am, I made Raya have a bite of turkey. She didn't want a bite of turkey, but I had cooked that whole stinkin' turkey with Raya-safe ingredients just so she could try it so I made her. The piece I gave her was about the size of my pinky fingernail and about as thick as a quarter, so it wasn't much. It was soft & easy to chew but boy did she not want to eat it. This pretty much sums up how Raya feels about turkey:

Eventually, she did swallow it but she made it clear that she did not want any more turkey. Donny let her have a swig of sparkling cider and she wasn't impressed with that either:
She said it was too spicy for her.

Overall, it was a nice evening and we enjoyed having a fancy-ish dinner together. (even if we did learn the hard way that the kids have been messing with the can of whipped cream in the fridge and let all the pressure out of the can so we couldn't eat the whipped cream...)

Aside from getting super sweaty for no good reason when she fell asleep last night and climbing into bed with us again last night, Raya had a great night. She also had a great morning. She was in a good mood and we got to school right on time. I came home & got a few things checked off of my to-do list and headed to the grocery store. No sooner had I pulled into the best spot in the parking lot when the school health aide called to tell me that Raya had puked and I had to come pick her up. Gah. The best laid plans are ruined by kids puking. I really didn't think she was sick, but she doesn't normally puke anymore unless she is. When I walked into the health office, she was sitting on a chair next to the classroom aide. She turned around and saw me and jumped up to give me a hug. She ran around and was all excited and happy. The one strange thing I noticed as soon as I looked at her though was that the edges of her eyelids were bright red and around her eyes was red. I'm really not sure what to make of that.

I had several "you know you're a special needs mom when..." moments this morning. The first was when I answered the phone and it was the health aide calling about puke. My first thought was, "Oh, puke? That's it? Puke is so not a big deal..." The second was when I started asking detailed questions about the vomit (volume, consistency, color, did it all come out at once or was she retching, etc.) and then saw the look on the classroom aide's face. It was as if to say, "Um, vomit is vomit, lady." It is to the rest of the world but not to the mom of a chronic vomiter! :) We were on our way home and Raya told me she needed to puke some more. I should have emptied her stomach before we got in the car just to make sure she was done but I didn't think about it until we were halfway home, so I just grabbed the towel that happened to be in the car and tossed it onto her lap. I told her to please make sure she got all the puke on the towel. Shortly after that, she emptied her stomach of whatever was left in it. Her seat is right behind mine so I couldn't see her but boy could I smell the Neocate. Part of me got all nostalgic from the whole smell association of smelling undigested formula puke in the car (another special needs mom moment) and the pregnant, overly-sensitive sense of smell part of me had to roll down the window. When we got home, I was afraid to see what damage had been done to the floor & seats of the car but was pleasantly surprised to see that she had actually managed to keep all the puke on the towel just like I had asked. Cue the next special needs mommy moment, I told her what a great puker she was and how proud I was of her for getting it all on the towel like I had asked and not making a mess in the car. Oh, what having this girl has done to me! :)

I took her temperature, which was completely normal, and put her in the bath since the school hadn't changed her pukey-sleeved shirt and the rest of the puke had soaked through the towel onto her pants. She played happily in the tub for a while and then we got her dressed and snuggled on the couch for a few minutes until she was too busy playing to sit on the couch with me. I took a nap and she woke me up every 22 minutes to turn on another episode of whatever she was watching on Netflix. She was her normal self all afternoon and didn't seem the slightest bit sick. I gave her pedialyte just in case, and waited for some sign of illness. She even asked for a juice box, which never happens anymore, and ate a little bit of food. I took her temperature several times and it was normal every time. I thought maybe she'd spike a fever after she went to sleep this evening but so far, that hasn't happened either.

I emailed her teacher this evening to apologize for the vomit on the snack table and to tell her that so far, it doesn't look like a stomach bug. While I was typing it, I thought about the fact that it feels really strange to actually be hoping that your kid threw up at school because her medical problems are acting up because that means it's not a virus. I also wish I had a magic 8 ball that could tell me whether the vomit was a virus, dysmotility/gastroparesis, or somehow related to food allergies. We'll see how she is tomorrow and I'll probably feed her turkey again (most likely through the tube since I doubt she'll put it in her mouth again) so if it was the turkey, that should tell us. She's had some other typical-for-Raya food allergy symptoms this last week so we also have no idea what was causing them. It sure is frustrating to try and figure out what her body can tolerate and what it can't.

And now I'm going to go snuggle her on the couch. She's there in case she pukes again and she keeps waking up and saying, "Mommy, can you come snuggle me now?" in the cutest little voice you can imagine. The last few weeks have made me wonder how in the world this is going to work when there's a newborn in the picture but until then, I'm enjoying every bit of Raya being my baby that I can and doing as much snuggling as I can before she has to share me with the new baby. ♥

Thursday, November 28, 2013

Tuesday, November 26, 2013

Great deal on Blendtec!

If you need a good blender for blenderized diet or just to make awesome smoothies, soups, and all the other fabulous things a Blendtec can do, then you will want to check out the smokin' deal on Amazon right now. They have one model of the Blendtec on sale for 50% off, which makes it $299 instead of $599. Not sure how long the deal will last but I thought I'd share it anyway!

Click here for the $299 Blendtec deal on Amazon!

Friday, November 22, 2013

My girl is growing up ♥

Sometimes I look at pictures of Raya as a baby and I can't believe it's been 4 years already. (just like I can't believe it's been 10 years, 8 years, and 6 years since my other 3 were babies)

Since she's still the baby of the family and has required a whole other level of care than her brother & sisters, sometimes I forget that she is turning into a big kid. (even though she reminds me often) Every now and then, I catch a glimpse of her doing something or hear something that she says and can't believe how grown up she is lately.

On Wednesday I went to pick her up at school and the teacher from the classroom next door saw me and came out of her classroom. She asked me if I had seen the pictures on the bulletin board of the kids playing in the leaves and took me around the corner to show me. She had been in northern AZ and had brought back 9 garbage bags full of leaves for the kids to play in since there aren't really any fall leaves around here. She was so excited to show me the picture of Raya because she said Raya and one other little boy from her class were the first ones to jump in the pile of leaves and she loved how excited Raya was.
Future long jumper, perhaps? :)

She has finally gotten the hang of riding a tricycle. At OT today, she was an endless ball of energy so instead of relaxing the last 5 minutes of her session, she rode the tricycle around. She used to have a lot of trouble with pedaling because one leg would push harder than the other, so she went back & forth a lot. The only part she has trouble with now is pedaling while she's turning. She's still learning how to adjust how hard she pushes on each pedal while the handlebars aren't straight.

Her therapist and I watched her pedaling around and neither of us could help but comment about how big she's getting.

Other times it's the things she says that get me. All of a sudden in the past week, her R sounds are SO clear. She is making so much improvement in her speech articulation lately that sometimes when she and Kaida are in another room talking, I have a hard time telling who is who. My parents are having a harder time distinguishing between them on the phone too. It's pretty exciting to see progress like that.

She is a smart little cookie. We had a little incident with running out of her sleep medicine last week and apparently it made an impression on her. The day I picked up the refill from the pharmacy, she kept asking me all afternoon if it was time for her sleepy medicine yet. I kept telling her no but didn't really think much more of it. Then she kept asking around dinner time every night this week if it was time for it yet. I thought maybe she was just asking because she likes to take it by mouth, so tonight I asked her. I said, "Raya, do you like taking your sleepy medicine because it tastes good or do you like it because it helps you go to sleep?" She said, "Because it helps me go to sleep. I don't like it when I can't go to sleep." Smart little kid. I don't think she likes how out of control she starts to feel when she knows she's tired and wants to go to sleep but her body and mind won't let her. I still think part of the appeal for her is that she likes taking it in her mouth, but I wholeheartedly believe that she is starting to learn what these medicines are and how they make her feel. Another example that has really surprised me lately is that she does not like it when I give her periactin. She has never tasted it before and I would never make her taste it. Just the smell alone is enough to convince me that it would be mean to make her take it by mouth when she has a perfectly good G tube to put it through. That's why I was so surprised the first time she said, "I don't like that medicine!" as I was drawing it into the syringe one day. I thought she was just confusing it with one of the others that she asked to taste one day a few weeks ago that is black licorice flavored (whose brilliant idea was that, making a child's medicine black licorice flavored?!) and that that's why she said she didn't like it. I gave it to her through the tube with her other meds as always, despite the protests. The next day, she told me the same thing, and she has said it every day since then. It's still hard for me to believe that a 4 year old could deduce that a certain medication is responsible for making her feel a certain way that she finds unpleasant, but Periactin has not been very pleasant for any of us and I'm starting to be more and more convinced that she KNOWS it makes her crabby, tired and hungry and does not like feeling that way.

She also does not like having a yucky cold. She's been feeling a lot better today but is still pretty congested. Yesterday I let her veg out all day long and watch a lot of cartoons. She loves watching things on Netflix on the iPad. I think it's because she can control it herself and she's learned her way around the iPad pretty well.

I also do not like it when she has a yucky cold. I have been blown away by how quickly she completely lost interest in food this week. That is hard for me to deal with emotionally because it reminds me that being able to continue to eat while she's sick is just one more obstacle between where we are now and being able to get off of the feeding tube. 

Speaking of feeding tubes, I kind of wished I had one on Wednesday. Then I would have been able to avoid drinking this:
 I had my glucose tolerance test. The drink doesn't taste bad but it burns going down and you'd think it was carbonated but it's not, it just feels that way because it's so sugar-laden. Yuck. Thankfully I passed this time and I won't have to do the 3 hour one like I did when I was pregnant with Raya. :)
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