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Wednesday, August 31, 2011

GI visit and a sad farewell

We had a bittersweet GI visit today. As far as the GI stuff goes, it was great. Raya has made a full 180 when it comes to how she handles doctor appointments. It used to be that she started crying as soon as we walked in the room and we couldn't leave the clinic without her vomiting at least once. NOW on the other hand, Raya waltzes in there like she owns the place.
She holds out her arm to get her blood pressure taken, holds still while we lay her on the measuring board, sits still while she's on the scale, and actually smiles at everybody. Even the doctor. :) I don't know how her doctor was ever able to hear anything with the stethoscope while Raya was screaming and trying to get away from her before but now she just lays there perfectly still and I think she actually enjoys it. :)
Today she weighed 25 lbs 9.5 oz (11.6-ish kg) and was about 33 inches tall. I think there's a bit of a discrepancy between the scale at the GI doctor's office and the scale at the allergist's office because last week she weighed 26 lbs 5 oz on their scale. She had clothes on when the allergist's office weighed her but I don't know if it was 12 ounces' worth. :)
Her doctor is pleased as punch with the way things are going. I don't think either one of us thought things would go as well as they have in the first month of being back on the G tube. She's doing SO well GI-wise even compared to where she was a month or two ago. I'm happy to say that I've almost forgotten what bile smells like. (almost. some things you never really forget. :) Right now, I'm feeling like I felt back in April and the beginning of May when I realized that things with Raya had suddenly gotten to be very low maintenance. I remember thinking that I needed to just enjoy the calm while it lasted because you never know what's around the next corner. I do hope that the roughest times with Raya are behind us but I'm not naive enough to really believe that anymore because you NEVER know what can happen with ANY kid, and especially one with a medical chart that weighs 5 lbs. (no, really, it weighs 5 lbs. the MA set it down on the scale once.)
Anyway, so the plan is to continue weaning her off of the amitriptyline. Did I mention that we're weaning off the amitriptyline? Or how very excited I am that we're weaning off the amitriptyline? Oh, how I hate that medication. I won't even go into all the reasons why, but it has become a giant thorn in my side. In all fairness, I do believe that it was a big part of the reason why we've had almost 3 vomit-free months. It did what she needed it to do and now she doesn't need it anymore. She's had a lot more reflux symptoms this week (spitting up, coughing, etc) but it's most likely because of the stuffy nose she's had. She'll take it for 5 more days and then she'll be off of it for good. We're going to give Raya some time to make sure she's okay off of it and if that goes well, we'll start weaning off of the neurontin next. Progress!
As far as feeding goes, Dr. S wants us to start shifting more of the night calories to the daytime and increase the amount she gets in her bolus feeds. She also still wants 720ml of formula calories a day so that she's nutritionally complete and getting the calcium & protein she needs. Hopefully I can figure out how to do that without clashing with what the feeding therapists want us to do with her.

Okay, so on to the sad farewell part. I may actually cry. Really. Our wonderful, amazing, sweet, hard-working, just plain awesome GI nurse Rebekah is leaving. She's due with her first baby in a couple of weeks and then she'll be moving out of state after that. I can't say enough good things about her. I know there have been times where just taking care of our needs has been a full-time job for her. She has fought with home health and insurance for us, begged and pleaded for Raya to get in for the motility testing in Ohio, gotten us in for urgent appointments and tests at the hospital when we've needed them, answered countless questions, and pretty much done whatever we've needed her to for the last 19 months. We've been able to avoid so many doctor visits just because I can call or email her if we're having a problem and she'll talk to the doctor and email me back to tell me what we need to do. I actually emailed her on Monday and said, "I don't really have anything to say, it just felt wrong that I've gone a whole week without emailing you." :) This whole experience has been tough, but it would have been so much more difficult for me without Rebekah's support.
lousy cell phone picture, bummer :)
I don't know how we'll survive without her but I guess we'll have to. We love her and we're sad to see her go but she'll be an amazing mom and we're happy for her.

Tuesday, August 30, 2011

A great day of therapies

As not-great as last week's PT session went, that's how great today's was. Raya's PT brought her 2 little girls with her and they were the PERFECT distraction for Raya. Her little leg muscles were like rocks today and she really needed some good soft tissue work on them, which she normally doesn't like very much. Today she did great since she had people there to watch. :) She was in a great mood and didn't cry once, which also doesn't happen very often. She usually has a meltdown at some point during her session.
She had a pretty good day all the way around today. I switched out her usual oatmeal & raisins for cream of wheat & raisins and she seemed to like it better. I can't say that I blame her. :) Cream of wheat is much less glue-like. :) After PT she had a nap and then woke up ready for her feeding therapy session. We saw our new therapist today (we alternate between 2 therapists every week now) and this time went much better. I was having a hard time with a couple of the things she had talked about doing the last couple times we met but we talked more about our plan of action today and she answered some of my questions and I'm feeling a lot better about it. She brought me some handouts with information about how to boost the calories in her food, what types of foods go with each stage of oral development (she is currently somewhere around the 10 month old range), and how to help her exercise her mouth. Lots of good info. :)
While her therapist was here, she gave Raya a piece of biscotti to gnaw on, but instead of just gnawing on it, she kept biting off chunks and eventually chewing and swallowing them. By the time our session was over, she had eaten the whole thing and was very proud of herself. :) Later, she told her daddy, "Cracker! Teeth!"
We talked about what our next steps & goals should be and her therapist is very excited to see what happens in the next 2 weeks when she comes back next. I am too, I just know it's going to be a lot of work for me. :)

Sunday, August 28, 2011

And so it begins

It seems that the cold season (as in runny nose virus-y season) doesn't care if it's still 115 degrees outside. It's here anyway. I had hoped that Raya would somehow be tough enough to resist whatever germs she might pick up by going to nursery but 4 weeks in, she caught her first bug. It really hasn't been too bad, just a stuffy nose & post-nasal drip and a little bit of middle-of-the-night croupy coughing one night. And yes, I'm being presumptuous in assuming that's where she caught it, but over the last month, that's the biggest variable that's changed in her life. And by far the germiest. (is that a word??)

Well, regardless of whether or not she actually got sick from nursery, we have definitely started to think about whether or not nursery is a good idea for her this winter. Of course I've always kind of thought about that with all the kids. Who likes having sick kids, right? As always though, it's different with Raya. Just in the past couple of days that she's had a stuffy nose, she stopped eating her oatmeal & beans completely. For most of us who are motivated by hunger, eating while we have a stuffy nose is annoying because we can't breathe through our nose, but we still do it because we're hungry and we have to eat. Raya could care less. If eating becomes difficult or painful for her, she'll just quit. After all, she got by for 19 months without doing it, so what's a little more? And this is just a tiny little head cold. I hate to think what would happen if she caught something worse, but after the last 21 months I can imagine. Especially now that she doesn't have the GJ tube anymore and I can't just run the pedialyte into the J tube if she gets sick & throws up. Anyway, it has definitely been something to think about.

We had a 90 day review with her support coordinator on Friday and got our respite hours increased, and I'm thinking about having a respite provider come and stay with her while we go to church on Sundays during the real cold & flu season. We'll see. It's at least nice to have that as an option. Luckily she's feeling better this morning and she ate the cream of wheat I made her for breakfast. At 19 calories per tablespoon, she ate about 115 calories, which is always exciting. :) It wasn't quite as difficult to clean up as the oatmeal either. A change in diet may be in order. :)

Ashtyn has been sick this week too. She stayed home from school on Thursday with a fever (she had puked in the middle of the night all over the bathroom and neglected to tell me until I smelled it from the stairs that afternoon). Then on Friday she felt better & wanted to go to school but I had to go pick her up at 1:30 because she had a 102.2 fever, which has hung around most of the weekend. Maybe I'll just quarantine them all!

Raya got to have PT at the pool on Wednesday. She wasn't a fan. We went to the pool at 9:00 in the morning, and thanks to the ridiculously hot August we're having, it was already 100 degrees by 9:00 and the water felt AMAZING. Her PT got some good passive stretching in before Raya started to freak out, so that was good. She also got some good deep tissue massage in on her legs, which were really tight that day for some reason. After that, Raya was pretty much done. All she wanted to do was cling to me like a little baby monkey and cry. We worked with her a little bit on learning how to climb out of the pool and then once she found a pinecone to play with, she was distracted enough that we got a little bit more work in before the time was up. It was a fun little change of pace but I'm not sure if we'll be doing it again anytime soon. It wasn't the most productive PT session we've had. Girlfriend needs to learn to like the water. :) She LOVES the bathtub and shower and splash pad and puddles but she can't handle being in a big pool where she can't touch the bottom and someone has to actually be touching her. I've noticed that her tolerance for being held/touched is much lower when she's in the pool.

Wednesday, August 24, 2011

Visit with the Allergist

We LOVE the 2 allergists that our kids see. They are so good with the kids, they're great about explaining things to me and answering questions, they're very generous with samples, and they're just really great people. Now if we could just get in & out of their office in under 90 minutes, it would be perfect. :) They do have a sense of humor about it though. You can tell by their choice of cabinet-top decor:

Raya saw her allergist yesterday and other than having 2 very bored and restless little girls cooped up in a 9x9 room for an hour, it went well. I caught him up on her progress in the past 4-6 months since we saw him last. I told him we're in the process of weaning her off of the medication that interfered with her allergy testing in February and he said that we can keep trying new foods with her for a few months and see if any issues come up.
I told him about when she had a skin reaction to the pureed rice she smeared all over her face & arms and he was surprised. He said it's pretty rare for someone to be allergic to rice. Raya never was one to stick with stereotypes though. :) He said to definitely avoid feeding her rice and products where rice is a main ingredient. Hopefully she'll be able to tolerate at least a little because rice is in EVERYTHING since most people aren't allergic to it. That does explain some things though. When Raya was first having issues with projectile vomiting, things got worse when I started an elimination diet and cut out everything that is a common allergen. The only grain I WAS eating was rice. Then to make matters worse, the weekend before she was admitted the first time, her GI doctor had me add rice cereal to the breastmilk for added calories and Raya puked her little guts out non-stop all weekend.
We're also avoiding dairy still. A few months ago, she switched from Neocate, which is totally hypoallergenic and as broken-down as it gets to Peptamen Jr, which is a little less broken down and has whey in it. Within a week or 2 of switching, her unpleasant lower digestive side-effects had gotten a LOT better but she had developed eczema on her thighs. Since the amount of dairy in the formula is extremely low, we're afraid that giving her any more than that small amount would cause problems for her so we're staying away from it for now.
So from here, the plan is to keep avoiding rice & dairy and keep introducing new foods and watch for reactions. Then, the next time she's getting blood drawn or being scoped or having an IV for whatever reason, I'm supposed to call the allergist's office and let them know and they'll order some blood work for more specific foods and allergens. I don't anticipate that being anytime soon so for now, we'll just keep letting her eat whatever she will eat and see what happens.
Oh, and in other news, when we weighed her yesterday, she was just barely over 26 lbs. That means she's tained 1 pound in the last 2 weeks so I'm pretty excited about that. That means even though I keep screwing up her feeding schedule that I'm still trying to get used to, she's still growing. :)

Tuesday, August 23, 2011

How to use a Zevex Enteralite Infinity pump bag for a gravity feed

To say that I'm excited about this wonderful little trick I just learned would be an understatement. I'm sure lots of other people already knew this but I'm going to share it anyway.
Gravity feeds are not my friend. Up until last week, I was doing Raya's bolus feeds with a 60ml syringe with the plunger removed. I can't tell you how many times Raya has accidentally (or on purpose) knocked it out of my hand and spilled it. Or how many times I've poured the formula in and unclamped the syringe and then had somebody knock on the door and I couldn't answer it. Then there was the time last week (and a couple times last spring) that I got impatient and let the formula run in a little too quick and she puked. And then there's the whole issue of feeding her when we're out of the house without accidentally spilling, etc. So yeah, gravity feeds have been a pain for me. UNTIL last week. Someone on one of my favorite facebook pages posted a link to a YouTube video (which I can no longer locate) about modifying a Zevex Enteralite Infinity pump bag so that it could be used to do a gravity feed. AAAAAAHHHHH! So great. Here's how to do it:
Locate the side of the tubing that has the little raindrop on it (the right side in this picture)

Pull the rubber tubing away from the hard plastic tube


Pull the rubber tube with the teardrop all the way off of the hard plastic tube

Use a sharp pair of scissors and snip off the tip of the hard plastic tube


Here's what it looks like after the tip has been clipped off
 
Reattach the rubber tubing, making sure to put it on tightly so it won't leak



Before plugging the pump set into the extension tube, prime the tubing with either water or formula and then plug the pump set in. If the formula doesn't start flowing on its own when the extension tube is unclamped, just put the cap on and give the bag a little squeeze.

Make sure there is either water or formula in the tubing and then connect it to the extension tube. Hang the bag on an IV pole or whatever else happens to be convenient

Then just let it run in. :) We give Raya something to nibble on while her tummy is filling up so that her brain can start making the connection between eating and feeling full. And it was 114 degrees today, which has nothing to do with gravity feeds.
  So there you have it. :)

Sunday, August 21, 2011

Not easy, but worth it

Are we tired of gross pictures of Raya plastered in pureed food yet? :)
I've lost count of how many times in the last 10 days that I've thought to myself how much easier it would be to just forget about feeding her food and let her keep getting all her calories from formula. SOOOOOOOOOOOOOOOOOOOOO much easier. Raya has averaged 2 showers a day since we started pushing the oral feeds. There is oatmeal, mashed pinto beans, and cracker goo EVERYWHERE. We can no longer leave cups of water (or anything else) on the kitchen table, microwave, or first 4 inches of the countertops because Raya can and will get to it. 
"Messy" doesn't even begin to describe it. She has now gotten more creative with her "eating" and has started trying to put the food directly from the spoon into her G tube. She usually fills the balloon port up and I'm afraid it will get clogged. (The alternative is leaving clothes on her while she eats and it's just easier to hose her off than try to wash oatmeal out of her clothes.) Her new thing tonight was spooning her beans into her nose and then sniffing and blowing to make the little lump of beans go in and out of her nose. I then had to carefully remove the beans from her nose later with a Q-tip. She thought it was funny.
She had very little interest in eating her beans tonight so she just dug in with her hands and made a big mess. I didn't bother taking a picture because it pretty much looks just like all the other pictures of Raya covered in food. And the floor covered in food. And the table, high chair, and anything left within a 2 foot radius. It's worse when she doesn't feel like eating because there's more left to play with. It would be SO much easier to just forget about it and go back to putting all her calories through the tube.
(and here's the part where I unload. feel free to skip it. the end will still make sense.) I've been struggling a bit this past week. It's a combination of things. My older 2 kids are back in school now and on Tuesday night, I went to curriculum night where each teacher goes over what they'll be covering this year and how they run their classrooms. I left the school that night feeling overwhelmed and almost in tears. My oldest daughter is in 3rd grade this year, and she had a pretty lousy year in 2nd grade. Raya was in the hospital on meet-the-teacher night last year, then she was in the hospital again for parent-teacher conferences (for half of October) and then I flew to Ohio with her for motility testing the last week of the semester in December. In between all of those, I was struggling to keep my head above water with feeding & medication schedules, lack of sleep, and everything that goes along with trying to keep a household running and I just wasn't there for Ashtyn & Cole when it came to homework and making sure they were doing their reading. I felt terrible about it, but I was just plain maxed out. On top of everything going on at home, Ashtyn's teacher didn't seem to care whether she did her work or not, never bothered to let me know when she didn't get work done, and wasn't bothered by the fact that a child who had been getting 3s and 4s the previous 2 years of school suddenly had 2s and a couple of 1s on her report card. Her classroom was chaotic and her solution was to isolate Ashtyn & give her a desk all by herself off in the corner somewhere. It just wasn't a good year for her.
This year, Ashtyn has the PERFECT teacher for 3rd grade, but I found out at curriculum night that there are too many kids in both of the 3rd grade classes and by law they're required to split the classes. There's no way to know at this point whether she'll get to keep her wonderful teacher or not, and if she did get moved to a new class, it would pretty much be like starting all over again for the school year. Coming off of the 2nd grade experience she had, I don't know how she'd be able to catch up after that. Not to mention that we have no idea who the new teacher would be or what he/she would be like. So that has been on my mind a lot this week and it bothers me not knowing what's going to happen with it.
Then there's the whole issue of making sure they both get their homework done AND actually LEARN what they need to learn. I don't know why curriculum night stressed me out so much more this year than it did last year except that this year, I'm getting adequate sleep and my brain is actually capable of functioning enough to know that it SHOULD be stressed about the kids' education. :)
On top of all of the pressure of making sure the older kids' needs are met, we're now supposed to be offering Raya food 5 times a day, not letting her eat snacks except for at her 2 snack times, calculating how many calories she swallows, and then filling in the rest with formula for the 5 feed times. I am still trying to figure out how to do that when we can't just be at home all day long, especially when it involves the meals of pureed food. Ever since Raya started to have problems, I have felt like just when we get settled into a comfortable routine with her feeding schedule, something forces us to make a change. We had just gotten into a good routine with her after a few weeks of adjusting to the G tube/gastric feeds and now we're making some of the biggest changes we've ever made by counting actual food into her diet. THAT has been mildly challenging, to say the least. I have, however, calculated out how many calories per tablespoon are in the oatmeal & raisins and the beans I've been giving her and that makes it a lot easier to guess how much she's eating. So that's been a lot to deal with over the past week or 2.
Then there's that poor, neglected little kid #3 who spent last year being bounced around to different friends & family members during Raya's many appointments and her hospital stays. She goes with us to OT and gets jealous if there's something she wants to play with that she can't because Raya's therapist is working with her on it. I'm trying to devote special time to her each day now that the big kids are back in school so she'll know that she's important too. We've been doing it either while Raya's strapped into her high chair for a feed or else when she's taking a nap, although I really need naptime to do some of the things I can't do with her around. What I REALLY need is a cage... KIDDING!! (sort of)
So anyway, all of that was weighing very heavily on me Tuesday night and I was not feeling equal to my tasks. I spent a long time on my knees praying before I went to bed that night. I went to bed already feeling lighter after sharing my burdens with the Lord. I have learned that when I feel like my life is getting out of control, the best thing I can do is let go of the things I can't control and take charge of the things I can.
That was the way I felt when I woke up on Wednesday and I know it was God's way of picking me back up and dusting me off and helping me feel like I can handle everything. I got SO much accomplished on Wednesday. Raya's PT came early that morning, so we were done with PT by 9:00. I canned 7 pints of chicken, made 1 batch of homemade salsa and froze the veggies to make another batch, made homemade whole wheat graham crackers (with wheat that I ground myself in the wheat grinder), made dough for homemade tortillas, cooked a batch of pinto beans (with onions from our garden), bagged up the raspberries that were on cookie sheets in the freezer, cooked the tortillas, gave Raya 2 good meals that she actually ate most of (oatmeal & beans), fed the kids dinner, and then PATIENTLY sat for over an hour helping Ashtyn with her homework (that in itself is a HUGE accomplishment for me because I am not the most patient homework helper!). By the time I went to bed that night, I was feeling SO good about myself and I was so thankful that I had that boost of confidence to help get me back on track.

Life is NOT easy.

Teaching a 21 month old to eat after over a year of not eating is hard. Letting her do it herself is hard. Cleaning up mess after mess after mess is hard. Feeling like a failure when she doesn't eat is hard. Going along with a feeding plan that I don't totally understand or *gulp* agree with is hard. Not giving in to the sometimes overwhelming desire to throw in the towel and go back to 100% tube feeds is HARD. (especially while chiseling dried oatmeal off the kitchen floor)

But the point is not for things to be easy.

There's a song that says, "Sometimes the hard thing and the right thing are the same." This is hard, but it's also right. Someday, this will all be over and all that will be left are memories and a little round scar on her belly. I think the scars in my heart will have faded more by then. And it will have been worth ALL of this.

Thursday, August 18, 2011

223

Raya was a rock star yesterday and ate 223 calories! (give or take a couple :) It was definitely a day to be marked on the calendar. That's more oral calories than she's taken in since she was 5 months old and stopped eating completely. She ate 105 calories at breakfast (oatmeal+raisins+cinnamon) and 118 calories for dinner (cooked, pureed pinto beans+a little bit of salsa juice :). I've been measuring everything in exact amounts and then calculating how many calories per tablespoon. It's a lot easier to estimate how much she's actually eating.
We're excited but we also realize that just because she did it yesterday doesn't mean she's "cured" and it's going to happen every time. This morning, she was more interested in playing with the oatmeal again and probably only ate about 65 calories. Then she tried to shovel the rest of it directly into her feeding tube:
One of the biggest lessons that we've learned from this whole experience is to celebrate the small victories when they come and to not dwell on the steps backwards. Both will happen, and you just have to take them as they come. Now if you'll excuse me, I need to go dig pureed oatmeal out of the balloon port on her G tube before it dries and hardens like concrete. :)

Wednesday, August 17, 2011

Whew. And puke.

I'm feeling relieved right now. It turns out she doesn't hate oatmeal like I thought after yesterday's complete failure at breakfast. (meaning I completely failed to get ANY of it into her mouth) Yesterday, she had a couple bites of oatmeal+banana and then dug in with both hands and plastered her entire upper body with it, including her eyes, nose, and ears and the front half of her hair. But as it turns out, she doesn't hate oatmeal, she just doesn't like bananas! I can TOTALLY accept that. :)
We had our second visit with her new feeding therapist after school yesterday too. It turned into another session of me talking to the therapist the whole time and not really doing ANYthing with Raya, but I needed it. I was a little confused by the time she left because I thought it made sense for the next step in the process to be transferring the formula from the night feed to the day feed so she has the opportunity to have her stomach really be empty in the morning. She said that's not how we need to do it though, and that if we try to give her all 30 oz of her formula during the day plus additional fluids AND try to get her to eat, she'll never be hungry enough to eat. It makes sense, but when she said that our first priority is to get Raya to eat more during the day, my heart sunk a little. What the heck have I been trying to do for the last 21 months?!? I thought that was kind of our ultimate goal, not just another step in the process.
I understand what she means though. If I take her entire calorie count and pour it in during the day, it's going to overload her little stomach and the likelihood of her wanting to eat or having room to eat more food will decrease. Our plan is to do 400ml of formula overnight instead of 500, and then have 5 feeds during the day. Before each feed, we will give her the opportunity to eat something. 3 times a day, it will be larger meals and twice, it will be snacks. The down side of that is that I can't just stick her in the high chair and give her cheerios to keep her out of trouble like I've been SO enjoying lately! We have to stop letting her graze all day though.

When we were talking, the therapist kept making reference to hunger and Raya needing to not snack all day so that she'd be hungry, and I had to bite my tongue a lot. I am convinced that Raya does not feel hunger, and/or recognize the connection between hunger and the need to eat. For her, eating is just an activity still. BUT, I will go along with what the feeding therapist is suggesting because she has more experience with this than I do and I will be the first to admit that I don't know what I'm doing. I've never had to teach a kid to eat before!
Well, anyway, back to this morning. Things were 100% better with the oatmeal today. She ate 6 1/2 out of 8 tablespoons (I did oats, raisins and cinnamon today instead of the banana) and at 16.25 calories per tablespoon, she ate 105 calories. YAY!! Then she had a nap, and then meds. Then she sat in the high chair and licked/nibbled/spit out a slice of apple while I did her 100ml bolus feed. *Sigh* and that's when our almost 3 month vomit-free streak ended. All good things must come to an end, right? It reminds me of the meat packing plant down the road from where I grew up. They had a huge marquee sign out front that said "__ days with no accidents." Maybe I should make a sign like that for Raya. :)

Tuesday, August 16, 2011

The rules of the game

Have you ever played a game with a little kid who keeps changing the rules? That's pretty much what life with Raya is like these days. She's SO over oatmeal now. She did great with it the first couple days but yesterday, she only ate half of what I gave her (75 calories). Today she BEGGED me for "mee-o mee-o", took a couple little tastes and then dug in with both hands and plastered her entire upper body with it. Then she started crying and saying "Owie!" because she had oatmeal all around her eyes and pretty much everywhere else. I wiped it off of her face and then said, "Okay, eat one bite and then you can get in the shower." She said, "O-day." and opened her mouth but never even attempted to swallow it. I'm not sure if we'll be able to get her to eat oatmeal again anytime soon.
That's what I mean about Raya changing the rules. Just when we think we've figured something out, she changes her mind and we have to keep looking. I think I'm going to try putting whatever we have for dinner tonight in the blender and see if she'll eat it. Pretty much anything can be made into the texture she seems to tolerate if it's in the blender. :) I know she likes spicy things (which I'm sure goes really well with her reflux :) and she likes strong, bold flavors, so I kind of don't blame her for not wanting oatmeal with banana. BORING! I'm glad her feeding therapist is coming today because I need some guidance. :)
I finally bit the bullet and asked the nurse to ask the doctor if we can wean Raya off of one of her meds. It's one that I pretty much LOATHE for several reasons. The reason I want her off of it is because A. she hasn't puked for over 2 months (almost 3) and its purpose is to keep her from dry heaving/vomiting in the early morning, and B. because it's the one that threw off the results of the allergy testing she had done, which I would like to have redone at our next allergy appointment, which is coming up next week. Not to mention that I get really tired of having to get it refilled every 2 weeks and then barely being able to squeak by with it because they give us the exact amount. Her dose is only 0.65ml, so a 2 week supply is only 9.1ml (slightly less than 2 teaspoons). It's ridiculous!! Then there's the part about how it's a neuro-transmitter and she can't stop taking it abruptly or it could cause serious side effects. I'm just ready for that monkey to be off our backs.

Monday, August 15, 2011

Little Ms. Chief

Nothing but mischief:
That's 2 bottles of blue craft paint, by the way. Oh, and do you like how the big kids clipped a pacifier (which she hasn't used since she was 5 or 6 months old) to her shirt? And this was after she had already eaten dirt, rocks and red paint earlier in the day. I keep telling Donny THIS is why I never get anything done around here! :)

Friday, August 12, 2011

Accepting, embracing, and moving forward

After moping and questioning and being paranoid for 2 weeks, I'm finally feeling ready to move forward. It really is difficult to put into words why a successful transition from GJ tube to G tube (intestine feeds to stomach feeds) has been so hard for me to accept. I'll try anyway though. First, when you spend 18 months of your child's life trying to document every little detail of her life in hopes that something will be the key to finding an explanation/diagnosis that never comes you end up questioning yourself and questioning whether there even IS something wrong. I know logically that makes no sense because there definitely is something wrong with a baby that vomits 8 or 10 times a day.
And second, when test after test comes back normal though, you start to feel like you are the problem with the equation, especially when you fly her across the country to see a specialist and her symptoms suddenly disappear, only to reappear when you get home. When nobody can find answers and the problems start going away as mysteriously as they started, it weighs heavily on a mother's heart whether that's logical or not. Emotion is rarely logical though. Oh, yeah, and then there's that whole part about how if something seems too good to be true, it probably is. Like a baby who vomits non-stop for 18 months and then suddenly stops...
For the last 2 weeks, I've been living cautiously and waiting for the other shoe to drop. I didn't used to be a pessimist, and I still don't consider myself to be one, but I think sometimes the loss of naivety closely mirrors pessimism. I never meant to look at the situation with a negative point of view, but we've had so many experiences where we've tried to be positive and take steps towards getting Raya to eat, etc. and had them turn out negatively. That makes it hard to trust in the process because it makes me feel like I'm going through a maze with a blindfold on sometimes. And finally, I'm slowly accepting the fact that even though God answers prayers, that doesn't mean He'll explain the answer. That's where faith comes in. When you're asking for miracles, you don't put conditions on your request, and I guess that's what I've been doing. Knowing that we will probably never fully understand the medical reasons for everything (or anything) that Raya has gone through is a hard pill to swallow, but I have faith that if and/or when God wants me to understand those things, He will show them to me. In the mean time, it's time for us to accept the blessings we've been given and move on. In other words, take it and run! :)
We hit a really exciting milestone today that has helped me to feel more ready to let go of the pain and frustration of the last year and a half and look forward to the next phase. For the very first time in her whole feeding tube life, we were able to subtract formula calories from today's feeds because she ate enough of something to replace them. That is HUGE for Raya. She consumed about 100 calories at breakfast and about 50 at dinner. I never thought I'd be counting calories for my 21 month old, but I can't tell you how exciting it is that she ate enough calories TO count! Her doctor said that for now, as long as she's still getting 750 formula calories, she can fill in her other 150 with food as long as she eats at least 100 calories of something healthy. Today, she had oatmeal with banana and black beans & corn. For now, the excitement of having that happen today for the first time is helping me to not think about the fact that EVERY time she eats pureed food, she has to have a bath, which means at least one a day. :) When she eats oatmeal, I end up putting Raya AND the high chair and her bowl & spoon in the shower so I can clean them all at once. Hope all that oatmeal doesn't clog the bathtub drain but it's SO much easier than trying to wash her and then trying to clean up the oatmeal that dries hard as a rock while I'm cleaning up Raya. :)
A few months ago, I had let go of the idea that she'd be eating by a certain point because that was a sad thing for me. Not that I had given up on her, I just had to stop dwelling on something that was out of my ability to control. Putting a time line on a child with unpredictable special needs, at least for me, is setting the stage for frustration and disappointment, so I stopped trying to do that. Now that things are turning another corner, I'm feeling like I can make some new goals for us again. One of the next big goals we have is to get Raya off of her night feed. If we can work her stomach up to tolerating larger amounts at a time, she'll be able to have more during the day so she doesn't have to be on the pump at night. At that point, we could move her out of our room, which would be nice since she's coming up on 2 in a couple months. :) We've never kept any of the kids in our room as long as we have with Raya, but as long as she's being fed overnight, she needed to be in our room for safety and convenience reasons. Not to mention that there's very little likelihood of either of us waking up if the pump alarm goes off when she's in the kids' rooms. :)
She had a weight check on Wednesday. She's now up to 11.47kg, which is a little over 25 lbs. I'm pleased with that and so is her doctor. (Now if we could just get some weight on her "big" sister, who is over 2 years older but only outweighs her by 5 lbs...) I have a few more things I'd like to do with Raya in the next couple of months but I need to talk to her doctor first. I'm so grateful for a doctor (and heer amazing nurse) that listens, values my opinion, and trusts my judgement enough to give me some leeway when I ask for it.
Well anyway, that was a long way of saying I've accepted the unexplained progress and I'm excited about making whatever steps forward that Raya's little body can handle. I'm sure there will still be bumps in the road along the way because a child who eats through a hole in her stomach is bound to have SOMETHING come up here and there, but now I feel like we're ready to get back out on the road and at least try to move forward.

Wednesday, August 10, 2011

Never mind, balloon's not leaking

After a few days of being baffled as to the inconsistent water levels in Raya's G tube balloon, I'm pretty sure I figured out what's going on. I thought the balloon may have had a leak in it that was only leaking occasionally because it was probably on the upper part of the balloon where the stoma was keeping it from leaking. Pretty sure I was wrong though.
Okay, so I'll admit I'm a little on the lazy side about flushing the tube as often as I should and we used to ALWAYS leave the extension tubes on. That was because she was on continuous feeds and/or drainage for upwards of 18 hours a day, and it really bothered her skin to have tape put on and then taken off multiple times a week, let alone every day. It was easier on all of us to just leave the extension tubes taped on. Fast forward to now, she's only needing to be fed about 15 hours a day and it's less than that when we do bolus feeds, so I've been really good about flushing the extension & unhooking it so the backflow valve doesn't get stuck or worn out (which leads to leakage). Most of the time, when I unhook the extension from the G tube, I leave it taped to her stomach so we don't irritate her skin. Here's the fun part.
Yesterday when she pulled out her tube, I noticed that there was no water left in the balloon, which I thought was odd. Then suddenly last night it dawned on me that Raya had been trying to plug the extension tube in to her G tube and I realized that what had most likely been happening was that she had jammed the tip of the extension tube into the balloon port on the G tube and let all the water out. What a little stinker! And a smart one at that. :) Once again, I have learned my lesson and won't be leaving any extension tubes taped on without having them plugged in unless she's wearing a onesie.

Tuesday, August 9, 2011

Keeping me on my toes

If I have bags under my eyes, it's probably (still) Raya's fault. :) Now that she is pretty much back to digesting like a normal human being (aside from her food's method of entry, of course) she seems to have an endless supply of energy. I also still think her busy-ness has something to do with her sensory issues, and now that her stomach is more heavily involved in digesting her food, her hypersensitive gut makes her fidgity.
Anyway, every time I turn around lately, Raya is on the kitchen table looking for abandoned food, under the kitchen table looking for food that's been dropped on the floor (or thrown by her at an earlier time) or climbing over the back of the couch or climbing up to the kitchen counter to get into whatever is on it or getting into things in my room or getting into things in the pantry or getting into things in her medical supply bench or getting into things... Are you catching the recurring theme here? Basically she's like a normal 21 month old (tomorrow). Only I don't remember the others being quite as busy as her. I at least don't remember any of them climbing like she does at this age.
Saturday afternoon, Ashtyn came in the kitchen and said that Raya was on the bathroom counter. This was about 5 minutes after she had come to tell me that Raya was getting into my makeup bag on the bathroom counter. I went in to check things out and here's what I found:

I think she was saying, "Hi Mommy!" and/or "Hair!" when I took this one.


And we now know how to turn the water on & off. Fabulous. :)



She is one silly little girl!

Today was really fun too. Kaida and I were having "Mommy and Kaida Cooking Class" this morning while the big kids were at school so Raya was sitting in her high chair (aka her favorite place in the whole wide world right now) having a "nah" (snack). I took a picture of Kaida cutting out biscuit dough and then Raya started saying, "ME!" to tell me she wanted her picture taken, so I took one:
Then Kaida & I finished up what we were doing so we could get ready to take Raya to therapy. About 15 or 20 minutes after I took the first picture, I turned around and she was holding her G tube in her hand and saying something, I forget what. When she first got her G tube I was paranoid about having it come out but it's kind of like getting a new car. Once you put the first dent in it, you can relax because you've already done it once. It was the same with the G tube. It got pulled out once, we put it back in & everyone survived so when it happened today, it wasn't a big deal. I don't understand why all the sudden she's messing with it though, she never messed with the GJ tube (thank goodness).
Anyway, since I had the camera right there I took a picture before I put the tube back in:
Someday, it really will look like another belly button. :) Honestly, the worst part was all the gross stuff that came out of her stomach when the tube wasn't there to hold it all in. Her shirt was soaked and she was covered with whatever had been in her stomach. Well, actually, the fact that she kept sticking her finger in the hole was kind of gross too.
I put it back in, no harm done, and we went on our merry way to OT. I do think something funky is going on with the balloon on her tube though. The water level fluctuates more than any other G tube (or GJ) that she's had. Plus, if you look in the picture, there's no water in the balloon at all and that was right after she had pulled it out, so there should have been water in it. I've checked the balloon though, and it still holds water so I'm not sure how it's leaking.
Oh, and the last couple of days her stomach has been doing this really creepy thing where it acts like it's trying to digest her tube. I tried to lift up the tube a little yesterday to put gauze under it and it was like there was someone on the inside of her stomach pulling it down so I couldn't get under it. SO wierd! She has a weight check tomorrow so I'm going to bring it up with the nurse. Busy little girl!!

Monday, August 8, 2011

Eating oatmeal

A certain little red-haired girl decided she wanted to eat oatmeal for breakfast this morning. I made a packet of banana oatmeal (because nobody else will eat it) and put it in the blender with half a banana. The little pill ate all of it except for what she painted herself with. That required a second shower for the day, the first being due to an overflowing diaper of epic proportions. (because it's the first day of school and she wanted attention too:) Anyway, we seem to be on the right track now. Full speed ahead! :)
I know she doesn't look too happy in the picture but really, she was. She's trying to say "Me!" for the camera. :)

Thursday, August 4, 2011

One extreme to the other and Happy Tubiversary!

If you're looking for Raya, she's probably in the high chair stuffing Cheerios in her mouth. Or under the kitchen table grazing for whatever the big kids might have dropped. Or on top of the kitchen table looking for abandoned food. We have most definitely gone from one extreme to the other. We are no longer in the stage of gagging & puking just because somebody looked at her with food in their hand or because she picked up a tiny crumb off the floor and put it in her mouth. Now we have moved into the phase of if it even remotely resembles food, she wants to put it in her mouth, even if she's not coordinated enough to actually eat it.
The funny thing is that I'm 99% sure that Raya's eating has NOTHING to do with being hungry. She's gone for as much as 48 hours with nothing but IV fluids and didn't care at all as long as Child Life kept bringing her new toys to play with. I'm pretty sure that the entire reason she eats is because it's a novel thing for her. It's new and interesting and it's another way she can try to be like the big kids, so she does it. I'm not complaining about that by any means, I'm thrilled that she's at least experimenting with food.
So far, the switch back to a G tube from the GJ tube has gone off pretty much without a hitch. Except for one thing. We seem to be having leakage problems again. Back when she got her very first G tube, she leaked profusely pretty much the whole time she had it. (see here) That was not pleasant. :) This is nowhere near the way that was, but I have noticed that she's leaking a little formula from around her G tube. This morning, the gauze that I took off was dry but it had been soaked about halfway across by formula. The kicker was that it also had some little flecks of the mashed pinto beans I gave her last night on it. It's kind of gross, to say the least. I can clean the outside of the stoma, but it's not like I can clean out what's on the inside of the hole around the tube. Hopefully it won't cause a problem for her.
Last but certainly not least, yesterday was Raya's 1 year tubiversary. Her G tube surgery was August 3rd, 2010. We are light years ahead of where we were a year ago and very grateful to have so many unpleasant experiences behind us. Having her G tube put in was definitely one of the best decisions we've made for her, and probably THE best decision we've made for our own sanity. It's funny, the more time that passes, the more negative my feelings towards the NG tube become. :) We held out as long as we could on getting the G tube because we had hoped that the feeding tube would be temporary. I still don't regret having waited as long as we did because I feel like we gave her as much time as we could to see if things would get better. Having said that, I would not wish the NG tube experience on anyone. Heaven forbid, but if we ever were to have another kid who needed a feeding tube, you can bet your booties we would opt for the G tube a lot sooner than 6 1/2 months!
Anyway, I just want to say once again how grateful we are for the technology of feeding tubes that has literally saved Raya's life.

Raya with her brand spankin' new belly piercing
On day 3 or 4 of her 5 day hospital stay

My poor baby all drugged on morphine
And here we are one year later:

Tuesday, August 2, 2011

Simple.

The other night, I was talking to my grandpa on the phone like I do every Sunday night. As always, he asked, "How's that little Raya doing?" I let out a disgruntled little laugh and said, "Oh, she's doing just FABULOUS." and explained to him that none of the complications we were anticipating from her tube change came to fruition and how frustrated I was feeling that she could have so many problems for so long and then suddenly just be fine. I said, "This is too easy. It just seems like after everything we've gone through and everything we've had to do in the last year and a half, this should be harder or we should have to do something big in order to move forward. Grandpa, can it really be that easy?" He chuckled and said, "Well, I guess sometimes it just is, Brandis."

That conversation got me thinking about a story from the Bible. Naaman was "captain of the host of the king of Syria". He was a very important person, but he had the dreaded disease of leprosy. That made him unclean in the eyes of society. He heard that there was a prophet in Samaria who could cleanse him of his leprosy, so he took his chariots, servants and horses and went to see Elisha the prophet. Elisha sent a messenger to Naaman who told him, "Go and wash in Jordan seven times, and thy flesh shall come again to thee, and thou shalt be clean." (2 Kings 5:10) When Naaman heard that, he became angry. "But Naaman was wroth, and went away, and said, Behold, I thought, He will surely come out to me, and stand, and call on the name of the Lord his God, and strike his hand over the place, and recover the leper.
“Are not Abana and Pharpar, rivers of Damascus, better than all the waters of Israel? may I not wash in them, and be clean? So he turned and went away in a rage.” (2 Kgs. 5:11–12.)
Why was Naaman angry? He wanted something bigger. He wanted the pomp and circumstance that he felt he was worthy of. He wanted "a dramatic miracle at the hand of the prophet" rather than something as simple as bathing in a river seven times. (reference) Eventually, he humbled himself and followed the counsel of the prophet and was cleansed of the horrible disease.
I have done a lot of thinking in the past 5 days. After all of these difficult months filled with doctor appointments, therapy appointments, weight checks, blood draws, diagnostic imaging, cleaning up more vomit than I ever could have imagined, and all of the ups and downs that have come with all of that, can it really be so simple as changing her back to a regular G tube and her stomach can suddenly tolerate it? Shouldn't there be some grand event to bring everything to a resolution? Sometimes, it just IS that simple. In the book of Alma, it reads, "Now ye may suppose that this is foolishness in me; but behold I say unto you that by small and simple things are great things brought to pass; and small means in many instances doth confound the wise.
And the Lord God doth work by means to bring about his great and eternal purposes; and by very small means the Lord doth confound the wise and bringeth about the salvation of many souls." (Alma 37:6-7)
Maybe all of the things we've gone through up to this point ARE the "grand event" that I've been feeling like we needed to have, or maybe I've just gotten so used to the chaos that calmness is uncomfortable for me now. And maybe something as small and simple as feeding Raya through her intestine for 9 1/2 months was great enough to allow her stomach to prepare to digest food like it should. Why? We may never know. Sometimes things happen (good or bad) with no explanation.

As much as we would like explanations, the fact of the matter is that God doesn't HAVE to explain Himself to us. He has reasons for everything but that doesn't mean that we always need to understand or even know those reasons right away, and we may never know them in this life. It takes a lot of humility to accept that, which is something that I am obviously still working on. However, I believe that if we take what we are given with the knowledge and faith that it is given to us by God for our good, that faith will be a catalyst for us to learn things about ourselves that we wouldn't have otherwise been able to learn. During that journey, we will meet other people who are starting out on a similar road and we will be able to help them in ways that no one else can because of the experiences we have had.
This is not to say that I am completely "over it". I still would like to understand what has caused all of the pain & suffering she has experienced during her 20.75 months of life and it still bothers me that the mystery ailment seems to have resolved itself. I still have moments where I look at her (like while she's standing on the kitchen table again, shoving somebody's abandoned lunch in her mouth, which there is no chance of her chewing and swallowing) and think to myself "WHAT THE HECK IS HER DEAL??"

The fact that she has done well over the past 5 days is great, but reality is that there is always a possibility of certain complications with G tubes, so although the worst is probably over for Raya, there will probably still be bumps in the road. Overall though, we really are thrilled at the progress she is making and especially the leaps and bounds she has made over the past 2 months. I have even started to allow myself to entertain thoughts of Raya being able to go to kindergarten without a feeding tube. It would be fine if she still had it then, but I'm starting to have a little glimmer of hope that maybe she won't.
She made her grand return to occupational therapy today. I say it was a grand return because she was in desperate need of OT. She's been a big ol' sensory mess for the last 3 weeks. After her giant hour long meltdown at PT on Friday, I was afraid she'd do a repeat performance today but she did great. She was a little bashful at first but by the time we got halfway through the session, she was playing her little heart out and happier than I've seen her in 3 weeks. She even WILLINGLY crawled through the little pop-up tunnel that normally sends her into frantics and had a smile on her face the whole time. It was obvious that all of the things her therapist did with her today really helped her to feel better and I'm SO glad we're back into our therapies.
We also got to meet our new feeding therapist today. We have one that we've been seeing since Raya first started early intervention services when she was about 5 months old, but she's so busy right now that she can't come more often than every other week. Luckily, the clinic where we do OT at had a feeding therapist (who I've heard great things about) who happened to have an opening for home therapy every other week, so we're going to alternate weeks between the two therapists. I'm really excited about having more feeding therapy now that Raya is finally at a point where she's ready to be pushed a little more.

Monday, August 1, 2011

Raya's first REAL day of nursery, with a moral

At our church, when kids turn 18 months old, they can go to the nursery class for the 2nd and 3rd hours of church. Raya was technically old enough in May (read about that here) but ended up not going. At first, it was because she started sleeping through most of the time that she would have been in nursery. Then her GJ tube broke and she started having problems with a lot of bile backing up into her stomach, which needed to be drained for several hours a day. That also made it so that she had to be on the feeding pump for about 20 hours a day again. I had told myself that the next time she was awake for the 2 hours of nursery, I would take her in. Then that day came, and I just couldn't do it. Who in their right mind would send their kid to a little classroom full of other busy, curious 18month-3 year olds for 2 hours with a feeding pump backpack on (with tubes coming out of it) AND a catheter bag full of fluorescent yellow-green bile hanging from a tube taped to her stomach?!? There were just too many risks and too many things that could go wrong. The risk of the tube getting pulled out ALONE was enough to keep me from wanting to take her to nursery since that would mean a definite trip back to the hospital, and there are no interventional radiologists there on Sunday so it could have even meant an overnight admission until Monday. So not that we really need to justify to the world why we didn't take her, but that's pretty much why. Too many risks.
The week before we left to go to Utah & Idaho, I was in the foyer during Sacrament meeting (the first hour of church) having my weekly wrestling match with Raya and casually mentioned to the nursery leader that eventually, I'd bring her in. She said something to the effect of, "Oh, it's okay, don't worry about it. Whenever you're ready, just bring her in." As if it was because of ME not being "ready" to let my baby go to nursery! I was thinking, "Oh no, honey, you don't understand! This is NOT about me!" When I walked Raya in to the classroom yesterday, I told the 2 nursery leaders that now that Raya has gone back to a G tube, it's okay for her to come to nursery, or something to that effect.
Then I tried to give them a brief rundown of Raya's lack of eating skills and tried to emphasize the fact that even though she is really good at biting food and filling her mouth with it, she doesn't know how to chew & swallow and that they would need to really watch her closely when they gave her food. I told them that as far as snacks go, if they wouldn't give it to a 6-8 month old, they shouldn't give it to her (i.e. NO fruit snacks/chewy things), and that most likely if they gave her water, they should expect her to soak the front of her dress with it & that that was okay. :)
I had to laugh because when I was about to walk out, Raya was standing facing the other kids with her back towards me and they were inspecting her like a bunch of little monkeys inspecting the new monkey. They were all swarming around her touching her (that made me a little nervous because of the tube and instantly validated my previous worry about having her in there with the GJ tube) and it was rather amusing. Then I forced myself not to think about the germs she will be exposed to and walked out of the room. I peeked in the window about an hour later and before I even got down the hallway, I could hear a kid crying through the door. It wasn't Raya though, she was standing on a chair. Fabulous.
When I came to pick her up, I expected her to react the same way she reacts when I walk through the door at home: either crying & whining and clinging to my leg or else "Hi Mommy!". She did neither. She just casually walked across the room and stood there for me to pick her up. They said she did really well and she even ate some goldfish crackers & a graham cracker. By the time we got home, she was completely out for the count:

(excuse the lack of a sheet in her bed, her morning diaper runneth over, thank you liquid diet)
 So this very long story does have a moral, which is: Trust your instincts! There were times during the last 3 months that I seriously questioned why we were keeping her out of nursery. It would have been SO much easier to just let her go rather than try to keep her quiet in the adult classes and then wrestle with her in the hallways until we were both worn out & go home early. Or it would have been easier to just not bring her to church at all. Maybe it would have been fine and maybe nothing ever would have gone wrong, but it was not worth the risk to find out. The fact of the matter is/was, we didn't feel good about sending her, and nobody knows our child & situation better than we do.
As frustrating as the last few days have been for me (did I mention that Raya's still crying & throwing fits most of the time even now that we're home?) I am feeling really good today about the fact that I was able to trust my instincts about not sending her to nursery and that we know it was the right decision even though it was difficult. It was a little boost of confidence for me. Now I have to get used to sitting all the way through church again. :) The end. Happy first day of nursery, Raya!
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