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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.**

Friday, January 31, 2014

Where has January gone??

Time flies when you're rapidly approaching your due date. I've been scrambling trying to get as many things checked off of my to-do list as possible, and it was going fine until 5 out of the 6 of us caught a cough a couple weeks ago. It's a dry, unproductive cough that wakes you up at night and doesn't respond too well to cough suppressants. I finally got desperate this week and begged my OB for SOMETHING to help me get some sleep after having a few miserable nights in a row where I was awake more than I was asleep. Hopefully we can all get rid of it before we have a new baby in the house.

Raya was starting to get over her cough but then she spiked a fever yesterday and still has it today, so either she's caught something else now or her cough is morphing into something else. It's so sad when kiddos don't feel good.

She's on about her 10th episode of Jake and the Neverland Pirates so far today and hasn't moved off the couch much. You know she doesn't feel good when she just lays on the couch and her toys aren't talking to each other!

 Aside from everybody being sick, the last couple weeks have been pretty nice. We've spent a lot of evenings home snuggling on the couch and watching movies. I couldn't help but laugh when I walked in the other night and saw that Raya's animals were comfortably lounging on the couch for movie night too. :)
She is so funny! She was frowning in the picture because the flash went off when I took it and her eyes have been super sensitive to light lately. We were leaving the school earlier this week and when we walked outside she covered her eyes and said, "My brain hurts." I said, "Your brain hurts? What do you mean?" She said, "My brain hurts! When the sun is bright it makes my brain hurt!" So when we got to the car, I loaned her my sunglasses. About 2 minutes into the drive home, she said, "Um, Mommy, these glasses aren't very good." and took them off. Stinker!

She's really enjoying that she's learning how to write her name. I was making dinner a few nights ago and almost tripped over her because she was laying on the floor in the kitchen & I hadn't seen her. I asked her what she was doing and she said, "There was water on the floor so I'm writing my name." And sure enough, she was using the puddle of water to write her name with her finger on the floor.

There have been times lately when I've had my doubts about how well having to share Mommy is going to go over with her but she says she's excited to have "the baby sister". (who, by the way, she is still convinced that we will be naming Indilla. No idea where she came up with that but gotta give her credit for creativity.) We've washed a few things and Raya thinks it's cute how tiny the clothes are. She assures me that she's going to be a "super good helper girl" so hopefully she's right. The last 2 weeks have been exhausting because of the lack of sleep. I've woken up having coughing fits, woken up because of other people having coughing fits, woken up to go to the bathroom about half a dozen times per night (par for the course at this stage of pregnancy), woken up because the feeding pump was beeping, and woken up because the child attached to the feeding pump was crying about being attached to the feeding pump that was attached to the outlet. It's hard to imagine throwing a newborn into the mix but we'll manage. People like to say that having interrupted sleep at the end of a pregnancy is just to prepare you for having a newborn, and I kind of want to punch them in the throat. It does NOTHING to prepare you except rob you of what little sleep you could be getting BEFORE the newborn comes! Hopefully things will settle down again and everybody will get over the crud and get back on normal schedules. I want my happy, smiley girl back!

Monday, January 20, 2014

A little bit of reflection on Raya's 4th Tubiversary

If someone had told me 4 years ago this week that Raya would still be getting 85% of her calories from tube feeds 4 years later, I wouldn't have believed it. And I probably would have cried. The last 4 years have been filled with things that I could never possibly have envisioned for Raya as a newborn (or infant, or toddler, or self-proclaimed "big girl"), and the feeding tube has been the most visible of those things. (well, except for the plagiocephaly helmet. that thing was pretty darn visible. and smelly.)
July 2010

I remember distinctly some of the thoughts that went through my head the day that we went home from the hospital with the NG tube. It was Saturday, January 23rd, 2010. Raya had been in the hospital since January 18th and had gotten the NG placed on the 20th because she refused to drink the Pregestimil formula they had put her on. I didn't blame her one bit. The switch was necessary but that stuff was just plain foul, especially when compared with breast milk. I remember having to fight back tears as I sat in front of the computer in the hospital after googling how much Pregestimil would cost us if insurance decided not to cover it and just wanting to take her home and have things go back to normal.

By Saturday, Raya had conceded somewhat and was drinking the majority of her feeds by mouth and keeping a lot more of it down than when we had first come in. As much as I did not like that Raya was in need of an NG tube, I remember feeling a wave of panic come over me when one of the residents came in on Saturday and told me that since Raya was taking most of her formula by mouth, she was going to ask the GI if we could take the tube out before we went home. I think that moment of panic was the beginning of my process of accepting the feeding tube. 
Daddy & Raya, January 2010

For the first 2 months of her life, everything had been a struggle with her. I had struggled to get Raya to eat enough to grow. I had struggled to get her to keep down as much as she could of what she ate. I had struggled to control her wicked reflux. I had struggled to eliminate anything from my diet that could have possibly been responsible and quite honestly, had done everything I could come up with to try and help her, and most of it was unsuccessful. 
January 1st, 2010, about 7 or 8 weeks old
Low and behold, after 3 days on a feeding tube and specialized formula, she was almost a completely different child. Her reflux was not gone, her projectile vomiting was not gone, and she was unable to tolerate the breast milk I was trying so hard to provide her with, but she was a MUCH more comfortable baby. I knew that she needed the tube at that point and I was relieved when the GI said we would be going home with it. Not because I WANTED a feeding tube to be part of our lives, but because I knew it was the right thing for her at the time and I knew that as long as it was there, I could get whatever she needed into her. 
January 30th, 2010

I also remember thinking that we would probably use the tube for a couple weeks and then be done with it. She had improved so much in the 3-4 days that she'd been on the other formula that I really felt like the upward trend would continue once we went home and we'd be taking it out shortly after. Even so, there was a part of me that knew deep down that it would be more than a couple weeks. I never fathomed at that point in time that it would be 4 years later and she'd still be 85% dependent on it, but I had a feeling that it wasn't going to be a matter of weeks either. 

One of the feelings that I remember most clearly from that day was the shock of reality beginning to set in that this really was happening. Being trained on "dropping an NG" was one of my requirements before I could take her home. I sailed through it on the first attempt, thanks to nurses who were great teachers, but couldn't shake the thought that I couldn't believe I was doing this to my baby. Then the rep from the supply company came and dropped off the machine and supplies that would now take over my role as the provider of nutrition for my baby. If I had to sum up that day in one word, it would be OVERWHELMING. As we loaded up the wagon with all of the supplies we would be needing in order to continue feeding her with the NG tube once we were home, I couldn't believe that this was really happening. Really, an IV pole in my living room??
Getting ready to get outta' there!

I had tried really hard to pay close attention at the hospital when the nurses were explaining things to me, and I did have the little booklet they had given me from the hospital's parent information center that I had to read through & pass a little quiz on in order to take her home. I had also tried to pay close attention when the home health rep had dropped off the feeding pump. Regardless of how well I had listened, I was running on very little sleep and most of what I was hearing was new to me. The feeding pump was user-friendly enough but it did not come with an operator's manual. The quantity of formula she was getting through the tube was so small that using the pump to feed it to her felt pointless since half of it stayed in the tubing. A few days after we came home from the hospital, she got her little fingers caught on the tube and ripped it out. That was when our journey to find the ideal NG tube tape started since we found out that the only thing I had forgotten to bring home from the hospital was the tape they had been using there. Even the most minute details of life with the NG tube were a matter of trial and error. Things were hard.

As time went by, I figured out what worked for us and what didn't. I learned how to manage Raya's care better and with the help of a wonderful husband, learned to juggle taking care of Raya and our other 3 kids. We started to have more stretches of time where we didn't feel like our world revolved around Raya's medical life. We also started to feel more of a sense of normalcy surrounding Raya's medical life, and by that I mean that the medical supplies and equipment that had invaded our house no longer felt so foreign. It all just incorporated itself into our "normal" and I got to a place of acceptance. It didn't happen all at once. It is a process that happens little by little and sometimes starts back at the beginning and has to happen all over again. 

Acceptance is also NOT all-or-nothing. Some aspects of having a medically complex child are more difficult to accept than others. I think the first thing I had to learn to accept was that despite my very best exhaustive efforts, Raya just did not tolerate my breast milk, much less thrive and grow on it. With her being my 4th baby and having successfully breastfed the other 3, I did not expect for that to happen and was not prepared for the intense emotions that I experienced with the switch to the specialized formula that she needed. As we built her formula into our routine and I stopped agonizing over pumping breast milk that she couldn't have anyway, and as she began steadily gaining weight in spite of the chronic vomiting and reflux, I grew to love that formula. {but let's not confuse loving the formula with loving cleaning formula puke out of everything and prepping formula every single day since then...}

Accepting formula happened. Letting go of being able to give her breast milk happened. Feeling like the tube was just a part of her that had always been there eventually happened. Feeling like I actually knew what I was doing in caring for her eventually happened. Other things are still in process. Accepting the fact that she will have to depend on someone other than me or Donny at times to take care of her and someone else will take temporary charge of her health in a place other than our home has been hard. Sending her to school where I know they won't put her G tube in if it comes out was hard to accept {although the 9 hours a week of alone time has helped me come to terms with it} because even my 10 year old can handle that job and a simple tube pull-out could easily turn into emergency surgery. Knowing that the older she gets, the more time she'll spend in the care of others is hard to accept. Not having answers to the questions people ask me about how long she will need the tube and why she has the problems she has and knowing that there may not really ever be answers to all those questions is hard to accept. 

More so than not being able to answer other people's questions, it is hard to accept that we just don't know what the future holds for Raya. We know what is holding her back right now but there are no easy answers as to how to fix those problems. THAT is hard to accept. If there was one thing I absolutely did not comprehend at the beginning of our feeding tube journey, it was that the need for patience can span years. Quick solutions are a rarity in the medical world. The norm is "let's try this and wait and see if it helps," and that is VERY hard to accept.

Acceptance is not easy but it is absolutely important. Raya does not remember a time when she didn't have a feeding tube. That tube has ALWAYS been a part of her body. In fact, at preschool a couple weeks ago the teacher had the kids draw a picture of themselves. Her teacher told me when I came to pick her up that Raya had drawn an extra little circle on her stomach and said that it was her "tubie".  The feeding pump has been her constant companion since she was big enough to start wearing it in the itty bitty backpack at about 8 months old.
June 2010

July 2010
For me to be outwardly resentful towards Raya's feeding tube or anything that comes along with it would be sending her the message that I don't like part of her. I would never want her to feel rejected by me, especially because of something that is not even her fault. I think one of the greatest lessons I have learned in the past 4 years is that nobody should be defined by their limitations, or by what their perceived limitations are. It's easy enough to say that but it's entirely different to actually see it evolve before your eyes. I've been to literally hundreds of doctor and therapy appointments in the past 4 years. I've listened to medical professionals pick apart and analyze every little delay, defect, and dysfunction they could find. It's their job and it's a necessary part of the process. Raya hasn't seemed to pay much attention to them though. She just keeps on finding ways to do what she wants to do and be who she wants to be regardless of what obstacles are in front of her. What others see in tube feeding as a limitation or a reason to pity her, she sees as completely normal and not a big deal.
December 2013

Someday tube feeding will probably be a part of her past but not yet, and that's okay. Without the tube as a way to get full and adequate nutrition into her body, (if she had actually been able to survive without it) she would be extremely developmentally delayed, both cognitively and physically, due to the severe lack of nutrition. In essence, Raya quite literally would not be the little girl we know today without her feeding tube. It does not define her, but it sustains her life and supports her growth and development. With that perspective in mind, it is impossible for me to not love her feeding tube for all that it's done to keep her healthy and happy. I couldn't say that 4 years ago and mean it, but I truly can say it now. I ♥ A Tubie, both the girl and the tube itself!

Please join our family in celebrating Feeding Tube Awareness Week, February 9-15. This year's theme is "Nothing Can Hold Us Back" and more information about how to get involved can be found here:

Thursday, January 16, 2014

Not exciting but still noteworthy

Raya has not really ever slept through the night. If it ever happens, it's a rare thing. When she was younger, she woke up like clockwork every night between 10 and 11 to vomit. When she outgrew the vomiting, she still woke up every night sometime between 10 and midnight. I suppose this is one area where being a night owl pays off for me because I'm not usually asleep by then anyway so she's usually not waking me up when she wakes up because I'm already awake. Staying up a little later than I want to doesn't feel as bad as sleeping for an hour or two and then waking up with a crying kid. (that will be resuming soon enough)

She didn't sleep through the night last night either but she did sleep in her own bed all night long. She went to sleep in her bed at the usual time (as opposed to falling asleep on the couch) and even slept through me giving her meds at about 10:30 or 11. At that point I debated whether to A. go to bed and sleep for 45 minutes until the pump beeped, B. turn off the pump and short her the last ounce or two of formula, or C. stay up for another 45 minutes. I opted to go to bed and then it ended up not being the pump that woke me up, it was Raya. Oddly enough, I thought for sure it had to be 1 or 2 in the morning judging by how I felt (i.e. like I had been sleeping for a long time) but according to the clock, I had been asleep for no more than 30 minutes. :) Raya was standing next to her bed crying as opposed to dragging all of her belongings down the hall to the floor next to my side of the bed like she normally does. Probably because the pump was plugged into the wall and the backpack was hanging on the IV pole, and her tube was all tangled up in her blanket. I thought for sure she'd throw a fit and want to sleep on the floor in our room but I changed her diaper and told her it was time to lay back down and she just got back in bed and went to sleep. I think both of us got a MUCH better night's sleep last night because I felt a lot more rested this morning than I have lately and she was in a great mood this morning and full of energy.

She was full of all kinds of fun things to say all day today. I kept thinking to myself what a shame it was that I was the only one around to hear her talk. Her toys had some pretty awesome conversations with each other today. She helped me make a car seat cover for her baby sister (whom she refuses to refer to as "the baby sister" like everybody else and insists on calling her "my baby GIRRRRRR-LLL"). She probably really missed the big kids today too because since they weren't home, she had to pick up everything in the living room so I could vacuum. It would have been MUCH faster and easier if I had done it myself but where's the lesson in that, right? Eventually she got all the toys out of the way and I vacuumed and then we plopped on the couch for the rest of the afternoon so I could take a nap and she could watch as many episodes of Jake and the Neverland Pirates as she wanted while I slept. Thursdays are my favorite because we don't have to go anywhere or do anything, but sometimes after an entire day of listening to her talk nonstop and just being in the presence of her boundless energy, I am SO worn out and ready for bedtime! Today was a good day though. There were several moments today where I just sat and listened to her playing with toys and making them talk to each other and felt so blessed to have her, that she is doing so well developmentally compared to where she could be, and that she and I are finally getting to spend time alone together that does not involve anything medical.

Tuesday, January 14, 2014

Weight check & a pretty good day

Raya had her weight check today. Bright and early. At 8:00. What was I thinking. At her last GI visit on December 16th, she weighed 15.1 kg, which was only about a 3 ounce gain since the previous visit about 3 months earlier. One ounce per month is not a good rate of gain for a 4 year old. Just FYI. Today, she weighed 15.2 kg, (about 33 lbs 8 oz) which means she gained about another 3-4 ounces in the past month. That's still a little lower than her doctor probably wants, but it's a whole heck of a lot better than a net gain of 3 ounces in 3 months. Hopefully the trend will continue and the oral intake will increase to make up a few more calories.

I've been toying with the idea of not doing a tube feed first thing in the morning (or worse, doing it super early in the morning which would require me to get up super early in the morning and start it...MOOG, where is that darn delayed start feature I've been asking for??). The reason I've been thinking about that is because Raya actually IS hungry first thing in the morning. She wants to eat breakfast. Right now, she gets a pretty decent amount of calories for "breakfast" because her breakfast has been potato chips. She can get her minimum requirement of oral calories in for the day just from that as long as she eats "approximately 11 chips" like the bag says. One serving is 160 calories and in order to hit her minimum calorie goal, she has to eat 140 calories. When she goes to school, they have snack time, which is a great opportunity for her to benefit from the peer modeling. You should see the way some of those preschoolers wolf down their snack! The day I was there during snack time, the kids were eating some kind of sausage biscuit for snack and I couldn't believe how many of them actually ate the whole thing in about 15 minutes. It blew my mind. Anyway, as long as there's no cross contamination from her friends' snacks (which her teacher is super careful about, thankfully) it's a great opportunity for her to eat with people other than her own family, and to see other kids her age eat. (no really, it blows my mind to watch other kids her age eat food)

I usually start her first tube feed of 8 ounces when I drop her off at school, and it takes 2 hours to finish. Snack time is about halfway through that 2 hour feed, so she has about 4 ounces of formula in her stomach (give or take, depending on how fast her stomach is emptying at the time) when it's time to eat her snack. Some days she eats it and other days she is completely uninterested. I can imagine that if she was not being fed formula at the same time she's supposed to be eating a snack, she would probably eat more of her snack. The problem is that if we skip the breakfast feed and then she comes home at lunch time and is hungry from not having a formula feed at breakfast, she will actually eat a good sized lunch and then she's too full to have the lunch time formula feed. While this may sound like a good thing having her eat a small breakfast, a snack, and a decent sized lunch, the most calories we've EVER gotten into her orally by noon on any given day was about 400. Once she has eaten a good sized lunch, her delayed gastric emptying with solid foods means that we can't start feeding her formula for about 3 more hours or else it hurts her stomach. (not because of the formula, because her stomach is too full) We know based on tracking her weight gain & caloric intake that she NEEDS 1100-1200 calories daily in order to grow, so having her only get 1/3 of those calories by noon means that we are struggling big time to get all of her calories in within a 24 hour period, especially without doing a continuous night feed. I have many reasons for not wanting to do night feeds but the two biggest are that 1. night feeds would be another big step backwards, and 2. feeding her all night ALWAYS means that she's totally soaked in the morning and there are wet pajamas and bedding to wash. AAAAAND, that's assuming that she does actually eat a decent amount of calories for breakfast, snack and lunch, which is inconsistent at best right now.

So yeah, there's never a clear or easy answer, is there. Right now I know that a lot of her calories come from fats & oils, which I hate, but when the amount of food she eats is so extremely limited, we have to maximize her calories by giving her the most calorically dense food we can. Even if it means adding olive oil to her applesauce. {gag}

Moving on...

So speaking of food, I decided it was time to try a grain. At the grocery store a few weeks ago, I saw that they had a gluten-free flour blend in their bulk section that did not have rice flour in it. Shocker of all shockers. I'm telling you, that rice allergy really throws a wrench in working around the wheat allergy. Anyway, the only thing that was in the flour blend that she had not tried before was sorghum, so I decided that sorghum would be a good thing to try. {Because I'm pretty sick of cooking with coconut flour. and also because it's cheaper than some of the other specialty flours.} Today we took a field trip to a little kitchen store near by that sells a lot of specialty flours & baking ingredients so that we could buy some just plain sorghum flour. We also grabbed some potato flour while we were there because they had it, and because she's totally good with potatoes. No idea what we'll do with it yet but now we have some. She was pretty cute carrying the bag of sorghum flour around the store. I could tell that she was proud of herself for learning the word "sorghum" so quickly because she used it as much as possible the rest of the time we were there. "Sorghum doesn't have wheat in it. Wheat makes me sick but sorghum doesn't make me sick. Does sorghum have rice in it? Rice makes me sick too. But not sorghum." {hopefully she's right...} As we were walking around, she pointed at everything on the shelves and asked, "Does that have wheat in it? Wheat makes me sick. " Such a smart girl. :)

We decided on the way home that we should try making some pancakes with her new sorghum flour. She couldn't wait.

Unfortunately I was not prepared ahead of time for this little undertaking so she had to wait. She watched an episode of Jake and the Neverland Pirates while I searched Pinterest to find a recipe. I found one that used sorghum flour AND coconut flour and decided to try that one. I thought maybe it would be a good idea to blend it with something she's used to eating so that the taste would be somewhat familiar and so that I wouldn't be overdosing her with sorghum on her first try with it. I will summarize my sorghum-coconut pancake making endeavor with 3 short statements:

1. I hate cooking with alternative flours
2. Coconut flour is rather overpowering, even when you're using a fraction of it compared to the amount of all the other ingredients in the recipe
3. I hate cooking with alternative flours

No really, making pancakes without REAL flour is not fun. Perhaps if we could still use eggs, it wouldn't be so bad, but eggs have not been too kind to her either so we are not using them at the moment. As luck would have it, the recipe I used didn't even call for eggs so I didn't have to substitute anything for them. I followed the recipe to a T other than cutting it in half because it made a huge batch, right up until the part where it said, "Pour batter into hot skillet..." Um, my batter was not pourable. I had followed the recipe exactly, but ended up having to add a LOT of water in order to get it to a consistency that resembled pourable. (coconut flour can soak up a ridiculous amount of liquid) I tried cooking the batter at varying consistencies during the process of adding extra liquid, and it didn't matter what consistency the batter was at or how thin I spread the batter in the pan, those dang pancakes would NOT cook all the way through. They don't taste bad, although they taste heavy on the coconut, but that was without a doubt the UGLIEST batch of pancakes I've ever made. In no way whatsoever do they resemble the pretty picture on the website where I got the recipe. I've come to the conclusion that any pictures on the internet of pancakes that are supposedly gluten-free (and rice-free and egg-free) are NOT actually pictures of pancakes made with the recipes that are posted with them because in all my attempts to make decent non-wheat pancakes, not once have they looked that good. Ok, maybe the quinoa pancakes I made a while back did, but other than that, nope. Maybe I need to try a different brand of coconut flour or something. On the bright side, the fact that Raya has never had a regular pancake means that she has nothing but all of my other crappy attempts to compare them to so she loved them. I put them in bags in the freezer so I can pull a couple out at a time when she wants pancakes. Then I kind of laughed because I had been looking for ideas for freezer meals so I can put food in the freezer for when the baby is born and thought to myself, I probably just knocked out a month's worth of freezer meals for Raya with that batch of pancakes. Not funny but kind of funny. :)

I also managed to make a double batch of pizza rolls (roll dough with cheese & pepperoni inside) and put half of it in the freezer so I did get started on our freezer meals. We ate the other half for dinner and they were delicious!

Perhaps the most exciting news of the day was that the Feeding Tube Awareness facebook page hit 15,000 "likes" this evening. We are less than a month away from Feeding Tube Awareness Week, and at this time last year, we had about 8,000 likes, so it's pretty awesome to see how much it's grown in a year. There are some very exciting things coming up in the near future for FTA and I'm SO blessed & grateful to be a part of something so great!

Monday, January 13, 2014

Milestones of the fine motor variety

I've whined a lot lately about various things but I promise, that's not all I do. :) Raya is really turning into a big kid these days and she's hit some pretty exciting milestones in the past week.

She's been going to preschool for 1 year and 2 months now. This year, the kids start out every single morning by writing their name on a laminated card with a dry erase crayon. At the beginning of the year, the kids all started out with cards that had each of their names in large letters. The point was for the kids to come in and find their name and then trace the letters. Once they had mastered tracing the letters in their names, (as well as a 3-4 year old can master that) they moved on to a card that had their name in small letters with space below for them to write the letters on their own. When they had that down, they moved on to a blank card. For probably 2 months or more, there have only been a couple of kids that were still using the cards with their names in small letters. All the rest had moved on to blank cards. As of Friday, Raya and one other boy were the only ones not using blank cards yet. I usually don't hang around while Raya writes her name but Friday I had to syringe bolus a little bit of formula so she could have a backpack-free school day and be hungry in time for feeding therapy, so by the time I was done, she had finished writing her name. I was impressed!
Pretty good, huh? (pardon the squinty eyes, she was having a really sensitive eye day for some reason) She was very proud of herself and I was very proud of her. :) She has her own rather unique way of forming the letters. I hope that letting her do it her own way right now isn't counterproductive in the future when she needs to learn how to form them correctly but for now, girlfriend can write her own name and that's pretty awesome. As of today, she is now using a blank card to write her name. :)

The other exciting milestone happened at OT on Friday afternoon. I had to leave as soon as OT started to go to a GI appointment with a friend for moral support. I left Raya with her OT and Donny came to get her. While I was gone, Raya must have gotten frustrated with wanting her sweatshirt zipped and not being able to get it zipped herself. I've shown her before how to do it but sometimes it just takes a few reminders before it clicks, and whatever her OT said or did was what happened to make it click. When I got home, she showed me that she can now zip her jacket by herself {sort of}. I did have to help a teensy bit with getting the little bar thing all the way into the zipper pull but she got it almost all the way in by herself and zipped the zipper all the way to the top by herself.
Hooray for fine motor skills! :) Now if we can just master sleeping through the night...  I have a feeling that Raya and baby sister and I will be having some fun parties in the middle of the night in about 5 more weeks. :)

Monday, January 6, 2014

Food Woes

Food can be such a beast. Sometimes when I think of Raya and food, I picture the food a little bit like a Gremlin. It's hard to say on any given day whether we'll get one of the soft, furry, cute ones or the scary, dragon-looking, havoc-wreaking kind. Some days her food is like this:

Aaaaaand some days her food is like this:

(what can I say, I'm a visual person)

On some days, feeding therapy brings out the best eater in Raya and on others, she fights it as if we were trying to convnce her to eat toxic waste. It can be difficult to know how hard to push her on the harder days because we don't always really understand why she's fighting it. It's easy to forget that a child being able to talk does not equal a child being able to verbalize complex concepts and emotions. We can't ask Raya why she's suddenly refusing to eat something that she would normally not have a problem with and expect an answer like, "Well, the last time I ate that food, I saw a hair on my plate and it grossed me out and now that's all I can think about when I see that food on a plate." or "I know you dragged me to therapy and I'm required to sit here for the next 45 minutes but I'd really rather be playing right now so I'm just doing what I have to do to get through this session and then I'm outta here." or "When I ate that food yesterday, I started experiencing severe heartburn 3 hours later and felt bloated so I am concerned that the heartburn and bloating were because of eating that food and I'd rather not eat it again for a while." See what I mean? It's laughable to think of a 4 year old giving a logical response that actually explains why they're refusing something. We're LUCKY if we get a verbal response at all and if we do, it's usually something like, "Because it will make my tummy hurt." or "Because my tummy doesn't WANT food." Those responses seem explanatory enough but coming from a 4 year old, they could also mean that she just doesn't want to stop doing what she's doing long enough to eat or that she's mad that we're giving her applesauce when she'd rather have potato chips.

The last 2 feeding therapy sessions have been about as polar opposite as they could possibly get. The Friday after Christmas, I asked Raya what she wanted to eat for lunch at therapy. She asked for a baked potato so I made her one (thank goodness for microwaves) and off we went to therapy. The days & nights all run together so I don't remember exactly what happened the night before but I remember that she had a rough night and she and I slept on the couch. (which is getting much more difficult for this 34 week pregnant mama to do!) A bad night the night before a therapy appointment can mean a less than stellar therapy session but it can just as well have no effect on how the session will go.

She had been in a great mood that day, especially considering that lack of good sleep the night before. I didn't expect such an awful therapy session. She really was not her usual self. She was more like how she used to be when she wasn't getting OT and when we hadn't found a good way to consistently help her get good sleep at night. Her attention span was literally 2-3 seconds at a time. The chair stayed still but her bum did not. She wiggled more than I've seen her wiggle at feeding therapy in a very long time. She actually fell off of her chair twice because she was being so wiggly and she can unbuckle the seatbelt so we don't bother with it anymore because it's too distracting.

Then there was her interaction with food. She didn't really even want to look at it. She seemed fine at first, but it became clear pretty quickly that eating was not really on her priority list for that day. A lot of time was spent poking at the pieces of potato and trying to sneak turns on the iPad even though she hadn't taken a bite. There was also a lot of time spent holding food in her mouth. This picture pretty much sums up the whole session:
It took us 10 minutes to coax her into taking that bite and another 10 minutes for her to decide she was ready to swallow it. Getting her to take a sip of water was like pulling teeth. (incidentally, that's exactly what her teacher said about snack time at school today...) She bounced around like a little ping pong ball and barely ate any of the food she had asked me to bring. I was SO relieved when FT was over and it was time to move on to her OT appointment. It's hard to adequately express with words what one of these feeding therapy sessions is like on a bad day and I wish I was better at it. If I had to sum it up with one word, the word would be EXHAUSTING.

In stark contrast, the following week (this past Friday) was one of the best eating days she's had at feeding therapy in a long time. She had already eaten about 200 calories' worth of potato chips for breakfast (don't judge, it's something quick & easy that she likes and doesn't make her sick). I had not given her formula before therapy because I wanted her to eat more food at therapy, so she was there on a pretty empty stomach. By the end of the session, she had eaten:
  • a whole 4oz cup of strawberry flavored applesauce mixed with 1 tsp olive oil for added calories
  • a whole baked potato (a very small one, about 70 grams) with 2 tsp of her safe margarine
  • a Gerber Graduates fruit twist (to practice eating something that's hard to chew)
  • 1 ounce of water
The calories for the session totaled about 225 and she ate almost a cup of solid food in less than an hour. What was probably just as exciting was that she was HAPPY the whole session. She was excited to be there, excited to eat her lunch, excited to play games on the iPad, and just flat out happy. There was no falling out of the chair this time either and she sat as still as she ever does. The only thing she seemed to have trouble with was drinking water. I've noticed that she's kind of forgotten how to take a drink lately. Instead of tipping the cup and pouring the water into her mouth, she tips the cup part way and then kind of slurps the water into her mouth. More often than not, doing that results in her inhaling water. The more she does it, the more hesitant she becomes to drink water. (subconscious way of protecting her airway) It was very exciting to see her happily eat all of that food, as it always is when she has a good mealtime.

Holding that fork like a boss.

When she finished eating, I asked her how her stomach felt. With a smile on her face as she happily played her game on the iPad, she said, "It hurts."  To which I replied, "Well Raya, if you're eating food and your stomach starts to hurt, you need to stop eating!" I guess that subject hasn't really been addressed yet. After that, we had OT and due to the large volume of food she had eaten, we didn't dare do anything too lively with her.

On the drive home from therapy, her demeanor changed to a much more serious tone. I'm sure it was partly due to being tired and riding in a nice, warm car snuggled up to her blanket, but her stomach was bothering her too. We went home and dropped Kaida off and picked up Donny so we could go to his ortho appointment and see what the MRI said about his sore shoulder. Since she had finished eating just before noon, I decided to wait until 3 before plugging her in to the pump. We normally wait 2 hours after a formula feed ends so I figured I'd give her an extra hour for the solid food. I inadvertently ended up waiting longer than that and when I told her it was time to get plugged in to the pump, she told me her stomach wasn't ready for formula yet. I figured that since it had been over 5 hours since she finished lunch, she'd be empty and hungry and ready to go so I decided to check with a syringe and see how much was there. I stopped after I got about 45ml of food. I have no idea how much was still there but I could see potato and flecks of the fruit twist thing so it was definitely her lunch. Unfortunately at that point, we HAD to connect her to the pump because we still had to get 700ml of formula into her (about 24 ounces, or 3 feeds of 8 oz each). Since each feed takes 2 hours and we give her a 2 hour break in between, it was well into the wee hours of the next morning before she finished all of the formula she needed for the previous day.

I saw this on facebook today and it made me think of Raya :)

SO. I'm sharing this because I find myself going around in circles in my mind about it quite often these days. The lunch she ate on Friday at therapy is a pretty good lunch for a kid her age at 225 calories. If she ate 3 meals of 225 calories each in a day, that would be 675 calories. Throw in a couple of 100 calorie snacks and that's 875. If on top of that, she drank a couple glasses of milk (hypothetically, since she's allergic to milk) that would add about another 200 calories and put her right at 1075. Currently, her daily caloric intake goal/requirement is 1100-1200 if we want her to not lose weight, so if she ate those 3 meals & 2 snacks per day, she'd be pretty much on target with her caloric needs. However, given that it takes her 6 hours or more to move a 225 calorie meal out of her stomach (and pardon me for saying so, but) how in the HELLLLLLLLL is she supposed to do that?? How in the world will she EVER be able to eat 3 meals and 2 snacks a day PLUS drink all the water she needs if it takes 6 hours for just ONE of those meals to leave her stomach? THIS is why it's hard for me to fathom that she will be getting off of the feeding tube anytime in the near future, and that doesn't even take into account the fairly extreme dietary limitations she has because of her food allergies.

Lest anyone should think I'm being a pessimist, just because it's hard (or darn near impossible) for me to imagine Raya physically being able to eat enough food to not need the tube does NOT mean that I don't have HOPE that she will be able to or BELIEVE that she will be able to. This is where I see things going over the next couple of years. We will continue adding in new foods one at a time to expand the nutritional profile of what she is able to have and to find out what foods work well for her and what foods do not. As she is able to tolerate a wider variety of foods, we will start doing partial blenderized diet and see how her stomach tolerates that vs just eating the whole foods. With that, we can also see how she does with weight gain when some of her formula calories are replaced with blenderized whole foods since we have never really had that opportunity. I am not saying that formula is bad. If you look at the number of people of all ages who are able to live and thrive on formula when they cannot thrive off of food for one reason or another, you can't very well deny that formula IS a good thing. Raya would not be here if it wasn't for formula and she is clearly thriving on it. What I am saying is that I think that before we can expect Raya's body to be proficient at digesting whole foods, it will need "practice" and I think that blenderized diet is the way to do that in addition to whatever food she does eat orally. Eventually, I think that she will get to a point where she is cognitively more able to understand the way that she has to eat in order for her body to process her food, and better able to understand and respond to the sensations and signals she's getting from her body. At some point, the tube will only be used for minimal support when she's not feeling up to eating enough or to make up a few extra calories or some fluids at night, or to take her nasty tasting medications through. And eventually I do believe that she will be able to remove it, but it's going to be a matter of years still. I don't love that, but I have accepted it and embraced it and I'm okay with it, and I only hope that the people who are most important in Raya's life can do the same.

Someday, Raya and food will be friends.

Sunday, January 5, 2014

More catching up: Christmas Eve & Christmas

The Monday before Christmas, Donny took the 3 older kids to his parents' house to spend the night. It's about an hour away and having them go like that always gives me a bit of anxiety but they love going and it's nice to have a bit of peace & quiet. I still had a lot to do before Christmas since every single day the week before had been so packed with things to do, and some of it was stuff that I couldn't do with all the kids around. We wrapped the presents that Raya had picked out for all the kids and Raya insisted on writing her own name on them. It would have been fine but she was having a bit of an OCD moment and got really upset when it didn't look right to her.
I had planned on taking Raya to see some Christmas lights that evening but she was having a really off day and was really crabby. She said she wanted to watch a movie and THEN go look at Christmas lights but by then it was too late to do both so we just stayed home and she laid on the couch and watched about 10 minutes of Jake & the Neverland Pirates before falling asleep.
Some days, I just need moments like that in the evening to stare at her while she's sleeping and think about how cute & sweet she is. I love my children dearly but I sure do enjoy a peaceful, quiet evening. Aside from just needing a breather from all of the energy in this house, I was in charge of making the sugar cookies for the kids to decorate for Santa, and I don't like baking when Raya is around because of her food allergies. She wants to help and I don't want her touching any of the things she's allergic to. I also don't like having the kids help cook food that is going to be eaten by other people. I figure the less people that are involved in cooking food that other people will eat, the better. :)

Tuesday morning (Christmas Eve) I had some  more cooking to do. Donny's family always does Mexican food for Christmas Eve dinner so I made machaca beef and fresh salsa. We also made some cookies that Raya was able to eat so that she could decorate cookies for Santa too. She was SO happy while we made the cookies! I was a bit nervous because I had never used that recipe before and it did NOT seem like they were going to work, but we got about 6 cookies out of it. 6 of the most thirst-inducing cookies I've ever had. Coconut flour has the most amazing ability to suck every drop of moisture out of your mouth.
The dough was HORRIBLE to work with but it did the job. When we had everything ready, we packed up and headed out to Grandma & Grandpa's house. It's tradition to saddle up the horses on Christmas Eve and let whoever wants to ride go for a ride. It's always very popular with the kiddos. :)

Trying on Grandpa's hat

So excited to be going for a ride!

Filling her stomach while riding a horse. Talented girl. :)

Raya & Kaida

I missed getting a picture of Ashtyn because she was done by the time I got outside with my camera. By the time Cole got on, the sun had gone behind the mountains a few miles away and the temperature dropped about 10 degrees all of a sudden so the kids were done shortly after that. We called it quits and everybody came in for dinner.

The food was heavenly. When we first got married, I was NOT used to eating Mexican food and was certainly not used to eating it for holidays like Thanksgiving and Christmas but I sure do love it now! I brought a potato for Raya to eat for dinner and she was really happy to be at the table with all the big kids with her plate of baked potato and a few grapes.

When everybody was done eating, the kids got busy decorating cookies for Santa. I had brought along Raya's Earth Balance "butter" to make frosting for her and thankfully, mashing it up in a bowl with powdered sugar and vanilla and a few drops of water worked perfectly. She was beside herself with her special cookies & frosting that she got to decorate by herself. It made the effort of making them totally worth it. :)

(once again, choosing to ignore the randomness of her left cheek turning red for no reason...)

And of course then she had to stuff her face with one. We're still working on taking appropriately-sized bites and finishing one bite before taking another. :)
I don't think she's eaten a cookie since last Christmas and I was impressed with how patient she was, having waited for several hours to finally taste her special cookies. She's getting so grown up! She almost ate the second cookie too but I reminded her that Santa would want to taste one of her special cookies so she let me put it on the Santa plate. :)

I'm throwing this next picture in just because I think it's cute. I don't remember what she was talking about but she was schooling Grandpa on something.

After the cookies were decorated and the sprinkles were cleaned up, the kids' Aunt Holly & Uncle Adam got them all dressed up and ready for the annual tradition of acting out the Nativity. Raya got to be an angel this year. Kaida was a shepherd, Ashtyn was an angel, and Cole was a wise man. Things usually get a bit irreverent but the kids always look forward to this part of Christmas Eve.

After the Nativity, the kids all got jammies on while the grown-ups played a white elephant gift exchange game. By then, Raya was getting really tired and felt like snuggling.
snuggles with Aunt Holly
 Since I hadn't been in any pictures yet that day and I had actually taken the time to shower and look somewhat presentable that day, I had Donny take a picture of Raya and me. In the first one, she was staring at the camera but looked pouty. Donny tried to get her to smile for another picture and this is what we got:
I couldn't help but crack up when I saw it. It's my new favorite picture of the two of us. Poor kid was SO worn out! We tried to get a picture of all 4 of our kids in front of the Christmas tree but Raya wouldn't stand up for a picture so she just got in the family pic with Grandma & Grandpa instead.

By the time everybody had gotten pictures in front of the tree, Raya was so tired that she didn't even flinch when Grandpa was getting her. Usually that induces screaming and running, so we knew she was tired. She didn't even look at him or try to push his hands away. 

By the time we got home, everybody was either asleep or too tired to bother with putting the stockings out and setting cookies out for Santa so they all just went straight to bed. I felt really bad for Ashtyn because her allergies got really bad at Grandma & Grandpa's and after being there for 2 days, she couldn't breathe and was starting to cough.

Being a parent on Christmas is awesome. You think that being a kid on Christmas is great but being a parent of kids who are the perfect, magical age at Christmastime knocks that out of the park. I love Christmas. I love everything about it (except for how busy we allow ourselves to get and the commercialism that tries to rob Christmas of its true meaning but that's another topic). Christmas decorations make me happy, especially the lights of a decorated Christmas tree at night when all the other lights are off. This year our tree wasn't barricaded into a corner so I was able to take a nice picture of it. :)

Christmas was a great day. We are so blessed to have kids that are so easy to please and grateful for whatever they receive, and excited about what they give to other people. It really doesn't take much to make any of them happy. We are the mean parents that put a sheet up over the doorway and tell them they'd better not peek or else, and make them wait until almost 8:00 when we're ready to get out of bed to go see what Santa brought them. :) We are also the nerdy parents that make the kids cover their eyes while we take the sheet down and get into position with the camera & video camera. (some kids are more compliant than others...)

Santa brought Raya a new backpack that will be great for putting her feeding pump in once I add a hook for the formula bag and a strap to hold the pump still.

Not the greatest picture of us but it proves we were there :)

When everybody had gotten a chance to see what Santa put in their stockings, everybody ate breakfast. The big kids ate the cereal Santa left them and Raya ate what Santa put in her stocking too...

Jake and the Neverland Pirates fruit snacks!

After breakfast we opened presents. We kept things really simple this year. Each of the kids got a few things that they needed and a couple that they really wanted, and everybody was happy with everything. I got a new car seat for the baby so we've checked that off the list of important things to do before she comes. :)

When the presents were opened and the wrapping paper was taken care of, everybody played with their new things. We all got to take turns playing the Jake and the Neverland Pirates game Raya got because that's all she wanted to do all afternoon. She's a HUGE fan of all things Jake & the Neverland Pirates and was very excited about the game. (she was really disappointed a couple weeks ago at the store when she found out that they don't make Jake & the Neverland Pirates underwear for girls...)
(again, not a flattering picture of me but at least we're documenting that I sometimes play games with the kids)

When things had kind of died down in the afternoon, we all snuggled up and watched Home Alone 2 since the kids had never seen it. They thought it was hilarious, of course. :)

Since we always spend Christmas at our own house with just our little family, we have a good time picking what to eat for Christmas dinner. The past few years we've let each of the kids pick an appetizer or two that they like and we've had a mish-mosh of appetizers for Christmas dinner. It's always fun and it's a lot less work than preparing a big fancy dinner. It also guarantees that there's going to be something that everybody likes. This year we changed things up a bit and had Chinese food. It was simple and delicious and everybody loved it!

After Raya had gone to sleep in the evening, we let the big kids stay up late and play games. My brother and his wife gave us the game Qwirkle, and it turned out to be a great one for all of us. Kaida needed a little bit of help but other than that, everybody was able to figure it out and we had a good time playing.

We spent the day on Thursday cleaning up everybody's Christmas presents and cleaning & organizing bedrooms. Raya hasn't gotten the hang of organizing all the stuffed animals & toys she drags into her bed but she really likes it when somebody else gets her bed nice & clean for her.

We played games again Thursday night but Raya got to play too. It was a much more lively experience with her around. :)
There was more snuggling and movie watching and we all just had a nice time relaxing together with nowhere to go.

Friday was spent putting away Christmas decorations while Donny went to work. I've decided that as much as I love Christmas decorations and wouldn't have minded doing a little more decorating than we did, I really liked having it limited to what I could put up and take down in one day. It was great to have everything clean and neat again. Once the kids go back to school, I will be continuing the cleaning & organizing by going through all the toy baskets and their bedrooms while they're not home to protest. I'm usually a lot more sentimental about keeping the Christmas decorations up until New Year's Day but this year I was just ready to pack everything away and move on. We had a great Christmas!
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