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Friday, May 31, 2013

Corn.

I have to start by saying that I had no idea how controversial our decision to use corn as Raya's first solid food would be. I have been a little surprised (but also not really all that surprised) by some of the responses I've gotten, even just to my facebook updates about Raya trying corn products. I'm doing my best to be respectful of the very strong negative feelings other people have towards corn that is produced traditionally and may be a genetically modified variety, but I would hope that respect for my own position would be reciprocated. This is certainly not targeted at anyone in particular and several of the comments have been very kind and thoughtful, which I appreciate. Having decisions questioned by other people is pretty common for parents of children with medical issues (well, and just parents in general) and this is just another one of those areas where people feel like their way is the best way and if I choose something outside of their viewpoint, I must be wrong. Just know that I am an educated person who does not make uneducated or rash decisions regarding the health of my family. I have done my research.

We chose corn for several reasons. I don't make a habit of justifying my actions with regard to decisions about Raya's health to other people because nobody else is as informed about all aspects of Raya's health as myself and her medical team. That sounds a little snobby when it's put that way but the reality is that I have spent more time with Raya than any other person has, and I can't even quantify how much of that time has been spent studying the way her body works and trying to unravel her mysteries. There have been very few times when I have explained the reasons why we have made certain decisions on my blog, and I had no idea this was going to end up being one of those decisions that I felt the need to explain. However, I want people to understand that things have to be looked at from a different perspective when a child is dealing with multiple digestive issues as opposed to a parent selecting dietary choices for a child with no digestive or allergy issues. Here are some of the reasons we chose corn:

1. There are several corn-based food products that Raya actually really likes to eat. Since one of our main objectives is to give her back some enjoyment and positivity surrounding food, we needed to start with something that she likes. Now we're just praying that her body will be okay with it so that we don't have to break her heart by taking it away again.

2. Raya is not allergic to corn. Period.

3. Corn is a very versatile food. With Raya being allergic to wheat, rice, and oats, our grain resources are rather limited. There are a lot of common foods that are very difficult to replicate without using any of those grains or the other foods she's allergic to. There aren't very many gluten free products that don't also have some form of rice in them, and we are excluding all gluten-containing grains because of the fact that we don't know whether or not she has a problem with gluten or just the wheat allergy. Corn gives us so much flexibility because it can be made into so many different things. I can even get pasta that's made out of just corn. Most of the gluten-free pasta has rice in it, and rice makes her sick. Corn doesn't, and corn pasta has a flavor and texture that she is okay with eating. Since we are introducing one food at a time like you would do with a baby that's just starting on solid foods, using corn gives Raya a lot of variety for being a single ingredient food.

4. We belong to a family that eats a lot of Mexican food. Letting Raya have corn means that when we go to family gatherings where there is Mexican food (i.e. tortilla chips), there will be ONE thing that she can eat. That means that instead of being excluded from what everyone else is eating, she can get a plate and sit at the table and eat chips just like everybody else. Maybe that's something you'd only fully understand if you had ever had to take your crying toddler to another room during a big family dinner to try and distract her from how sad she is about not getting to participate with everybody else.

5. Because corn is so versatile, having her be able to eat corn and corn products gives us a huge amount that we can work with on her progress towards oral eating. There are a lot of different textures that she can work with. It also means that there is a wide variety of ways that I can incorporate corn into meals I make for the family so that she can be included in family mealtime.

6. Corn and various corn products are very accessible. Whether you're looking for organic or not, there are corn versions of popular foods available at a lot of regular grocery stores. I can get corn pasta, corn flour, cornmeal, corn tortillas, corn cereal, corn on the cob, corn off the cob, freeze dried corn, corn oil, and polenta at the grocery store I shop at every week without having to make trips to expensive specialty grocery stores. Other versatile foods that we considered starting with (like coconut and quinoa) are not as easily accessible as corn products.

7. Not only are corn products more accessible than things like coconut and quinoa products, but they are also less expensive. A lot of the food that we buy for Raya ends up getting wasted. That's just the way it is with a child who has feeding difficulties. Starting with corn means that less money will be going in the trash, especially since the other kids will eat the corn-based food but not some of the more off-the-wall substitutions for traditional foods. Like the time I bought 3 flavors of soy yogurt because she's allergic to dairy but had been eating a lot of plain Greek yogurt, and NOBODY would touch them because they were flat out disgusting. I stand by my previous statement that legumes should not be made into yogurt. :) They went in the trash at $1.49 a piece for  6 ounce containers of yogurt.

8. Because I'm the mom and I said so.

I'm sure that there are other reasons that I'm forgetting right now, but those are a few of them. My point here is not to be argumentative about corn or to offend anyone that doesn't agree with my viewpoint. I realize that there are many sides to the debate about GMO vs non-GMO, organic vs. non-organic, and just corn in general and the people on all sides of those arguments will never be in agreement, so I'm not trying to change anyone's mind. All I want people to realize is that you cannot judge another person's decision for their own family's medical care based on information that you do not know. I would venture to guess that the people who felt the need to tell me that I should not be feeding corn to my daughter did not consider most of the reasons I gave for why we chose corn as her first food. I felt very much the same way about this that I felt when we were trying to make the decision about whether to keep suffering through life with an NG tube or put her through surgery to get a G tube. Lots of people had opinions about what was going to be better or worse for her. The people who questioned or disagreed with our decision to get the G tube had no experience with feeding tubes and could not possibly have fully understood why the decision we made was the right one because their view of the situation was very narrow.

This has gotten a lot longer than I intended. To those who asked why we chose corn out of genuine curiosity or interest, now you have the reasons. To those of you who are now questioning my intelligence for choosing to feed her something that you feel is in some way harmful, I hope that you will realize that there are factors in play that surpass what you may believe to be health risks in consuming the small amounts of corn that she's consuming.


And guess what. She threw up last night. Not because the corn in the chips & cereal she ate was GMO/non-GMO/organic/not organic, but because 6 hours after she ate the small amount of food that she ate for dinner, the muscles in her stomach had not successfully voided her stomach of the solid food she ate. I made some really delicious crispy chicken tacos for dinner, and Raya was SO excited to share the corn tortillas that we had bought for her with everybody else. For the first time in months, she got to sit at the table and have some of what everybody else was having and it was a really big deal to her. That alone made me glad that we went with corn. She was so, so happy yesterday. At dinner time, she ate 4-5 tortilla chips, about 1/8 cup of Gorilla Munch cereal, and 2 or 3 bites of a plain corn tortilla. About 90 minutes after dinner, I started her pump for a tube feed. When I checked for residuals 4 1/2 hours after starting the pump feed, there was at least 2 ounces of food left. It smelled like formula but it was clearly not just formula. As I was getting her last feed of the night ready, she woke up dry heaving and then threw up. The gross part was that nothing actually came out of her mouth, she swallowed it. Yuck. So after eating a little bit of food and then getting 8 ounces of formula, the formula moved out of her stomach but there was a high percentage of the solids still left in her stomach. We anticipated that it would probably happen this way but it's still really disappointing.
We will keep going with corn for a few days and cross our fingers (and pray) that her body will adjust and start moving solids through better, but this really is another step in making bigger decisions regarding options to treat her GI issues. That's what I have to keep reminding myself in order to not be sad about her throwing up last night. It's part of the process and how her body responds will give us more information to proceed with in our decision making process. We will probably add a food with a high water content next week. Raya really wants to eat grapes so if I can find some, that's what the next food will be.

Thursday, May 30, 2013

Happiest girl in the universe!


Raya is pretty much the happiest girl in the universe right now. At her GI appointment 2 weeks ago, we made changes to her medications and her doctor said that after the med changes were done, we could start a single ingredient food and see how she does with it. For several reasons, corn is the most logical choice for her so that's where we're starting. {if you are anti-corn, anti-Monsanto, anti-GMO, etc., please refrain from commenting} Today, the last of the changes have been made so it's time to start letting her eat. The big kids went to a movie with friends this morning (because Donny's car is still in the shop so he's driving mine this week) and Raya and I decided to go for a walk. I realized last night that we don't actually have anything in the house that Raya can have so we walked to the nearest store and got her some tortilla chips, corn tortillas, and corn cereal. It was about 2 miles round trip, so that took care of my exercise goal for the day. It's only about 85 degrees outside so it wasn't miserably hot while we walked. Raya loves riding in the stroller. She hasn't had a ton of energy lately and I'm not sure what that's all about but she was happy as could be to go for a long ride in the stroller. 

When we got to the store, I told her that we were looking for corn chips and corn cereal because Dr. S said she could try them to see if it makes her tummy hurt or not. We found some things that didn't have any other ingredients, paid for them, and went outside to walk home. She was so beyond excited that I didn't want to make her wait until we got home. I opened the bag of chips and let her have one. If you want to know what pure joy looks like, this is it:

She has never been more excited to eat something than she was when I handed her the chip. She ate 3 during the walk home in between sips of Splash. When we got home, I let her have a couple more. The term "food trial" usually applies to people with eosinophilic disorders or other similar conditions trying a single ingredient food to see if it causes any reactions. For us it's a little bit different because there won't be any endoscopy at the end of a 6 week period since no eosinophils have ever been found in her GI tract. Our objectives are to watch for any delayed allergic reactions and primarily to see how her stomach does with solid food, since delayed gastric emptying was one of the main reasons we stopped letting her eat food 4 months ago. I'll be checking her stomach for residuals every few hours after she eats solid food to see whether or not it's moving through like it should. I'm already kicking myself for not buying the blue corn tortilla chips because that would have made it easier to tell the difference between the chips and the formula. :)
 The problem now is going to be limiting her intake so she doesn't gorge herself on chips and dry cereal. She's pretty excited about her cereal too:

I was going to get Kix but the store only had this gorilla stuff so that's what we got. It's a big hit so far. I gave her half a serving of the chips and half a serving of the cereal, and I forgot how slowly she eats. The fact that it takes her about 8 bites to eat one Smartie should have been a clue, I suppose.

I'd be lying if I said that I expect things to go smoothly and for corn to be a total pass, but for today, I'm choosing to just focus on how happy she is to be eating actual food again.

Sunday, May 26, 2013

Raya's first day of Primary

Today was kind of a big day for Raya. For the first time ever, she was able to go to Primary at church. Kids normally start Primary the January after they turn 3. For several reasons, we have not been taking Raya to church since she was about 21 months old. We were fortunate enough to have a wonderful respite provider that was able to stay with her while we went to church. I have no doubt that keeping her home prevented her from catching a lot of colds & other yuckies and I'm grateful that we were able to do that. Now that cold & flu season is over and her previous respite provider left, we decided it was the perfect time to start bringing her to church. The last couple weeks we've taken her to the adult classes with us but she now has a new respite provider who was able to start today, so we were able to send her to Primary. (*happy dance*)

Things didn't start out too well. (hence the no pictures) As soon as she saw her new respite provider and we sat down at church, she started acting strange and buried her face in my lap. She wanted nothing to do with a new person. The 3 of us ended up going out in the foyer so that I could get Raya's feeding pump going and we could talk a little since today was her provider's first day working with her. When it was time, we went down the hall to the Primary room and introduced Raya and her respite provider to the teacher & the people in charge. Raya was clinging to me and crying but I had to leave to teach another class so I peeled her off and handed her over. She cried for a few minutes but got over it and ended up having a great time. I know she'll love it, and I'm SO glad we were able to find a provider that can come with us to church to keep her calm and keep the pump from disrupting the whole class when it beeps. Which, by the way, it did do during the last part of church. We're having a bad Infinity day today.

When we came home this afternoon, I got out my Tubie Friends supplies so we could make a few. Some will be mailed to kids in different parts of the US and one in New Zealand, and some will be delivered to our GI office when we go in for Raya's weight check this week. The kids LOVE helping me with them. It's more work to do it that way but it's good for them to help and they get really excited because they know that the teddy bears will make other kids happy.
Raya was in charge of picking out G tubes to put into the animals. She was cracking me up because she kept trying to close all of them and it was driving her crazy that every G tube in the bag was open and wouldn't stay closed. (you have to get the cap wet if you want it to stay closed, by the way) She finally gave up and started playing with the little bits of stuffing that were all over the place instead.

Occasionally I make a plug for Tubie Friends so this is it. A Tubie Friend is a stuffed animal that can be customized to closely match the child's medical condition. They can have G tubes, J tubes, GJ tubes, NG tubes, ports, trachs, and other medical devices. If you or someone you know has a child who could benefit from a Tubie Friend, visit the website at www.tubiefriends.com and click "Need Tubie Friends?" at the bottom of the page. That link will take you to the online form that you'll need to fill out in order to get one. They are provided free of charge to the child. If you have it in your heart to help children receive these animals, visit the website and click "Support Tubie Friends" at the bottom of the page. Donations are used to provide animals for children who request them online. If you would rather have your donation provide animals to your local children's hospital, contact me through the email listed on the blog or contact tubiefriends{at}gmail{dot}com to find out how to donate in your local area.

Saturday, May 25, 2013

The last week of school

The last week of school has come and gone. It kind of ripped through here like a wildfire. Here's how it all went down.

Monday:
Kaida and I took the big kids & Raya to school and then we had a little breakfast date since it was our last free day before the end of the year. (*sniff sniff*) Kaida will be heading off to kindergarten in the fall and we won't get to have our 2 1/2 hours of peace & quiet together while the other kids are all at school. It has been fun to have some time alone with Kaida. She loves to be by herself. (in a good way) She is very independent and loves to be left to herself with her imagination. She can entertain herself for hours with just a few little toys that she acts out all kinds of scenes with. She also loves to watch movies & shows on Netflix. Her current favorite is Horseland but she also went through a stint where she watched "I'm Alive" every day after we took the kids to school. Then she had nightmares while she was taking a nap one day and we cut her off from that. :)

Anyway, I wanted to do something special with her before the kids were all out of school so she and I went to breakfast at our favorite breakfast spot. We got a waffle with sausage and split it, and ate outside in the beautiful weather.

That afternoon, Raya did dishes for approximately 4 hours. I don't know how she can stand to kneel on a chair for that long, but she is SO happy when she's playing in the sink! We haven't had a respite provider for 3 weeks now, so I needed something to keep her entertained while I did some work and attempted to study.

Getting Raya to sleep in her bed has been a total joke ever since we took the side off the crib and converted it to a toddler bed, and even more so since she was sick in March and couldn't sleep laying flat. In the interest of letting everybody else get sleep, we haven't been forcing the issue and figured we'll push it more during the summer. Monday night though, I sent her to bed in her room and when I came home from the grocery store, she was asleep on the floor with the lower half of her body in the hallway and the bedroom light on. Funny girl!


Tuesday:
Oh, Tuesday. It was a long and exhausting day. We dropped the kids off at school that morning and I decided I'd be nice and let Raya go without her feeding pump. The preschoolers were doing their water day so I didn't want her to be left out of anything because she had her backpack on. She had drank about half of her box of Splash that morning and I had given her a syringe of formula before we left for school (which she fortunately did not vomit back up). Kaida and I came home so I could shower and get ready to be back at the school by 9:00 for the big kids' awards assemblies. We went back a few minutes early so we could go say hello to Raya while she played with her friends.
When we got outside to where they were, she was SOOO happy because she was sitting on a tricycle eating a snow cone without any flavoring. Crushed ice is her favorite thing to eat!

This little girl is one of Raya's good friends from her class. She's 5 and will be going to kindergarten next year and Raya absolutely loves her. I think it's because she's the same age as Kaida and Raya is used to playing with Kaida, so she plays really well with kids that age.

After we stopped to see Raya, we headed to the gym-a-café-torium for the awards assemblies. Somehow, I managed to miss getting a picture of Cole when he got his certificate for meeting his reading goal, but he got it and I was very proud of him. It was a close call for him. He loves to read but he gets so excited to see what happens next that he sometimes goes too fast and doesn't remember what he's read. That doesn't bode well when they have to take quizzes on all the books they read, so he's had to work really hard to get that certificate.

Ashtyn also got her reading certificate AND made the Principal's List for getting straight A's. We're so proud of her too! She is such a good girl and works hard at school. She is very creative and had a really good time doing the circuitry project they just did a few weeks ago. They had to make a house and build a circuit to light up their house. She decided she wanted to make the farm that I grew up on, so that's what she did. No project would be complete from our house unless it included some kind of medical supply, so of course she made the house out of a Neocate box. :)

Here she is with her teacher:
She absolutely adores her teacher and we are so grateful that she's had such a good, positive year this year. There are some big changes coming to the school's curriculum next year and I know she'll be ready for them thanks to her awesome teacher!

After the awards assembly, we came back to Ashtyn's classroom because the teacher was giving out the Principal's List awards in the classroom and they were having a party. Kaida and I had left the assembly a few minutes early to go pick Raya up from her classroom and then we took her over to Ashtyn's class. Unfortunately, by then Raya was not feeling great. I had given her a little more formula in her tube with a syringe while we were in her classroom (which her little friend from the picture above thought was pretty neat) but the heat had worn her out and she was crabby. She was hot and tired and wanted to go home, but we couldn't go home yet. In Ashtyn's classroom, she ended up laying down on the floor and got mad when I tried to pick her up so she didn't get stepped on. I let her have Smarties on Ashtyn's desk while the girls ate copius amounts of junk food. Eventually, I had to pick her up and carry her kicking & screaming out of the room. It wasn't pretty. Of course I didn't have the stroller with me either since she had been in class when we got to the school, so I had to carry her pretty far because even when she calmed down, she was too tired to walk and the bright sunlight bothers her.

We got home and she wanted to do dishes again. I didn't want her to so I said no, and she had fits the rest of the afternoon because she wanted to do dishes. She'd be fine for a while and then remember that she wanted to do dishes and I kept telling her no, so she'd get mad again. As soon as the big kids got off the bus, I needed to leave to take Cole to his allergist appointment. I let Ashtyn and Kaida stay home so Ashtyn could practice her babysitting skills, and we took Raya with us. She didn't want to go, so she screamed and cried the whole way there. She didn't want to get out of the car, so she screamed and cried all the way into the doctor's office. It was extra special because it happened to be during the time that people come in to get allergy shots, so the waiting room was really full and every head turned in unison to stare at us as we came through the door. I won't bore with details but it was a pretty big meltdown. A lot of people kept trying not to stare and I have to say, I was pretty proud of myself. I totally kept my cool and very, very patiently rode it out. I blocked her from going outside when she tried to, I kept my voice calm and quiet when I told her she needed to pick her blanket up off the floor, I ignored the outbursts, and didn't back down on anything. There was a sweet older lady there that started talking to me and told me not to feel bad about how Raya was behaving. I really didn't feel bad, but I appreciated her kind gesture of being understanding towards us rather than being judgmental. Eventually, Raya curled up in a chair right by the door and noticed that her feet were dirty. I explained that her feet were dirty because she had not let me put her shoes on before we left the house, and I put her shoes on her. She wanted me to hold her, so I picked her up and walked back over to where Cole was quietly sitting in a chair behaving perfectly. (see, I'm not a bad mom!) She saw that there was a bucket of crayons (which I had pointed out to her earlier but she wasn't interested) and some coloring pages, and decided she wanted to color.
She insisted that her hospital bear had to sit on the table while she colored. :) She picked out an Angry Birds page and chattered happily while she colored it. I was so glad that the people who were in the room when we came in were still there because they got to see her the way she normally is.

Finally, they called us back for Cole's appointment. The girl that was taking his vitals and doing his pulmonary function test kept going on and on about Raya's feeding tube. I get the impression that she hasn't been around too many. She kept telling me how sorry she was that Raya needs a feeding tube, and when she asked me what Raya eats and I told her she's only able to have formula right now, she commented on how sad that was. I always try to put a positive spin on it because I really do feel like it's mostly positive, but bless her heart, she made it hard with the way she kept carrying on about how sad it was. Really, it's okay. I promise. ♥

While we waited for Cole's appointment, he read us the ABCs of Asthma.
His appointment went well. He has pretty much outgrown his asthma, which is awesome. The problem he has is that he really can't breathe through his nose. He's supposed to be taking nasal spray for it but I'm admittedly horrible at remembering, and it doesn't seem to make a whole lot of difference when he does take it. His allergist thought maybe he needed to have his adenoids checked to see if they're blocking his nasal passages, so he ordered an x-ray. Unfortunately, Raya decided to have another meltdown on the way out of the office too so we couldn't go get the x-ray right then & had to wait until Wednesday.

Wednesday:

Wednesday was a fun day. Raya's preschool program was that morning so Kaida and I got there just in time to snag some front row seats. We ended up having to keep our feet up the whole time because there were ants and we had flip flops on. :) Raya was also in the front row. When the kids were all lined up, the teachers guided them in singing some songs they'd been practicing. It only took her about 2 minutes to go from this:

To this:

She didn't sing one word but she was pretty darn cute up there. :) Her hands were dancing on the ground while everybody else was singing.

She did do a few of the actions from the song about dinosaurs though. Funny enough, it was the part about the dinosaur eating. :)

By the time they got done, she was sitting on the sidewalk. She was tired. When the singing was over, she finally noticed that Kaida and I were there. :)

Here she is with her sweet teacher:
This year has been a learning experience for me with it being my first exposure to the special education world. There have been some bumps in the road, but Raya's teacher and the other teachers & aides really do love these little kids and I'm grateful that she's been able to be a part of their program.

After the program, we headed into the classroom for treats. Raya was too tired to walk. I picked her up and stuck my hand in between her back and her backpack and realized that even though the ice pack was keeping her back cool, she was still really sweaty. Not sure what we're going to do when the weather heats up more other than stay inside with the air conditioning. :/ Inside her classroom, we got to watch a slide show of pictures from the school year and Raya showed us where she had written her name on the poster on the wall:
 (it's the blue squiggle)

 Kaida loved being in Raya's classroom. She got to sit at the table with Raya and her friends and have cupcake. Raya sat at the table too and ate a Dum-Dum.

She has LOVED preschool so much and loves all her little friends! It's so fun to hear her talk about her friends from school.
She will miss the ones that are moving on to kindergarten next year!

After we came home from preschool, I decided to let Raya wash dishes. I needed to get some homework done. :) Raya happily did dishes again for a couple hours. Then her extension tube got caught on the chair she was kneeling on and pulled her G tube out. Oops.

It was time to change it anyway so we just stuck a new one in. Thankfully, this time it went MUCH better than it had on Tuesday. Oh yeah, I forgot. Tuesday during a huge meltdown, her G tube got pulled out and putting it back in was a beast. I hate having to put it in when she's fighting me. Thankfully it went great on Wednesday.

After the big kids got home Wednesday, I took Cole to get his neck/face/head x-ray done to see if his adenoids are enlarged. Sometimes I forget how tough Raya is until I have to take one of the other kids to do something. Thank heavens it was just an x-ray because if anybody had come towards him with a needle, I think he would have flipped. When he realized they really were just taking a "picture" of his head, he was fine.

Later in the evening, I let the girls put lotion on my feet. Honest to goodness, they used at least half a bottle. My legs and feet have never been so soft.

Thursday:

Thursday was the last day of school, so of course the big kids dilly dallied and missed the bus. Monkeys. It turned out to be okay because I remembered that I had to go in the health office and pick up Cole's epipen anyway. After school, they were both in foul moods. Ashtyn came home bawling like she always does on the last day of school. Bless her heart, she gets sad when the school year ends. Cole was upset because Ashtyn came home with some cool toys that she got from school and he was jealous. And hot, tired, hungry, and cranky. I took them to a frozen yogurt place to perk them all up.

I brought Raya's pudding and let her get some sprinkles from the toppings bar to put in her pudding. She was pretty excited and now she won't eat the pudding unless it has sprinkles in it. Oops.

After we got back, we had my friend's 2 daughters over to play for a while. The older one is a few months older than Kaida and has a G tube. It never gets old listening to little kids talk to each other about their tubes. Raya and her new "tubie buddy" showed each other their tubes and had a funny little conversation about them. I absolutely LOVE that she has friends close by that have tubes like her. The kids played in the back yard with syringes and a bucket of water and soaked each other.

Later that night, Raya fell asleep standing up next to my desk.

Friday:

We slept in. Donny didn't have to be at work until late in the afternoon and nobody had to be at school, so we had a nice, lazy morning. I took Raya to OT and feeding therapy, and then came home and tried to study. The kids ate pancakes for dinner and watched a few episodes of Phineas and Ferb and then went to bed. I tried to put Raya in her bed when I was ready to go to bed and she woke up and got upset that I was trying to carry her out of the living room. I told her I was going to bed and she got mad. She followed me into my room crying but I didn't back down. (see, I said we'd push her more during the summer) I got in bed and went to sleep and she finally gave up and slept on the floor next to my bed. It was the best night's sleep I've had in a while.

Today, the kids spent a lot of time pulling weeds and cleaning. Cole actually asked me for more jobs to do this morning, bless his little soul. He's a good worker. In the afternoon, I really REALLY needed some peace & quiet so I could finish the essays I had to write, so Donny took all 4 of the kids to the library and to the store. It was SO nice. I got my homework done, we had dinner, the kids watched one of the movies they checked out from the library, and everybody is sleeping peacefully. Oh, and the best news of the day is that Raya's new respite provider is starting tomorrow! Happy summer!

Wednesday, May 22, 2013

When Raya does dishes

Raya has been doing dishes a lot this week. It's an activity that calms her down. She spent 4 hours on Monday doing dishes and about 2 1/2 hours today. I never plan for her to play in the sink that long but on Monday she didn't get water everywhere so I just let her be. Today was a HUGE mess though. I got a kick out of what I fished out of the sink when it was time to clean up. When she started, there were no toys in the sink but she had all kinds of stuff in there, including the old G tube that I had replaced today while she was doing dishes. (the extension tube got caught on the chair and pulled out her tube because it was old and the balloon wasn't holding water) She LOVES doing dishes!

Sunday, May 19, 2013

Rough weekend

Raya has had kind of a rough weekend. It started with the little tantrum that ended in a formula explosion at the mall Friday night. Her emotions have been running wild ever since. Her OT says it's because she's moving back into the "self-regulation" phase. Throw in medication & calorie changes and we have ourselves one cute little mess this weekend.

Yesterday was just a rough day all around. Donny's uncle passed away last week from liver cancer at the age of 63, and left behind a sweet wife and 6 children. Donny had to teach a class first thing in the morning and since they just moved locations and started a new "semester" with the school he's teaching at, he didn't feel like he could ask for a sub to fill in for him. That meant that I was home alone to get all 4 kids dressed & ready to go to the viewing at 9:30 and he was going to meet us there for the funeral. As we were getting in the car, Raya decided she wanted a drink of water out of the house. I offered her a drink from a water bottle since all 5 of us were already buckled in and ready to pull out of the garage. She didn't want a drink out of a water bottle. Then she did, but she wouldn't ASK for it, she just kept yelling at me, "Give me a drink of water!" I gave her until the count of 3 to say please and she refused, so we pulled out of the garage. She screamed all the way to the church.

When we got there, I offered her a drink of water again and she wouldn't answer me so we left the water bottle in the car. She cried all the way into the church. Crying at a funeral is generally accepted but not the way she was doing it. After a few minutes of crying, I took her out to the car to get the water bottle but then she just found something else to cry about. That's how you know it's not just your average toddler tantrum. A child who is unable to regulate his or her emotions will not stop crying just because you resolve whatever they were crying about in the first place. My sweet mother-in-law took her out for me for a few minutes so that I could pay my respects and visit with Donny's cousins & aunt. She showed her pictures on her phone of the new horse their mare had a few days ago and after a few minutes, she calmed down.

Since she had calmed down, I took her and the other 3 kids to the nursery room where some teenage girls were kind enough to babysit the little kids during the funeral. Ashtyn was in there with her or else I wouldn't have left her. It was a really good thing Ashtyn was there because we had another pump bag break. During the funeral. This time it was completely and totally the manufacturer's fault. Right where the tubing comes out of the bag, the tube had adhered to the pump bag, probably from being squished during transport or sometime during the packaging process. At some point after I had filled the bag and put it in the backpack, the tubing had separated from where it was stuck to the front of the bag and had ripped a hole in the bag. Not just a pinhole either. It wasn't a huge hole like the one the night before, but it was big enough to make a mess and it was at the bottom of the bag. Thankfully, Ashtyn is a smart girl and turned the pump bag upside down and then put a bunch of paper towels in the bottom of the backpack to soak up the spilled formula. She also turned off the pump and disconnected Raya so nobody had to come and get us during the service. She is such an awesome big sister!

The down side was that Raya didn't get fed until about 3:00 that afternoon. She had drinks of water, but no formula since I didn't have any extra with me. The burial was going to take place that evening a few hours away, so after the service was over (around 12:45) everyone went back inside to have chips & salsa, which is exactly what Donny's uncle would have expected us to eat at his funeral. :) I don't know how, but Raya had a ridiculous amount of energy. She must have been burning through some glycogen stores because she just went nonstop until we got home. She always seems to feel better on an empty stomach except for the part where she gets super crabby when her blood sugar gets low.

Last night, I put Raya in her bed when we went to bed and she actually stayed there until 6:00 when she woke me up demanding something. I don't even remember what she wanted but I vaguely remember telling her to go get a clean diaper, and then I remember looking again a while later and she was asleep on the floor next to my bed. That's two nights this week that I've gotten to sleep most of the night in my bed and it was SO nice.

"Moody" does not even begin to touch the way she's been feeling today. At the funeral yesterday, Raya got her first taste (that she can remember) of being in a nursery classroom at church. Today, she wanted to go back. When it was time to get her ready for church and I told her she was too big for nursery, she got upset and kept yelling, "I'm a LITTLE girl! I can go to nursery!" She laid down on the floor in my bathroom and in the process, she popped open the clamp on her extension tube and all of the Splash she had drank was in a giant puddle under her back on the floor. I put her in the bath and from there, it was just a cascade of her getting upset about one thing after another. Of course her mood had nothing to do with the actual things she was crying about, she just got going and couldn't calm herself down. Once I got her formula going, she was happy and stayed happy until about the last 45 minutes of church. (church is 3 hours long.)

It was really, really crowded during the last part of church. Even I was feeling a little claustrophobic. She told me she wanted to go to "Primary" (Primary=classes for the kids) so I decided to take her. We plan on sending her to her own class once her new respite provider starts, but we're still waiting for that. I took her to the classroom and opened the door, interrupting the class, at which point she looked in and decided she wanted NOTHING to do with that. She immediately turned around and clung to my legs so I decided we'd wait until another week to join the class. After that, she was done. It didn't matter what I tried to do with her, she just wanted to go back to the nursery classroom she got to play in yesterday, which was in a different church building about 10 miles away. She was tired and crabby and got angry at me for not doing what she wanted.
We walked the halls a little bit but really it was more like she was trying to get away from me and thought I was chasing her. I was just trying to stay close enough to keep her from getting into any trouble. It really just went downhill from there. By the time we finally went home, she had been screaming and throwing her toys and I couldn't get Donny's attention to get the car keys from him, so she and I just waited outside on the grass.

It didn't end when we got home either. She got upset about one small, silly thing after another and wouldn't agree to anything I tried to get her to do to redirect her. Finally, she asked if she could do dishes. Sure enough, as soon as she started playing in the sink, she calmed down and felt better. I'm glad that there are at least some times when she can figure out how to calm herself down. This phase is a hard one to push through and gets pretty exhausting for me. Hopefully the changes we are making with her medications will be helpful and not make her feel worse. So far, I'm not convinced that it's going to work. Her stomach and throat have been bothering her today, but I don't know if it's from reflux or from all the screaming and crying she's been doing. Her gastric emptying seems better today than it was the first day on Duocal but yesterday threw things off so badly that I think we need a few more days before we'll be able to tell for sure whether or not it's going to work out for her. Changes are hard.




Friday, May 17, 2013

We don't get out much. And now I remember why.

This evening while Donny and the 3 big kids were at karate class, Raya and I decided to get out of the house for a while and go walk around at the mall. It's an outdoor mall and the weather was beautiful this evening, so it was perfect. We started to walk past the Disney store and she saw the sparkly red floor and wanted to go inside because she liked it. I figured she'd enjoy looking at all the cute things they have there so we went in. By then, she was tired of sitting in the stroller and wanted to walk, so I let her walk and put the pump backpack on top of the stroller canopy like I usually do.

She was on cloud 9 the whole time. To see the level of excitement over every little thing she saw, you would have thought she had been locked in a tower like Rapunzel and had never seen the outside world before. She was cracking me up. She'd pick something up and say, "OH, I LOVE THIS! It's so cute! I think I should borrow this on another day." She repeated this over and over again, intermingled with things like, "Mommy, which girl's name is this princess?" and "Oh, that's so pretty! I have one of these!" (she didn't have any of the things she said she had, it was just her imagination.) We walked around the entire perimeter of the store and she maintained the same extremely high level of excitement the entire time.
They have a giant tower of large stuffed Disney characters in the middle of the store and we went around the entire thing with her picking up every single different character and exclaiming how much she loved it and talking about each one. When she picked up the dog from Bolt, she said, "OH! It's THIS puppy! I LOVE this puppy! I saw this movie! He's supposed to have this thingy on his neck. It has his name on it. His name is BOLT!" And then she'd move on to the next character and do the same thing, even though she didn't have a clue who half of them were. It got to the point that other people in the store were stopping and watching her and saying how cute she was. You would have thought I had taken her to DisneyLAND, not the Disney STORE. I finally decided to take a video of her after we had been there for about 20 minutes because her level of excitement had not gone down at all and she was making me laugh.



By the time we made it all the way through the store, I was thinking to myself, "Wow, she really needs to get out more!" Ha ha. Thinking almost always leads to trouble.

We left the Disney store so we could go home because it was about time for Donny & the big kids to get home. We started walking down the sidewalk past all the stores and the two playgrounds we had passed on the way to the Disney store. She was still chattering excitedly and people on the sidewalk kept smiling at her and saying, "Aww, she's so cute!" And then we passed Build-A-Bear and cute went down the crapper. She saw a bunny and wanted to go in and see it. By now it was approaching bedtime and she was teetering on the edge of adorable and WATCH OUT, and seeing the bunny but having Mommy tell her we weren't going in to look at it pushed her over that edge. She started to get upset and whine. I told her we needed to go home so we could get jammies on and snuggle. She didn't want to snuggle, she wanted to see the bunny.

Her backpack was still sitting on top of the stroller and I was pushing the stroller, hanging on to the tube coming out of the backpack, and holding her hand onto the stroller handle to keep her moving all at the same time. We rounded the corner by the ice cream store and she REALLY started to get mad and throw a fit. I picked her up and she started wiggling to try to get away from me and said she wanted to walk, so I put her back down. She yanked her hand away and started walking the other direction but she ran out of "leash" from her backpack, so she stopped for a second. I put on my most stern but still appropriate for public settings "Mommy voice" and said, "Raya, come back here right now, you're still hooked to your backpack."

I let go of the stroller and took a step towards her. She looked at me square in the eye, grabbed onto the tubing with both hands, and yanked. The backpack went flying off of the top of the stroller onto the sidewalk. We had an audience of passers-by at this point so I was trying to exit as quickly as possible. I reached down and put my hand through the strap on her tiny little toddler-sized backpack and in one swoop, stood back up while sliding my arm through the strap like I've done so many times before in the past 3 years. Just as the backpack reached my bicep, I heard an audible POP, followed by the gushing of formula from every part of the backpack that it could possibly have gushed out of. It was an explosion of Neocate. Did you know that you can actually fit 750ml of formula in a 500ml Infinity pump bag? It had about 600ml in it. HAD being the operative word. Formula was EVERYWHERE. It had sloshed across my back and onto my pants, and when I realized it was pouring out everywhere, I dropped it off of my shoulder into my hand, so then the formula was pouring out onto the sidewalk instead of onto me. It ran out of the backpack and splashed off of the sidewalk all over both of us. Her feet were soaked. My feet were soaked. It just kept coming. People walked by and stared as I stood there with a backpack (which was beeping by this point) that was leaking profusely and I'm sure a look of stupor on my face. I really didn't know what to do so I just stood there. Many thoughts ran through my head but mostly, "Um, I'm not really sure what to do right now." I opened the backpack and couldn't believe how much formula was pooled up in the bottom of it based on how much was all over the sidewalk, me, and Raya. It was probably a good 30 seconds before I even realized that there was formula dripping off of my hair onto my arm. Not to mention what was still running out of the backpack. At that point I figured a little more wasn't going to make a difference so I just dumped it all out on the sidewalk where the rest of the puddle was.
If only the picture showed how big the mess really was. I think we even sprayed the window of the ice cream store. I set the backpack on the ground and put her back in the stroller, dumped some more formula out of the backpack, and headed for the car. Oh, and I took her shoes off because she was freaking out about her feet being wet and having formula in her shoes. By that point, I was already laughing because you just can't make this stuff up. In 3 1/2 years of tube feeding, we have never had a pump bag explosion like that one. I was so glad it happened OUTSIDE and not in the Disney store!

When we got to the car, I parked the stroller on the sidewalk, unlocked the doors and put my bag down (which was also spattered with formula). I couldn't hold the sopping wet backpack with one hand and push the stroller across the rocks and over the curb with the other hand, so I left the stroller on the sidewalk while I picked Raya up with one hand and carried the soggy backpack with the other. Luckily there was a grocery bag in the car to put the backpack on so it didn't soak the carpet in the car on the way home. (Lesson #37 of tube feeding: ALWAYS have plastic grocery bags in the car!) It was then that I finally got a good look at the bag. This is by far the largest hole we've ever had in that location on a pump bag.
For anyone who is not familiar with an Infinity pump bag, the hole was at the bottom of the bag where the tubing exits the bag and is about 1 square inch. Large hole in a bad spot to have a hole.

Once she was buckled in, I went back to the sidewalk to retrieve the stroller. As I picked up her blanket, I caught out of the corner of my eye the fluorescent yellow vest of the mall security guy on a bicycle. It took me a second to process what was going on, but there were about 4 mall employees putting cones around our giant formula spill on the sidewalk. I loaded the stroller into the car, got in, closed the door, and laughed out loud until my sides hurt. Raya sat in the back seat saying, "Mommy, why aren't you going yet?! Mommy! I want to go home now! Mommy, will you just DRIVE?!"
And that's why we don't get out much. :)

(fingers crossed that the pump still works after that formula bath!)

Shtuff Raya says...

Ever heard the term "speech explosion" tossed around? We have most definitely experienced one of those in the past couple of months. We thought she was talking a lot and speaking really well and then all of a sudden, her articulation got a lot better and she has even more to talk about. Nonstop. All day long. We have officially entered the stage where I sometimes cringe when she talks in public because I don't know what's going to come out. It's okay with me though because even if she said something embarrassing, it would be worth the entertainment factor. I love the way her voice sounds and the way words sound when she says them (most of the time) and I love the stage she's at. She's come out with some real gems lately but I can never remember all of them when I want to.

I think I already shared this one but a few days ago, she and I were laying on the couch and Kaida was in her room having a moment of 5 year old drama. Raya sighed deeply and said, "Kaida is acting like a child." When I asked her where she got that, she said she heard it at preschool. That made me laugh too because preschool is a room full of children, so I doubt they would be saying that there. Kaida told me later that Raya heard it on the movie Brave.

The girls took a bath after we picked Raya up from school today and when I was getting Raya dried off, she was chattering about something. I can't remember what she was talking about now but she said, "...but it's not lame. And it's not hilarious. It's just perfect." A big part of what makes her so funny is the facial expressions and hand gestures that go with the things she's saying. She puts her hands up in the air a lot when she's talking. Lately, anytime one of the big kids gets upset with her about something, she puts one hand out and says, "Do you even LIKE me anymore?!"

In the past couple of weeks she's asked me several times, "Mommy, when is Dr. S going to say I can eat grapes?" She also likes to tell people that she's allergic to things but she can have pudding. If it's somebody we know, that's usually followed by them asking, "Isn't she allergic to milk?" I suppose someday if she's ever able to have real pudding, she will be shocked to realize that her "pudding" was not actually pudding. She'll probably hate the real stuff.

After they had their lunch today, they started arguing about something but I couldn't quite hear what it was. Then Raya started yelling at the top of her lungs, "I'M NOT RIDIC-LEE-US!!" over and over again. Ridiculous is one of her recent favorite words and I love how she says it. The fact that she was yelling it in an argument with her 5 year old sister made it even funnier. :)

She also likes to make her toys talk. And her hands. One of these days, I'll get a good video of her hands playing. She has one heck of an imagination when it comes to that. The added bonus is that we never lose them like kids can lose toys. She took toys with her to the doctor's office yesterday and played while we were in the waiting room. This video is a very mild and subdued moment compared to her usual energy level but it's still a pretty good representation of the way she plays, and the way she gets distracted in the middle of things. :) And for the record, one of the "toys" she's playing with is indeed a ponytail holder, and the ponytail holder was involved in the conversation with the dinosaur and the Squinky. She's THAT creative. :)







Wednesday, May 15, 2013

GI follow-up, test results, and some reminiscing

It's amazing how the mere anticipation of an important appointment can be exhausting. And nauseating. I normally schedule appointments like that for early in the morning so that I don't have as much time to stew over things but today's appointment wasn't scheduled 3 months in advance like they usually are so we were stuck with a 2:15 appointment.

I don't know why waiting for this one was so intense for me today. I really love her GI doctor and Raya really loves her too. Raya was rather cute and charming at her appointment today. :)

Nevertheless, waiting for appointments always makes my stomach churn. It's not like there were going to be any huge decisions made or any bombs dropped. I was anticipating disappointing results from the impedance study. They weren't completely disappointing (as in completely NORMAL), but there was one thing that was COMPLETELY disappointing and not at all expected. There was a page attached to the results (which our GI had not seen yet since they had somehow been sent to and evaluated by the wrong GI...) saying that one sensor on Raya's impedance probe turned out to be broken. I don't know how many sensors there are on a probe, but I think it's either 6 or 8. They are at varying heights from the bottom to the top of the esophagus, and I don't know which one was not working but if I had to take a guess based on the report, it looks like it might have been the second one from the bottom. The note that was left by the RN who had the pleasure of torturing Raya putting the probe in Raya's nose said that one sensor was broken and she wasn't sure how trustworthy the results of the test would be. Whoa there, stop the bus. Not sure how trustworthy the results are because one of the sensors broke?!?!?!?!?!?

?!?!?!?!?!?!?!??!#@&        *$@&$^$*@&#         $*@#^&$*

You have GOT to be kidding me. After I cleared the swear words from my mind, we went over the report and the notes the other GI had written on it. It was pretty underwhelming. She had slightly higher than normal "weakly acidic reflux", no acid reflux (um, she's on high doses of Prilosec so duh), and 1 episode of non-acid reflux. First of all, I was unaware that it is considered normal to have ANY reflux. How is it normal for stomach contents to reflux into the esophagus?! Apparently, some reflux is normal and she was slightly above normal with the weakly acidic reflux but that's it. Not surprisingly, most of the weakly acidic reflux episodes were while she was laying down. In 24 hours, she only had "refluxate" (i.e. stomach contents) in contact with the sensors for 0.2% of the time. Unless the broken sensor missed some and messed up the numbers. It's really REALLY hard to read the doctor's handwriting (big surprise) but it looks like it says "GER/persistent regurgitations on PPI; No evidence of pathological GER; few episodes of weakly acidic reflux are present _____(no idea what that word is) supine; consider maximized PPI (AM) + H2RA (____)"

So let me break that down. One part says she has persistent regurgitations on PPI (aka Prilosec). The next part says that she has no evidence of pathological GER (gastroesophageal reflux), which I believe means that it is a physiological thing rather than a symptom of a disease/condition, but I could be totally making that up. She has more reflux when she's laying flat, which is probably why she's more comfortable sleeping propped up. We spent some time discussing Raya's current medications and agreed that we should make some changes. She's been on her current meds for quite a while now. One question that has been on my mind a lot lately is if it's possible that her current level of acid suppression is inhibiting her stomach's ability to break down and digest food. Her GI doesn't think so though, or at least not to the degree that taking her off of the acid suppressants would make a significant impact on her gastric motility.

In the interest of trying something different to see if we get better results, we've decided to increase her morning dose of Prilosec and give her Zantac at night in place of the evening Prilosec dose. The reason for that is that Prilosec and Zantac act on different types of acid-producing cells in the stomach. Prilosec and other PPIs reduce the amount of stomach acid by preventing the release of hydrogen ions into the stomach that would be used to form hydrochloric acid, aka stomach acid. Zantac and others like it are histamine H2-receptor antagonists (H2RA). The cells in the stomach that produce hydrochloric acid are activated by the hormone histamine. H2RAs (aka H2 blockers) like Zantac and Axid bind to the activation sites on the acid-producing cells so that histamine can't make them produce acid. (It would be kind of like Zantac covering up a light switch so that histamine couldn't turn on the light.) So to make that short story very long, we're going to make changes to the way we are suppressing her stomach acid production and see if it has positive effects on her symptoms or not. If not, then we'll look more seriously at the possibility of doing a fundoplication, which is a surgical procedure that prevents reflux by wrapping the top of the stomach around the lower end of the esophagus in order to make it tighter so that what goes in the stomach will stay in the stomach.

The complicating factor for Raya with a fundo is that she has "suspected" delayed gastric emptying. (I use quotation marks because we have not confirmed it with any kind of test other than me emptying mass quantities of several hour old food from her stomach late at night when she feels like crap.) DGE means that if we prevent her from being able to vomit by doing a fundo but her stomach also empties more slowly than it should, she could end up with a lot of pressure in her stomach that would be painful and could cause retching and other issues. A pyloroplasty would loosen the pyloric sphincter and allow her stomach to empty more rapidly, but the risk there is that it could end up emptying too quickly and that wouldn't be good either. Throw in a whole slough of food allergies on top of those two things and you can probably understand why thinking about all of this, trying to figure out what to do next, and talking about it with her doctor nearly brings me to tears.  {*pausing to dab eyes*}

As I told her doctor, I am feeling really frustrated right now because it feels like everything is totally stagnant. It IS totally stagnant. On one hand, she's much better than she was 6-8 months ago, but that's because we've eliminated all food from her diet, put her back on elemental formula, and slowed her feeds down to 2 hours each. We have not added anything back into her diet since January when we took food away, and we have not been able to increase her feed rate without making her uncomfortable or making her spit up. We haven't been able to do a gastric emptying study with solid food to confirm her delayed gastric emptying because apparently there are no radiologists that are willing to block out 3-4 hours of time for one child. So yeah, feeling a bit stagnant. I appreciated her response to that though. When she said she understands my frustration, I believed her. I know she wishes we had gotten things more figured out by now too. She said to me, "I'm not trying to minimize your feelings at all, but you have to remember how far we've come in 3 years. The way she is now is so much better than the way she used to be!" And I completely agree.

We're not cleaning up constant puddles of vomit and spit-up anymore.
We haven't had an inpatient surgery or emergent hospital stay in over 2 years.
We don't have to feed her into her intestine 24 hours a day and drain bile out of her stomach around the clock anymore.
And we don't have to deal with an NG tube anymore! (or a GJ, that wasn't fun either)


Things were much worse 2 or 3 years ago. I'm extremely grateful for the progress we've made since then and thankful for the relative calm we've experienced in the last couple of months. I realize things could be worse. As grateful as I am though, I'm tired of standing still and I want to keep moving forward.

In other news, Raya has also lost weight since January. Not much, but a loss is a loss, and a loss is also not a gain. In the 4 months between September and January, she gained 1 lb 3 oz. Since January, she has lost about 4 ounces. Again, not a big loss, but when you consider that in the 4 months prior, she gained 19 ounces, a loss of 4 ounces could really be considered a loss of 4 ounces PLUS a lack of gain that could have been around 19 ounces again. In January, she was in about the 54th percentile for weight and now she's in about the 37th percentile. Not a good trend, so we're going to try increasing her calories by adding Duocal. The reason we're adding in Duocal instead of increasing her formula volume is that she's doing well with her current feed schedule, and we'd rather increase the caloric density a little bit than try to increase her volume. If she doesn't tolerate the Duocal, we'll increase her volume instead. It should be interesting to see what happens in the next couple of weeks with those changes.

She continues to have nightmares pretty much every night. She wakes up in a very agitated state and wants NOTHING to do with me until she's fully awake. Last night we miraculously got her to go to sleep in the girls' room instead of on the couch, and that lasted until about 2am when she came in my room and demanded in a grumpy voice that I snuggle her on the couch. I obliged her so that she wouldn't wake up everybody else at 2am with her crying and yelling for me to snuggle her. This evening, she fell asleep in the living room and about 3 1/2 hours later, woke up with another nightmare and is now nodding off on my lap. I miss sleeping in my bed but the couch isn't horrible and I will never complain about snuggle time with my anti-snuggler.

To end on a positive note, Raya did so unbelievably well at her appointment today. She was really happy the whole time we were there and didn't show any signs of anxiety when the doctor came in like she usually does. They interacted, played peek-a-boo around the exam table, and Raya gave her hugs and answered questions. She colored, played with the toys she brought, sang songs, ran around the room, climbed on things, and made a lot of noise, but it was happy noise. Some of the medical assistants there have been working there since before we became frequent flyers so they all know her and are very sweet to her and she loves the attention. She is a little pro at getting weighed & measured. Sitting still for the blood pressure cuff is another story, but she was so cooperative today. Except for when she colored on the chair with a pink crayon.

 
I was very proud of her today!
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