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Thursday, June 26, 2014

Pump drama. To go along with our G tube drama.

We have had some feeding pump drama the past few weeks. It wasn't totally the pump's fault but the Reader's Digest version is that since we started using the new glow-in-the-dark extensions, we have had major issues with pump accuracy. This is the same thing that happened last summer/fall when one of the AMT reps that I had met at the Oley conference last summer sent us one of the GITD extensions to try out. Initially, the glow factor was cool and the kids and I were all a bit excited about it. Let's face it, glowing in the dark is about the most exciting thing that's ever happened to enteral feeding supplies. It wasn't long though before my love for the improved design of the medicine port far surpassed my excitement about the novelty of the glowing pieces. We had long since stopped using Y port extensions completely because the benefit of having a med port there was not worth the trouble of trying to keep it closed. After a few days of using it, I noticed that her pump was running longer than it should have been and was reading as if it had fed her anywhere from 200-400mls more than what I knew I had put in the pump. There were nights when it should have been empty at 2 or 3 in the morning and didn't beep until 7. At the time, I blamed it on our pump but still kind of wondered if that was the cause or not because we tried 2 different pumps and they both did it.

Fast forward to the past few weeks, and we FINALLY convinced our home health supplier to send us some of the new extensions. It's been SO nice to have a good, solid med port and I had started to get used to having a med port again when we started having problems with pump accuracy again. At first, it was the same thing that happened last summer where the feed wasn't ending until 2-3 hours after it should have, or the pump was beeping "DOSE DONE" but there was still formula left in the bag and shouldn't have been. Then what happened on Monday this week was the straw that broke the camel's back for me.

I had started her pump at about 9:00 that morning. Right now, she gets 2 continuous feeds of 625ml each at 75ml/hour, so she runs most of the day and then I unplug her for a couple hours in the late afternoon, and then start her again at dinner time. I normally start around 8 am but the pump had still been running until about 6, which it shouldn't have been, so I let her stay off for an extra hour just to make sure she was empty & comfortable. I turned everything on and sent her off on her way to play just like we do every day. At 4:45, I went to unplug her for swimming lessons and the pump bag was still very full. By that time of day, it should have been close to empty. It turned out that the extension tube was clamped and had been clamped for most of the day. Nobody knows how it got clamped, of course. But yeah, the pump ran all day long with the tube clamped and never beeped once to tell us there was a problem. THAT is a problem!! Especially when it's late June in AZ and 105+ outside!

On the positive side, I called the after-hours number for our supplier and they had a new pump out to us in about 2 hours, so that was great service. AND it's a brand spankin' new pump, which we've never had the pleasure of having before so that was nice too. It still had the protective film on the screen. The next day, I kept using the GITD Y port extension just to see if it would work normally with the new pump. Long story short, it did not. We still ended up WAY off that day. The next day I switched back to a right angle straight port extension like we usually use and everything went almost perfectly. Almost, but not quite.

We also realized that part of the problem is that for whatever reason, the formula has been settling really badly lately. I don't know if maybe it has to do with the weather being so hot and it being a little more difficult to keep the formula cold or what, but it is definitely part of the pump accuracy problem. If we don't shake the bag every so often, sediment settles down to the bottom of the bag and partially obstructs the opening into the tubing. It seems to prevent the pump from feeding at the programmed rate but must not create enough negative pressure to trigger the NO FLOW IN alarm like it should. It is a frustrating problem but hopefully now that we know the extensions don't seem to work well for us and that the bag has to be shaken a few times a day, we'll be able to avoid the problem.

Saturday, June 21, 2014

Being happy and staying busy

The week before school got out, we had a little family meeting and made lists of things we wanted to do this summer. It was a pretty long list, and we made it with the goal in mind of doing things to help us learn and grow. We also made it with the understanding that we may not do everything on the list, but at least it gave us a lot of ideas to choose from. I am happy to report that so far, we are doing pretty good with knocking things off of that list. I feel at times like I am running on nothing but fumes, but I am happy.

I decided that we would need to stay busy over the summer in order to keep everybody from fighting and bothering each other, so that's what we've tried to do. Really, it doesn't take much effort with all the things that have been on the schedule. I feel like we've been constantly on the go for the last month since school got out. We've gone to the summer movies, done lunch at one of the schools that serves lunch over the summer, gone to the library, had church activities, taken swimming lessons, gone swimming in the neighborhood pool, gone to therapy, gone grocery shopping, had doctor appointments for 3 of the 5 children, played computer games, played card games, practiced taking turns on the iPad, played with friends, babysat a kid or two, and all sorts of other busy but fun things. I've tried to find opportunities to serve and help other people wherever we can, and also practiced the art of knowing when enough is enough and have allowed myself to not volunteer for things that I felt would push me over my limits without feeling guilty about it. Not a week has gone by that we didn't have to go somewhere every single day. It's exhausting but it's worth the exhaustion.

People often ask me how Raya is doing. It's a hard question to answer because I sometimes don't know how much people really want to know about how she's doing. Overall, she's doing great. GI-wise, she's struggling, and that leads to struggles with sleep. Both of those problems lead to struggles with behavior. There is a recurring theme of Raya seeking control over whatever aspects of her life she can find to exert control over, and we are trying to help her find constructive ways to do that. In the process, we deal with a lot of meltdowns over things that really shouldn't be a big deal, and would not be a big deal to most people. It takes a lot of energy to handle her meltdowns the way I know I need to. Sometimes I want to high five myself when she pulls herself out of a really bad meltdown and we talk about it and she apologizes for the behaviors that she knows were not okay. I also want to high five her. I know how hard she has had to work to become who she is today, and I think she is an awesome kid.

Anyway, here are a few pictures from the last week or so:
Friday evening snuggle time while Daddy & the big kids are gone
I don't care what anyone else thinks or says, I am 100% head over heels in love with this girl and her recently-acquired  thumb sucking habit. She melts my heart and I just can't get enough of her!
After about 3 1/2 months of her not having any way to soothe herself, that precious little thumb has become a lifesaver for all of us and she and I have both gotten more sleep because of it.

This picture is one of my new favorites of Raya and Cole. She had popped her pump bag while the kids were dancing in the living room, so she was stuck on the couch because the backpack got soaked with formula and I didn't want her dragging her pump around without being in something. I had no sympathy because she did it by flopping down on her back on the couch ("but Mommy, it was part of my dance moves!") and she has been warned not to do that. Anyway, she was bored and didn't want to read books by herself and the next thing I knew, she and Cole were snuggled up and reading Green Eggs and Ham together. It was so sweet and cute that they more or less redeemed themselves from most of the bickering they've done all summer long. He was reading to her but he was also telling her some of the words so she could "read" the book out loud too, and they were finishing each other's sentences and just having a great time together. It was one of those moments you'd like to be able to bottle up and keep forever.

At 4 months and 1 day old, Piper started trying to hug toys to hold onto them.
We visited Donny's parents on Father's Day and Piper got to try out one of Grandpa's saddles
She liked it and kept trying to eat the saddle horn.

This week, Piper had her 4 month check-up. I am slowly but surely getting used to having short appointments with nothing but normal stuff to talk about. She is comfortably in the 25th percentile for weight and is maintaining her growth curve, so I am happy. She is also quite possibly the most cooperative of our kids with vaccines. She swallowed the rotavirus oral vaccine without vomiting it back up or choking on it, didn't make a peep with the first shot, and only cried a tiny bit with the second shot. Being that it was the tdap shot, I totally understood why she cried a little. That shot hurts. She barely cried at all though, and even Cole said he was impressed and proud of her for being so tough. :)


Like I said, I just can't get enough of snuggling with this baby!

Week 2 of swimming lessons: we are no longer afraid to put our face in the water but we are still trying our darndest to negotiate our way out of doing anything that we don't want to do, and have absolutely zero attention span.

The big kids thought they were so funny putting goggles on Piper :)
We've been testing out different ways to waterproof the G tube. When we've finished all of our experimenting, I will do a post about it. Raya has thoroughly enjoyed having me have another reason to take pictures of her.

She is a much happier baby now than she was a month or two ago and has become a much better napper!

It's not until you have a child with developmental/motor delays that you appreciate the sight of a 4 month old reaching equally with both hands to touch a toy at midline. Raya did not even know she HAD 2 hands at 4 months old. More on this subject in a future post.

Piper disappeared a couple days ago and I found her on Kaida's bed with the big kids. They were playing with her and reading to her and just having the best time with their baby sister. :) Aside from the fact that they had her on the top bunk with them, it was adorable.


In the past week, Piper has gone from not noticing or caring about toys at all, to reaching towards them, hugging them, and is now starting to try to grab them with her hands. It is so fun to watch her learn!
 
 
Today was a pleasant but busy day too. I normally go back to sleep for a little while after I wake up and pump first thing in the morning but today I couldn't because I was babysitting my friend's little girl who has a GJ tube. I just love these little tubie buddies of ours. We are truly blessed to have so many that live close to us. We had her from 8:00 until about 4. Thankfully it was uneventful. The only thing that happened was a brief moment of panic when Raya pointed to a wet spot on the front of the couch and asked me what it was. I knew it was probably formula and decided the quickest way to find the source would be to narrow down which girl it came from. They are not on the same formula so all it took was one little sniff of the couch to find that it was Raya that had somehow leaked. I never did find the source of it but it made me laugh. There's always something to laugh about!

Thursday, June 12, 2014

Swimming lessons!

This week, the kids had the opportunity to take swimming lessons from a young man we know from church who is working to earn money this summer to go towards paying for his mission this fall. Swimming lessons in Arizona really stink when you're the mom that sits out in the 105+ degree heat for 90 minutes but thankfully it was at a friend's house and there was shade. I've never seen kids more excited to do swimming lessons! I feel kind of bad that we've mostly skipped out on the swimming lessons but it was just more than I could handle when they were younger and Raya was a baby and my life revolved around her appointment schedule and keeping her healthy. (and minimizing the amount of public vomit)

Anywhoo, fast forward to 2014 and I have a couple of kids who are decent enough swimmers that I'm not afraid to turn them loose at the neighborhood pool but also need swimming lessons and are too old for their skill level at the town pools, one that desperately wants to be allowed to swim without a floaty vest since her friends don't have to wear one (their moms also don't have 5 kids to watch simultaneously...), and one kid who has no sense of danger and chokes on drinking water, let alone pool water. So yeah, we needed help.

Raya and Kaida and another little kiddo had the first lesson. I have never seen a kid more excited to do swimming lessons than Kaida. She would probably swim better if she could wipe the giant grin off her face. :) She has caught on to everything really quickly, is eager to learn more, and does everything they tell her to do. She loves every second of it! Raya, on the other hand, is happy to be in the pool but in true Raya fashion, wants to be doing what SHE wants to do and doesn't really care to pay much attention to the teachers. Her attention span is short out of the water but shorter in the water. We have always had to be careful with her in the pool because if her face ever went in the water, she inhaled it. We tried to teach her to blow bubbles in the pool before but she didn't really catch on and has never learned to hold her breath. Maybe I should have given them a little bit of background on her, but I opted not to. I decided to just warn them to watch out for her tube but other than that, I just threw caution to the wind and let them handle her.

On the first day. they were kind of assessing where the kids were at skill-wise and tried to get them to go down to the bottom and pick up a dive ring. Kaida needed help getting her skinny little body to the bottom but she held her breath without a problem and grabbed the ring. The little boy in their class was able to get it too. Then it was Raya's turn. Bless her heart, she freaked out when he told her she was going to go under the water and had no idea how to hold her breath. Within a couple minutes of working with her though, he was able to get her to put her face in the water and grab the ring that he was holding just under the surface, so we called it a win. And oh, was she ever proud of herself!

Then it was time to show the teachers how well they could kick. Kaida did great, other than needing to keep her legs straighter!

When it was Raya's turn, she demonstrated her unique talent for clinging to the teacher with both her hands AND her legs. I did not know she could bend that way and I think he was a little confused at first as to who or what was wrapped around his arm. Overall, I considered it a pretty successful first day.

Cole and Ashtyn were in a class with our friend and another boy. Every time my kids go swimming with other kids, I realize once again how very skinny and pale our kids are. Really. You'd never guess they eat as much as they do. Anyway, they did pretty good on their first day too. They are functional swimmers, meaning they can get from point A to point B, but it ain't pretty and it's very inefficient. Hopefully they'll improve their strokes and learn how to move and breathe correctly.

The second day was quite possibly more entertaining than the first day with Raya. Tuesdays are always kind of long and exhausting for me, and I had gone to bed with a headache Monday night and still had it when I woke up Tuesday so I was ready to turn the kids loose at swimming lessons by the time 5:00 rolled around. Raya was making me laugh all the way through it though. I know that "manipulative" is not the word I'm looking for but that girl can talk her way out of just about anything. Or at least she tries. That's what she did all the way through her lesson on Tuesday. Every time Robbie asked her to do something, she would try to negotiate it down to something she was more comfortable with. He said, "Raya, jump off the step and swim to me" and her response was a very matter-of-fact, "Um, I need you to move a little closer." Not, "Oh please don't make me do that! I'm scared! You're too far away!" but just a very calm and cool, "Um, I need you to move a little closer." Thankfully he's not a pushover and he stayed put and she still jumped to him.


I can't remember what she was saying to him in this picture but probably something along the lines of, "You're going to hold onto me the whole time, right?"
And by that, she meant something along the lines of, "If you don't hold onto me or if I feel like you're not holding on tight enough, I will flip my legs around behind me and wrap them around your arm so tight you won't know what hit you."

The big kids have made huge strides in their understanding of the mechanics of swimming and Kaida is just soaking it all up as fast as the teachers can teach it to her. Raya is MUCH less afraid of the water, which I have mixed feelings about, and even in 3 days' time, she is doing a lot better with not choking on water every time she gets her face in it. AND she's actually putting her face in the water. I'm not sure how many weeks we'll keep doing swimming lessons but I am really liking being able to take them somewhere during the crazy hours of the evening and turning them over to somebody else!




Saturday, June 7, 2014

G tube drama

We've had some G tube drama around here lately. We replaced Raya's tube on May 5th, with a shiny new AMT Mini One button, complete with new glow-in-the-dark feed port. Raya thinks it's pretty awesome that her tube glows in the dark! It doesn't really do much for me as far as helping me connect in the dark, which is the intent behind the new GITD tube & extension sets, but she likes it so whatever. :)

Unfortunately, my frustration with the Mini One is growing. We switched from a MIC-KEY button to a Mini One in April 2012, after way too many accidental pull-outs with the MIC-KEY. The balloon shape of the Mini One made it MUCH more difficult to pull out, and the smaller exterior button kept it from getting caught on things and pulled on. Overall, our experience with the Mini One has been great, but I'm reaching the limits of my patience with the one thing I don't like about it. For whatever reason, every single Mini One button we have ever used has ended up with the balloon being lopsided to varying degrees. Sometimes it's just a little bit lopsided but other times, like this time, it is so lopsided that there is barely even any balloon left on one side of the stem. This is a side-by-side shot of the lopsided one and the brand new one that we replaced it with:
As you can see, the balloon on the left has gotten very out of shape compared to the one on the right, with its wide, flat, apple-shaped balloon. I can't imagine that the one on the left could possibly be comfortable, nor does it accomplish its purpose of forming a good seal around the stoma. Her stomach started leaking shortly after we put the tube on the left in back in May. I chalked it up to her recent decrease in motility, and that also played into it, but the tube was largely to blame. Even worse, when the balloon shape changes that much, it makes the tube much more likely to get pulled out. Twice this week, Raya's tube has been pulled out accidentally while she was playing with her brother.

Since the tube on the left was less than a month old, I called our home health provider and let them know that it was defective and we needed a new one and the sent one out right away. I also contacted AMT and sent them pictures of the lopsided tube. They are a great company and they do appreciate feedback from consumers, so I always try to give useful feedback. Kimberly-Clark (MIC-KEY manufacturer) also likes to hear feedback from consumers.

Anyway, we've racked our brains for the last 2+ years to figure out why her balloons always end up lopsided like that. If it sat in the same position in her stomach without ever twisting around, I would assume it was conforming to the shape of the inside of her stomach, but it moves all the time. It twists around constantly, so I am convinced that that's not the issue. I know there have been times when a brand new tube has had a slightly lopsided balloon when I have inflated the balloon to check for leaks before putting a new tube in, but they never start out as lopsided as they end up. We may have no choice but to switch to a different button if this keeps happening because we can't send her to school with formula running out of her stoma and a balloon that will pop out too easily.

On an amusing note, I had posted this picture in a facebook group and it was pointed out to me that the picture makes the tube look disproportionately large. :) Now I laugh every time I see it.

Friday, June 6, 2014

Just keep swimming

I have started this blog post about 4 times now and ended up having to delete it all and start over because I took too long and never finished. Maybe this time will be different! We are on week 2 of summer break and so far, we're doing pretty well. We haven't stayed on a perfect schedule but the kids have done pretty well completing their daily tasks and helping with household chores. Heck, we even had a bathroom cleaning lesson last week. Some of them were less thrilled about that than others but I told them that when they know what's expected of them and they know how to do what's expected of them, it eliminates frustration for all of us.

We've had some weird things going on with Raya, and especially with her sleep patterns. I think she has been awake more at night than I may have realized. She was mad at me for something on Saturday morning and was laying on the floor next to the couch throwing a fit. I was laying on the couch with a sleeping Piper, and I don't give in or pay attention to Raya's fits, so Piper and I just snuggled and ignored her. Next thing I knew, she was quiet. I couldn't see her and didn't want to move and wake Piper up so I took a picture over the arm of the couch and was shocked to see that she had fallen asleep on the floor at 8:30 in the morning. She NEVER takes naps. She woke up crabby but perked up after she took a shower.


Saturday evening, the young women's group from church had a dinner and talent show to fundraise for girls' camp. The kids were really excited to participate in the talent show. They are way braver than I ever was! Ashtyn wanted to sing "Let it Go" and was kind enough to let Kaida and Raya be on stage and sing with her. She completely hogged the microphone but she was super sweet to let them sing with her and she did a great job on the song. They were really cute. They had even picked out coordinating outfits to wear. :) After they sang, Ashtyn and Kaida changed into their karate uniforms so they could do a martial arts demonstration with Cole. Donny had worked out a demonstration for them and I think it surprised the heck out of everybody to hear our mild-mannered kids yell and see them throw each other and take each other down. The kids loved every minute of it too. It's so neat to see how their faces light up when they're doing something that they love and that they know they're good at. I didn't get pictures because I was video taping them. I did, however, snap a picture of Piper in her "little black dress".
She looks super excited to be there, right? She was just sleepy. Her great-grandparents sent her the shirt and I thought it was the perfect occasion for it. :)

This week has been kind of a roller coaster. We started out strong on Monday. I took 2 of the kids to the grocery store with me Monday morning and then when we got back, we left Raya with her respite provider and went to one of the schools in the area that does free lunch for kids all summer long. The kids ate lunch and then we went to the library. That was kind of another adventure since it's always an adventure taking a baby somewhere you haven't taken them yet. Aside from a very near blowout diaper, she did well. The kids were excited to check out some new books and start the library's summer reading program. We left when a very cute little girl that was probably between 18 months and 2 wouldn't stay away from Piper in the stroller. I'm a germophobe and I'm not ashamed to admit it. She was an adorable little girl, I just didn't want her touching my baby. We stopped by the pharmacy to get Raya's medicine on the way home (and I now remember why we don't use that pharmacy anymore) and then headed for home. I made some delicious fajitas for dinner, we watched a couple episodes of Murder, She Wrote and discussed who we thought was the bad guy, and then sent the kids off to bed. It was a great day. Ashtyn even handled another feeding pump emergency while I was making a quick run to the bank in the afternoon. Raya's pump bag broke and started spilling formula everywhere. Ashtyn got her off the carpet ASAP, took her in the kitchen and made her stay in one spot, and poured the rest of the formula into a container. She was cleaning formula up off the floor when I got back. I was gone for maybe 20 minutes at the most. She is such a great helper and got Raya into the shower for me while I finished cleaning up the mess and got a new pump bag ready.


Tuesday was not. Tuesday was hard. Raya had what was probably her second worst day at therapy ever. Of course it happened to be one of the rare times when we ran into friends who were there for feeding therapy. It's always fun to have people you actually know outside of therapy see your kid having a major meltdown at therapy. It took her about 90 minutes of crying and fit throwing to finally calm down and participate, but not before she got upset again at the fact that she didn't get to play in the OT room at all that day because she had instead chosen to waste her entire OT hour crying and refusing to do anything or talk to anyone. Eventually she got over it and was able to eat some fries and ketchup (much to my dismay). I think all of my children like ketchup out of spite for me. I hate everything about it. It was painful and nearly gag-inducing to watch her squeeze and suck every last drop of ketchup out of the packet we had brought to therapy. My siblings would have loved it.
The rest of Tuesday was just hard for me and I can't really even explain why. Suffice it to say that we are soon going to be stepping into a whole new side of medical complexity (mental health) that I had hoped we could avoid but it's becoming apparent that we're not going to be able to do that. It is completely understandable that a child with her medical history would need some support in that area, it's just hard for me to not feel like this is another area where I'm inadequate for her needs. A mother should be able to give her child the emotional and mental support that they need without having to bring in outside help, ya know? Anyway, we'll see how that all unfolds.

Wednesday morning was really weird. Raya slept in until 9:30 and that's completely unheard of. I don't think she ever slept that late even as a baby. Cole had an appointment with the allergist/asthma doc at 9:30 so I had to leave before Raya was even awake. After I got home, she was still pretty groggy and sluggish. It was very strange.

Cole's appointment went great. The good news is that his asthma is doing fabulous and he rarely ever has any issues at all anymore. He also weighs the same as his 11 year old sister, which is good for him and probably not so much for her but what can you do. They both eat as much as I do most of the time, and sometimes more. The not so great news is that he has now added blueberries to the list of foods that he's allergic to. It may be more of an oral allergy syndrome type allergy, where the pollen in the air affects the way his body reacts to food, but either way I'm pretty sure he's sworn off of fresh blueberries from now on. His list includes peanuts, all tree nuts, bananas, mangoes, avocados, kiwi, and now blueberries. He hasn't actually reacted to avocado and kiwi but was told that because he's allergic to banana and mango, he's very likely to have the same reaction to avocado and kiwi and he would just rather not risk it. It's such a relief as a mom to know that he would never willingly ingest any of the things he's allergic to. Some kids crave the foods they're allergic to, or try to sneak them. Cole did that occasionally when he was younger, but thank goodness he's old enough now to be aware, careful, and more or less responsible when it comes to his food allergies.

After his appointment, we went home and got everybody into their swim suits and headed to the neighborhood pool to swim with our friends from church. It was HOT and the sun was scorching, but the kids had a good time. I managed to only get the front of my thighs burned, and I kept Piper from getting any sun on her, so I considered it a success. I was afraid Ashtyn was going to get sick after we swam because I swear she is prone to aspirating pool water and then getting respiratory infections and she sounded kind of junky afterward, but she didn't. Maybe she's finally grown out of that at 11 years old. We went home and got everybody showered and dressed and then just relaxed at home for the rest of the afternoon.

Thursday, Raya's respite/hab provider came over at lunch time and sat with Raya while she picked at a potato. We called and sang "Happy Birthday" to my darling grandpa, who turned 90 that day. Singing to people on their birthdays is one of my kids' favorite things to do. Other than that, the kids bickered all day and I eventually sent the two oldest outside to pull all the dead plants out of the garden. That way, I didn't have to listen to them fight and they got something helpful accomplished. I had not gotten much sleep the night before and I was just flat out tired all day & evening. I completely spaced going to the church activity that night and realized at 11:00 that night that I had forgotten about it. It was a service project making "angel boxes" for mothers who don't get to bring their babies home from the hospital and I really wanted to go. I had a pretty fussy baby that evening though so I probably wouldn't have been much help anyway. She and I ended up snuggling on the couch and once she fell asleep, I didn't dare move.

(and yes, I know I look tired)

Friday is movie day. One of the theater chains here does a summer movie deal where you can get tickets to 10 rerun kids' movies for $7 per person, so you get to go to one movie a week all summer long. It's a great deal and gets us out of the house and into somebody else's air conditioning. :) The kids have seen most of the movies already but they don't care, and I've only seen one of them so it's nice for me to see a lot of new-to-me movies. I have to admit that I was a bit scared of the idea of taking 5 kids to the movies by myself, but so far it's gone just fine. Our kids love movies so they sit through them pretty well. Even Raya does well. The only part she has a hard time with is right before the movie starts when they're doing the Dolby Digital sound thing and it's really loud. She puts her hands over her ears all the way through it but after the movie starts, she's fine. We were early yesterday so we had our pick of seats in the whole theater and had some time to just sit and relax before it started.
Raya's other favorite thing about the movie theater is that because it's dark, she can check out her glow-in-the-dark G tube:

I spent the rest of today letting the kids run amok while I cooked. I took dinner to a friend that just had a baby, and also had the missionaries over for dinner, so I actually put forth effort and made some good food. :) My friend Brooke and her daughter stopped by for a visit so Brooke could love on Piper for a bit. Piper is starting to let out a giggle here and there now, which of course is adorable. :)

I was pretty excited that I actually pulled off having dinner cooked & ready to deliver at the time I had wanted to deliver it. That doesn't always happen. It tasted good too, which is always a good thing. We dropped off the food and then came home and got things ready for the sister missionaries to come over. Since Donny and the big kids were at karate, it was just me and the two little girls at home and Raya wasn't feeling like eating dinner so she just watched Frozen and played while we ate and talked. After dinner, they shared a very sweet little message with us that was really geared towards Raya. Over dinner, they had asked me about Raya and I had given them the Reader's Digest version of her medical life. People are always curious about how and why a 4 year old can go without eating, and I'm always happy to explain.

Anyway, I was very touched by their message. It was all about how Jesus died for all of us because he loves us, and that through the Atonement, He felt the pain of everything we experience in life. I had not really elaborated on the fact that Raya is in pain a lot of the time when I was explaining her conditions to them, and I had to hold back tears when they were explaining to my sweet, wiggly 4 year old that Jesus knows exactly how she feels whenever she's sad, scared, upset, or when her tummy hurts and she doesn't feel good. I'm sure anyone could have deduced from our conversation that pain is a frequent part of Raya's life, but I know they were inspired to say that to her. I have learned over the years to never underestimate what a young child learns from lessons at church or at home about the gospel of Jesus Christ, and I know that even if she doesn't remember that exact conversation with the missionaries in the future, they have planted in her mind that Jesus knows how she feels when she is hurting. It was a good reminder for me too.
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