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Tuesday, September 30, 2014

Raya's GJ tube change

Yesterday, we had an unscheduled visit to the hospital. Friday afternoon at 4:45pm, Raya's GJ tube got caught on something and part of the J port broke.
Because a GJ tube has one port that opens into the stomach and another long tube that goes through the stomach and rests in the small intestine, it needs to be placed by an interventional radiologist. At our hospital, the IR department is closed in the evenings and on weekends, so we couldn't do anything but tape it together Friday night and pray that it got us through the weekend (which it did, thank heavens). I was able to catch the GI nurse and she faxed over the order to have it changed, and told me to call IR first thing Monday morning.

I called IR at 7:50 Monday morning and since I assumed they would probably squeeze us in sometime in the afternoon, I took Raya to school as usual. I was 2 steps from the front door of the school when the hospital's phone number popped up on my phone. After a 2 minute conversation, it was agreed that we would go in as soon as we could get there. I had signed Raya into class at 8:20 and I signed her out at 8:30. She was NOT happy with me. When I walked into her classroom and told her it was time to go get her tube changed, she said, "Well, Mommy, that just wasn't very long!" I suppose it's good that she likes school that much. She was also not happy that we were going to the hospital.

Anyone who has ever met Raya knows what a chatterbox she is. In the car, she normally splits her time between talking and singing, but she is rarely quiet in the car. Except when we're driving to the hospital. I knew she was having major anxiety because she did not make a peep during the entire 45 minute drive. The two times that I tried to get her to talk, she was so quiet that I couldn't hear what she said. She sat in her car seat and hugged her blanket. I looked in the rear view mirror about 10 minutes before we got to the hospital and she had fallen asleep, which NEVER happens anymore, and certainly not at 9 or 10 in the morning. We found a spot in the corner of the second floor and then found out that the parking garage elevators were broken, so our choices were to take the stairs or walk down the car ramp. Thankfully, a very kind gentleman offered to help me carry her new but very heavy stroller down the 2 flights of stairs.

Once we got inside, we checked in and then waited to be called. Raya sat quietly in her comfy stroller, hugging her blanket and laying her head against the side of the stroller. Her eyebrows were furrowed and she looked pale and nauseated. I got my phone out to text someone and she thought I was taking a picture, so she smiled. Then I HAD to take her picture. I posted it to social media with the caption "This is what brave looks like." What my friends & family couldn't see was that in between the smiles she put on for the camera, her face was full of concern. She was stressed out and there was nothing I could do to fix that for her. She sat in her stroller, clutching her box of toys she brought with her and staring off into space. She did relax a bit when she saw a girl a little older than her wearing a plastic tiara and a Supergirl shirt in the admitting area. It was enough of a distraction for her to get out and play with her toys for a few minutes.

We got called back up to the desk so I could sign paperwork, and then found out that IR had flooded during the storm we had Saturday afternoon, so we were sent up to the surgical floor instead. We found our way to the surgical waiting room and waited some more. She had no interest in anyone or anything around us, and found solace in watching the Disney channel from the comfort of her stroller, covered up with her precious pink blanket.

I tried to get her to take selfies with me but she wouldn't take her eyes off the tv.

When it was our turn, Raya got her measurements & vitals taken and was very cooperative throughout that process. It's something she's done hundreds of times and thankfully, she rarely ever makes it difficult. The only trouble she has is holding still enough for the automatic BP cuffs. This time, she was anxious enough to stay still and they got it on the first try. She got to pick a beanie baby from the bucket and we got her changed into a gown so we could wait some more.

Raya is usually very sociable with adults. She rarely has any qualms about talking to people, but the hospital is an exception. She would not talk to anyone and would barely even talk to me. She wouldn't even look at anyone but me, and if there was anyone else in the room, she wouldn't even talk to me. All of the nurses, doctors, PCTs, and child life specialists that came in her pre-op room said hello to her and tried to talk to her, but she didn't want anything to do with anyone. Most of the time, she stayed curled up in a little ball, hugging her new bear.

I know she looks like she's sleeping in this next picture, but she's not. That was what her face looked like most of the time. It's a mixture of fear, frustration, boredom, and stress. She did NOT want to be there.

The nurse brought her a portable DVD player with Despicable Me in it. Later, a child life specialist brought in a huge case of DVDs so she could pick something else if she wanted to, but she wouldn't even answer when we asked her if she wanted to keep watching Despicable Me or pick something else. I finally told her she could just point if she didn't want to talk, so she pointed at the DVD player. I considered that a win.

We had a visit from the anesthesiologist to go over what drugs we had used before that had worked well for her, and from the radiologist that was going to be placing the tube. I probably drove him nuts by the time we left because I had so many questions for him. For whatever reason, Raya's 14fr 1.7cm GJ tube seemed much longer than her 16fr 1.7cm G tube had looked. He said that he would take a look and decide if a 1.7 or 1.5 would be best for her and put in whichever seemed like the best fit. I also asked him to go back to a 16fr if they had one in stock, because her stoma has leaked more since she got the GJ in July than it had in a very long time. My last request was that he save the old tube for me. For the past month, I have been fighting a clog in the J tube. Every morning, I would have to push seltzer water in order to get it cleared enough to flush well and feed. I haven't been able to get her meds through it for a couple of weeks now either. I had a mental image of something along the lines of the gunky pipes in a Drano commercial, so I wanted to see if her tube looked the way I imagined that it looked on the inside. He laughed and said he could put it in a bag for me.

I gave her the dose of her sleepy medicine that we had agreed would be a good thing for her, and then we waited about 15 more minutes until the nurses were ready to take her back to the OR. {for clarification, this wasn't an actual surgery, they just had to use the OR since IR was flooded. no cutting required since it was just taking the old tube out and putting a new one in} When the nurses came in, I got all of our stuff gathered up and put it in her stroller and the nurses started to move her bed out the door. That was when she started to panic. She was getting sleepy at that point because of the medicine she'd had, and she was all tucked in under her blanket, so she didn't move much other than to reach for me. Once I got out into the hallway, I gave her a hug and kiss and told her I'd be waiting for her when she woke up from her "hospital nap". (She had asked me about 10 times if we were sleeping at the hospital, meaning being admitted, so I reassured her over and over again that she was just going to take a hospital nap but we weren't sleeping there at night.)

Nothing makes you feel like a horrible person quite the way that hearing your scared child scream for you as she's wheeled off to the OR does. I was thankful that yesterday was one of those days where I'm feeling callous to it all because otherwise I would have burst into tears. It helps when you know they're just changing a feeding tube too, and not doing anything more invasive. (just manipulating a tube into her intestine...) It's still pretty awful to know that she's scared and just wants me to be with her, and I can't.

I had some time to kill in the waiting room so I started reading a fabulous book called Complete Tubefeeding, by the late Eric Aadhaar O'Gorman. It is surprisingly entertaining considering the subject matter. My reading was interrupted by the ringing (or vibrating) of my cell phone. I don't normally answer my phone while I'm at the hospital or doctor's office, but it was an out-of-state number so I figured it was either a telemarketer that I could get off the phone with quickly, or it was something important. It turned out to be the latter of the two. It was the gastroenterology department from the hospital we will be doing motility testing at, calling me to schedule Raya's tests. I wasn't expecting the call, and certainly not right at that moment, so I wrote down what the lady told me and then later thought of about a hundred questions I need to ask, so I will have to call them back.

It felt like it took forever for her to get finished. The radiologist came back out to talk to me and said that the J port that I had thought was partially clogged was actually kinked inside her stomach, and that's why I couldn't get anything to go through it. I'm not sure if that makes me feel better or worse because either way, clog or kink, it is potentially my fault. I was glad to hear that it wasn't full of gunk though. He also answered a few more questions and explained a few more things to me about why they don't use the new 16fr AMT G-Jet button, and only stock a 14fr. I'm not really in agreement with their logic & reasoning on things, but at least now I understand why they do what they do.

A few minutes later, the volunteer at the desk took me back to PACU where she was sleeping off the anesthesia. It's always a bit surreal to see her like that. I'm used to it. I've seen it a lot, but it's still not normal or natural. I don't usually share pictures of her post-anesthesia, but this is part of our reality:

From that point on, all we did was wait for her to wake up. We always try to let her sleep as long as she can so that she wakes up more gently. She slept for about an hour after her procedure. She is so sweet when she's sleeping, even if it is post-anesthesia.

When she woke up, she was still not really coherent but she was alert enough to know that she wanted to get dressed and go home NOW. The nurse took out her IV and took off the BP cuff and pulse ox probe and I got her floppy limbs wrangled into her clothes. We were both very grateful for her new medical stroller when it was time to go. It is much more supportive and comfortable for her than our other stroller, which she is starting to outgrow. The stroller we've been using is great, but she's getting big enough that when I recline her all the way back and she's curled up in it (either because she's stressed out at an appointment or post-anesthesia/tired) I'm afraid it's going to tip backwards. The new one definitely won't do that. Thankfully when we came out of the hospital at 3:00, one of the elevators was working so I didn't have to push her up the car ramp to get to the second floor of the parking garage.

By that point, it had been about 6 hours since I had pumped last, so we sat in the car in the parking garage for a while so I could pump. By the time we had driven through a place where I could get food and a much needed caffeinated beverage, picked up Piper, and driven through another place where Raya could get fries, it was 5:00. Raya slept most of the way home and was really out of it, thanks to the IV anti-nausea meds and the anesthesia drugs. My very sweet neighbor had let the kids come over after they got home from school and was making enough dinner to feed her kids and mine, so I loaded Raya up in her stroller again and we headed down to the neighbor's house. I brought the kids home at bedtime and then put my pajama pants on and went to the grocery store, in that order.

Raya was exhausted and not feeling great the rest of the night but she woke up happy and rested this morning and wanted to have a dance party.

She was as sweet and delightful as could be. After the big kids left for school, I started sweeping the floors and she decided to go get the small broom & dustpan so she could help me.

After that, I gave her the morning doses of her meds and then started her pump, and within 10 minutes she was a crabby, mood swingy mess for the rest of the day. To make a long story short, we think the J portion of her tube may not be in the right position. Hopefully we will hear back from her GI office soon so we can get an x-ray to check placement.

Friday, September 26, 2014

It was nice while it lasted

Well, if I had any lingering doubts about whether or not Raya was on her way back down motility-wise, they were erased by the sounds of her vomiting at 5:30 this morning. We've seen clear changes in her mood (i.e. mood swings, bursts of high energy followed by the need to lay down and rest, crabbiness, etc.), changes in her sleep patterns and waking up at night again, major decrease in appetite, difficulty swallowing, less verbalization, increased sensitivity to sound and light, decreased attention span, and just overall not as happy as she was during those 2 really nice weeks she had earlier this month.

Last night, I gave her the evening dose of one of her meds and her sleepy medicine and then sent her to bed. As she was leaving the kitchen, she put her hands on her belly and asked for a Farrell bag. I was in the middle of about 10 things so I told her I'd connect one to her stomach later. As is often the case, unfortunately, I forgot, so I felt really awful when I heard her throwing up. Being the early riser that he is, Cole woke up when she started puking and ran out in the living room to find me. (I was on the couch with Piper.) I put Piper in her bed and went in to see how Raya was doing.

Since it was dark still, I didn't see the puddle that had run onto the carpet from the tarp that's under her bed so I stepped in it. She was pretty much done by the time I came in and was just dry heaving at that point, so I sent Cole to the laundry room to bring us some dirty towels to clean up with. Her bed was damp with pee because she had to get extra fluids overnight last night and there is just no diaper that can contain it all. It was only 5:30 though and I wanted her to go back to sleep, so I plugged in a Farrell bag to her G port, changed her pull-up, threw a blanket over the pee, and covered her back up with another blanket. Nobody went back to sleep though. Cole and Kaida were in the kitchen at 5:55 and Raya showed up happy and smiling about 15 minutes later. She was feeling great by then and had even unplugged the Farrell bag from her button. When I looked at the Farrell bag, it had recognizable remnants of the 4 or 5 pinto beans she had eaten for dinner last night in it. Bummer. Yesterday, there were specks of 12 hour old Nexium in the bag I drained her stomach into. It is never a good sign to see something come out that went in 12 hours earlier.

I didn't want to do meds in her stomach in case she threw up or needed the Farrell bag plugged in again, so I tried to get them to go through her partially clogged J port. After a flush with "magic water" (seltzer), an accidental spraying of medicine all over the floor, and another flush of magic water, I got the first med through and then started to push the Nexium, which I knew was a terrible idea before I even did it. The Nexium we use comes in foil packets. It's a powder that we mix with water, suck into a syringe, and push through the tube. The problem is that it starts to thicken as soon as you mix it. Trying to push thick, viscous Nexium through a partially clogged J tube (picture a clogged artery or drain pipe with gunk built up on the insides) with a 35ml syringe was wishful thinking at best. I think I got about 1/3 of it in before the syringe plunger wouldn't budge anymore. Thankfully, the magic water cleared it enough that the formula would run through it.

I didn't want to waste the rest of the dose of Nexium so I put it in her stomach. Unfortunately, having to work to clear the J port made her belly hurt and made her feel like she was going to puke, so she wanted the Farrell bag back on. That would have meant losing the Nexium and whatever water she'd be drinking at school, so I decided to give her a placebo of sorts. I plugged her Farrell bag in but I left one of the clamps closed, and told her teacher that she could unclamp it later if Raya seemed uncomfortable or pukey.

When I went to pick her up from school, I couldn't believe how sweaty she was. It's been a little muggy today but none of the other kids were even close to how she looked. When she walked out the classroom door, I said, "Holy moly, girlfriend, you're really sweaty!" She giggled and her teacher looked at me with wide eyes and said, "And this is after I made her stay in the shade the whole time and didn't let her run around!"

Her arms were sticky and clammy and she was just gross. We went home and fed Piper some lunch and the girls took a bath. We were almost late for Raya's appointment with the ENT because she knew she was going to the doctor and decided she'd rather stay in the nice, warm bathtub instead. It wasn't pretty but I got her out and dressed for her appointment and we got there with about 10 minutes to spare. As I was getting the stroller out of the car for Piper, I noticed this license plate across from us in the parking garage:
It says Dr. Cute. I got a good laugh out of that.

She brought her pink blanket with her and that made her feel a lot better than she usually does. She really did not want to go to this appointment no matter how many different ways I tried to explain that the doctor only wanted to help her feel better. She's no dummy and she knows that some of these appointments just suck. She was pretty happy while we waited but she did ask me to plug her Farrell bag back in. I was glad that I did because it instantly started draining, first pale green and then bright yellow bile. That's a sign that she's having a bad motility day, and it hasn't been that bad since shortly after she got the tube put in back in July.
And thank heavens for Piper being such an easygoing, laid back baby. She may not have started out that way but she has done so well at most of Raya's appointments in the last couple months. As long as she has a clean diaper, a full tummy, and her soft blankie, she's a happy girl.

This was Raya's first visit to the ENT. I don't know why we never thought to add an ENT to the mix sooner, but I'm really glad we've got him on board now. He is just as wonderful as all of the local moms told me. The GI's office had faxed over about an inch thick stack of records to him either yesterday afternoon or this morning, and he had actually gone through them before he came in to see us. The reason I decided to take her to him is that she's been doing this awful throat clearing for probably 3 or 4 months now, and nobody can figure out why. We've tried adding allergy meds in case it was postnasal drip, and we've tried different combos of reflux meds, and didn't really feel like any of that changed anything. He asked if I was willing to let him try to get a look at her throat by putting a fiber optic camera in through her nose & down into her throat. I knew it wouldn't be pleasant but we were there and had the time to do it so we did it. He explained to her that he was going to put a special telescope in her nose and look at her throat and that it would feel kind of yucky but that it would help him see why her throat was bothering her. She didn't want him to do it and covered up her nostrils with her thumbs, but her reaction wasn't as bad as I thought and I could tell that she was trying to be brave, so we went with it. She got pretty nervous while we waited for him and the medical assistant to come back.

The procedure was not fun but we got it done. I sat on the chair and she sat on my lap. I wrapped her up in her blanket but let her have her hands out so she didn't feel trapped. The MA held her head back against my chest and I bear hugged her but had her hold my hands. She wiggled and screamed and cried but once the camera was in, she held still. He got a nice look at her vocal cords and her throat. He said that structurally, everything looked great and her larynx looks good. There's cobblestoning in her throat (i.e. it's bumpy and irritated) and the tissue around her larynx is inflamed, so the throat clearing is happening for a reason and not just out of habit. He couldn't tell what the cause of the irritation was, but it was really REALLY nice to have visual confirmation that there is something wrong with her throat instead of just guessing. Hallelujah, visible evidence of something.

So the possible causes are 1. reflux, 2. nasal/sinus congestion causing postnasal drip (which he didn't see but did say that she had some nasal congestion, even though there were no outward signs of it) and 3. allergic inflammation of some kind (like eosinophilic esophagitis, which we've never 100% ruled out but have never seen evidence of). Now all we have to do is figure out which of the 3 it is. Ha ha. Simple as that. In all seriousness though, I am really happy to have had him look in her throat and see what he saw, and I'm really happy that he wants to collaborate with our GI and allergist to try and come up with ideas and/or a plan. He said that he didn't see anything that made him feel like it would be worth having him put her under to take a deeper look unless she was going to be put under anesthesia for another procedure that he could just jump in on. I'm thinking it may be time for another EGD. Her last endoscopy was quite a while ago, and we've introduced a lot of foods since then, so it may be worth a shot. I'm not getting too excited but I'm feeling more hopeful than I have in a while that we might find a way to make her more comfortable.

The unfortunate thing is that if it is reflux that's causing the irritation in her throat, then it may be time to take another look at doing a fundo in order to prevent long term damage. We've done so many other things to try and prevent having to do a fundo, and she is not a good candidate for it due to her gastroparesis, but having GERD that is not controlled can lead to more serious conditions, so it's something we may have to consider. If we did do a fundo, we would probably have to do a pyloroplasty too. (FYI, a fundo, aka Nissen fundoplication, is a surgery where the top of the stomach is wrapped around the lower end of the esophagus to make the sphincter tighter so that stomach contents can't reenter the esophagus. Pyloroplasty is a surgery that cuts into the muscles between the stomach & small intestine to make the stomach empty more rapidly. It would be necessary if we did the fundo because the fundo would prevent vomiting and her stomach empties too slowly so she'd feel horrible if she couldn't vomit.) But we're not getting ahead of ourselves here. We would have to have good, solid evidence that the fundo was necessary before going through with it.

After the ENT looked in her throat, she curled up in my lap and kept crying for a few minutes but we all told her over and over again how great she did and how tough she was, and acknowledged how yucky it must have felt, which I think is very important. Within about 5 minutes, she was walking around playing with Piper and climbing all over the stroller again, and happy. She wouldn't talk to the doctor anymore but she accepted the sticker he gave her.

As if that wasn't enough fun for one day, Raya's GJ tube broke. At 4:45. On a Friday afternoon. We were getting ready to go to the church for an activity, and I told her to get her shoes on while I went to the bathroom. As soon as I closed the door, I could hear her yelling to me. I yelled back that I was going potty but I couldn't tell what she was saying. When I walked out into the kitchen, she came down the hallway holding the extension tube from her J port. She had an "uh oh, I'm in trouble" look on her face. When I got closer, I realized that it wasn't just the extension tube. The plastic ring that locks the extension tube into place had popped out of the J port.

{Here's a little review of what a GJ tube looks like on the inside. This is a different brand than what she currently has but it works the same way. The jejunal portion is what has gunky buildup in it that's making it hard to get anything through it.}

I asked her how it happened but I couldn't make sense of what she was telling me. It has taken quite a beating lately with the J being partially clogged. I've had to do a lot of flushes that were hard to get in so it's had more pressure on it than it's probably supposed to. I took the little ring off of the extension tube and popped it back in, but it's not going to hold out for very long. In fact, it fell out again during the practice for the program the kids will be doing at church on Sunday. She was standing there singing her little heart out and I suddenly realized that her shirt was soaked. It had popped out again and was leaking formula everywhere. Oops.

She was also soaked in sweat again by the time we got home so she had another shower and some sleepy medicine to help her bring her back down from the walls she was bouncing off of. Once she was calm and relaxed and could hold still for me, I taped the heck out of her tube to keep the extension from coming out so she can keep getting fed.

I also had to plug the Farrell bag back in because she was feeling really lousy by then. She's been asleep on the couch for about 3 hours and is pretty much sleeping sitting up. She's already woken up once and the Farrell bag is filling up with clear yellowish-greenish bile. She asked for a puke bag when I went to check on her. (well, she nodded her head yes when I asked her if she needed one) I don't know how long the J port will hold out without leaking. If it wasn't partially clogged, it wouldn't be a problem having it work until Monday but without the J port being firmly attached, I don't know if we'll be able to flush the tube with enough force to clear the blockage enough to feed her & get meds in. 'Twill be an interesting weekend. I got a call back from the GI nurse at 5:10 and she said that IR should have time to change it on Monday. I'm supposed to call them first thing Monday morning and see if & when they can fit her in, and hopefully when they told her they could do it Monday, they were remembering that she has to do general anesthesia to get it in. Based on how she's feeling tonight and the condition the tube is in, I just hope we make it through the weekend without having to be admitted.

On a more positive note, I overheard the most ADORABLE conversation tonight. Before the kids practiced all the songs for their program, they had pizza for dinner. We knew they were serving pizza so I drove through Chick-fil-a on our way there and got Raya some fries so she could eat with her friends. The kids all sat down with their classes (they're divided by age) and the leaders handed out pizza. I got a plate and put a couple of fries on it and set it on her lap. She sat with her friends and they all chit-chatted away like 4 and 5 year olds do. I realized that her Farrell bag was still unclamped so I clamped it to keep the fries from clogging it. As I squatted down next to her and started messing with it, a couple of the little girls started looking closer at her backpack & tube and started asking questions about it. Without missing a beat, the little boy sitting next to her pointed at his stomach and said, "She just needs medicine in her stomach and that's how it gets in there." and went back to eating his pizza. The other kids were satisfied with that answer and went back to eating their pizza too. I think Raya said something about the backpack having her pump and formula in it but I was too busy having my heart melt over the darling little boy who doesn't find anything strange or gross about Raya having a hole in her stomach for medicine to go into. It's possible that his parents have talked to him about her feeding tube, but even if they have, he is obviously a sweet kid who looks at her and just sees his friend Raya. I get all misty thinking about it. As her mom, all I've ever wanted is for her to be accepted and loved, and I can't even explain how great it was to see how this whole feeding tube business is not a big deal to any of her friends. She's just Raya, their friend that wears a backpack and eats fries instead of pizza.

Tuesday, September 23, 2014

Could you do me a favor and be more like a car, please?

A week or two, I started to worry a little bit about my car. There wasn't anything particularly alarming going on while I was driving it, but it just felt a little off. I talked myself out of worrying by rationalizing the weird things that happened. I got used to some of them and started to feel like they were normal. I told myself that others were probably because of rain or that we were getting close to needing an oil change (and close to 100,000 miles), but really, I knew something was going on with it.

Over the weekend, the check engine light came on. It happened when I was coming out of the drive-thru at Chick-fil-a, after getting Raya some fries to eat at her friend's birthday party so that she wouldn't be sad when everyone else was eating pizza. I took my foot off of the brake and put it on the gas pedal and started to accelerate around a corner, and it acted strange and the engine light came on. From that point on, I'd put my foot on the gas to accelerate and we accelerated in very slow motion. When I got home, I called our wonderful mechanic and explained the problems to him. He gave me his theory about what the problem may have been, and we arranged a time to drop the car off to him.

The first thing he did when he started working on the car yesterday was "pull the codes". He connected a device to my car's computer and it gave him the codes for what had triggered the engine light. Based on those codes and what I had described to him, he knew exactly what was wrong with my car. He changed the 2 sensors that were not working properly, replaced the spark plugs, serviced the cooling system, changed the radiator hoses, and changed the oil. He is also awesome enough that he finished it all in one day and we were able to pick the car up last night. (yay for having my independence back!) It's running beautifully now.

When he called me yesterday to go over what he had found, I couldn't help but think that life would be so much easier if kids could be more like cars. When something is wrong or they're not feeling well, a light would come on and an alarm bell would ding. You'd plug in a little device and pull their codes, which would tell you what triggered the alarm, so you'd know exactly what was wrong. Then you could look in the owner's manual to see exactly how to fix the problems. (where is that blasted owner's manual anyway...) Buuuuuuuuut........

Kids aren't cars. Darn. There is nothing precise or exact about diagnosing or treating a medically complex child. If there is one thing that I wish I could have fully understood from the beginning of our journey with Raya, that would be it. I wish I could have understood, and I mean REALLY internalized, that it was going to be a long, arduous process. (loooooooooooong) I wish I could have understood that no amount of testing or trial and error would guarantee that we would ever have the answers we were looking for, and that with or without answers, there was no guarantee of "normal" ever being in our future.

I suppose if someone had tried to explain that to me in the beginning, I would have been angry at them for trying to squash my hope. That's not my objective here at all, and I hope that all parents whose children have feeding struggles, need feeding tubes, or have any type of medical struggles will never let go of the hope and belief that things will get better! My point is that if I had understood that this was going to be a long-term process over the course of several years, my outlook and expectations would have been different right from the beginning and I would have set my priorities accordingly. In the beginning, I thought that I knew where we were headed with this journey, but I now understand that the place I thought we were going may not be where we actually end up.

In the beginning, I thought that getting Raya to eat by mouth was the most important thing and that our ultimate goal was to get her off of the feeding tube. If I had known that there was a strong likelihood that it would take years rather than months to get her to a point of optimal health, I would have stopped stressing over getting her to eat and spent more time figuring out how to help her to not feel crappy. The reality is that those things will never peacefully coexist, so until one of them changes, the other never will. Obviously, I can't go back and change anything, but I am looking at things through a completely different lens than I did even a year or two ago. I think the biggest factor in that change within myself is acceptance. Acceptance makes it possible for me to let go of so many of the negative emotions that don't bring us any closer to positive changes in Raya's health.

I still have great hope and a strong belief that we will reach a point where we can remove the feeding tube, but the feeding tube is not the problem here, and it never has been. Yes, it can be a crutch and an enabler, but it is not the cause of her feeding difficulties. The tube is what has made it possible for her to survive and thrive while we have worked to figure out what was causing her pain & discomfort and how to help her feel good. If I could go back and try to help my 4 years ago self understand any one thing about tube feeding, that is what it would be. Until a child feels good and can eat safely (meaning no aspirating, no choking, no difficulty swallowing, no vomiting, no allergic or autoimmune reactions, no dumping, no diarrhea, no pain, no fear, etc.), there is no sense in stressing over when the tube can come out. That doesn't mean it never will, it just means there are a lot of things to work on first in order to get close enough to make tube removal the priority. We WILL get there, but it will happen when Raya's body and mind are in the right place for that to happen, and not on anyone else's time frame.

{Thank goodness cars are less complicated than children. }

Sunday, September 21, 2014

Weekly update


Last Sunday was our 13th anniversary. We celebrated Saturday night by going out to the same restaurant that we went to for our 1st anniversary. It's our favorite special occasion restaurant and we were SO excited to go there again. It had been way too long since we had been there! Since it was a special occasion, I even showered and put on makeup. :)
(we are very pale people)
Sunday after church, we went to Donny's parents' house for dinner to celebrate his mom's birthday. Raya has been doing SO well lately with being happy, keeping a more even mood, and eating food, and Sunday was no exception. She loves being around her cousins, aunts & uncles, and grandparents, and there was food that she was able to eat, so she was a very happy girl. She sat at the little table with Kaida and a couple of cousins and ate more food than she's probably ever eaten at a family gathering.

When all was said and done, she had eaten some slow cooked pork, a couple of big Fritos, some nibbles of a couple veggie straws, 6 pinto beans, and a bite of her special chocolate that I made her a while back to save for special occasions. She did great!

 Sunday night was kind of crazy between having to drive home (an hour) from the in-laws' house, doing all the usual Sunday night stuff, and then having company for the night. One of my dear friends was in town with her 3 year old and they stayed with us Sunday night and all day Monday.

Monday was pretty crazy too. The kids were at school, Donny was back to work after being off the week before, and I had to get my teeth cleaned. My house needed cleaned too and was getting to the point of driving me crazy but it just had to wait. Raya's respite provider was back after being sick all week last week, so Raya was excited to see her. It was just a hectic and stressful day though. The previous week had been so busy and the weekend had been really busy too, and I felt like I hadn't gotten a moment to breathe yet. I don't even remember what the kids ate for dinner. I dropped my friend off at her sister's house and then had to go to the grocery store. Bedtime was a blessed occasion Monday night.

I had a hard time getting myself going Tuesday morning. I did not get enough sleep Monday night to make up for how worn out I had gotten on the weekend & Monday so I was dragging on Tuesday. We did get to therapy on time though and Raya's feeding therapist was back in town from her vacation. I got a good laugh when we put Raya's lunch in the fridge before OT. I opened the fridge and saw this:

It made me chuckle and wonder what was going on at the clinic after work. If I was a drinker, there would have been many occasions on which feeding therapy sessions would have driven me to drink.

Raya had been doing so great with eating while Miss Heidi was gone on vacation that I was just crossing my fingers that she would still want to eat when she came back. The last appointment we had with her before she left on vacation was really bad. Raya had completely refused to do anything because she just didn't feel good. Then she suddenly started doing great, and now she's starting to trend back down a bit, so I was really hoping she'd do well for Heidi. She did actually do pretty well. She had refused to eat the potato she asked Donny to make her for breakfast, so we brought it with us. It turned out that she was just upset because she didn't think he had put enough butter on it. She likes to have a little bit of potato with her non-dairy margarine. She ate most of the potato and one grape and was happy the whole time, so that was good enough to make Miss Heidi happy.

 By the time we were done with OT, it had started raining a little, and it was raining at home when we got home. Raya really wanted to go play in the rain so I let her. It made her happy
Until she got her fingers muddy. Then she wanted to come inside and wash her hands.

Aaaaahhhhhh, Wednesday. It was a lovely day. Raya had school and the big kids had school and Piper took a nice nap, so I had the peaceful, quiet morning that I so desperately needed. It really was nice. I didn't accomplish much during that time but it gave me a chance to regroup.

Wednesday was my friend Danielle's funeral. Since we are from 2 different states that are very far apart, I couldn't go, but she was on my mind all day. In honor of her and her battle with digestive tract paralysis, as well as Raya's struggle with gastroparesis (one of the components of DTP), Raya wore a green shirt to school on Wednesday. She was having a bad stomach day that morning. I gave her the morning doses of her meds, and the next thing I knew, she was laying on the tile floor with a frowny face because she didn't feel good. I asked her how her stomach was feeling and this is what she told me. "Remember that other day that I throwed up at therapy? That's how my tummy feels." I was SO proud of her for verbalizing how she was feeling! I could pretty much tell that she wasn't feeling well but she has a hard time expressing how she's feeling, even though she can talk quite well, so I was really pleased to hear her tell me that she felt like vomiting. And also sad that she felt like vomiting. I asked her what she needed and if she needed to wear a Farrell bag to school, and she shook her head yes. We got out the little backpack she uses when she just needs a Farrell bag at school and snapped this picture:
You'd never guess she had been laying on the floor a few minutes earlier in pain and feeling like she was going to vomit. Her resilience amazes me.

My favorite day of the week is Thursday. We don't have to go anywhere or do anything on Thursdays. It's great. Raya decided she wanted to wash dishes for me, so I let her. Raya washing dishes pretty much amounts to playing with a sink full of syringes and bottle parts. They don't really come out much cleaner than they go in but it keeps her happy and doesn't involve electronics.

Thursday is the day that her respite provider comes to do habilitation with her. They work on things like eating lunch and using the toilet, and when the weather cools down enough, we will start going outside to work on community safety and some of her other hab goals. Raya asked for a potato with butter for lunch but only ended up eating a tiny bit of the butter and a nibble or two of the potato before she said her stomach hurt.

The rest of the day was kind of downhill for Raya. She got upset at dinner when I gave her the potato she hadn't eaten for lunch. When we warmed it up, the butter melted and she did not like that. She ended up accidentally spilling her cup of ice water onto her plate, which made her even more upset. It was not her worst dinnertime but it wasn't good.

I could tell that she wasn't feeling well. She went to bed that night but it ended our 2 week streak of Raya staying in her own bed all night. She slept through the night for some of those 2 weeks (probably most of it) but she did tell me a couple times that she woke up during the night but stayed in her bed. I was happy with that too! Anyway, Thursday night ended the streak when she came out to the couch during the night.

I had a nice day Friday too. Raya was feeling better Friday morning than she had been on Wednesday so she didn't have to wear a Farrell bag to school. I had another very peaceful morning and was able to do some studying & pondering that I really needed. I fed Piper a bowl of roasted spaghetti squash, carrots, and homemade turkey broth with a little bit of probiotics and coconut oil stirred in. She loves her food!
(don't worry, I never stepped away from her while she was in the chair)
Raya's really good streak seems to be winding down. She had been doing so well but for whatever reason, she was just worn out on Friday. Her ability to regulate her emotions went out the window and she spent a lot of the afternoon like this:

 I can't remember what she was even crying about but the reason she gave me changed 4 or 5 times in as many minutes. Thankfully, since her mood changed at the drop of a hat all day, she perked up when the big kids got home because she was so excited to tell them about the dentist visiting her school. Amusingly, they had also gotten cupcakes in her class for one of her friends' birthdays. She obviously couldn't have one of the cupcakes but I overheard her say to Cole, "Guess what, Bubba! I got a squirrel ring and I didn't even have to eat a cupcake!" The cupcakes had little plastic rings on them and the teacher washed them all off and gave them to the kids. She totally thought she had pulled something over on someone because she got a ring without even having to eat a cupcake. I love that girl!

Raya got to go to a birthday party for one of the little boys in her preschool class. It was the first birthday party she had ever gone to so she was pretty excited. It was at an indoor bounce place, so I figured she'd love it since she loves bouncing on the inflatable at therapy. Before we left, I told her that her friends were going to be eating pizza and birthday cake at the party and asked her if that was going to bother her. She said it wouldn't bother her, but the idea of her just sitting there while everybody else ate bothered me so I offered to get her some fries from Chick-Fil-A on the way there. She loved the idea, so we drove through and got her some fries. Between that and having some car trouble, we ended up being about 10 minutes late, so the other kids had already started the party.

The first thing she did when we walked into the very crowded, very noisy room was cover her ears. By the time I got her shoes off of her, disconnected her from her feeding pump, and got our things put into a little cubby, she had taken her hands off of her ears and was ready to play. She saw several of her friends playing on a huge slide in the corner, so she hurried over and climbed all the way to the top. Then she sat there. And sat there. And sat there. She thought about going down the slide, and then went back to try to climb down the way she came up. After about 10 minutes and several attempts to try to climb back down or convince herself to slide down, she finally made her way back down through the sea of kids trying to climb up. It was just a little too scary for her.

When she got down, we went and found her a different bouncer to play on that was less scary, and from then on, she had a great time. That one had a small slide in it and after she had gone down it a dozen times or so, we moved on to a different room where there was another HUGE slide. I didn't expect her to even climb to the top of that one, much less go down it, but she did it probably 4 times. Then she moved on to another one that had a curved slide on it. This is the only picture I got of her:

 She was soaked in sweat by the time it was time to move on to the next room for pizza & cake. She played hard while she was there, but so did a lot of the other kids and I didn't see any others that were flushed and sweaty like she was. She also didn't do much interacting with other kids, which fits with what her teacher said about how she is at school. Interestingly, during the 2-ish weeks that she was feeling good, her teacher said that she did initiate more interaction with the other kids than she usually does and spent less time clinging to the teacher & aide's legs during play time.

When the kids sat down at the tables, I put a couple of waffle fries on her plate and opened a thing of sauce for her to dip in. Her little friend was sitting next to her and when one of the party helpers asked the girl if she wanted pepperoni or cheese pizza, she turned to her mom and said, "I want fries." It made me laugh.
I breathed a sigh of relief when the cake came around and Raya was completely uninterested, both in the cake and in the fact that all of her friends were eating it. She didn't care one bit. It has not always been that way and I'm incredibly thankful that she has gotten to that point. In some ways, life is just easier when she doesn't care about food.

Once we got home, she was so crabby and emotional all afternoon. She cried at the drop of a hat about nothing. Based on how much energy she had used for playing, you would have thought she would have been worn out, but she got more and more wound up as the afternoon & evening went along. She was being really silly before bedtime. She came up to me while I was in the kitchen and said, "Look, Mommy! *ha ha ha* I'm measuring my head with my braids!" And she laughed and laughed and laughed. She has spent too much time at doctor appointments getting vitals taken and getting measured!


Sunday, September 14, 2014

A sad goodbye to a dear friend

borrowed from facebook ♥
About 2 1/2 years ago, I got an email in response to a blog post I had written. The email was from a sweet young lady named Danielle, who had some similar medical conditions to Raya's. Danielle was 24 years old and had been through some incredibly difficult struggles in her life. She was very open with me and with the world through her blog "Thriving Anyway" about her struggles early on in her teenage years with eating disorders, which led to gastroparesis. Combined with other chronic illnesses & conditions that she was diagnosed with along the way (Ehlers-Danlos, mitochondrial disease, autonomic autoimmune ganglionopathy, developmental disorders, and sensory processing disorder), she had the deck stacked against her in a big way, but she never let those things overtake who she really was.

From my first interactions with her, I knew Danielle was special and I felt a deep connection with her. I have not met many people as articulate, passionate, hopeful, and intelligent as Danielle. I have always felt like a pretty smart person but I admit that there were times when Danielle emailed me to tell me about her latest medical emergency, and I had to google some of the things she wrote about. I don't think too many twentysomethings can explain the importance of adequate albumin and prealbumin levels, or what happens when they dip too low, but Danielle could. She taught me what it means to take control of your life and medical care. No decision was taken lightly. She researched every treatment, every alternative, every option, and put a great deal of thought and prayer into every aspect of her medical care. After going down a dark road through her eating disorder journey, she had turned the corner and become fully invested in preserving everything she had left.

Danielle often told me that she looked up to me. Really though, I looked up to her. Although we never had the privilege of meeting in person, she became enamored with Raya through the stories I shared on my blog, and because of things she had been through in her life & childhood, she felt a connection to Raya and a kinship with her. I received many kind, heartfelt emails from her in response to blog posts I wrote on days when I was having a hard time with different aspects of Raya's care. She was always able to offer me insights from a different perspective, as someone who had been through many of those things herself. This summer, she wrote a blog post on her blog about "quiet heroes" and included a paragraph about Raya that warmed my heart and made me smile. (here's a link to that) Her emails always ended with things like "I always have little Raya in my prayers!" Even when she was struggling with miserable bowel obstructions or recovering from near-death septic infections, she was always thinking about other people and would tell me she was praying for me and Raya and our family.

As an adult with gastroparesis, Danielle was a wealth of information for me. We exchanged many emails about food, and how to work around gastroparesis. The limited amount of information that I have been able to get from Raya about how foods make her feel has always made it difficult for me to guess what to do next for her, but Danielle was able on many occasions to give me more of that firsthand insight into how Raya might be affected physically by eating certain things. She was able to offer advice and suggest foods that might work better for her than what we had tried, and I deeply appreciated that. We were also able to exchange experiences with formulas and various medical supplies, and ideas for "tubie hacks," meaning ways to use medical supplies creatively in order to meet our needs. She even sent Raya a cute new feeding pump backpack once because she said that she had felt the Holy Spirit tugging at her heart and wanted to do something special for Raya.

Beyond the simple sharing of information though, we shared each others joys and sadnesses. I was brought to tears many times by sweet messages she would send at just the right times, and I know that I was prompted by the spirit on many occasions to send her my love and support on her dark days too. She was a woman of faith, and she shared with me often the conversations she had with God, and what she felt His responses to her were. She was so kind in encouraging me to keep sharing Raya's story on my blog. After she had read one particular blog post, she wrote to me about how seeing a picture of Raya on a bad stomach night holding a Farrell bag that was full of her stomach contents had triggered a flood of emotion for her. This is what she said:

Brandis, I have to be honest with you. This wasn't a time that I could laugh. It very well could have been! Raya is all sorts of resilient, and there is just something very special about her...I cannot describe. But I just started weeping."
I really prayed about this last night but I still don't understand WHY this had me eruping in tears. I don't even think in that moment she even felt sick! But I don't want this to be her "new normal".
I am amused. As well as angry. If these peculiar subset of odd, inexplicable symptoms were to happen to any child, it would be strong willed and determined little Raya.
But it shouldn't have to be...
God is very interesting in the way he chooses to teach us life long lessons. And by that token, he also takes these weird high roads and SOMEHOW uses them to teach lessons not just to you, or your family, your friends or your church...
After the launching of the internet, all of us that have needed to see this: a mother and her human-ness, a little girl who again and again proves with tooth, nail, and claw that maybe just by the SHEER Grace of God that she will overcome anything that has been thrust in her way.
Maybe the tears began in the name of sadness...but I will tell you this: they ended in the name of victory."

And THAT is Danielle Nicole. The tone of that message was a common theme in all of the messages she sent me over the last 2 1/2 years.  A beautiful mind and incredible soul in a broken body. An encourager. A giver. An inspiration. A breath of fresh air. Although Danielle's fragile medical state in the past couple of years prevented her from doing many of the things she had once dreamed of doing, they did not break her spirit or her mind. It was nothing short of a miracle that even during the many times that her body started to shut down due to extreme malnutrition (a complication of her illnesses), her mind was still intact and she was still able to form her jumbled thoughts into eloquent works of art. One of her greatest dreams in life was to be an author, and she was a great one.

She emailed me early in August to share with me some very exciting progress she had made with eating orally and her overall health. She said that she hadn't told anyone outside her family yet but that she was feeling optimistic that things were turning a good way for her. Before I even had a chance to respond to her email, she sent me another message letting me know that she was sitting in the hospital at 4 am with an obstruction, and that she was heartbroken and devastated. She said, "I don't know how much longer I can keep doing the food trials. I try them over and over... But I'm stubborn and cannot believe this is my forever. I am not saying there is no hope after all. Far from that." As per her usual, she ended the message on a positive note and said, "But somehow everything is really OK in the end. I at least know, if nothing else at all, that much."

That was the last message I got from her. Her final blog post explained that she had come to a place of peace an acceptance that her body was failing her for good. It is a beautifully written post, and a perfect example of how Danielle was never a victim to her illnesses.  She stated, "I won the war. I am whole. I don't have to constantly fight against a body trying very hard to die while I insist I would like to stay a moment longer. I do not have to devote another second to research regarding my conditions, no longer in and out of clinic and hospital...
...this illness didn't take me, and it never could."

And it didn't. Danielle fought harder than I have seen anyone fight, and when she knew the fight was futile, SHE made the decision to stop fighting. Her fight ended this morning at the painfully young age of 27. My words will never do her justice. She has changed my life and I am eternally grateful for her. I will miss her dearly but I am grateful for all that she shared with me in the last couple of years.

I don't believe that the timing of Danielle's passing was a coincidence. Today happens to be the first day of Mitochondrial Disease Awareness Week. Despite its prevalence, most people are unfamiliar with mitochondrial disease (aka mito). The easiest way to explain mito is this. Mitochondria exist in nearly every cell in the body, and are responsible for generating most of the energy that each cell in the body needs in order to function. For individuals with mito, the mitochondria do not produce enough energy for the cells to function. If the cells don't function, the tissues made up of those cells can't function either. If the tissues don't function, the body systems can't carry out their functions. Mito can affect any and every system in the body. It is progressive and there is no cure. I don't know the statistics, but I know that mito takes the lives of far too many children and young adults every year. People like Danielle, who have so much to offer to the world and to those around them, but are taken from this world far too early. Mito needs to be researched so that treatments can be improved, which would preserve quality of life and save lives.

To learn more about mitochondrial disease, visit and 

Friday, September 12, 2014

No news is good news

I haven't updated in a while but it's because I didn't want to jinx anything. Raya has been feeling really good for about the last 10 days. When she feels good, it carries into every aspect of her life and everything is just better for her and easier for her (and for all of us).

Last Tuesday's therapy appointment went much better than the previous week's appointment. (the one where she puked because she was having major anxiety over knowing we were about to go in for a blood draw) She was a little reluctant and insisted on bringing her blanket and holding it while she did her therapy program, but she was cooperative and in a pretty good mood.
(her therapist asked her a question & she was trying to think of an answer)

Wednesday (9-3) was a pretty amazing day, and was the day that she really turned a corner. She went to school in underwear for the first time ever, and went the entire day from 8am to 7pm with no accidents. It was the first time she had ever worn them all day, and the first time she'd ever left the house for that long without a pull-up on. Potty training has been very difficult and slow going for her because of the digestive issues she has, but she her bowels first thing in the morning and only ever goes once a day so I decided to throw caution to the wind and it worked out great. Not only did she wear undies all day, but she also ate food 3 times that day. She hadn't really been eating at all since she got the GJ tube in July, so it was exciting to hear her ask for food again.

Thursday (9-4) was our visit with the sleep specialist. Raya had a lovely time playing with a little boy she met in the waiting room who shared his cars with her.

 It was not as helpful as I had hoped and was a bit disappointing, but the good news was that she handled the appointment really well. She didn't hide in the stroller like she often does (probably because I made her walk since she was feeling good that day, so Piper was in the stroller) and she was chatty and friendly to the doctor. She also made it difficult for him to understand how she was ever diagnosed with cerebral palsy, which he commented on more than once, but thankfully I was in a good frame of mind and found those comments to be mildly annoying instead of sending me into a defensive panic like usual. The gist of that appointment is that while pharmaceuticals can make just about anybody fall asleep, they can't make them stay asleep. She has problems with both of those things, so pretty much what he was saying is that we're lucky the meds we're using work for getting her to go to sleep but there's nothing he can do to make her stay asleep. He also said that a sleep study would not give us any insight into why she can't fall asleep or stay asleep, unless there is apnea involved. Because she sometimes snores, we are going to do a sleep study anyway. Eventually. If they ever call me to schedule it. I was glad that I had talked to some other moms about this doctor before we went there because his personality and style can be a little hard to take. Knowing what I was walking into before I went in made it MUCH easier for me to keep up with the flow of the appointment and be able to swallow what he was saying and not take anything personally. One thing that he said that I greatly appreciated was that he could see that we were really up against a wall when we decided to start Raya on sleep meds, and that he absolutely did not judge us for that decision. It's always good to hear things like that from a doctor.

Friday was another great day. She didn't wear a pull-up to school that day and did great with using the potty all day long. In the past week, she has eaten dinner with us, meaning the same food we're eating, 4 or 5 times. It kind of came out of nowhere but it's been great to have her feeling good and doing so well. I should clarify that when I say she ate dinner with us, I mean that she took small nibbles of whatever food we were having for dinner and swallowed most of what she put in her mouth. It probably totaled about a tablespoon each time, but that's a tablespoon more than what she's been having!

One night, we ate sweet Italian turkey sausage, cooked and sliced, with zucchini and mushrooms. We also had pasta so Raya had some of her quinoa pasta, and some pasta sauce that is okay for her. She asked for food but I admit that I didn't really expect that she would eat it. I know that sounds cynical but for my own mental and emotional health, I have to find a balance between hope and reality, and a large part of that is accepting that she doesn't eat. On that night though, she was ready for food. I cringed a bit when she kept eating more food because I was afraid it would come back to haunt her (and me) later that night but she was fine! She was absolutely delightful during dinner too. It was a running commentary peppered with movie quotes and belly laughter.

The next night, she ate pork loin (it was the most tender, juicy pork loin ever, if I don't say so myself) along with a few black beans, some corn, and a few pieces of raw onion. Yep, girlfriend ate raw onion and then even though she told me it hurt her mouth & throat, she picked up another chunk and ate it too. Equally as important as the fact that she ate was that she was happy while she ate, and seemed to really enjoy dinnertime with us. She likes eating the same food everybody else is eating, so I try to make things as Raya-friendly as possible, or at least have part of the meal that she can have.

This week has gone about as well as it possibly could have, considering how busy it has been. Monday was a wild day in Phoenix. This area got about half of the annual rainfall averages in 6-8 hours on Monday morning. I woke up at 2:00 and it was pouring outside, which is not unusual for this time of year. What WAS unusual was that when I got up 4 hours later, it was STILL pouring, and the standing water was rising everywhere. We are lucky that our area has been planned well and all of the retention basins and drainage systems did their jobs, but a lot of parts of the valley were not so lucky and had flooding that caused a lot of damage. All of the parks in our neighborhood filled up with water and looked like lakes. As a result, it's been hot & muggy all week but sometimes even that is a nice break from the usual dry heat.

Tuesday, Raya had OT but her feeding therapist was still out of town. There was still standing water everywhere so driving on certain roads was a pain. Later that night, we had the viewing for Raya's 102 year old great-grandfather, who passed away last Wednesday. It had been almost exactly 3 years since his sweet wife had passed away, and although we miss them both, it was sweet to think of them being reunited. They were married for 64 years when she passed away. The day of her viewing, Raya was going through withdrawals from a medication she had discontinued. It was a stark contrast to how good she felt the night of Grandpa's viewing, and we were grateful!

Wednesday was a LOOOOONG day but also a really good day. There was a viewing at 9 and the funeral was at 10, so we got there shortly after 9. (The amount of stuff we had to pack for the 2 youngest to leave the house for the day was rather ridiculous.) The funeral was about as nice as a funeral can possibly be. Grandpa & Grandma had 5 daughters, 30 grandchildren, and 83 (and counting) great-grandchildren. Including spouses (i.e. me & all the other in-laws) there are 160 people in my mother-in-law's family. Pretty incredible! Grandma was 92 when she passed away 3 years ago, and Grandpa turned 102 in April. This is one of my favorite pictures from his birthday party:

Although there were quite a few spouses and great-grandchildren missing from the funeral, there was only 1 of Donny's cousins that wasn't able to be there. It was a beautiful thing to see so many of Grandpa's family members gathered to celebrate his life. It was the largest family gathering we've had, and probably the largest one that will ever happen. It is always sad to see a loved one pass away, even if they have lived for 102 years. The loss of the family patriarch changes things, and it's sad knowing that the family won't ever be the same without him.

The funeral service was a beautiful tribute to him. Each of his daughters shared a portion of his life story. I think one of the favorite moments was when one of the aunts played a recording of Grandpa telling a story about his childhood. The faces of all of his grandchildren lit up when his voice filled the room. He was quite the storyteller. Another favorite moment was when all of the grandchildren & their spouses, and all of the great-grandchildren got up to sing his favorite song, "I Am a Child of God". Grandpa would have loved it! One of the sweetest memories I have of Grandpa was the morning that my sister passed away. She was in a car accident in the pre-dawn hours on a Sunday morning. It happened to be the same day that my niece was being blessed, so there was a family gathering at my in-laws' house after the baby blessing. Donny and I had not made it to the blessing after getting the news of my sister's death, so we met them at the house later. I don't remember what Grandpa said to me, but he gave me a hug and handed me a $50 bill. It was a kind gesture at a time when nobody really knew what to say or do, and I really appreciated it. I've joked that I'm pretty sure he never knew my name. He always just called me "Red" or "Ol' Red" and I loved it. :)

When the funeral service was over, we all got in our cars and drove 25 miles to the cemetery where they had bought burial plots back in 1951. They were planners. :) This was the first funeral I had ever been to where there were military honors, and it really added to the experience. It was a hot, muggy day and Raya was feeling it. Poor kid was soaked with sweat and pretty exhausted. She's also been really sensitive to light lately so she insisted on wearing her Hello Kitty sunglasses. I thought she looked adorable. :)

After the graveside service, we all went back to the church for a late lunch that was provided by Grandpa & Grandma's ward members. On the way back to the church, she let out a big sigh and said, "Why do we have to keep going all these places?! Can't we just go HOME?" Everybody was pretty worn out by then. She changed her tune when we got back to the church though. It happened that most of the food was okay for Raya to eat, so she shared a plate with me and was really excited about it. 
We had tostada shells with ground beef, beans, and salsa. Her favorite thing was the salsa. After I had finished eating, she ended up sitting down next to Donny's cousin & his wife and chatted them up while eating salsa with a spoon.

After everyone was finished eating, Raya helped stack the chairs. I guess she was craving some sensory input in the form of heavy work by then because that was one of her favorite activities of the day.

 When things were all cleaned up, we said our goodbyes to the out-of-town cousins and headed home. For a couple hours. Then we all loaded up and went to our oldest nephew's JV football game. It blows my mind that he's old enough to be a sophomore in high school but it was really fun watching him play. Most of the kids enjoyed the game too. Kaida was a little bored and asked at the end of the 1st quarter if it was almost over, but other than that it went well. The weather had cooled a bit by then too and it was a nice evening for football. Raya was zapped by then and I think any other kid would have been passed out before the game was over. She would have if her mind & body would let her!
It was after 10pm when we got home, and all the kids were in desperate need of showers. They were all in bed around 10:30, which is pretty late for kids who usually go to bed between 7 and 7:30. Everybody was exhausted the next morning and I was glad Raya didn't have to go to school. Piper slept most of the day with occasional food breaks, and everybody went to bed early Thursday night.

OOH, and speaking of sleep, that has been another huge development in the past week. Raya has slept through the night for several nights in a row. She hasn't even gotten out of bed to bring me her beeping pump in the middle of the night! It has been awesome for her and for me. (well, except that I'm still pumping & bottle feeding breastmilk for Piper so I'm still up, but it's a huge improvement!)

I wish I could pinpoint something we did that caused her to turn this corner but I really don't know. She got over the cold she'd had for the couple of weeks before, and I know that helped. My only other theory is that the J portion of her GJ tube has settled into a comfortable position in her intestine and she's finally feeling good. Feeling good leads to better sleep, which leads to a happier, more cooperative, more focused child, and feeling good also leads to eating. I cringe every time I flush her J port because it is still very sluggish and even flushing with "magic water" (i.e. seltzer water) doesn't completely clear it, but I am hoping & praying that it will hold out as long as possible so that we can keep her feeling good.

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