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Our trip to CHLA

It's amazing how much I have to say about something that only took 3 days. I have preliminary results but I haven't gotten the final report from the motility specialist yet so I'll save that part for another post. This post will be the story part and the nitty-gritty stuff will come later. :)

Our trip started at 4:00 Tuesday morning when I dragged myself out of bed to pump one more time before leaving. (Thank goodness for a baby that takes bottles!) Speaking of bottles, I chugged a bottle of this on the way to the airport:
I'm not much of a soda drinker and I normally pace myself but I was pretty sure that the TSA would not agree with me about Mtn Dew being a medically necessary liquid. It totally is.

We had checked in online and printed our boarding passes, and we weren't checking any bags, so we went straight to the security checkpoint. I hadn't connected her to the feeding pump yet so that made it really easy to get through security with all of our liquids. They were very kind to us and made it really easy for us. They inspected her medical stroller by hand since it was too big to go through the x-ray machine, and while they did that, I went through the liquids with the TSA agent. Since we hadn't set off the metal detector, I was able to touch our things. (not the case on the way home) She said we would need to take the pump bag out of the backpack and put it into their machine but I offered to open it and let her hold the little strip of paper over it to do the vapor test instead, and that was MUCH faster and easier for both of us. They visually inspected the 2 bottles of liquid medication but didn't have to do anything else with them, and our ice packs were frozen solid so they didn't count as liquids. Piece-o-cake. Raya is cute and charming at 5am so they gave her stickers and told her how cute she was. She loved the attention, of course. :)

We made it to the gate pretty fast so we had time to get a gate check pass for the stroller (which they technically considered a wheelchair) and they also gave us a pass to preboard. That was MUCH appreciated and needed. Everyone in Phoenix was very nice! Raya was just a teensy bit excited about getting on the plane:

We got onto the plane and that was when I realized that she had soaked through her pull-up (thank you, overnight feed) and her pants were wet so we made a quick pit stop in the bathroom. And of course, we had to take an airplane bathroom selfie:

Once we got back to our seats and got all settled in for the flight, I got out her special surprise. Last week, we had made 10 Tubie Friends and donated them to our GI clinic. Build-A-Bear was having a great sale when I bought them so I got Raya one too. I thought it would be nice for her to have something to snuggle on our trip. I had also gotten a $10 gift card for $5 as part of the sale, so we went to BAB last week and I let her pick out an outfit for "a very special little girl who needs a pretty outfit for her Hello Kitty." I just didn't tell her who the little girl was. :) Needless to say, she was really excited about her new "Hella Kitty" when I pulled it out of her backpack.

We sat near the front of the plane, and since we were some of the first people onto the plane, we watched a LOT of people get on. As the plane was filling up, Raya said, "Wow, there's a lot of people that have to go to this doctor!" Apparently she thought everyone on our flight was going to LA to see a motility specialist like she was. :)

Taking off was about the most exciting thing that's ever happened to her. She thought it was HILARIOUS. When the flight attendant brought me my juice and a cup of ice, I gave the cup of ice to Raya. She looked at me and got a big smile on her face and said, "What?! They have my favorite snack on this plane!!" When I asked her if she wanted to have the baggie of Kix I had brought for her, she said, "No thank you. I just don't want to get the Kick taste in my mouth right now."

Getting up for a 6:45am flight is not the most fun thing to do but nothing beats watching the sunrise from an airplane. It was beautiful!
We had packed just enough things to do to get us through the flight. She was in a fabulous mood and kept herself entertained until it was time to land.
It was bright and sunny until the plane started descending and dropped below the clouds. Then it was rainy, gloomy, and gray. We landed at 7:15 am and made our way to the bus stop to catch a bus to the next leg of the trip. While we waited, she insisted on putting her hood on even though we were in a covered area because it was raining.
We got everything loaded into the bus and then got ourselves situated for the bus ride, which ended up being longer than the plane ride. Traffic was bad (according to the driver) and the wet, rainy weather made it worse. The driver was very nice and gave me instructions on how to find where we needed to go next once we got to the train station, and which stop to get off at in order to find the hospital. His help was much appreciated!
When we got off the bus at the train station, the rain was coming down in a steady drizzle. It wasn't quite like the Arizona rain we are used to. Our rain comes down in heavy, fat droplets that you can feel when they hit you. These raindrops were small and sneaky. We didn't realize how fast we were getting soaked but we were soaked! There was a very nice lady that had been sitting near us on the bus and overheard the conversation with the driver about getting to the hospital. She kindly offered to help us get on the right train so that we could get where we needed to go. Raya was pretty excited to ride an airplane, a bus, AND a subway train all in the same day! Well, she was excited until she smelled the first elevator. Elevators in subways serve a dual purpose as toilets, as it turns out. She will probably plug her nose in elevators for a very long time. It took us 4 or 5 elevators to get from the sidewalk down to the subway platform and back up again, so the smell is quite etched in her memory. *gag*  (we are not city people)
She seemed to enjoy the train ride but I think some of it was a bit nauseating for her. About halfway from the train station to the hospital, I realized we were missing the large rolling backpack I had packed all of MY stuff in. To make a long story short, we did get it back later that day. It was nothing short of a miracle and it is a story for another blog post where I can do it justice.

Losing the bag caused a bit of a delay but we finally made it to CHLA at 11:00 that morning. I was feeling quite down and dejected by the time we got up to her room as I kept remembering everything I had packed in the lost bag. We walked into her room and saw that Santa had just visited and had left her a Hello Kitty jewelry kit on her bed. *cue the Mommy tears*
We got her weighed and measured and did her first set of vitals, and then got her changed into her hospital clothes. She thought it was neat that this hospital had "tiger pants and tiger shirts" instead of the gowns our hospital has. After all of that was done and we had learned to operate the fancy schmancy TV, I got word that my bag was waiting for me at the train station. I put on a movie for her and went back as quickly as I could to get my bag.
I was gone for just about an hour, and she was in exactly the same spot when I got back that she had been in when I left. Whew. It was a HUGE relief to have it back (even in spite of the $40 that was missing) and I said many prayers of thanks on the train ride back to the hospital. It really is a cool story.

There wasn't much to do the first day. When the weather cleared a little, I pulled up the shade and realized that we had a fabulous view from our room on the 6th floor. I am not familiar with Los Angeles geography and didn't realize how close the hospital is to Hollywood but we could see the Hollywood sign from our room. It looks farther away in the crappy cell phone picture than it actually looked from her room but now I understand why people say it's not as exciting in real life as it is on TV. :) It was cool to see it though. We had a beautiful view! (not evidenced by the following picture but we really did)
 


As the sun started to go down, we noticed how beautifully the garden at the main entrance of the hospital was decorated for Christmas. They had it closed because of the rain but it was pretty to look at, even from the opposite end of the hospital 6 floors up.

We had to face the inevitable that afternoon and get an IV placed. I had requested IV team as soon as we got to her room and thankfully, we had a WONDERFUL nurse who listened to me and called IV team. Raya is a very strong little girl and it took 4 of us to hold her and get the IV in, but they got it in on the first poke and it was perfect! They used an ultrasound vein finder and I hadn't seen that type be used before so it was cool to see how they did it. They also used a Bard StatLock to keep the IV in place and it made for such a nice, stable IV. It was not a mess of tape, gauze, and cotton balls that constantly had to be readjusted like most of the IVs we've had at our hospital.

We switched her from formula to Pedialyte around 3:00 that afternoon. After her IV was in and we had the plan lined out for Tuesday night & Wednesday morning, Raya and I snuggled up in her bed with "HellaKitty" and watched movies.
As lousy as all of this medical stuff can be, and as difficult as hospital stays can be, I truly do cherish the time I get to spend alone with my Raya. I wish that I could have had as much alone time with all of them as I've had with her and I wish that the alone time I spend with her could be under different circumstances, but I am grateful for the time I get to spend with her. She is such a tough, brave little girl and even though it is difficult to see her in these trying situations, I am always so proud of her for how quickly she bounces back and for how sweet she is to the people who are doing things like starting IVs.

Raya likes to surprise me. Usually at times when it makes me look silly in front of other people. Like when they asked if we needed anything and I asked for some juice and crackers for me but didn't ask for anything for her. She never drinks anything but water so I never even offer her juice anymore. It turns out that if it's in a cute little box with a straw, she likes it. Go figure.

I have to say that I was impressed by how quickly the hospital got all of her meds and formula to us. We actually ended up using our Nexium packets from home because they didn't have the same thing in their formulary (which I expected) and they were fine with it since I had brought them in the original packaging with the prescription label. We were only about an hour or so behind our normal schedule on her sleepy meds. After being up since 4:30 am, it was sweet relief when she was able to go to sleep. It's hard to put into words how I feel when I see her peacefully sleeping. Much like eating, sleep is something that does not come easy to her so it makes me happy to see her relaxed and resting.

She was supposed to go NPO at midnight (NPO = nil per os, or nothing by mouth) but we just turned off the Pedialyte at 11:30 when they came in to do night meds and the nurse started her IV fluids then too so they didn't have to come back in at midnight. I loved all of our nurses!

Transport came up at 6:15 Wednesday morning to take us downstairs for an EGD. It was kind of funny to wake her up and get her out of bed at an early hour just to take her downstairs and put her back to sleep for an endoscopy. She was a little anxious but she snuggled with "HellaKitty" and took it like a big girl. I'm kind of in love with this picture I snapped on my phone while we were walking down the hall:
We sat in pre-op for a while. It was pretty boring. The place was insanely busy though. It was much busier than our hospital's pre-op areas have been when we've been there. There was no playroom there so she was bummed. Not that it would have mattered anyway since she was hooked up to monitors and couldn't leave. We took selfies to pass the time.

And pictures of our glowing thumb:

And pictures of our tiger shirt with leads coming out the top:

And asked questions about how the nurse connects IV tubing to this little blue thing:

Meanwhile, I talked to all of the nurses & doctors that came by. I was able to chat with anesthesia about giving her something to keep her from getting nauseated and something to keep her from waking up like a wild animal, both of which have happened before. They didn't have the clonidine that we normally use but they used precedex instead and it worked beautifully. Once we had that all figured out, we met Dr. Punati, the motility specialist, who was doing the EGD. We talked about how the day was going to go with the EGD and then the manometry study and she answered some of my questions. A few minutes later, they hauled my darling girl off to have her procedure done. She had her beloved pink blankie with her and her new Hello Kitty, and she didn't get upset at all like she usually does when we get to the place where I have to say goodbye and go to the waiting room.

I felt like it took forEVER for them to call me. I was bored. There was nothing good on the TV in the waiting room, my phone didn't get reception there, I didn't have any money in my pockets to go buy breakfast with, and all the magazines were in Spanish and I didn't feel like I had enough brain power at that time of morning to try and read them. It was almost 8:00 when they took her back for the EGD and about 9:00 when they came to get me. That's a really long time for an EGD. It made me wonder what she had found in that little stomach. I started to feel a little bit hopeful that maybe she actually HAD found something, even though I suspected that she wouldn't. My suspicions were correct. She brought me back pictures of a beautiful, perfect stomach and small intestine.

I was fine with that. She hasn't had symptoms of ulcers or anything like that. I was hoping she would tell me there was a problem with Raya's pylorus (the valve between the stomach & small intestine) because there are things we can do about that but there was nothing visibly wrong with her stomach. They took me in to PACU (post anesthesia care unit) to sit with her while we waited for her to wake up.

I don't care who you are or how many times you've done this, it is always a little bit disturbing to see your child in a drug-induced sleep with monitors, wires, and oxygen connected to them. She's usually on blow-by oxygen after anesthesia so the cannula was something I wasn't expecting to see. One thing I do always appreciate though is that whenever she takes her blanket back with her, the nurses always cover her up with it when she's done so that she wakes up wrapped in her own blanket.
She has fairly low blood pressure anyway, but the drugs they had given her were making it lower than her baseline. Her pulse was lower than normal too, and I don't know what a normal respiratory rate for a sleeping 5 year old is but 11 breaths per minute seemed a little low. (the monitor thought so too, so it kept beeping) Her pulse pressure (i.e. the difference between the 2 blood pressure numbers) was low too. She set off lots of alarms. Nothing bad happened, they just had to keep an eye on her. As long as her O2 stayed in the upper 90s, I don't think anyone was worried about the rest of her vitals being low.

She probably could have kept on sleeping for another 3 hours but we had to wake her up so we could get back upstairs to her room for the manometry study. She couldn't stay awake but she woke up enough that they were okay to let her leave PACU. We got her back to her room and kept working on waking her up since she was supposed to be awake during the whole manometry study.

A few minutes after we got her settled back in to her room, Dr. Punati's nurse came to connect her to the computer for the manometry study. This is what it looked like:
That TV was a total lifesaver. I had planned a few things to keep her happy (and still) during the manometry study (6-8 hours...) but when she woke up, she really was not in the mood for anything. She didn't feel very good after being NPO for 11 hours and anesthesia, so she was really content to just lay there and watch a movie. (and when I say "a movie" I mean the SAME movie over and over) She really likes Despicable Me 2. Good thing it's a cute movie.
After a while, she felt a lot better and was ready to color in the notebook I had gotten her with the little bitty markers. I love how her tongue pokes out of her mouth when she's concentrating. :)

I will do another post and go into detail about the actual testing process but suffice it to say it was a long day trying to keep a very active 5 year old still and being patient with her when she got impatient with everything. I spent a lot of time taking the caps off of her markers, putting them back on, swapping out one set of toys for another, trying to get her to understand how much longer it would be until she could have a sip of apple juice or water (because 5 year olds don't understand "2 more hours"), and looking at the data being recorded on the monitor:
Lots of squiggly lines. The first time we did a manometry study, the lines on the screen meant absolutely nothing to me and I don't know why I didn't ask anybody to explain things to me, other than I figured they probably wouldn't tell me anything until the doctor had done his final review. This time, the nurse that was with us for the testing was very nice about explaining things. I think it helped that there was a doctor from China that was observing and learning how to set up and administer a manometry study. The whole thing was completely fascinating to me. It was real life, practical application of most of the chapter in my anatomy & physiology book about digestion. Pretty sure I understand that chapter a lot better now than I did then, and I thought I had a pretty good handle on it then!

In case anyone is curious, this is what it looked like when the G tube was out and the manometry catheter and NG tube were in:
This time, since she's a little bit bigger than she was 4 years ago, all of the sensors were inside her stomach so we weren't getting water leaked all over the place all day long like the first time.

When she got bored with the movies & TV shows and all her other stuff, she played on the iPad.
"Um, Mommy, I can't really see it very good. Can you take a picture so I can see it?"
The highlight of her day was when she FINALLY got to have some food and a drink. She had been asking ALLLLLLLL afternoon for a sip of apple juice or a sip of water. I hate telling her no when she actually wants to eat or drink something. For the test, we needed her to eat as much food as she could within a 20-30 minute window while she also got an 8 ounce bolus of formula. I ordered her everything the cafeteria had that I knew she would probably eat: baked potato with margarine, French fries, corn, refried beans, and apple juice. She was SO happy to get her food!
As per usual, she started off really strong with eating her fries and baked potato. She was excited to eat after having gone over 24 hours without anything nutritive, and not really eating anything at all for about 3 days. After about 10 minutes, her body language changed, she appeared uncomfortable, and she started doing all of the things she normally does to divert everyone's attention away from the task of getting her to eat. She started playing with her food instead of eating it, suddenly gained a lot of interest in whatever show was on, and had all kinds of things to talk about. She is the master of distraction!
By the time she had gotten the full 8 ounces of formula (which the nurse slowly gravity fed while Raya ate), she was feeling pretty yucky. She is not used to getting that much food & formula in a 30 minute time frame.

Just when we were reaching our limits with everything, we heard some beautiful music coming from down the hall. Raya couldn't get out of her bed to go look but I stepped out into the hallway and saw that a Mariachi band was playing requests for each of the kids on the floor.
The little girl down the hall had requested "Let It Go" and it was honestly the most beautiful rendition I've heard yet. I wish I had gotten the whole thing on video but I only got about half of it. (I'll post the videos at the end) As soon as Raya recognized the song, she perked up and started smiling again, and sang along in her scratchy, adorable post-endsocopy/anesthesia voice. After they finished at that room, they came to Raya's room. She asked them to play her favorite Christmas song: Rudolph the Red-Nosed Reindeer!
(pardon her hospital hair. try as I may, I canNOT keep it neat while she's in the hospital!) They had the voices of angels and could do incredible things with their instruments! It is the only time Rudolph the Red-Nosed Reindeer has made me cry, and I wasn't the only one! The nurse that was with us for the manometry testing cried too. :)
After they left, I found out that their group is called the Mariachi Divas de Cindy Shea, and they are 2 time Grammy Award winners. I really just wanted to hug all of them because they provided us with the perfect distraction at the exact moment that we needed one. It was another one of the small but much appreciated miracles that helped us through the trip.

Not long after we were serenaded, we reached the end of the study. We took one last picture of the funny tubes in her stoma and then it was time to take the NG tube and manometry probe out and put in a new G tube.
By the end of the study, there was fluid leaking out of her stoma because her stomach was not used to having as much food & formula in it in such a short period so it was overflowing a bit. Aside from having to wait for what felt like forever to get food & drinks, and then feeling sick when she got so much in her stomach all at once, the worst part of it for her was having all the Hypafix pulled off of her stomach at the end. It was a lot of tape. It was even stuck to the inside of her belly button, which she found to be amusing.
Even though it hurt pulling the tape off, she was very sweet and patient with the nurse and didn't get upset. She is such a good girl!

I thought she would have sworn off of food & liquids after that experience but she wanted her juice box back when we were done putting in the new tube. All the nurses wanted to see her tube because most of them had never seen an AMT Mini One before. It was nice to be able to explain to them why we chose to switch from the MicKey and what features make the Mini One a better tube for Raya. (I'm not saying the MicKey is inferior, just that it is not the best tube for Raya.)

After that, our sweet, wonderful day nurse, Maya, came to give evening meds and get one more set of vitals before she was off for the night. She was so great to Raya (and to me) and life at the hospital is SOOOO much easier when your child likes their nurse!

When all of that was finished, we got her changed into her pretty new Hello Kitty nightgown that I had bought her for our trip. Getting the sleeve over her IV was tricky but she was so happy to have it on!
She somehow managed to fight her sleep meds for an extra hour but finally drifted off to sleep. I'd say it was peaceful but there was SO much tooth grinding. She woke me up SO many times grinding her teeth. She probably wondered why I kept grabbing her face.

Thursday morning, we started off the day by brushing hair & teeth and getting out of bed for some much-needed activity. It's so much easier to do that when you're off of IV fluids! We had a lot of time to pass that day while we waited for the motility doctor to come talk about the results of the study, and then waited for discharge papers. We colored:
We took selfies:
We got vitals done and had our tummy listened to by our student nurse:
We made bracelets:

We tried to sneak away while Mommy was in the bathroom to visit the adorable little baby on the other side of our room, and dance behind the curtain in our candy cane slippers.

We tried on our (kind of) matching bracelets:
We ate more fries, potato, and corn and watched Despicable Me 2 for the 4th or 5th time:
I also said, "Raya, sweetheart, please don't put your French fries between your toes." for the first time in my life.

We paused for a moment to be amused by the size of the IV pump and feeding pump:

And also paused for a moment to appreciate how neat and tidy her IV site was, thanks to the StatLock they used to keep it in place. SOOOO much nicer than the IVs we get at our hospital that are kept in place by a mess of tape, gauze, and cotton balls and have to be adjusted every time somebody looks at them. This one was perfect the entire time it was in and never had to be adjusted at all. The adhesive left some marks (probably because of the way they removed it) but the IV itself was perfect.
We also had to take a picture with the menu screen where it said her name on the TV:
We brushed our teeth again too. She has an intense toothbrushing face:
We played Jenga with a nice volunteer lady:
Which gave Mommy time to pack up everything, including all of the frozen milk that the nurses had so kindly put in the breastmilk freezer for me. They really were so wonderful to us and it made the whole thing so much better.

Then it was FINALLY time to get out of there! (but only after refusing to change out of our Hello Kitty nightgown, which was totally fine because we had a really late flight)
We left the hospital at 4:00 and stopped for a couple of photo ops on the way out. There was a pretty tree in between the east & west sides of our floor (it looked a lot prettier in person than it does on my crappy cell phone pic):
And by the sign on the way out:

I thought about grabbing something to eat before we left the hospital but we were both antsy to get out of there and I figured I'd just get something at the airport. We crossed the street and headed to the subway stop, at which point Raya plugged her nose with both hands and said, "Mommy, do we HAVE to get in the elevator? It stinks in there!"
We got to the bus stop at about 5:00 and were fortunate to get to the ticket window just as their credit card machines stopped working (and they only take cards, no cash) so they were unable to allow us to pay for our bus tickets and we got a free ride back to the airport. It was another tender mercy. Not that I didn't have the money to pay for it, but it kind of softened the blow of having had the $40 stolen out of my bag while it was in possession of the same bus company. We made it back to the airport at around 6:00 for our 9:35pm flight to Phoenix.

Getting through airport security was a little less smooth on the way home but it was something I could have prevented. If you are ever traveling with a child who is on medical fluids, disconnect them from the pump before sending them through the security checkpoint. If I had remembered to do that before we got to the checkpoint, she would not have had to get a "pat-down" (that I don't think ever really happened) and they would not have had to inspect everything we were carrying on without me being able to touch any of it. I get that rules are rules but I did appreciate that when we were leaving Phoenix, the TSA agent was able to let me move things around for her and help her inspect things so that nothing got spilled and it was easy for me to put everything back how I needed it to be packed. Even with the extra inspections, it still wasn't bad getting through security and they were still really nice to us, even when I asked the lady if she had put clean gloves on. (she didn't like that I asked her) The worst part was trying to keep Raya from walking away while I put everything back together and put my shoes back on. They kind of took their time inspecting her stroller. Once I was able to strap her back in, everything was fine.

I have decided that LAX is an awful airport. Or at least the Southwest terminal is awful. There are very few food options, all of which are ridiculously overpriced, and it was far too crowded to navigate with Raya's stroller and our bags. I ended up settling for a coffee-free drink from Starbucks that was loaded with dairy (which Piper did not appreciate a day or two later) and a chocolate chunk muffin. We found a spot on the floor (yes, the floor, which was as crowded as the chairs) and waited for a flight to leave so that there would be a chair to sit in. I gave her the evening doses of her meds to keep her on schedule and then realized I needed to pump again before the flight. We went to the horribly tiny and crowded bathroom and waited for one of the only 2 stalls that her stroller would fit in while I pumped. I hate pumping in bathroom stalls but what else am I supposed to do.

She didn't last long once we got back to the gate. I found the perfect seat right on the end so that I could park her stroller right next to me without it being in everybody's way, but then I decided I'd better get a preboarding pass while there wasn't a line. The only rudeness I encountered the whole time we were at the airport was when I told the lady at the Southwest counter that I needed a preboarding pass for my daughter. Without even pausing, she replied right back to me, "We only give those to people with disabilities." At that point, Raya was passed out in her ginormous medical stroller with her feeding pump backpack attached to the handle and hospital bracelets still on her arm. I was a little dumbfounded at the way she shot right back telling me I couldn't have one because when we were in Phoenix, a woman who appeared to be quite able-bodied had cut in front of me and told the gate agent that she needed a preboarding pass, and when the agent asked her why, she said that she just needed extra time boarding the plane. If she can do that and get one, I thought the woman could have at least been polite enough to look for the child that I had said needed one. *end rant* I told the lady that my daughter was under the age of 5 and that we had medical equipment and that I would be having to carry her onto the plane. Once she finally looked around the counter and saw Raya passed out in the stroller, she said, "Oh, okay, I couldn't see her." Next time, I hope she actually looks first rather than being snippy at someone.
I honestly don't know how I could have managed this trip on my own without that stroller. Our regular stroller just doesn't cut it anymore. We finally got our preboarding pass and went back to where we had been sitting. While I was gone, a lady sat in the seat I had been in and put her bag in the one next to her. I thought that maybe she'd be polite and scoot over into one of the empty seats next to her but she didn't so I sat back down on the floor rather than parking Raya in everybody's way.

We were once again blessed by the kindness of strangers when it was time to get on the plane. As I was looking at everything and trying to figure out how I was going to manage carrying our bags, folding up the stroller, and getting a very much asleep Raya onto the plane, some off-duty flight attendants came over and took my bags from me, and then one of them held Raya while I folded up her stroller at the bottom of the jetway. They got us settled into our seats and I was so appreciative. Before long, we were up in the air and waving goodbye to Los Angeles.

Our plane landed at midnight and it was about 1:00 in the morning when we got home. I was greeted by some very thoughtful gifts on the kitchen table and a nice, clean house. It made me feel very loved.
The trip was a whirlwind and as soon as we got home, I realized that Raya was breaking out in a rash. By morning, her arms, legs and face were covered. I'm 100% sure that it was from the fries she ate at the hospital being cross contaminated with everything else they fry in the same oil they cooked her fries in. It was a bummer but on the bright side, we now know that we're not avoiding wheat for nothing. :)
So that's the story part of our trip. Next up will be the nitty gritty of the testing and the story about our lost bag. Here are the videos of the Mariachi Divas:

Comments

  1. Aw :) I saw some of the pics before I read your post and thought that was unmistakably CHLA! I love your blog and your little ones! :) thank you so much for sharing your experiences with us.
    - a fellow tubie & nursing student

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Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …