Rough weekend

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

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

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

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

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

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

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

It was really, really crowded during the last part of church. Even I was feeling a little claustrophobic. She told me she wanted to go to "Primary" (Primary=classes for the kids) so I decided to take her. We plan on sending her to her own class once her new respite provider starts, but we're still waiting for that. I took her to the classroom and opened the door, interrupting the class, at which point she looked in and decided she wanted NOTHING to do with that. She immediately turned around and clung to my legs so I decided we'd wait until another week to join the class. After that, she was done. It didn't matter what I tried to do with her, she just wanted to go back to the nursery classroom she got to play in yesterday, which was in a different church building about 10 miles away. She was tired and crabby and got angry at me for not doing what she wanted.

We walked the halls a little bit but really it was more like she was trying to get away from me and thought I was chasing her. I was just trying to stay close enough to keep her from getting into any trouble. It really just went downhill from there. By the time we finally went home, she had been screaming and throwing her toys and I couldn't get Donny's attention to get the car keys from him, so she and I just waited outside on the grass.

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

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

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

She was on cloud 9 the whole time. To see the level of excitement over every little thing she saw, you would have thought she had been locked in a tower like Rapunzel and had never seen the outside world before. She was cracking me up. She'd pick something up and say, "OH, I LOVE THIS! It's so cute! I think I should borrow this on another day." She repeated this over and over again, intermingled with things like, "Mommy, which girl's name is this princess?" and "Oh, that's so pretty! I have one of these!" (she didn't have any of the things she said she had, it was just her imagination.) We walked around the entire perimeter of the store and she maintained the same extremely high level of excitement the entire time.

They have a giant tower of large stuffed Disney characters in the middle of the store and we went around the entire thing with her picking up every single different character and exclaiming how much she loved it and talking about each one. When she picked up the dog from Bolt, she said, "OH! It's THIS puppy! I LOVE this puppy! I saw this movie! He's supposed to have this thingy on his neck. It has his name on it. His name is BOLT!" And then she'd move on to the next character and do the same thing, even though she didn't have a clue who half of them were. It got to the point that other people in the store were stopping and watching her and saying how cute she was. You would have thought I had taken her to DisneyLAND, not the Disney STORE. I finally decided to take a video of her after we had been there for about 20 minutes because her level of excitement had not gone down at all and she was making me laugh.



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

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

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

I let go of the stroller and took a step towards her. She looked at me square in the eye, grabbed onto the tubing with both hands, and yanked. The backpack went flying off of the top of the stroller onto the sidewalk. We had an audience of passers-by at this point so I was trying to exit as quickly as possible. I reached down and put my hand through the strap on her tiny little toddler-sized backpack and in one swoop, stood back up while sliding my arm through the strap like I've done so many times before in the past 3 years. Just as the backpack reached my bicep, I heard an audible POP, followed by the gushing of formula from every part of the backpack that it could possibly have gushed out of. It was an explosion of Neocate. Did you know that you can actually fit 750ml of formula in a 500ml Infinity pump bag? It had about 600ml in it. HAD being the operative word. Formula was EVERYWHERE. It had sloshed across my back and onto my pants, and when I realized it was pouring out everywhere, I dropped it off of my shoulder into my hand, so then the formula was pouring out onto the sidewalk instead of onto me. It ran out of the backpack and splashed off of the sidewalk all over both of us. Her feet were soaked. My feet were soaked. It just kept coming. People walked by and stared as I stood there with a backpack (which was beeping by this point) that was leaking profusely and I'm sure a look of stupor on my face. I really didn't know what to do so I just stood there. Many thoughts ran through my head but mostly, "Um, I'm not really sure what to do right now." I opened the backpack and couldn't believe how much formula was pooled up in the bottom of it based on how much was all over the sidewalk, me, and Raya. It was probably a good 30 seconds before I even realized that there was formula dripping off of my hair onto my arm. Not to mention what was still running out of the backpack. At that point I figured a little more wasn't going to make a difference so I just dumped it all out on the sidewalk where the rest of the puddle was.

If only the picture showed how big the mess really was. I think we even sprayed the window of the ice cream store. I set the backpack on the ground and put her back in the stroller, dumped some more formula out of the backpack, and headed for the car. Oh, and I took her shoes off because she was freaking out about her feet being wet and having formula in her shoes. By that point, I was already laughing because you just can't make this stuff up. In 3 1/2 years of tube feeding, we have never had a pump bag explosion like that one. I was so glad it happened OUTSIDE and not in the Disney store!

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

For anyone who is not familiar with an Infinity pump bag, the hole was at the bottom of the bag where the tubing exits the bag and is about 1 square inch. Large hole in a bad spot to have a hole.

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

And that's why we don't get out much. :)

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

Shtuff Raya says...

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

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

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

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

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

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

GI follow-up, test results, and some reminiscing

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

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

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

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

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

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

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

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

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

We're not cleaning up constant puddles of vomit and spit-up anymore.

We haven't had an inpatient surgery or emergent hospital stay in over 2 years.

We don't have to feed her into her intestine 24 hours a day and drain bile out of her stomach around the clock anymore.

And we don't have to deal with an NG tube anymore! (or a GJ, that wasn't fun either)


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

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

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

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

 

I was very proud of her today!

Mother's Day Weekend

We had a busy but good Mother's Day weekend. It started off a little rocky with a big meltdown in the car on therapy and in the waiting room at the clinic, but got better after that. :) I decided that if she's going to have a giant meltdown in a public place, the waiting room of the therapy clinic is probably the best place to do it. As soon as her OT came to get her, she started to calm down and was happy enough to let me hold her while she got her legs massaged & had joint compressions. After that, she was as happy as could be and had a great therapy session. She did great at feeding therapy too.

Her nights have still been a little off. Getting her to go to sleep in her bed is an accomplishment, and getting her to stay there all night is unheard of. Friday night, she fell asleep on the floor in the living room. I was up really late studying for the 400 point, 50 question, timed lab practical I needed to take and since it was quiet in the house and no children were around to come and interrupt me, I decided to take the test then. Of course as soon as I was about 6 questions into it, she woke up and started crying. I thought she would come in the office but it sounded like she got close and then stopped. She cried until I was finished with the test (which I got 100% on, by the way). When I walked out into the hallway, I realized why she hadn't come into the office. She was connected to the feeding pump and the feeding pump was plugged into the outlet to charge, so she had gotten as far as she could and then sat down on the floor and hugged her blanket and cried until I finished my test. I know it's probably mean of me but I thought it was funny. We snuggled on the couch until she fell off sometime during the night.

On a side note, part of what was included on the lab practical & essay assignment this week was GI tract motility. I was going through the physiology CD and this made me laugh out loud:

It says, "Vomiting can serve as a protective reflex that expels harmful substances from the body." HA. It can also happen repeatedly for no apparent reason for the first 18 months of a baby's life! The page showed an animation of how the stomach vomits and then the bottom lines of text showed up. It says "Click the stomach to see the process again." THAT made me laugh out loud too because thanks to Raya, I've seen PLENTY of vomiting!

Saturday morning I had 2 essay questions to write. One of them was about how the stomach protects itself from digesting itself and what happens if the gastric mucosal barrier is compromised. I'm pretty well qualified to write that essay too. I could have included endoscopy pictures to go with it if there was a way to do that. :)

Saturday afternoon, the girls and I went to a birthday party for one of Kaida's friends at a pool in our neighborhood. I had been encouraging Raya to drink Splash for the first half of the day so by the time we got to the pool, she was way behind on her feeds & had to be plugged in while she was swimming. Plus it was hot and I didn't want her to get dehydrated. Since it was really the first hot Saturday, the pool was pretty crowded. That meant that there were plenty of people around to watch me follow my 3 year old around the kiddie pool with an 8 foot "leash" coming out the back of her swimming suit. Goodness only knows what they were thinking. I went back and forth between feeling self conscious because people were staring and laughing on the inside because I must have looked like a crazy person walking in erratic circles around the baby pool and they HAD to be wondering what was up. Except for the one guy who DID ask me if it was a leash.

She had a great time and didn't want to get out of the pool. I, on the other hand, was more than ready. I did not have the patience to be in the pool with rowdy older kids that shouldn't have been in the BABY pool to begin with and kept knocking all the little kids around. And don't get me started on the lack of parental supervision at the pool. Moving on...

Saturday evening, we went out to dinner to celebrate Mother's Day. We were a little nervous about how Raya would do since the last time we went to that restaurant, she got her own bowl of chips & salsa and ate them the whole time we were there, and this time she couldn't have any. She did awesome though. When the server took our drink orders, Raya ordered a cup of ice and munched on ice cubes while we ate our chips & salsa & bean dip.

She had a great time with her "ice soup" and straw too. I asked her if she wanted some Smarties and her eyes lit up and she said, "They have SMARTIES here?!? YAY!" I told her she could have Smarties when the server brought everyone else's dinner. It was a good exercise in patience for her. :)

Aside from getting wiggly and talking nonstop the whole time, she did really well and even explained to us why she didn't want to have any chips & bean dip. Bless her little heart. :)

Sunday was Raya's first official day back to church now that her respite provider is gone and the new one hasn't started yet. Donny had been asked to help in one of the classes and since it was Mother's Day, I wanted to hear the lessons in the adult classes so I just took Raya with me. She wasn't quite feeling like her usual self for some reason so she was pretty relaxed and quiet most of the time. She doesn't have much awareness of when she needs to whisper or not talk so she got a little chatty toward the end. Overall though, she did great and it was nice to have her there. Somehow we managed to not take any pictures of me and the kids on Mother's Day again.

We went to visit Donny's parents after they got home from church. Their dog Wyatt met us at the door and Raya was instantly obsessed with him. He has the sweetest temperament and was so good with her. She thought he was pretty neat. Every time she got close to him, he would lay down on the floor and let her pet him.

She was totally fascinated with his paws and kept trying to touch them. It was fun to watch them play.

We have 2 important appointments this week. This afternoon is our quarterly meeting to go over the services Raya receives. For some reason, I always dread that meeting. It stresses me out. Tomorrow afternoon we will be seeing the GI doctor and hopefully she'll have the results back from Raya's impedance study that was done 2 weeks ago. I'm sure I could probably have called by now about the results but I really didn't want to have them give me a two word synopsis of it over the phone. I want the WHOLE report. I requested the records from her motility testing and I'm hoping to get them soon so I can compare her last impedance study with this one. We have decisions to make and I want as much information as I can get so that we make the best decisions we can for her.

Thankful to be a mother

Happy Mother's Day!

Taking the bad with the good

Raya had an amazing oral intake day yesterday. She drank half of a box of Splash before school, drank the other half of it (minus a couple swallows) at school, and then ate 2 servings of her Neocate "pudding". (a serving is 2.5oz of chocolate Neocate + 1 packet of honey Simply Thick) All together, that was a total of 400 calories. I'm very happy with that and I know her feeding therapist will be thrilled. I'm having a hard time getting too excited about it because it was all formula and no food, and it's hard for me to get too excited about 400 calories' worth of formula. That probably sounds really pessimistic but we won't be removing her feeding tube based on how much formula she can drink, so I don't really feel like it gets us any closer to our ultimate goal. That being said, I'm very happy with HOW it all happened yesterday.

When she woke up in the morning, she asked for a juice box and then drank half of it. Since she had done that well before school, I told her that if she would drink the rest of it while she was at school, she didn't have to wear her backpack to school. She was pretty happy about only having to take ONE backpack to school instead of two like usual. I think her teacher was happy about it too. :) I really didn't expect her to drink the rest of it. I thought she'd have a few sips and be done, but she drank all but about 15ml, which I had her finish when we got home. She and Kaida played for a while and then she asked me for pudding. I hadn't given her a pump feed yet because I was keeping her on her usual feed schedule and it wasn't time for feed #2 yet. (Side note, I found it interesting that she spaced the juice box out over about 3 hours. Her feeds normally take 2, so it makes me wonder if she was drinking it slowly based on comfort more so than distraction, which is what we normally feel is her reason for being slow with her oral intake.)

Since she asked for pudding, I made her some and told her that if she would eat all of it, she could stay unplugged for a little while longer. That made her happy, as usual, but I still didn't really expect her to eat all of it. In one sitting, she usually eats about 2 oz out of the 3.5 that it makes. This time she ate all of it and then ate a Dum-Dum since she did a good job eating her "lunch". After the Dum-Dum, she wanted another one. I told her that if she was still hungry, she could have more pudding and she asked for more. It took her about half an hour to eat the first bowl and then it probably took her another 45 minutes to eat the rest of it. That time she WAS being slow because she was distracted & kept getting down to play, but she still finished all of it.

Since she had eaten/drank 400 calories, I decided not to do a pump feed until later in the afternoon/evening. I think it was about 1:00 when she came and told me that she was still hungry and wanted another Dum-Dum. She was acting pretty crabby and I told her that if she was hungry, a Dum-Dum wouldn't help her feel better but formula would. I asked her if she was ready to get plugged in so she could get formula in her stomach and she said yes. I was proud of her for that because I know that she doesn't love being tethered to her backpack all the time but she recognized that she needed it. In hindsight, I think she may have been feeling extra full from the pudding since it doesn't empty as quickly as liquid and mistook that feeling for hunger, but whatever. She's associating sensations in her stomach with needing to eat so for now, that's good enough for me.

There was much to be proud of yesterday. The girls wanted to play a game so I told them that if they would fold the load of towels & washcloths, there would be enough room on the living room floor to play their game. Usually when I say things like that, it's met with wailing and gnashing of teeth but I must have caught them in the right mood because they got all excited about playing the game. Raya folded the washcloths and Kaida did the towels. I had to lay them all out for her and remind her how to do it but she folded all of them. She did the bath towels and hand towels and Raya did the washcloths.

 You can see the effects of weak core muscles in these 3 pictures. In the first one, Raya is sitting cross-legged. In the second one, she's kneeling. In the third one, she's back to W sitting. Evidently, the amount of time it takes for her trunk to fatigue is equivalent to a large stack of washcloths. Another interesting observation I made while she was folding washcloths was that she still does not reach across midline consistently. In the third picture, you can see how she's leaning and rotating to the right and tilting her head to the right (which is the opposite side as her torticollis). The reason she's leaning & rotating like that is so that she can fold the washcloth from the left side to the right side without her left arm ever crossing the midline of her body. This is one of the big goals we're working on in OT right now. Reaching across midline is difficult for her and requires a lot of conscious thought and effort, and she gets tired of it quickly. I didn't realize that's what she was doing until I looked at the pictures later, but now that I know that folding washcloths pushes her in that area, we'll make her do it more. :) The best part was that when they were all done, they happily put everything away where it belongs. That is my LEAST favorite part about doing laundry. They did great!

The evening brought another reminder that Raya's life is not "normal". (Neither is mine. I actually said out loud the other day, "Someone is coming over to my house to get a pair of arm restraints for her baby since I have an extra pair." Nothing even remotely normal about that statement!) She's been struggling with her emotions a bit since her overnight hospital stay last week. She gets very angry with me sometimes in a way that she didn't before that. I can't say that I blame her since I did help the nurses hold her down while they tried to put the impedance probe in her nose. I would have some pent up hostility towards me too if I was her.

What's even worse than that though, is that she's still having nightmares. Last night I was sitting at the table and she was sound asleep on the living room floor. (because we have a hard time getting her in her bed and we're choosing our battles) All of a sudden, she took a deep, sharp breath and started whimpering and talking gibberish in her sleep. Then without even fully waking up, she jumped up, leaned her head back, backed up against the couch, and started yelling and crying. The only thing I could pick out of what she said was, "I don't want to go in there!" I hurried over to her and held her and talked to her and she laid her head down on my shoulder and hugged my neck. She opened her eyes and looked at me for a few seconds and then I laid her back down on her blanket to change her diaper and she went back to sleep. It's sad and crappy to watch that happen to her, especially when there's really not much I can do about it. I can't stop her from having nightmares and I contributed to the reason she's having them.

Apparently she also has good dreams though. I woke up at 3:45 because she was standing next to me leaning over in my face chattering away happily. It took me a few seconds to process what was going on but she was talking about a cat taking her toy away and a boy taking it from the cat and giving it back to her. I patted her head and told her that was nice and she laid down next to me and we went back to sleep. This morning, I asked her about the cat and she started telling me the story again. Part of the way through it she said, "Oh, wait, there was a cat AND a dog! I didn't remember that dog." and laughed. It was so funny to listen to her chatter away about this dream she'd been having. I'm pretty sure she went to school today and told everybody that a cat stole her toy and then a boy took it away from the cat and gave it back to her. :)

Today hasn't been quite as good so far with oral intake. She drank 3 oz of a juice box before school and took the rest of it with her in a sippy cup. She drank about half of it at school and finished it when she got home, so it took about 3 1/2 hours for her to finish the Splash this time. She doesn't want any pudding, so I doubt that we'll be anywhere near 400 today but I'm still happy that she finished one box.

Good thing she's cute

Good thing she's cute. I've been saying that a lot this week. (and it's only Tuesday!) We started our "Monday" a few hours early. As in, Sunday night. Raya fought her sleep meds that night, at least in part because she got it in her head that she wanted to watch Caillou (which has got to be one of the WORST kid shows ever created). It was bedtime and we said prayers and then sent the kids to bed, but right about then, she decided she wanted to watch Caillou so for the next 30-40 minutes, she repeated over & over again, "I WANT TO WATCH CAILLOU!" She cried, flopped around on the floor, and kept repeating it over and over. She took a couple of breaks, and finally after about an hour, she fell asleep on the couch. The lights were all off by then because the dark is calming for her. Shortly after she had finally gone to sleep (in a very awkward position on the couch), Donny turned on the kitchen light and decided to take the risk of moving her a little bit to make her more comfortable. When he got close to her, he realized that the clamp on her extension tube had come open and she was laying in a rather large puddle of stomach contents.

By then, it had been 3 hours since she had eaten her 3.5 oz serving of "pudding" (chocolate Neocate + thickener), and it was hard to say how much came back out of her stomach since it was spread all over the couch, but it was more than there should have been in her stomach after 3 hours. Usually, what comes out smells pretty much the same as it did when it went in but this time it smelled like chocolate Neocate and vomit. It was pretty disgusting. Chocolate Neocate has such a strong, permeating smell that if we so much as forget to rinse out a bottle or bowl right away, the whole house smells like it. So yeah, the couch was permeated with chocolate Neocate and vomit smells. The worst part was having to move her to clean up the mess. We've noticed that when she gets woken up after she's had her sleep medicine, she is beyond crabby. It's not a good thing to have her wake up after she's had it, and especially when she was so upset & had such a hard time going to sleep anyway. We got her cleaned up and changed her clothes and then I attempted to scrub the yuck out of the couch. I scrubbed the cushions over the kitchen sink with soapy water that had a splash of cider vinegar added. That got the vomit smell out but didn't touch the chocolate smell. It had gotten in between the cushions, run down the crack, and pooled under the cushions, so there was a lot to clean up. I did what I could and then had to lay on the other couch with her because she was still crying. Thankfully, I didn't ruin the cushions when I got brave and took the covers off & washed them. I ended up doing the cushions on the other couch too and the couches haven't looked this good in years. :) I also found the Lego guy's hair that's been missing, along with a whole lot of other stuff under the couch cushions.

*deep breath* So that was Sunday night. Then there was yesterday. We managed to get her to school somewhat on time in spite of the big kids moving slow as molasses all morning. While she was at school, Kaida and I went to the post office to pick up a very exciting package. It was a copy of a book called SENSE-ational Mealtimes! that was written by an OT and dietitian in Australia. They emailed me a few months ago to ask permission to use a couple of pictures of Raya in the book. I was excited to get it because she's in it, but I was even more excited once I started reading the book because it is going to be a phenomenal resource for parents whose children struggle with mealtimes due to sensory processing difficulties. (full review will be forthcoming when I've read the whole thing)

When we got home from picking her up at school, I was in the laundry room spraying stain remover on the couch cushion covers and I looked over at her and realized she was holding her G tube in her hand and playing with it. I don't know how it came out but it was out. I love how her balloon is always super lopsided. I think it's because of the shape of her stomach where the tube is located or something but I don't know.

We'll be watching this one closely in the next few days because there was less water in the balloon than there was supposed to be. Her stoma still looks better than it did before the scar tissue was removed but I can tell that we will probably have to have that procedure done again sometime in the future.

Putting the tube back in less than a week after her traumatic experience at the hospital was not a pleasant experience. She didn't want me to put it in and made it difficult. I told her if she didn't let me put it in, we'd have to go to the hospital and let the nurses put it in. She didn't like that idea but still didn't want to hold still. I got Kaida to come hold her hands and that distracted her for the half a second that I needed in order to pop the tube back in. She cried for a couple minutes but I think it was out of fear, not pain. She got over it pretty quickly though.

About 10 minutes after I put her tube back in, I heard Kaida say, "Raya, what are you doing?!" in her tone of voice that means she doesn't want to get in trouble for tattling but she really wants to tattle. I walked into the kitchen and Raya was on her belly on the floor licking the powder from the bottom of a box of cereal that she had dumped out onto the floor. Aside from being totally disgusting, the cereal had wheat and oats in it, both of which she's allergic to. As I was pulling her out of the mess so I could clean it up, she was reaching with her other hand to keep picking crumbs up off of the floor. When I had her stand up, she started licking crumbs off of her pants. I went to get the broom & dustpan and had to pull her out of the mess again when I got back 10 seconds later. She would NOT stop going after the crumbs, even as I was sweeping them onto the dustpan.

When the big kids got home from school, they ate crackers for a snack. Of course that led to crumbs all over the table & floor, which Raya immediately located and started eating. This morning she was stealing cereal out of Kaida's bowl when she stepped away to get the milk out of the fridge. I don't know what to do with her lately! She's been really aggressive and stubborn the last few days too. I'm hoping that having her OT back in town will help. I also have to say that I really REALLY miss her respite provider already. So does she. I'm crossing my fingers that we'll have our new one very soon.

Getting back to normal

I had forgotten how much a hospital stay throws everything off, even if it's only a one night hospital stay. I had planned on coming home Wednesday and hitting the textbooks but that didn't happen. Since it took us an extra 3 hours to even get the test started on Tuesday, we were home 3 hours later than I thought we'd be on Wednesday so I had to cancel respite for the afternoon. Raya needed attention, the other kids needed attention, I was tired from not sleeping very much, and I didn't accomplish ANYTHING that day. Raya was full of extra spunk & attitude that night. She's usually pretty okay about going to sleep, or she falls asleep easily because of her medicine that helps her relax, but somehow she fought it Wednesday night and was up until after 9:30.

She couldn't decide whether to fold her arms or put her hands on her hips so she did both. :)

We have eaten take-out pretty much every day this week (including no less than 2 In & Out trips) because I've been trying to catch up on things and haven't felt like cooking, can't decide what to cook, and just haven't bothered. Hopefully I can get myself back on track this week. I also didn't get nearly enough study time in. Thank goodness it's the first week after midterms and not the week OF midterms and I have time to finish learning everything I didn't get enough of this week.

Thursday morning, I wasn't sure if she would make it to school because she had stayed up late and did not sleep well the night before. I would have let her stay home if she had wanted to, but she said she wanted to go play with her friend Selina, so I got her ready & got her there on time and happy. Thursday afternoon was busy and crazy and loud around here with the kids, so I left for a while when Donny got home because I needed some alone time. When I got back, Raya was sleeping in the girls' room. Ashtyn is such a good big sister and had folded a big quilt into a wedge-shaped pillow for Raya to sleep propped up on. After I got home, I started working on homework and Kaida (who I SWEAR was a ninja in a former life) silently appeared in my office to tell me that Raya was crying. I went to see her and she was squirming around on the floor fussing. I put my hands on her back and started talking softly to her and she stuck her elbows out and tried to get away from me. After a little bit, she was awake enough to realize it was me and she let me pick her up. I snuggled her on the couch for most of the night but she inevitably ends up on the floor. :)

Friday was the first time in about a month that we've seen her OT and FT back-to-back like we usually do because her OT was on vacation. We were SO happy to be back at OT! Raya was really grumpy that morning because she thought that I was making her stay home from school. She didn't realize that it was Friday & she doesn't have school because missing Tuesday & Wednesday threw her off. I told her we were going to go see her OT and for the next couple of hours, every time she got frustrated about something, she would yell, "I WANT TO GO TO THERAPY!" Sad but funny. I'm glad she recognizes that therapy makes her feel good. Or maybe she doesn't and she just knows therapy is fun. Either way, she was happy to go. She was very, very fidgety and wound up through the whole session. She didn't follow directions as well as she usually does for her therapist and was kind of being a pill, but at least she was a happy little pill. :) Here she is towards the end of the session making "carpet angels".

She and I spent Friday night on the couch too. She's having a hard time getting past her traumatic experience at the hospital this week and has not slept well. She did better Friday night and seems to prefer being on the couch or the floor over being in her bed.

Yesterday I was able to attend a conference about therapy services for kids with delays or disabilities. I left the conference feeling very frustrated for families in this state whose children are under the age of 3 because of the recent changes to the state's early intervention program. When Raya was a baby and we started out with early intervention, we had a PT and feeding therapist come to our house weekly. We were able to add OT when she was diagnosed with cerebral palsy and her therapy services were moved from the early intervention program to the department of developmental disabilities. As often as she needed to see each therapist, she was able to, whether it was weekly, every other week, once a month, etc. Now, the state has changed the program so that there is a team of therapists who evaluate the child, and then the area with the most significant delay determines which therapist becomes the team lead for that child. That is the only therapist that comes to the house weekly. The team lead can consult with the other therapists as needed, but the child does not get the benefit of working with each therapist weekly. To put it simply, I think it's a load of crap. I don't care what flowery words the woman from the state EI program used to describe how wonderful the new "team model" is, this will be a great disservice to most of the children in early intervention. All I know is that Raya would be nowhere near where she's at today if we hadn't been able to have the 3-4 hours a week of therapy that she started getting from very early on. *stepping off soapbox*

So that's what I did all day yesterday. When I came home, I had to go through 2 lab exercises and then take a timed lab quiz, so that took about 3 hours. We fed the kids & sent them to bed and then we both started working on work projects in the office. Raya kept asking if she could lay on the couch and we told her to go to bed. A few minutes later, we heard shuffling sounds from the doorway and when I turned around, I couldn't help but crack up.

This is her way of subtly asking if she can watch Backyardigans on Netflix. She thought that if she couldn't see us, we couldn't see her and she wouldn't get sent back to bed. She really wanted me to come snuggle her, but I had things that I really needed to get done, so she sat on my desk while I worked. Then she plopped her blanket up on the desk and laid down.

I figured as long as she was comfortable, I'd keep working. She played with her hands for a few minutes, and her hands climbed on my face, up my arm, in my ear, etc. but she was happy so I kept working. A few minutes later, she fell asleep.

She stayed like that for about 40 minutes while I edited pictures. It wasn't bad except I couldn't really reach the keyboard. :) I put her in her bed and then Donny and I fell asleep on the couch watching a movie. He went to bed around 1:00 and I woke up at 4:15 because Raya was on the couch with me and was flopping all over the place. I got up to use the bathroom and as I was walking out the door, she freaked out. She was crying and trying to find me and when I picked her up, she clung to my neck and wouldn't let go. I was too tired to try to get her back in her own bed so I just put her in bed with us and she stayed there the rest of the night.


Today is kind of a sad day. It was our sweet, wonderful respite provider's last day with Raya. She graduated from college and will be starting a new job now, so we don't get to keep her anymore. She has been absolutely wonderful. She started working with Raya in October 2011, so she's been with us for 19 months. In that time, she's kept Raya out of my hair while I did all the things I couldn't get done with her around, changed a LOT of diapers (including poopy ones), taken her to therapy a few times, come to summer movies with us, taken her to the park, kept her home from church so she didn't catch all the nasty bugs that seem to work their way through the nursery frequently, put her G tube back in a couple of times when it came out while I was gone, given me a chance to spend alone time with Kaida, and given Raya & Kaida something to look forward to 3 times a week. Raya and Kaida adore her and I hope our new provider can start soon or there will be some very unhappy little girls around here when they realize they're stuck with boring Mommy all the time. :)

We are happy for her to start the next chapter of her life but we sure will miss her!

Raya's awful impedance study

If Raya had to sum up her 24 hour impedance study experience with one facial expression, I believe it would be this one:

One part pissed, one part sad, and one part "get me the hell out of here". The lighting in PACU wasn't great so you can't see the extent of her furrowed brow but she was not a happy girl. (and no, PACU is not typically part of an impedance study but I'll get to that later) So yeah, in short, the whole thing totally sucked. We did record a lot of "events" but it's up to the RN that evaluates the studies to see whether Raya knows what's going on inside her body as well as she seemed to during the study.

We got up early Tuesday morning and headed to the hospital so we could make it for our 7:30 check-in time. Raya only lasted about 15 minutes before she got bored and wanted to leave. She got upset with me because I wouldn't give her Tums. (#1, I didn't have any, and #2, she was NPO so she couldn't have any anyway but try telling that to a 3 year old) She insisted on flopping all over the dirty floor in admitting while we waited for her name to be called.

That was also when I realized I had left my breakfast drink and our toothbrushes at home. Oops. Thankfully it didn't take too long and we headed clear across the hospital to the endoscopy area. She got weighed & measured (14.2kg/31 lbs 4 oz, so she's lost a little more) and then got to pick out a beanie baby from the bucket. She did awesome with getting her vitals taken. She's really good about that now and even held her arm still by herself for her blood pressure this time. Usually when the cuff starts to squeeze, it makes her really antsy and I have to hold it still for her.

Once her medical history & vitals were done, she got to play for a while until the nurse that places all the probes for impedance & pH studies was ready for her.

She was totally in heaven with all those toys to play with and nobody else in the room! She kept trying to fit more toys inside the little car with her.

At about 9:00, the nurse was ready for her. I knew Raya would fight back some because she's a tough kid and doesn't like people messing with her, but I had no idea how bad it was going to be. We started with me and one nurse holding her while the other nurse tried to put the probe in her nose. It went in as far as the back of Raya's throat and stopped. She tried the other nostril & the same thing happened. Raya was getting pretty upset so she stopped for a minute. For the next attempt, I sat down on the bed with her and tried to hold the top half of her still while 2 other nurses held the bottom half still. The probe didn't go in and all it did was make Raya more panicky and upset. The nurse tried having her eat ice chips to get her to swallow, since all she needed to do was swallow and the probe would have passed into her esophagus. All that did was make her gag because she was in full on fight-or-flight panic mode by then and you can't think about chewing & swallowing when you're in that state of mind.

By this point, all of us were getting frustrated and a bit worried because we HAD to get the probe in but it just would not go past a certain point. At that point, they started talking about sedatives or anesthesia. Unfortunately, Raya has a bad reaction to Versed so that option was out. That would have been really nice & easy. We decided to try one more time before doing something different. This time, I was sitting behind her with my legs wrapped around hers, one nurse was holding her feet, another nurse was holding her arms, and I was helping to hold her head still while the other nurse tried to place the probe. She may not be very big but that girl is unbelievably strong. She fought so hard and screamed so much that there was just no way the probe was going in. Even with 4 of us holding her, she managed to pretty much get away from us and was screaming for me even though I was right there with her. She had a bloody nose, she was covered in sweat, there was foam coming out her nose, her eyes were red and bloodshot, and she had petechiae around her face. Enough was enough and they all left the room to call GI and let them know what was going on and to see if they could find an anesthesiologist. When they all backed up, she just laid on my lap and clung to me and her blanket.

Aside from the time when it took 3 or 4 nurses 2 hours to get an IV started on her when we were in Ohio for motility testing, and one of our GJ changes, this was the most traumatic procedure she's had done. The nurse that puts in pretty much all of the probes for all of the impedance & pH studies said that in all the time she's been doing it, there have only been 3 or 4 that have ended up having to go under anesthesia in order to get the probe in. She's the same person that placed Raya's pH probe almost 3 years ago so I know she's been doing it at least that long. So yeah, it was awful. I sometimes wonder what is wrong with me when I can go through something like that with her and be completely unemotional. There is no room for parental emotions in a situation like that. Me getting upset would only make her get more upset. Of course I felt horrible for putting her through 30 minutes of medical torture, but we HAD to try to get the probe in the way it's normally done because anesthesia is not something to take lightly.

After all the nurses left the room, the Child Life specialist that had talked to me for a few minutes while Raya was in the playroom came in. I imagine that everyone in the whole endoscopy area could hear her screaming. She felt bad that things had gone that way so she brought in a bag with all kinds of fun things for Raya. It had a beautiful handmade quilt, a pair of crocs with little things to decorate them with, play-doh, coloring pages & crayons, a little tiny stuffed raccoon, and a miniature tea set. Thank heavens that little kids are resilient. She was able to distract herself with the new toys and relaxed for a while.

She sat on the bed and played and watched Mickey Mouse while I ate a granola bar since I hadn't eaten before we left home. After about 20 minutes, she looked at me and said, "Mommy, I'm tougher now." What she meant was, okay, I'm ready to try again! I told her she was super tough but we were going to use some medicine to help her take a nap instead and they could put the "tube" in while she was sleeping. It melted my heart to hear her say that though. She tries so hard to rise to the occasion but some of this stuff is more than should be asked of a toddler.

Since she had eaten some ice chips while we were in between attempts (it's a coping mechanism & made her feel better) we had to wait about 90 minutes to put her under. When the nurse and anesthesiologist came in, Raya had been happy & playing but as soon as she saw the nurse, she curled up in a ball on her blanket and got really quiet. Poor kid. The anesthesiologist that came in was awesome. He asked me all the usual questions and then asked me a few more about one of the meds she's on. Turns out he's part of the pain management team at our hospital and he was surprised to hear that she has a diagnosis of visceral hyperalgesia at her age. Anyway, I really liked him and hopefully next time we need anesthesia, he'll be the one we end up with. We've actually had great anesthesiologists except for the nurse anesthetist that did her MRI anesthesia in January & didn't listen to me when I told him she needed something to help her wake up nicely.

They let me go into the endoscopy suite with her and this time, they let me stay until she was all the way under. I think they didn't want to risk having her freak out again after how the morning had gone. It's kind of freaky watching your kid go to sleep like that. She took forEVER to go under. She was really good about breathing into the mask so the gas was definitely going into her but she just kept on staying awake. The anesthesiologist kept saying, "Wow! She's really strong!" When she was out, I went to the waiting area to wait for her. It seemed like it took way longer than it should have but I think she was in PACU (post anesthesia care unit) for most of the time that I was waiting. By the time they took me back, she was awake and sitting up and none too happy to be there. They had already taken the "no-nos" off of her arms and I'm sure she was glad about that. (We didn't want to risk having her pull the probe out when she was waking up so we decided the restraints would be a good idea until she was lucid.) The first thing she said to me when I walked in was, "I want some Smarties now." I had told her she could have some after she woke up from her "nap" and she has a really good memory. I gave her Smarties to go with her cup of ice chips and she chowed down. It helped cut down on the retching & gagging she was having because of the probe running down her throat.

Once she was awake and had stopped retching and gagging momentarily, she had a chest x-ray to verify that the probe wasn't in her stomach. The nurse had to adjust it by 2cm, which meant pulling tape off her face and having me hold the probe in place while she retaped it, all of which made Raya gag more. Oh, and she was NOT happy to see that nurse again!

She was pretty annoyed by the fact that the end of the O2 sensor on her finger was folded under. It was distracting for her just like when the pantry door isn't closed all the way and she has to stop whatever she's doing and go close it. She kept picking at it and saying, "I need you to fix this."

We had to wait for a long time in PACU because other cases were coming in that were more emergent than us so the nurses were too busy to take us upstairs. We finally went up to our room around 12:45 when she should have been halfway through her 2nd feed of the day. She was begging me for her Neocate pudding so the nurse said it was okay to give it to her since they didn't have anything ready for her. (this is why I brought our own feeding pump and formula. I knew it would take too long for the hospital to get everything she needed, especially since she was just there for a test.) She was not happy to see that HER big girl bed wasn't in the room since I had told her that she'd have a big girl bed in her room instead of a crib. Kaida had asked me on Monday afternoon, "Mommy, is Raya going to be in one of those...cage things again?" referring to the hospital crib she saw Raya in before. Sad but funny. Once I made her some pudding and showed her the cool table she could eat off of in bed, she got over it and ate her pudding.

She spent most of the afternoon playing with her little tea set, the beanie baby, and the little raccoon. By the way, I found it comical that the beanie baby's name (according to its tag) is Cashew since she's very much allergic to cashews.

Isn't that quilt pretty?! I love it and so does she. Whoever made it, THANK YOU!! Once the nurses were done with her post-anesthesia vital checks, we were free to roam and I was STARVING, so we took a walk down to the cafeteria. By the time we got there, Raya had fallen asleep. Sometimes I feel silly that I still use a stroller with my 3 1/2 year old but that stroller has become her "safe place" when we go to appointments. She curled up in there and slept for at least an hour. I knew she was exhausted so I was glad she went to sleep.

She was pretty ticked when she woke up and found out we were still at the hospital. :) She wanted to go home and made no secret of that. After she woke up, she was ready to play with her "glass things" some more and had a grand time stuffing play-doh in all the little ceramic dishes. This was about the point in the day when she started telling me, "There's puke in my throat." meaning that she felt like she was refluxing. I was really proud of her for being so cooperative after the rough morning she had. She really did try to do what we asked her to do. Aaaaand then she'd all of a sudden get angry and yell, "I WANT TO GO HOME!" She also started to get all attitude-y with me and one time she said, "Um, there's PUKE in my throat here...push the button, Mommy!" with her hands on her hips.

 

In between telling me she wanted to go home, she also colored a picture for her friend Lily, who was in a room in the other part of the hospital. She's on her 30th hospital stay right now in just over 2 years.

Raya doesn't color very much, and I was SHOCKED to see how perfectly she stayed inside the lines. I've never seen her color like that before. Usually she just scribbles. She had been pretty crabby until I mentioned going to visit Lily and asked her if she wanted to color a picture for her. Distraction is the name of the game. I think it just goes to show that even from a young age, thinking of others instead of ourselves helps us to cope with the challenges in our own lives.

As soon as Raya had gotten her "nigh-night medicine" and we had met our night nurse and double checked to see if we were able to go visit Lily, I loaded her back up in the stroller and we headed across the hospital. By the time we got there, Raya was getting pretty tired. The girls kind of stared at each other and when we told them to say hi, they said it, but they weren't too interested in each other. They had both had a long, exhausting day. I guess hospital play dates aren't that exciting. :)

The funny part was that as soon as Raya had fallen asleep, Lily got all excited about her and started saying, "Look, she's asleep!" and talking to her.

She had all kinds of things to say to me too. She told me all about her new teddy bear that she had been given earlier that day and we made her ballerina Barbies dance. There is a lot of personality packed into that little body! It wasn't long before Lily fell asleep too. The girls may not have been all that excited about our visit but I had fun talking with Lily's parents. They are awesome people and Lily is an amazing little girl. We sure do love them!

After a while, we headed back to our room and I put Raya in bed. She usually kicks blankets off as soon as I put them on her but I covered her up with her new quilt and she left it there.

It was nice having the bed there instead of a crib. It made it easier for me to push the buttons on the recording box and keep her from getting her tube or the probe caught on anything. After a yucky day, it was nice to just be close to her.

Side note, as picky as I am about medical tape, this tape job drove me crazy!

I had never seen or used that kind of tape before. One of the nurses said they said they use it for endotracheal tubes. It reminds me of athletic tape. They had originally gotten out sheets of Tegaderm, but I knew as soon as I saw it that we'd need something stronger. I asked for Hypafix (which I usually have a piece or two of in my bag but I didn't this time) and they didn't have any. They brought in Durapore, which I also said no to because I wanted to leave her skin on her face when we were done, so this stuff was what they came up with. It went all the way from right next to her nostril to the hair above her ear, and there was another piece on her neck. It definitely did the job but taking it off was not fun.

The night wasn't terrible but it wasn't as quiet as I had hoped. She woke up a couple of times like she usually does. I also had to wake up a couple times to start & stop her feeds, push buttons on the recording box, and write everything down on the log sheet. One of the times that she woke up, she was clearly having a nightmare. She started thrashing around and then yelled, "I don't WANT the toys in the garbage!" and then sat up. When I tried to hold her, she pushed me away, moved to the foot of the bed,  and huddled against the rail of the bed. Any time I tried to touch her, she stuck her elbow out at me and growled. Eventually I got her to come lay back down and she went back to sleep. That was when I really felt bad about putting her through such an unpleasant experience. Thankfully, after she was fully awake yesterday morning, she decided I wasn't so bad after all and wanted to snuggle. She sat on me and colored for a while.

She played with her little dishes some more and watched Mickey Mouse Clubhouse again. I had warned her many times not to drop her dishes on the floor because they'd break but they never broke. Then one of them slid off of the chair and landed on the leg of the IV pole and broke. I think her little heart broke right along with it because boy did she cry! I felt bad so I told her we'd take it home and glue it together. There wasn't much else we had to do yesterday morning other than sit around and wait for it to be 11:00 so that the probe could come out. Things went right on schedule since we were in what is probably the quietest floor in the whole hospital. There are only 8 patients in that area now that the rooms aren't shared anymore. Pretty nice. :)

When the recording box shut off, we got to disconnect everything and then peel the tape off of Raya's face. That involved a lot of tears and a few lost hairs & skin cells (okay, a lot of skin cells) but once it was off, she was a happy girl. We loaded up all of our stuff and everything we acquired in the short time we were there and headed out.

We had planned on stopping by Lily's room and the medical records office on our way out but she was just ready to go home so we left. Once she was in the car, she was SO happy!

Nice tape burn, eh? Oh, and notice the superhero cape she made for her teddy bear with a baby wipe and a ponytail holder. Such a creative little girl. :)
She lasted about 15 minutes before she totally passed out and slept until we got home.

She was really happy to see Daddy and Kaida when we got home. She missed them a lot, even though it was only 1 day.

Now we wait for results. I still don't know what to expect and I'm trying not to get my hopes up one way or the other. My job while we were there was to push buttons on the recording box every time she started & stopped a meal (including Smarties or ice chips), got medicine, was laying down, or experienced a symptom. I had been telling her for about a week before the test that she needed to tell me EVERY time she had puke in her throat. (that's how she describes it to me) I don't know if she has a lot more reflux episodes than I realized or if she was just messing with me but between all the feeds, laying down/sitting up, meds, and symptoms, we filled up the entire log sheet and got about 1/3 of the way down the back of the page before we were done. There were some that I left off because I think she was just saying it because she had heard me say it, but there were several times when I KNOW she was refluxing. She didn't have any of the episodes she sometimes has at home where she chokes & coughs herself awake at night but hopefully we got enough things recorded that they'll be able to see what her reflux looks like on the recorded data and we'll get an accurate picture of her reflux.

We see GI in 2 weeks so I assume we'll either hear back in about a week or else we'll talk about it when we see her. Either way, I'm just glad it's over and hope we never have to do anything that involves putting something in her nose ever again. She's had a hard time since we got home. Her anxiety level is pretty high and in between playing & being happy, she's lashing out over every little thing, which is not like her. I'm SO glad her OT is back in town after being gone for 3 weeks and we get to see her tomorrow!