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MBS #4 and a whole lotta meltdown

Raya has had a long and grueling day today. So have I. It started before the sun came up, which is most definitely too early for a 2 year old. She climbed out of bed just after 5. She couldn't have anything to eat or drink this morning because of her swallow study so I left her connected to the feeding pump because she doesn't usually get out when she's hooked up. Today I woke up to the sounds of the IV pole banging into things as Raya tried to escape the bedroom. When she got to the end of the electrical cord on the feeding pump, she got mad because she realized she was stuck, and the meltdown commenced. She flopped down on the floor right next to my side of the bed and cried. I sat up and started talking to her about why she was upset (because we're working on getting her to use words instead of having fits) and she was already beyond the point of being able to communicate. She just sat & wailed. I got her blankets out of her bed and asked her if she wanted to lay on the bed with me and watch Backyardigans on my phone. (her new favorite show that I'm SOOOOOOOOO sick of. PLEASE, Netflix, get some new episodes.)

But like I said, she was beyond communicating at that point so I disconnected her from the pump and took her in the living room to try and get her to lay down on the couch with me. That was short-lived because she wouldn't be quiet and I didn't want the other kids waking up at 5:30, so Donny took the couch so he could get a little more sleep before he went to work and I made Raya lay on our bed with me. She was kicking and flailing around and would NOT stop crying so I put Backyardigans on my phone and showed it to her. Thankfully, that did the trick and she got quiet so I could go back to sleep. Every 22 minutes, she woke me up so I could turn on another episode until it was time to get the kids ready for school. At some point she still managed to climb onto the kitchen counter, find a box of conversation hearts from Valentine's day and eat them. (remember how she was supposed to be NPO??) Then she cried all the way to school because I helped her buckle her seatbelt. She does that a lot but everything has just been over the top lately. This time she was crying while jabbering nonsense that had nothing to do with anything. She stopped about 5 minutes before we got home but then she got upset when we pulled into the driveway because she thought I had meant that we were going to her doctor appointment & therapy as soon as we dropped the kids off. To save my sanity, I plopped her on the couch and turned on Backyardigans again. There are 2 episodes that she wants to watch over and over again and I'm pretty sure at this point we could act them out if we really wanted to.

I convinced her to let me help her change her clothes (read: I wrestled her out of what she had on and into something that was acceptable for public viewing) and we got back in the car. This time she was happily playing with a little stuffed monkey that she and Kaida are constantly fighting over. She was talking to it and calling it by the name of her GI doctor, which I thought was hilarious because it's not an easy name to pronounce and I could tell she was pretty proud of herself for learning it. Oddly enough, she was happy when we pulled up to the clinic for her swallow study. She's been to that clinic SO many times that she's quite comfortable there and makes herself at home. The guy that checked her in was the same one that checked her in for her GI appointment 2 weeks ago and he always gives her a sticker as soon as we get there so she was happy about that. Then it was time to go back to radiology and we had to wait forEVER for Raya to climb over the bench into the space in the middle of the bench, get her monkey out of the toy boat she had put it in, and then climb back over the bench without me touching her. I did touch her, and she had to get back in the middle of the benches and start over. That's just life with Raya right now.

She was getting whiny when we got to the radiology waiting room and got mad because I wouldn't give her the pen I was filling out the form with. I told her there were crayons on the table so she got some and then pulled a chair over next to the bench I was sitting on. Next thing I know, she's emptied a side pocket on my purse that mostly had garbage in it all over the floor. She happened to find a popped balloon that I had covertly taken away from her at church a couple weeks ago and got all excited & wanted to play with it. I took it away. (I saw a 20/20 when I was a kid about a boy that bit a balloon, inhaled a piece, had massive brain damage, and then died. I was traumatized and don't let my kids play with balloons.) The meltdown resumed.


Just then, the SLP that was going to be doing Raya's swallow study came out to discuss the results of an adorable little girl's swallow study. The girl, who was probably about 6 or 7, came bouncing out of radiology, put her finger over her trach and said, "I passed!!" She was SO excited and it was adorable. Then it was Raya's turn. When the x-ray tech (who we are much too well acquainted with thanks to previous MBSs, upper GIs, and 3 broken bones) came to get her, we both just laughed because she was having the biggest fit over nothing. As soon as we walked into the radiology room, she got completely calm and happy. I don't know if it was because the lights were dim or what but from then on, she was as mellow as could be. I plopped her into the special chair and buckled her in and she was ready to go.

The reason we did this MBS (modified barium swallow study) is because recently, she's been coughing and choking and turning all shades of red when she drinks water, especially at room temperature (which we'll talk about later). She hadn't had an MBS since May 2011 so it had been a while. She passed that one on ultra-thin liquids so we haven't had to thicken her liquids, which is nice. I just wanted to make sure that she's still swallowing safely before she starts moving on to other liquids besides just water.

The SLP and I got reacquainted and caught up on Raya's history and then when the radiologist came in, she filled him in on Raya's medical history. Sometimes I forget how far we've come. As she was going down the list of Raya's diagnoses (which was MUCH longer than the abbreviated version I usually rattle off when people ask me) I kept thinking to myself, WOW, we are in a much better place than we were a year ago and light years ahead of where we were 18 months-2 years ago.

I brought her favorite cup from home (which was exciting since at her last one she still refused to eat & drink most everything). The SLP (speech-language pathologist) mixed some cherry Kool-Aid powder into the barium to make it more palatable (if that's even possible with barium...) and put about 4 ounces of it in Raya's cup. I handed it to her and for once, her little independent streak came in handy and she took a nice big swig of ultra-thin barium all by herself. The radiologist had her take several more swallows, which all looked fabulous, and then moved on to the next thing: a barium cookie. Thankfully, Raya has recently discovered that cookies are pretty good and she likes things that crumble and dissolve in her mouth so she ate the cookie like a champ. She took tiny little squirrel bites and kept it in her mouth until there was enough to swallow, but it went down exactly how it's supposed to. After that, the radiologist had her drink more of the ultra-thin to see if she would cough like she does when she drinks water. She never did, of course, which I had fully anticipated. After she was done with the barium, I asked her if she wanted a drink of water. The radiologist stepped into the little office for a second and as soon as Raya started to take her first sip of water, she coughed & choked. Every single swallow of water made her cough. The radiologist came back in and watched & listened and the SLP got up close to her and watched to see how she was swallowing.

After listening to several coughs, the radiologist said that it didn't sound like the same kind of coughing that happens when liquids enter the airway, which is good. He said it sounds more like reflexive coughing that's happening as soon as the water hits the back of her throat. The SLP agreed with him and said that it's most likely a sensory issue. Sometimes I get SO sick of that word!! Why must EVERYTHING be about "sensory"? Anyway, she said that because water (especially room temperature water) has no flavor and gives very little sensory input, a child like Raya who needs very strong sensory input in order to perceive it is very likely to cough & choke on water because it's already heading down her throat before she even realizes it's in her mouth. We don't need to thicken her liquids (which I'm SO happy about) but we need to make sure that as often as possible, she's drinking ice water or we're adding flavor to her water to give her more sensory input from it so that she will be prepared to swallow it.

Overall, it went extremely well. I was SO proud of Raya. She swallowed that barium like a champ (and even swallowed it when she was told to, which was amazing in and of itself given her mile-wide independent streak) and was perfectly behaved while we were doing the MBS. She got to pick out a sucker on her way out and of course she picked a messy blue one. She ate it in the car on our way from one appointment to the next and fell asleep as soon as she was done with it.

It was a pity to have to wake Sleeping Beauty for OT but girlfriend NEEDED her OT today. She was in a pretty good mood when we went in. She asked for a drink of water and to wash her hands and then we headed back for her therapy session. Today was another one of those days that makes me REALLY sure that I want to get her a SPIO vest. She is a completely different kid when she has that thing on. She can focus, she's calm, her balance is better, she's able to engage her core muscles a little better, and her attention span is longer than half a second. I had to restrain myself from begging them to let her wear it home today. If her behavior continues on the way she's been the last couple weeks, I might be ready to part with the $$$ and get her one.
The blue lips are a nice touch, aren't they? :) She had an outstanding OT session. I was so impressed with how well she stayed engaged in her activity (scooterboarding back & forth picking up puzzle pieces and putting them in). At one point, there were 9 other people in the room not including Raya so it was VERY crowded & busy today, but she only had to be prompted a couple times to keep going. She was going back & forth in front of a big therapy table in between another therapist & patient and the patient's dad, who was talking to his son's therapist and Raya's therapist pretty much the whole time and Raya still was able to stay pretty focused on what she was doing. By the time she was done, she had moved 15 puzzle pieces across the room. That's a LOT of hard work. Then her therapist sat her down on a mat and told her to stay put while she put something away. Another very difficult task for Raya. She wiggled but she did manage to stay put, so that was another big moment for the day.

As soon as her therapist took the SPIO off to do her massage, Raya's wiggles came back. She would NOT hold still for her massage at all. She was even kicking her leg at her therapist, which I don't think she's ever done before. She did a pretty good job walking out to the front of the clinic but the second we stepped out the front door, the meltdown resumed. (I really want to get her a SPIO vest!!) She cried in the car off & on while we went to get Kaida from her friend's house and then cried when we got in the car because I made her sit in the pink seat and she doesn't like the pink one. (because she can't undo the top buckle on the pink one like she can on the gray one, which is WHY she isn't allowed to sit in the gray one anymore...)

Then we had feeding therapy. (see what I mean? looooooong day.) She actually did great with feeding therapy today too. She ate about 5 grapes and about 10 whole black beans. The grapes are hard for her because she has a hard time wanting to swallow the skins. Her motivator today was ice cubes (because she loves them and because it was 110 degrees by 10:00 today) and she was happy enough to be eating grapes that she hardly even asked for ice. Things were going along so well and then...she didn't swallow her last bite. Her therapist told her a couple times that she needed to swallow the grape if she wanted her ice. She didn't swallow. Her therapist asked her if she was all done and she spit out the grape. Since she spit out the grape, her therapist took away the ice. Meltdown resumed. The therapist cleaned her up (since she was the bad guy this time) and then she walked out the front door and left me with a screaming, crying 2 year old crumpled up in a pile on the living room floor. 10 minutes later it was time to get in the car and go sit in line for 40 minutes to pick the big kids up from school. Did I mention that it was ridiculously hot today? Raya cried and talked nonsense all the way to school, cried most of the time we were sitting in the parking lot, and cried most of the way home.

Bedtime didn't come fast enough tonight. We're trying out a sleep cd from her OT that's supposed to help her stay asleep so we'll see if it helps. She's on half of the amount of Prilosec that she's been on and she's been waking up and stirring in her sleep a lot lately and it's definitely contributing to her recent changes in behavior. We'll try out the cd for a few days and see if it helps before we do anything to her reflux meds. I really REEEEEALLLLY hope it helps because I don't have the patience for too many more days like this. It makes it difficult for me to get ANYTHING done. Or to remember to do things, like turn on the feeding pump when I hook her up before I put her in bed so that her 2 evening feeds will be turning into night feeds tonight. Thankfully days like today are few and far between and we definitely shouldn't need another MBS ever again. Yay for that. :)

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