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Wild ride

What a crazy week this has been for Miss Raya! It seems that I may have been premature in my celebration of weaning Raya off of amitriptyline. We THOUGHT she was doing fine without it, but then we started noticing little things. She was just acting funny. And she started spitting up again, which we thought at first was from the stuffy nose she'd had a couple weeks ago. She wasn't as alert & active as she always is. On Friday when her feeding therapist came, she kept asking me if I was SURE that Raya was okay because she wasn't being her normal silly, busy, interactive self. She just sat there in the high chair with her lips closed and stared at everything but us. She ignored us when we asked her questions that she usually answers. She did still open her mouth when I asked her what was in it though. :) It was really strange how bashful she was acting towards her therapist though, especially since she's been seeing her since she was 5 months old so it's not like she was a stranger or anything.
After the Walk for Down Syndrome on Saturday, things started to get a little crazy. First, she spiked a fever when we got home. I thought maybe it was just from being outside in the heat for a couple hours but even after we came home and cooled off & let her ditch the pants, she was still really warm. 100.4 degrees, to be exact. For the next 2 or 3 days her temperature went up and down. She'd be fine and then a few minutes later she'd have a fever again. Then she'd take a nap and it would be gone again. It ranged from 99.9 to 102.4 and there were no other symptoms except for an occasional drip from her nose. Very strange. And of course, she quit eating anything but snacks.
Monday night we put her to bed with the usual routine. She was asleep for about 3 hours and then right when we were ready to go to bed, she woke up. That's not totally out of the ordinary either, but this time she started tossing and turning. I've never seen a kid flop around in their bed like that. She literally wouldn't stop moving for even a second. Then she started whimpering and fussing and then she woke up and cried. Long story short, her reflux was raging and the only solution was to put her in the stroller in the living room with the IV pole next to her while I laid on the couch. Then after about half an hour when she was still awake and started complaining about the "bee-bowt" (seatbelt) on the stroller, I got her out of it and she laid on the couch with me. Finally she fell asleep and I ended up laying at the other end of the couch and used my feet to keep her from falling off the couch. At 4:45am I couldn't take it anymore and put her back in the crib and crawled into bed for a couple hours until it was time to take the kids to school.
Tuesday she stopped having fevers but she was still acting strange. She was more whiny than normal and she was getting clingy and actually wanting me to hold her and then laying her head down on my shoulder for more than 2 seconds, which is NOT normal for her unless she's extremely sleepy. Her other feeding therapist came on Tuesday, and even though it was only our 4th visit with her, SHE even noticed that Raya wasn't her normal self. She was much more mellow and reserved and not very interested in anything we were doing. On the plus side, since she was a little more passive than usual, we were able to use a couple of tools to stimulate the inside of her mouth & the therapist was able to show me some new techniques that Raya doesn't usually let anybody do to her. :)
Wednesday was the real kicker. Raya literally cried on & off ALL. DAY. LONG. Her PT came at 8:15 and Raya clung to me like a baby koala and wouldn't even hold still if Jessica was LOOKING at her, much less touch her. She took a lot longer than usual to warm up to being massaged and was really defensive with one hip & leg because of some really tight muscles that were making her walk funny. She didn't even care about the bubbles we were trying to bribe her with. And that was just the beginning of the day.
She napped for maybe an hour or so and woke up crying. Since it was our 10th wedding anniversary that day, we took the 2 little girls and went to lunch, and Raya cried all the way to the restaurant. She was happy while we were there and chewed on/mushed 2 french fries while the rest of us ate. Then she cried as soon as we got in the car and drove to a bookstore. She cried the whole time we were in the bookstore, then she cried all the way to the bus stop to pick up the other kids. She was happy while she was playing at the park for 5 minutes while we waited for them, but then she cried and screamed when I took her back to the car. Then she fussed & cried the whole time we were home until it was time to leave for the evening. Her great-grandmother passed away and her viewing was that night, so I wrestled her into a dress, gave her some Maalox and Tylenol to try and fix whatever was bothering her, got the kids in the car and drove to the funeral home. Raya cried the entire way there except for maybe 3-5 minutes of blessed silence. I think she hated the dress she was wearing. It was slippery and too big and was falling off her shoulder.
Once we got there, she wanted to be held and have her head on my shoulder. (which, by the way, has a big black line down the middle of it from whacking her forehead on the toybox while trying to get away from her PT) She did fine while we were at the viewing, thank goodness, and fell asleep in the car. As soon as I took her in the house and started trying to take the dress off, she started crying again. She cried inconsolably for a solid 90 minutes no matter what we did, including when she was in the shower, and finally at 10:30 Donny put her in the car and drove her around until she fell asleep. It was AWFUL. I had called the doctor's office (since our darling favorite nurse is now gone on maternity leave and probably won't be coming back:( so now I have to call instead of email) and left a message for them to call me, so when a nurse called me back, she could hear Raya crying in the background the ENTIRE time I was on the phone with her. The nurse said not to be surprised if the doctor wanted to put Raya back on the medication.
I guess I should mention that Raya was taking amitriptyline for its off-label use, which is to help alleviate retching & gagging. Amitriptyline's intended use is as an anti-depressant. So bless her heart, poor Raya is having a difficult time coming off of her anti-depressant. As soon as we started to notice personality changes, I knew it was because of being off the amitriptyline. I hadn't even THOUGHT about that being an issue because I was more concerned about whether or not she would start vomiting again. She hasn't done that, but her reflux has gotten worse and there have been definite personality changes.
Anyway, today was a much better day but I think a lot of that was due to the fact that we were gone all day to Great-grandma's funeral. We left the house at 8:45 and didn't get home until almost 4. Raya was happy as could be the whole day until we came home. The big kids wanted a snack so they all sat at the table and I put Raya (who had been fussing for a few minutes by that point) in her high chair. Usually she's asking me for a snack when she knows the big kids are going to eat but she just kept whining. I asked her if she wanted peaches and she actually answered me and said, "yeah" so I cut up a slice of peach for her. She picked up the bowl and tossed it on the table and kept fussing. When her hands got sticky from the peaches, which she took off the table and threw each one on the floor, she had a little fit and wanted her hands washed. Having messy hands hasn't bothered her for a long time now so that was a little different for her too. She pretty much whined the rest of the evening until I put her in bed at the usual time. Then the whining turned into full-blown screaming for about 15 minutes until she wore herself out and fell asleep.
So the plan is this. I really REALLY don't want her to go back on amitriptyline. I think it served its purpose in her life and she doesn't need it for the original purpose she started on it for, so I don't want her on it. I think the problems she's been having are just her body and brain chemistry trying to adjust to not having that medication in her system anymore. After talking to the nurse about it (who was talking to the doctor while I was on the phone with her), we've decided that Donny & I will wait things out for another day or 2 and see if things improve. If they do, great. If they don't, we'll put her back on the medication & try to wean her off again sometime in the future. REEEEEEally don't want to have to do that, but if she's completely miserable like she seems to have been most of the week, we'll do it. I feel bad for her. It must be so hard to have something wrong and not be able to express it to anybody.
So we'll just have to wait & see what tomorrow brings. We have a busy day scheduled with a breakfast event at the kids' school, then OT (hallelujah for OT!!!), then a swimming party (yes it's still warm enough for that here :). The swimming should be interesting with the way she's been this week since she's already not typically a fan of the pool if someone is touching her. I'm SO looking forward to the weekend. This has been an exhausting week, especially yesterday. I'm pretty sure that the only thing that wears on a tired mother more than a newborn baby that won't stop crying is a toddler that won't stop crying. Although I guess if I had a newborn baby AND a toddler that both wouldn't stop crying, THAT would be worse. Once again, it could always be worse. :)


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