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Friday, September 30, 2011

Chubby Bunnies

We let Raya try marshmallows today. Turns out she has a difficult time with them. They're light & fluffy so she can't feel them in her mouth as well, so she stuffs and stuffs until there's foamy white marshmallow goo oozing out the corners of her mouth:
Of course the other 3 thought she was hilarious so they kept egging her on. After the big kids stopped laughing at her antics, she started to get anxious and she didn't think it was funny anymore. She got a "yuck" look on her face and I asked her if she wanted to spit them out. She walked straight over to the garbage can and spit out everything she could and then let me wipe off the rest and clean her up. It was a fun little experiment but no more marshmallows for Raya. :)

Tuesday, September 27, 2011

3 appointments in one day

Yep, 3 appointments in one day. I try not to do that to myself but sometimes it's unavoidable. It makes for a long day but after almost 2 years of this, the little girls are used to having a crazy day once in a while.
The first appointment was a weight check at the GI clinic, which we pretty much failed. Raya has only gained 2 ounces in the last month and her height pretty much stayed the same too. Honestly I wasn't too surprised and I'm just glad she didn't lose any. The girl's had a rough couple of weeks!
Since our darling nurse had her baby, my line of communication with the doctor is...hmmm...not what I've been used to, and I'm trying to be patient while new people learn the ropes. I had hoped to meet the new nurse today but we were running late & didn't have time. I think it would help if we could get acquainted.
I had the MA that did the weight check write a note to the doctor about the increase in reflux symptoms, including but not limited to: spitting up a couple times a day, waking up screaming at 4 am, waking up at 10:30 or 11 not feeling well, and a lot of coughing in her sleep, especially when she's lying flat. Compared to other points in the last couple years, that's nothing but Raya's uncomfortable and I figured I'd tell the doctor anyway in case she wants to adjust medications or something. I really need the new nurse's email address. That's SO much easier than playing phone tag over something that's probably just nothing anyway.
When we go to the GI clinic, they always give me a label with her patient info on it to put on her back. She never even knows it's there (which is why I put it on her back! :) but Kaida does. When we got stickers on the way out, Kaida wanted me to put hers on her back like Raya. Then when Raya saw that Kaida had a sticker on her back, SHE wanted to have one on HER back like Kaida. They're so competitive lately!
Then we rushed to OT, which we did today instead of Friday like usual because Raya's OT is out this week so someone else was covering for her. Anyway, we walked in and the girls were walking down the hall in front of the OT and she got this confused look on her face and said, "Why do they have stickers on their backs?" :)
We did more messy play at OT today. Since we felt like we had made progress with the shaving cream on Friday, we played with it again today. This time the girls "washed" toy cars with shaving cream. It was a good distraction for Raya and it didn't take as long for her to warm up to the idea of having messy hands this time as it did on Friday. The clinic was having a baseball theme this week so the girls got to play t-ball:
Raya thought it was fun but had no interest in running the bases. She just wanted to whack the ball off the cone and then go chase it. :)


As soon as OT was over, we rushed back to the car so we could drive as quickly but safely as possible to a rather questionable part of Phoenix for a cerebral palsy screening appointment. Raya was having fun at first. She liked the little gown with tigers on it. I was surprised that she let me put it on her. By now, she should have a pretty negative association with hospital gowns. :) While we were in the little exam room waiting, she was happy as a clam. I thought to myself, Who is this happy, smiling child and what has she done with my Raya??
Then the nurse practitioner came in and the normal Raya came back. :) Fortunately there was no vomiting involved but there was a lot of kicking, screaming, crying, squirming, etc. The purpose of the visit was to make sure that all of her needs related to CP are being addressed. We're definitely on the right track with the therapies we're doing. We also have an appointment scheduled in November with an orthopedic specialist to see if he thinks she needs any kind of orthotics or braces. I don't think she will but I do think it will be a good visit to have. The doctor must be in high demand because that appointment was scheduled in May. :)
The other specialist that they want us to see again is the geneticist. We did have a brief consult with him (like, 5 minutes max) at the hospital last October but he walked in and looked at her and said, "Oh. I was just reading her chart and I didn't expect to walk in here and see a healthy-looking kid!" (if I had a dollar for every time we've heard that one :) He ordered a couple of labs and said that if he needed to see her after he got the results, they'd call us. They never called us so we haven't been back. With the abnormal labs she's had here & there (elevated lactic acid & organic acids), CP with no explanation as to why she has it, MONTHS of unexplained vomiting, a heart murmur, and all her other miscellaneous issues, it's realistic to wonder if maybe there's something genetic behind it. Again, I don't think there is and I will be shocked if they actually find anything, but I think it's a good idea to revisit it now that everything has calmed down considerably since our first visit with genetics.
The only other recommendation they had was that we might want to take Raya to see a developmental pediatrician. I didn't really know a whole lot about what DPs do, but after talking about it with the NP, it sounds like it would be a good thing.
Overall, I was happy with the appointment. Going into it I thought it might be a waste of time but I think it will be good to have that clinic as a resource. The timing was really good too because I feel like I'm more ready for our appointment with the neurologist next week. I have more questions for her than I would have thought to ask on my own.
It was also a validating appointment for me for several reasons. After answering all of the questions the NP asked me, I feel like we're doing a good job with Raya. I've been asked many times if I think that Raya REALLY does have CP or not. Looking at her, I do understand why people ask. She's in great shape developmentally and doesn't have the obvious visible signs of CP that a lot of kids do. That being said, it is frustrating to be asked that question. She doesn't have an obvious cause for it. She wasn't a preemie, she's never had a stroke or brain hemorrhage, she's never had head trauma, and she's never had a seizure. Regardless of any of that, she does have enough signs/symptoms to warrant being diagnosed with CP. I also have enough respect & trust for her neurologist to rely on her experience and judgement. I also don't believe that she would have concocted a diagnosis just for the heck of it if Raya didn't really have CP.

I don't know why I keep feeling the need to explain all this, but whenever people ask me (especially people who are part of her health care team) there's this little bit of doubt that tries to creep in. I really think that doubt, and especially self-doubt, is one of Satan's greatest tools against our happiness and well-being. Doubt destroys self-confidence, and I think parenthood and self-confidence have a fragile relationship anyway. I don't get offended when people ask about whether she really has CP or not, but here's my answer to that. Just because she learned to walk within the typical age range and can do things like climb on the kitchen table and almost get both feet off the floor when she tries to jump doesn't mean that she doesn't have trouble with the muscle tone in her legs. Sometimes, certain muscles in her legs get really tight and she walks like she just got off of a horse after a week long cattle drive. Other times, she walks with what looks like a limp because the muscles in one hip are so tight that her leg bows and the other leg doesn't. It's different from day to day, and some days things are perfectly normal. When she's having to concentrate on a new task or focus on what she's doing, her muscles get more tense, and then they don't always relax like they should. Sometimes she forgets that she can open her hands. She'll clench her fist like she's holding something that she doesn't want to drop, only to realize later that there's nothing there. When she sleeps, one or both of her hands are clenched into a fist.
I think it's also really important to remember that we have been working with her to address all of her physical & developmental delays since she was only 2 months old. (I guess it was probably a blessing in disguise that she was born with torticollis & plagiocephaly because otherwise, we wouldn't have started PT so early.) Maybe if we hadn't spent hours upon hours working with PT & OT for all this time, she would present with more obvious characteristics of CP. I can guarantee you that she would be nowhere near where she's at today without the therapy. I think she would have crawled later, walked later, not walked as well as she does, and who knows what else. Until she started PT, she would only roll to the right, and goodness knows how long it would have taken her to realize that she had 2 hands, not just one.
I didn't mean to be so wordy about that. I really don't ever think about or dwell on the CP issue because it's kind of a frustrating subject for me. Her CP is very mild (which we are very grateful for) and I feel funny even saying that she has it, but she does, and today we actually had an appointment related to CP, so today, I couldn't avoid thinking about the subject.
After our appointment, the girls both fell asleep in the car and we didn't have enough time to go home before going to the bus stop, so I drove through Chik-fil-a, parked at the bus stop, sat in my air conditioned car to avoid the 100+ degree temperature (FALL, WHERE ARE YOU?!?!?), and ate my unhealthy fast food in peace & quiet while the girls slept. It was lovely. :)

Sunday, September 25, 2011

Shaving cream

One of the strange after-effects of Raya being taken off of amitriptyline is that she has regressed on some of her sensory issues. It seems like some of her senses have been heightened and things that she is more aware of things that she had previously gotten used to. She had gotten to where it didn't bother her to have her hands covered in sticky food. For example, she had recently started eating little chunks of soft, canned peaches that she could pick up with her fingers. A few days ago though, the big kids were eating some so Raya wanted some too. I cut them up and put them in a "bwayt" (plate=bowl) for her like she wanted, but she touched one piece of peach and then tossed the bowl on the table and wanted her hands washed on the spot.
I talked to her feeding therapist about it on Thursday and she suggested having some "messy play" at OT on Friday, and that we did. :) No sooner had I said the words "messy play" than Miss Elizabeth produced a dollar store can of Barbasol shaving cream. She squirted some on the big green gymnastics mat and showed Raya how to smear it around with her hand. Raya just stood and stared at her. I think if we could have heard her thoughts, it would have been something to the effect of, "No way, lady! You ca-RAZY if you think I'm touching that!"
With a little coaxing, Raya carefully dipped the tip of her left index finger in a small pile of shaving cream. She excitedly pointed to me with her foamy fingertip and said, "Wookh, Mommy!" She was so proud of herself. :) About half a second later, she wanted it OFF. She showed Miss Elizabeth, who said, "Oh, are you messy? Do you need some help?" and then proceeded to take her 2 shaving cream-covered hands and swipe them down both sides of Raya's arm and hand, smearing a thick layer of shaving cream from elbow to fingertip. Raya looked at it with equal parts shock and disgust.
Unsure of what to do next, she sat there as still as a statue staring at her hand.
Then Elizabeth picked her up by both hands to stand her up in a little pile of shaving cream. The instant Raya realized what was about to happen, she jerked her knees up as if Elizabeth was trying to lower her into an active volcano:
The girl REFUSED to put her feet down! Since both of their hands were coated with slippery shaving cream, Elizabeth ended up setting Raya down in the shaving cream before Raya's hands slipped out of hers. Raya tried her best to keep her skin from touching the messy shaving cream. She even flexed her knees hard enough to lift her calves up off of the mat and pulled her hands up to a safe distance:
The internal conflict that was going on inside her was written all over her face. She watched Kaida, who was absolutely in HEAVEN jumping and running and squealing with delight while she covered herself with shaving cream and you could tell that Raya REALLY wanted to have fun like Kaida was, but she just couldn't bring herself to touch the stuff.
 After a few minutes, she got a little more comfortable with having shaving cream on her hands, so Elizabeth squirted some right in her palm:
 She decided that maybe it wasn't so bad. She sat completely still so she didn't feel it sticking to her legs and feet, and played with the shaving cream that was squishing between her little fingers. Then she asked for more, which was very exciting to us. :) She works so hard to overcome fears and fight the instincts that try to keep her from doing things that make her uncomfortable. It makes my heart happy to see her do things that I know are hard for her.
 By the time the hour was over, Raya was cautiously but willingly walking through little smears of shaving cream. We left the clinic with both girls coated from head to toe in a fine layer of shaving cream and smelling like old men. :) Kaida definitely had more fun than Raya but I think Raya left feeling empowered. She's still not completely over her aversion to being messy, but the messy play reminded her that getting her hands & feet sticky and messy is not the end of the world. :)

Saturday, September 24, 2011

Locked in

Thursday was the day I was going to get some craft/sewing projects done for upcoming birthdays & a little jump start on Christmas, but as is often the case when you have kids, my plans went out the window. :)
I had taken the 2 big kids to school and the little girls and I were going to play upstairs for a while after we cleaned up breakfast. Raya was in Ashtyn & Kaida's room and I was in my office, and Kaida (4 yrs old) decided she wanted to play the Nintendo DS. I told her she couldn't play it until later, so she started to throw a fit. Her fits are rather passive-aggressive in nature. Instead of lashing out at me, she does things she knows she's not supposed to. In this case, it was locking her bedroom door, coming out into the hallway, and closing it with Raya still inside. Oh, and by the way, the bedroom doors in this house have exterior doorknobs on them to which there are NO keys. Yeah. So Raya's locked in her big sisters' bedroom and I have no key to get her out. The hinges are inside the room so I can't take off the door, and there's no way to get the knob off from outside the room.
As soon as Raya realized she couldn't get out, she started crying. She was completely missing the fact that she was living every younger sibling's dream: locked in older siblings' room with free reign of ALLLLLL their stuff that they never let her touch, and NOBODY can do a single thing about it. :) I was actually rather amused by the situation at that point. I felt a little bad for her that she was upset but I knew she'd be fine so I wasn't worried. Sometimes I'm afraid that I've become a little too relaxed about things. :)
Since there was no way to get in the door, my next course of action was to get out the ladder and climb onto the roof to go through the window. That's what Donny had to do that last time this happened (nobody was in the room that time). The window never would latch all the way so I figured it would be quick & easy. I climbed to the top of the ladder and hoisted myself up over the little half wall only to realize that when Donny had climbed through the window the last time, he had fiddled with the window until he got it closed and locked both of the latches because it was way too easy to climb up and get in. Crap.
So now, not only can I not get in to rescue Raya through the window, but now I also have to climb back down off the roof onto the ladder, which ends about 5 feet below the roof. :) My neighbor across the street happened to come outside just as I was chatting on the phone with Donny about what to do next. I couldn't help but wonder what she must have been thinking when she saw me standing on my roof talking on my cell phone. Luckily, she didn't run away when I asked her to come over and hold the ladder so I didn't fall & break something important on my way down. She wished me luck and hopefully she realizes I'm not a crazy person.
Since plan A didn't work, it was time for plan B: remove the doorknob using whatever means necessary. I figured I'd be replacing the stupid thing anyway since it was obviously not the right kind of doorknob to have on a child's bedroom door, so who cares if it got a little bit destroyed in the process. And that it did. I managed to wedge a screwdriver in between the doorknob and the door and sever a few parts inside the doorknob, none of which made any progress towards unlocking the door or removing the doorknob. Since that didn't work, I took a few good whacks at the knob with the hammer. I hadn't been feeling particularly stressed but that would have been a great stress reliever if I had. :)
Then I decided to push on the door a little with my foot just to see if it had any give in it at all. The door cracked, which led to plan C: put a hole in the stupid door, stick my hand through, and unlock it. I figured what the heck, I'm going to have to fix the door now anyway so why not finish what I started. I knew that even if we ended up having to replace the door, it wouldn't be a big deal since it is obviously the most inexpensive, cheap, poor quality, ridiculously flimsy hollow-core door on the market.
I finished making the hole that my foot had started in the outside of the door and then used a hammer to pop a hole in the other side. I probably could have flicked it with my finger and made a hole in it. Once the hole was big enough, I stuck my hand through and opened the door. Raya was standing in the corner bawling still and there was snot running down her face since the whole ordeal had taken about 45 minutes. Bless her heart, she has been a lot more clingy the past couple weeks and I guess all the big sister treasures meant nothing to her when she didn't have anyone to share them with. :)
Now to fix this:

And here's what the other side of the door looks like:
The doorknob has obviously been removed since I completely trashed it, and once the giant hole has been patched (thank you, youtube), the new easily unlockable doorknob will be installed.

Monday, September 19, 2011

Doing better. Whew.

I'm very happy/grateful/relieved to report that Raya had a MUCH better day today. She tolerated her full feeds today and finally ate something other than crackers. It was vanilla yogurt that nobody else likes because it's not sweet at all and very tangy. She ate about 7 or 8 tablespoons so heck with the possible dairy allergy. :) If it doesn't make her puke and she wants to ready it, I'll let her eat it. She has lost some ground but she'll move st heer own pace and I'll let her.

She's been much happier today too. Every time she sees me, she says, "Hi/bye Mommy!" She said it at least 15 times in a row when I left to go to the grocery store.:) She did wake up screaming after only half an hour at nap time today but bed time went much better too. Big sigh of relief!

Sunday, September 18, 2011

What it's like to take a 22 month old off of an anti-depressant

I'm happy to report that we seem to be past the worst part of Operation Wean Raya Off Amitriptyline. (knock on wood) If you missed the first part of the story, click here. She has been MUCH better the rest of the week after spending the ENTIRE day Wednesday crying. I have always been pretty vague with information about the medications she's on, but since one of the main purposes of this blog is to share our story with others who might be having similar experiences, I decided to go into a little more detail about this.

For starters, amitriptyline is not a drug that can be discontinued abruptly. If it is, there are risks of heart arrhythmias and other serious complications. Because of that, we tapered her off of it over the space of about a month. She was officially finished with it on September 4th.
When I talked to the nurse on Wednesday about the problems we were having, she told me that the doctor would probably want to put Raya back on the medication and that she'd talk to her and call me back the next day. I talked to her Thursday and she said that the doctor had written the prescription but wanted to know how things were going before she sent it in. I told her things were moving in the right direction but that it was hard to tell since we had been out of the house the whole day for Great-Grandma's funeral and that I wanted to wait it out and see how that night was. The doctor said that was fine and that I could call back Friday and let them know whether we wanted the prescription filled or not. I decided to wait and see how she did at OT Friday morning and then call. It went great, as usual, so I felt like we could wait it out over the weekend and see if things improved. I really felt like putting her back on the medication would be giving up on her, and that going back on it would be a slippery slope to her being dependent on it. I was afraid that the longer she stayed on it, the harder it would be to get her off, so we decided to let her tough it out, and we definitely feel like that was the right decision.
There have been a few major areas that have been affected by stopping the med: social awareness, sleep (partly due to increased reflux), eating, and moodiness. (keep reading to the end, I'll explain why she was on it in case you missed that part of the story)

Social awareness:
She is still a lot more mellow than usual and she gets really quiet around people outside our immediate family. Today we went to listen to a cousin who just got home from serving a 2 year mission for church speak about his mission. Raya spent the whole time there sitting quietly on her grandma's lap, which is SO out of the ordinary for her! I'm not sure if it's an anxiety issue or if her inhibitions just aren't as low as they were on the medication but she was happy and quiet all the way through church. :) When we're at home or not around anybody outside our immediate family (or when she's distracted enough to not notice other people) she chatters and plays and is very vocal. As soon as someone else is around, even if it's one of her therapists that she's known for several months or someone in her extended family, it's like she suddenly forgets how to talk and her lips just clamp shut. She doesn't seem to have anxiety or seem like being around other people upsets her, but she used to be a lot more friendly to people than she has been lately.

Sleep/reflux:
For the most part she's been sleeping better since Wednesday too. She gets a little fussy if we give her the other meds after she's already asleep and then she usually fusses a little a few minutes after her night feed starts. That may just be a venting issue since we haven't been venting her at all lately. She's not tossing and turning as much as she was earlier in the week. I've NEVER seen a little kid flop around in their bed like she was. The poor girl just seemed like she was crawling out of her skin and couldn't get comfortable. I could hear her swallowing stomach contents that were working their way up and she was doing a lot of the little coughing that often accompanies reflux too. That has gotten better over the past couple of days.

Eating:
She's slowly starting to go back to eating crunchy and rough-textured foods again too. I made her some cream of wheat yesterday morning and she still won't touch that. I, on the other hand, thought it was delicious. :) The strangest part about her "eating habits" in the past week is that she will often ask for food that she likes and then refuse to even taste it. She didn't do that before, she would at least take a couple bites even if all she did was spit the food back out. Hopefully she'll find something that she wants to eat again soon.
We went out to dinner at Olive Garden last night to celebrate our 10th anniversary, which was on Wednesday, i.e. the day she cried all day long and then we had the viewing for Raya's great-grandma's funeral that night. Not much room for celebration that day. :) Since we had no babysitter, we took the kids with us. They're part of this marriage too, right? :) Raya ate part of a slice of fried eggplant. (when I say "ate", I mean that she took bites, chewed/dissolved the breading & swallowed some of it, and pocketed the actual eggplant) It was rather disgusting to watch but I didn't care since she was actually trying to eat something again. She also took some bites of breadstick but I made her spit it out when she almost choked on it. Donny gave her a couple tastes of lemon which she evidently doesn't care for. I guess her tastebuds do work a little bit. :)

Moodiness:
Her mood swings have decreased a lot over the past couple of days too. She was having CRAZY mood swings that were way beyond that of a normal almost 2 year old. She would be perfectly happy and playing and then for no reason at all, the next minute she'd be flopping down on the floor crying or clinging to my legs crying. She still cries a lot in the car, which she never used to do at all. Being strapped into something (carseat, stroller, high chair, etc) has always been a comforting thing for her but this week she doesn't seem to care for any of it.
One thing that has been hard this week is that she will start crying but then make no effort to express why she's upset. It's like in the heat of the moment she suddenly forgets how to communicate and all she does is cry. I'm not concerned about it because she does still communicate with us when she's calm, but I hope this part doesn't last long because it's very frustrating.
She's also been playing with her brother & sisters more in the past couple of days. She gets sad if they go upstairs to play without her but gets really excited when she sees them and they give her attention. She's getting better at entertaining herself again, thank goodness. :) Here's a picture of Raya playing with her "big" sister (who she's catching up to in weight very quickly) yesterday:

And there you have it. That's what it's like to take a 22 month old off of an anti-depressant that they've been on for almost a year. Just to clarify, she was on it because it helps to alleviate retching and gagging in kids with chronic vomiting and in kids who have had fundoplication surgery (anti-reflux surgery) because retching and gagging are common side-effects of the surgery, NOT because it's an anti-depressant. Raya didn't have the surgery but she woke up every morning dry heaving and/or vomiting and usually did it late at night as well. She was put on amitriptyline out of desperation while she was in the hospital last October because her poor little body needed some reprieve from the chronic daily vomiting that had gone on for almost a year. I have absolutely no regrets about putting her on it and I feel like it has been a great help to her.
That being said, it did its job and we, along with her GI doctor, decided it was time to discontinue it. I was so occupied with watching for the return of her gagging and vomiting that it never even occurred to me that she might have other problems with coming off of it. I wasn't even thinking about it being an anti-depressant because I've always thought of it as "Raya's anti-puking med" so I didn't think about her having trouble with her, um...mental state. Things seem to be slowly coming back together for her and I think she'll be fine. The changes in her personality have left me wondering if the Raya that we've had for the last 11 months was just a hyperactive, hopped-up on anti-depressants version of her and not really her true personality. I never felt like there was anything wrong with her and we loved the wild & crazy Raya, but you can bet your booties that I won't complain if she stays mellow enough to stop climbing on top of the kitchen table and will sit quietly for more than 1.5 seconds at a time. :) And heaven help us when it's time to wean her off of neurontin.

Thursday, September 15, 2011

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. :)

Sunday, September 11, 2011

Taking Walks & Life Lessons

With the unrelenting, blistering, scorching heat in Arizona, we haven't had many opportunities to just go outside and take a walk in the past 4 months. It's just no fun at all when you start sweating the second you walk out the door. We had a special treat on Friday though. It was only about 100 degrees, overcast, and breezy. PERFECT conditions for taking a walk. Not only that, but there was a little bit of thunder here and there. Raya and I were home alone for the afternoon so I put shoes on her and we went for a walk. I should mention that her feeding pump had malfunctioned overnight and failed to give her ANY of her feed, so she was tethered to her backpack all day long to make up for it. I think the feeding pump does that to us every so often to keep us humble and remind us how good we have it right now. :)
(As a side note, she's been keeping her hands fisted a lot more lately. Not sure why.)
Raya didn't seem to mind at all though, she just wanted to go outside. She jabbered away as we walked down the sidewalk toward the park. Every few steps, she would stop to pick up rocks or point to the direction of sounds that she heard. She was SO happy to be outside! I ended up having to hold her hand to keep her moving forward because there were so many distractions along the way. The last two houses on the street have different curbing and driveways than the rest. They slope down to the street much more steeply than all the rest, and Raya often has a very difficult time coping with the way that walking across the slope throws off her balance. The first time we ever tried to walk to the park, she got a few steps into the first driveway, stopped in her tracks, panicked, and sat down. She has come a long way since then but I never know how she'll do on any given day. This time, she did well but I could tell she was really concentrating. Her steps changed, she squeezed my finger, she stopped talking, and we moved a little slower. We got past the driveways and made it to the park. I could tell she was really proud of herself. We stood on the sidewalk for a couple minutes just looking around. She heard a noise (I don't remember what it was now, maybe thunder or a dog barking??) and started making the famous "O" face:

As most things do with Raya, her curiosity about the loud noise only lasted a few seconds and then she was on to something else. I let her choose where she would go next, thinking that she'd keep walking along the sidewalk, but she didn't. She opted for the grassy drainage area on the other side. I stood back and watched her as she tried to decide if she was going to walk down the steep slope or not.
 I wish I could have heard what was going on in her head as she contemplated whether she could do it or not. I asked her what she was doing and she turned, smiled at me, and started making her way down the hill.
She got to the bottom and giggled while she spun in circles, yelling, "WEEEEEEEEE!" Then she picked up a couple of pine cones and stumbled her way back up the hill to the sidewalk. We felt a couple raindrops (and a couple mosquito bites) and decided to head for home before a downpour started (no rain on my camera, please! :). 
She carried the poky pinecones all the way home with her. Since she was holding them, she didn't have room for my finger in her hand and I wondered how she would do on the driveways. Her pace slowed and she looked intently at the ground as she walked across, but she made it.
 She was all smiles by the time we got home:
I was proud of her, just like I am anytime she does something that's hard for her.

On Saturday, we had the opportunity to take another "walk". This time, it was the annual Walk for Down Syndrome. My best friend's daughter (who happens to be my daughter's best friend) is a spunky 8 year old girl with Down Syndrome and they have been a huge blessing in the lives of my family.


Skylar & Brooke

We met them a little over 4 years ago and became instant friends. I will be the first to admit that before we started spending a lot of time with them, I wasn't really sure how to act around people with special needs. I never really knew any growing up. I've learned so much from them and I'm so grateful for the influence that they have had on all of us. This is the 3rd year that my family has participated in the event (last year Raya and I were at the hospital so the kids went without us) and we LOVE it! The kids have been so excited for it all week. I think the best word to describe the event is joyful. You can't be around all of those special people without feeling full of joy and love for them.
 For the first hour, we ran around and played carnival games and played in bounce houses. Then it was time for the "walk" part. :) There was a huge crowd that moved very slowly, and it just so happened that we ended up stopping right next to the huge, very loud speaker that was blasting music. To most of us it was an annoyance but Skylar has a really hard time with loud noise. Ashtyn always has too. First we saw this:
 And that turned into this: (which was the point that Brooke and I both got tears in our eyes)
This picture is such a good representation of their friendship. They have always protected each other, and it completely goes both ways. I'm pretty sure there was at least one trip to the principal's office in kindergarten because Skylar didn't like the way someone was treating Ashtyn. :) Seeing them together just makes me happy.

Once we moved ahead a little bit, the girls felt better and then the dancing started. :) I think that's my favorite part of the DS walk. Some of those kids have some pretty slick dance moves! :) Ever hear the saying, "Dance like nobody's watching"? Yep, that's exactly what they do. :)
We finally made it through the balloon arch and took our lap around the ball field. Well, not really. I got sidetracked at a booth. It was a respite care place, which was extremely convenient since the place I've been trying to get respite lined up through never returns my phone calls. One more reason I was glad we went! :)

After the walking was over, we had some yummy treats (Blue Bell ice cream, Jamba Juice, candy, etc.) and played on the grass. Then there was the 5 minutes that Raya completely disappeared immediately after being let out of the stroller. Oddly, I felt no panic but more like, oh crap, I don't even know where to START looking for her! She walked over to the giant inflatable obstacle course and I found her just as happy as could be. :)

Skylar and Raya shared some chips. Well, Raya fed Skylar some chips, anyway. :)

Here's our good lookin' crew:

And here are our beautiful girls:
Often when I see these two walking together holding hands, and especially at the Walk for Down Syndrome, the words to a church song from the Children's Songbook come to my mind. These words have taken on a whole new meaning for me since Raya came along. I will never forget what it felt like the first time I realized someone was staring at her back when she had a feeding tube taped to her face and an orthotic helmet on her head. It was almost like someone had punched me in the stomach and I remember hoping that by the time she was old enough to realize that people were staring at her, the reasons for the stares would be gone. This song is simple but powerful.

If you don't walk as most people do,
Some people walk away from you,
But I won't! I won't!

If you don't talk as most people do,
Some people talk and laugh at you.
But I won't! I won't!

I'll walk with you.
I'll talk with you.
That's how I'll show my love
for you.


Jesus walked away from none.
He gave his love to everyone.
So I will! I will!

Jesus blessed all he could see.
Then turned and said 'Come follow me'
And I will! I will!

I'll walk with you.
I'll talk with you.
That's how I'll show my love
for you.


Cole, Skylar & Ashtyn at the 2009 Buddy Walk

*Note: to hear the song, click on the title link. Then at the upper left corner of the page that opens, select the "words and music" option and click the play button.

Wednesday, September 7, 2011

What happens when a G tube balloon pops

It's funny how every time I have a paranoia about something with Raya, eventually it happens and usually turns out to be not as big of a deal as I expected it to be. (Add that to the list of lessons I've learned from having Raya. :) The day I brought her home from the hospital with the NG tube in her nose, I was SO afraid she would pull it out and I'd have to put it back in. I knew it was inevitable that I would have to put one in her nose at some point, but I dreaded it. Then it happened. I think she caught it on her little pinky finger and pulled it out. I wrapped her up like a little burrito, got my tape and stethoscope ready, and went for it. It really wasn't as bad as I had anticipated. Which is good since I ended up doing it SOOOOOOOO many times.
Then she got her G tube and I was given the "what to do if it gets pulled out" speech before we left the hospital, which left me feeling paranoid. Thank heavens the non-balloon button she had first never got pulled out. The balloon button did once though. It got my adrenaline pumping a little but we got it back in and cleaned up the giant smelly mess and everything was fine.
Then she got the GJ tube and I was given an even scarier "what to do if the tube gets pulled out" speech since a GJ tube can only be placed in Interventional Radiology (IR) and they work normal business hours and probably don't enjoy being called in for emergencies on nights & weekends. I was extremely (and possibly overly) careful with her GJ tube. That little sucker was taped firmly in place so there was no chance of it twisting and we kept her under pretty tight supervision. Then I broke it. That time, it WAS as giant of a pain in the butt as I had expected it to be since we had to be squeezed in to IR's packed schedule for the day but it still wasn't anything to panic over. Just threw a wrench into my day and the radiologist's day and our nurse's day who had to call & get us in to have it replaced.

I don't remember when it occurred to me that it is possible for a G tube balloon to just spontaneously pop, but for a while now I have been slightly paranoid that it would pop at night, come out of her stomach, and her stoma would close before we discovered it in the morning. Luckily our first (and hopefully ONLY) balloon popping incident didn't happen that way though. :)
I put her in bed for a nap today and a couple hours later when I got her out, there was a big wet spot in her bed. I sniffed her breath to see if it smelled like formula puke/spit-up and it kind of did but not really. Then I smelled the sheet to see if it smelled like formula puke or just her sweaty little head. It smelled like neither but it definitely had a funky smell. Then I laid her down to change her diaper and what should flop out from under her little t-shirt but her entire G tube still hooked to the extension that was taped to her belly. Awesome. The balloon has a big huge hole in it. Not really even a hole, it just looks like the whole bottom half of it blew apart from the top half:
Once I saw it, the little voice in my head told me I should be panicking, but it takes a lot more than a popped G tube to make me panic these days so instead I told Raya to hold still and not move while I went to get the replacement tube that we just happened to have, thanks to our wonderful nurse. :) When I came back, I did start to worry a little because I realized that I had no idea how long her tube had been out. (For those of you who aren't familiar with G tubes & stomas, having a tube come out and not knowing about it is a bad thing because the stoma (hole) can start to close within 15-20 minutes kind of like if you leave your earrings out for too long. If the tube doesn't fit when you go to put it back in, it can require surgical intervention.)
Anyway, I crossed my fingers and started poking the tube into the hole. It didn't fit. Oh dear. I poked harder. Still didn't go in. I almost called the nurse (who hasn't gone into labor yet so she's still working, thank goodness) but then I decided to try one more time. I told Raya to hold still and pushed harder, and luckily on the third try it went in. I said, "Whew! There you go." Raya said, "Dee-dyoo, Mommy." I said, "You're welcome," inflated the new balloon, flushed water through it, and sent her off on her merry way. I think once the replacement tube comes, I'll use the popped one to make her a stuffed animal with a G tube. :)

Monday, September 5, 2011

Adios, Amitriptyline!

And don't let the refrigerator door hit you in the butt on the way out! Raya had her very last dose of amitriptyline last night. As I drew up that 0.1ml of clear liquid in the syringe, I had 2 thoughts. #1: What in the heck kind of difference does 0.1ml of ANYTHING make?? (Just FYI, 5ml is 1 teaspoon, so for comparison's sake, 0.1ml is a teeny tiny fraction of a teaspoon.) Thought #2: Sigh, we've come such a long way since we started her on this stupid but wonderful medication...*sniff sniff*
I've always had a love-hate relationship with amitriptyline. One of the GI doctors started her on it when she was in the hospital for 2 weeks last October. She had just gotten her GJ tube and we were only expecting to be there for 2 or 3 days at the most, but then she started vomiting huge amounts of bile so we ended up being there for a lot longer. Anyway, she was puking her little guts out morning, noon & night even though she wasn't being fed into her stomach anymore so the doctor said that he wanted to try putting her on amitriptyline. It's commonly used with kids who have had a fundoplication surgery (aka Nissen or fundo) because gagging & retching are common side effects of that surgery and the amitriptyline helps relieve those symptoms. At that point, I was willing to try just about anything so we could get the heck out of the hospital to help Raya feel better.
It didn't seem to do much right away but he said it might take a while for us to notice any real difference.
It did take us a while (as in several months) to get the dosage adjusted to a point where we really started to see a difference. Raya's GI doctor is fairly conservative in her approach to giving medications and has always started Raya off on a small dose and increased it as needed. About 4-5 months after she started on the amitriptyline, her vomiting started to decrease to the point where she not only stopped vomiting first thing in the morning EVERY single morning, but she wasn't even vomiting every day anymore. Then the next thing we knew, we had gone for almost 3 months without her throwing up. I credit the changes to striking the right balance of her medications and her body learning to cope with things better. So yes, I'm very grateful for amitriptyline and her other medications that have finally made her stop throwing up ALL the time. (and so is the washing machine :)

That being said, I am SO glad we're done with that stupid medication!! Amitriptyline made me nervous. For starters, it has to be compounded, so it can only be made at certain pharmacies. Second, it's only stable for 14 days at a time so it has to be made every 2 weeks. Third, even though the doctor wrote the prescription to allow some extra in the bottle, the pharmacist refused to give us more than 9.1ml at a time. That's not even 2 teaspoons! It was the EXACT amount for 2 weeks and didn't take into account the possiblity that somebody might accidentally forget to tell somebody else that they had disconnected Raya's tube and the somebody else unknowingly squirted all her meds straight into the bed. Twice. (sorry Donny) Or the fact that some of it would stick to the sides of the bottle no matter how long you turn the bottle upside down. It was very frustrating. Then there was the part about how it's a neuro-transmitter and therefore can't be stopped abruptly without the risk of serious side effects. That always made me nervous because what if there was an emergency and we couldn't get a refill of it?
So now that I've made a very short story very long, I am SO happy to have her off of one of her medications and happy that we'll be starting to wean her off of another one very soon. Yay for less medication. :)

Thursday, September 1, 2011

First trip to the dentist

Raya got to have her first dentist appointment today. She's starting much earlier than any of the other kids did but the other kids didn't throw up 4 or 5 times a day for 18 months. :) Ashtyn (our oldest) spit up like nobody's business but she didn't get her first tooth until she was 14 months old so it wasn't an issue with her. Anyway, the 3 older kids had appointments to get their teeth cleaned today so when I checked in, I told the receptionist that I wanted to schedule an appointment for Raya to get hers cleaned. She checked with the hygienists and said that we could just do Raya's today too if I wanted. One less appointment to drag her to? Yes please!

I had no idea how it would go. She's rather unpredictable these days. She LOVES the GI doctor's office now but the dentist's office was a whole new environment with a lot going on so she had NO desire to lay still and let somebody touch her mouth. She sat on my lap facing me and laid her head on the hygienist's lap while I held her down. Good thing I'm used to things like that. :)

Raya really has come a long way. If someone had attempted to put a toothbrush (or anything) in her mouth against her will a few months ago, she would have puked on them. She was clamping her lips shut but the lady was still able to get a pretty good look at her teeth, brush them, and put fluoride on them. I had to bite my tongue when she was telling me how I need to brush her teeth at least twice a day and that I really need to be using toothpaste on her. Obviously that's the ideal situation and yes, I should be doing that, but coming from where we're coming from with Raya, it's pretty much a miracle if she lets me put ANYTHING in her mouth. I politely nodded and told the lady that we're doing our best to work towards that point but that it has to be on Raya's terms. Luckily, Raya likes to chew on her toothbrush and does it several times a day anyway.

Raya was a little more afraid of the dentist than she was of the hygienist. She held pretty still but she clamped her mouth shut pretty tight and didn't want him looking in it. After we had gone over her medical history, he was expecting the worst for her teeth. He said that a lot of kids with reflux/vomiting problems like Raya has had end up with decay on the back of their teeth but hers look great. Whew. We finally caught a break on something! :)

I was too occupied with holding her down to take a picture of her at her first dentist appointment but here's a picture from her breakfast today:
Maybe we need to start brushing between her toes too. :)
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