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The rest of the week

We have learned some valuable lessons this week. Of course they were things we already knew but sometimes a reminder is a good thing. (and this will be very long and I don't expect anyone to read the whole thing, it's mostly for my own memory.)

I already wrote about the bizarre experience I had Monday afternoon but the day really didn't get any better from there. Dinner started out fine but turned ugly really fast. We were having roast beef and potatoes with the rest of the leftover breadstick/biscuit things from Sunday, so I made Raya a baked potato in the microwave and let her have some of the corn from Sunday's dinner. She didn't want potato. She ate all the corn that was on her plate (about 1-2 tablespoons) and asked for more corn. Donny told her she needed to eat more potatoes first and then she could have more corn. She didn't like that answer and cried & whined about it but eventually ate another bite or two of potato, so Donny put some more corn on her plate. She burst into tears. We were confused. She cried and cried and cried. Everyone else finished dinner, left the table, and cleared their dishes and she just sat there and cried. She wouldn't talk to us though, so we couldn't figure out what her problem was. Instead of engaging her, the rest of us went about our business and left her alone. Eventually we realized she was quiet and found her asleep on the floor next to the table.

A few minutes after that, she woke up and was still angry. I finally did get her to talk though, and it turns out she was upset because Daddy didn't put ENOUGH corn on her plate when he gave her more corn. You wouldn't think that it would have taken 45 minutes of crying, a brief nap on the tile floor, a few more minutes of being angry, and some desperate coaxing from Mom to get that tiny little bit of information out of her but it did. Lesson learned: Just because a child is verbal does not mean he or she can express him or herself adequately, especially under stressful or emotional circumstances, and the problem may not always be what you think it is. 
It ended up being kind of a long night for me with her. She wasn't happy. She wouldn't let us take her backpack off of her so she kept falling asleep on the floor in awkward positions that couldn't have been comfortable. She'd lay there for a few minutes and then start thrashing around and crying, and then go back to sleep. She didn't want us to touch her and would get more angry if we talked to her. We did finally take her backpack off and then after a few more of those little outbursts, she went to sleep again and stayed asleep. When she's like that at night, it's really hard for us to tell if her crying & thrashing around is from being upset/emotional or if it's from pain. It is SO frustrating to not have a good way of knowing that. We didn't dare touch her once she had stopped waking up so she slept on the floor until sometime in the middle of the night when she made her way to the floor next to my side of the bed.

Since the kids were off school Monday, that made Tuesday a little crazy since it was the first day of their school week. I didn't think Raya was going to make it to the preschool class at my friend's house that she goes to on Tuesdays because she was still sound asleep at almost 8:00. After the night we had, I was NOT going to wake her up! Thankfully, she did wake up and was in a delightful mood and very sweet. She was tired but happy as she picked out some of her new birthday clothes from the grandmas and got dressed. She is very much in a skirt phase and was giddy over wearing a new skirt to preschool.

I dropped her off at 8:45 (only half an hour late, not too shabby) then came home in time for a quarterly meeting with her support coordinator. (i.e. the person from the state agency who is in charge of coordinating all of the authorizations for her therapies & all that good stuff) Imagine how silly I felt when I said something about Raya being at preschool and she told me that Raya was supposed to be at the meeting... Oops. Lesson learned: Kid receiving services must be present when support coordinator comes. :) I'm sure I probably knew that too but since I'm usually WITH her when she's not at home, it's never been an issue. We discussed everything we needed to discuss and then took a quick drive over to my friend's house so that the support coordinator could see Raya, and that was that. I have to say, as much as I was disappointed when our previous support coordinator was replaced by a new one because Raya had turned 3, I have really grown to appreciate this new one too. Our old one was so sweet and kind and made sure that we were well taken care of. The first meeting or two that I had with this one left me feeling a little bit frustrated, but I really feel like we are on the same page now and this was probably one of the most helpful meetings I've had with ANY of her support coordinators since she started getting services. I've more or less forgotten the rest of Tuesday but the important thing that I forgot to do on Tuesday was pick up the refills of 3 of Raya's medications from the pharmacy. We weren't out yet, but I meant to pick them up so we wouldn't run out and I forgot.

Wednesday morning I woke up at 6 to the beeping feeding pump. It should not have been beeping at 6, it should have been finished by 1 or 2, at which point I would have turned it off and disconnected her. When I looked at the total volume, it said she had been fed 1345ml of formula which I knew was wrong because I had only put in 960ml. Silly pump. I don't know what made it do that but my best guess is that there was a small kink in the tubing that restricted the flow but didn't create enough pressure in the tubing to make the pump alarm. It's happened before and if it happens again, I am trading it in! I asked her if her tummy was full (since it said it had just fed her 3 ounces) or if she was ready for formula and she said she had a full tummy. I decided to vent her to see what was in it. At first, nothing came out so I got a syringe & gently pulled back to see what was there. I got a lot of slobber but I also got a small piece of the bite of cupcake that Raya had sneaked from the freezer the night before. ONE bite of cupcake and there was still a recognizable crumb of it in her stomach the next morning. Not cool. I'm trying to teach her to be aware of how her stomach feels and part of that is showing her that I trust what she tells me, so I gave her the choice of getting a little bit of formula before school or wearing her backpack to school to get a full feed. She chose to get a small amount by syringe so that's what we did. She had 2 ounces and then went to school. Her teacher said that when it was snack time, Raya ate and ate and ate and then she eventually had to cut her off because they needed to move on to other things. It would be better if she had been eating something other than potato chips but she did get a good amount of calories in by mouth that day, and that's a good thing.

When it was bedtime Wednesday night, Raya went to bed but kept tiptoeing out of her room. We were in the living room and could see her trying to stealthily go back and forth between her room and ours without getting caught, but we couldn't tell what she was doing. Later in the evening, I went to see if she had ever made it back to her bed and found her sound asleep on the floor inside the doorway of our room with her Jake & the Neverland Pirates book. 

Thursday was supposed to be my day to get caught up on things and FOR SURE remember to pick up Raya's medicines at the pharmacy. It turned into a long and busy day and none of what I needed to do got done. I babysat for a friend that morning for a little while (which was not a big deal at all, it gave Raya something to do) and then spent most of the afternoon on the phone with the mail order pharmacy that our insurance requires us to use for certain prescriptions. I always feel the need to start out by saying that I am eternally grateful for prescription insurance and can't imagine the world of hurt we'd be in without it. That being said, the hoops they make us jump through are ridiculous sometimes. (not to mention self-serving) The company that carries our prescription coverage also happens to own/operate the mail order pharmacy that they require us to use for any "maintenance meds" that are taken on a monthly basis. This is a giant pain in the butt for me and a HUGE source of stress, as most of Raya's meds have to be refrigerated and we have had problems with them delaying shipping meds, not notifying us that there was a problem with an order, and having a med that was supposed to be refrigerated show up on our doorstep at a warm 67 degrees. The other huge problem I have with this pharmacy is that they refuse to bill secondary insurance, which means that the copays for any of Raya's meds that are filled by them have to be paid out of pocket and then I have to file paperwork to get reimbursed by her state insurance that picks up her copays. 

What started this was that I had gotten a couple of very vague form letters in the mail that simply said that they wanted to make sure that we were aware that we had the option of using the mail order pharmacy and that for some medications, there would be a limit of 2 refills at a retail pharmacy before the insurance would stop paying for the meds. (we learned last October that if we were to continue and refill at the retail pharmacy and the primary insurance refused to pay, the secondary insurance would also refuse to pay) The letter did NOT say that we had filled anything that needed to be switched to mail order and didn't say anything specific at all that would have tipped me off to a problem if I hadn't already been through this whole mess a year ago with them. I decided to call and find out if there was anything that needed to be moved, and it's a good thing I did or else I would have had about a $500 rude awakening the next time I tried to refill the 2 meds in question at our regular pharmacy. 

The person I talked to gave me a bit of a heart attack. After I explained to her that I had gotten some vague, generic letters and wondered if there were any meds that needed to be moved to mail order, she looked up Raya's account and said, "Yep, looks like there's several that will have to be moved." She started listing off the meds under Raya's name and pretty much listed all of them, including the ones that have to be compounded and are only good for 30 days at a time. Since this pharmacy has a 2 week turnaround time and wants 90 day supplies filled at a time, that obviously will not work, let alone the part about how much they stink at keeping refrigerated meds cold in transit. I started to say that and she said, "Well, we are able to do compounds too so it's not a problem." Ok, chick, glad it's not a problem for you but it's a problem for me! Thankfully she must have seen something in her computer that told her I was right about the compounded meds needing to stay at the retail pharmacy, but there were 3 that she said would need to be moved. One of them is the ulcer med that we only use occasionally when she bleeds from her stoma because of irritation in her stomach. We hadn't even ordered that one once since January so since we still have 2 allowed retail refills, I'm not moving that one. So there. The other 2 were her Nexium packets and her Periactin, both of which we NEED. (ok, the jury's still out on periactin but it's good for a year after it's been filled so I want to have it on hand.) 

The letter I had gotten said that if you had a maintenance med that needed to be filled by mail order, all you had to do was call and they could get in touch with your doctor's office and get the prescription moved for you. Apparently that was a load of crap too because she told me she couldn't do it and that I'd have to do that myself. I asked her if it would be better to have the doctor's office call them in or fax them, and she said it would be faster to fax them but that the nurse would have to call a certain phone number in order to be given the fax number and instructions for faxing. So now, not only do I have to call and ask the nurse to send new scripts in to the mail order pharmacy, I have to tell her to call the pharmacy and jump through their stupid hoops to do it. Annoying but no way around it, and it will still take 5-8 days to get the prescriptions processed. Fingers crossed that we don't run out of Nexium before then.

The part that really got me was when I told her that it is really not helpful at all to get some generic letter that doesn't actually tell you that you have an active prescription that will have to be moved to their mail order pharmacy. She told me that sending a letter with any kind of detail like that would be a violation of HIPAA. I think that's a load of garbage. All they would have to do is send a letter that says, "Our records show that you have filled a prescription that is subject to the retail refill limitations in your benefit plan. Please call as soon as possible for more information." See, now THAT would be helpful and in no way does it violate HIPAA. I also asked her if I would be notified when the prescriptions had been processed so I'd know when to expect them and she told me they don't do that because that would violate HIPAA too. Um, really?? I asked her why it is that every pharmacy we've ever filled meds at can call or send me a text to let me know that something is ready to be picked up but they can't let me know that an order has been processed. Her reply was that she couldn't tell me what regulations those pharmacies were subject to but that they are governed by federal HIPAA regulations and they can't notify patients that something has been processed. I think they just don't want to bother with it so I'll be calling them every day until they tell me it's been shipped so that I know it's actually coming. The first time I ordered something from them there was a problem with the order and they didn't call to tell me, so I ended up having to pay for a short-term supply from the retail pharmacy because of the mail order pharmacy's mistake. Ugh. So yeah, long story short, I hate having to use a mail order pharmacy and it took up my whole afternoon between talking to them and getting a hold of the GI nurse to explain it all to her. Thankfully she was able to get everything faxed off by Friday morning so we should get the meds before we run out. Lesson learned: Always call the ______ mail order pharmacy whenever Raya is prescribed a new med and ask if it's subject to the retail refill limit because the pharmacy/insurance won't bother to tell me and I'll end up having to find out the hard way. $$

AAAAAAAND once again, I forgot to pick up the stinkin' refills of the other 3 meds from the retail pharmacy. I had used the last dose of her sleep medicine on Wednesday night because I was sure I would remember to pick up the refills on Thursday. {Note: I don't like to talk about the sleep medicine. It's a very easy subject for people to judge and criticize, but until you've had a child who cannot fall asleep without help and none of the natural/homeopathic/hands-on methods have helped, you have no idea. I'm including this because I want people to understand that using medication to help a child sleep when nothing else has worked affects them positively in many ways and is by no means just an easy way out for the parents.} I realized at 5:15 that I had once again forgotten to pick up the medicines at the pharmacy. It closes at 5:30 but there's no way I could have made it there in time. I had a list of things I needed to get done after the kids went to bed but I knew right then that the list was going out the window because Raya would not be going to bed.

I sent all 4 of the kids to bed at the normal time and hoped that maybe Raya would be able to go to sleep anyway. Right before I sent her to bed, I got the last few precious drops of medicine out of the bottle (less than 1/3 of the usual dose) in the hopes that it would somehow magically still work. An hour later, nobody was asleep because Raya wouldn't leave them alone. She wouldn't stay in her bed, wouldn't stop talking, wouldn't stop playing with toys, wouldn't stay out of their beds, etc. I had her bring her pillows & blankets to the couch and told her that I needed to finish up some work on the computer and then I would snuggle with her. (I thought maybe snuggling would get her to hold still long enough to fall asleep.) I had relaxing music playing on Pandora and the lights were off, but neither of those things helped either. I was trying to finish editing a photo session but I had to stop when she yelled for about the 8th time, "Mommy, are you gonna SNUGGLE me here or NOT?!" So I gave up on meeting my Friday morning deadline and tried to snuggle her. She could NOT hold still. There was not a single part of her that wasn't wiggling for the first hour that we laid on the couch. She had about 8 stuffed animals (mostly beanie babies) that were climbing all over me and talking the whole time. 

It's hard to explain the way she is when she doesn't get her sleep medicine. Where most kids start to wind down when they get close to bed time, Raya gets more and more alert and wound up. She will tell me over and over that she's tired and wants to lay down, but it's like she has restless leg syndrome in her entire body. She just can't make her mind and her body be still long enough to go to sleep. It's frustrating for me so I can only imagine how it feels for her. The few drops of medicine that I had given her must have helped at least a little bit because she fell asleep shortly after 10:00, which was much earlier than I had anticipated. I was hoping she'd sleep a little later on Friday morning to make up for the 3 hours of sleep she had missed but she was up between 6:30 and 7. I didn't have time to ask her teacher how her behavior was at school, but it was so clear to me that she had not had her medicine the night before because she was a MESS. Her attention span was literally 3-5 seconds long and she jabbered nonstop all morning. When I picked her up from school, she looked tired but she was jumping and running around in her classroom. Instead of walking to the car like we normally do, she ran all the way through the school and wouldn't let me touch her hands. (that's one of her little sensory quirks that gets worse when she's having a bad sensory day) Where I normally would only have to say something to her once, I was having to repeat myself several times, like when she was running & jumping towards the parking lot and I told her to wait for me. It was like she couldn't even hear me. The way she was acting is very much like when a toddler is tired and is doing everything they can to fight going to sleep. 

Because of the way she was acting, I thought for sure she'd fall asleep in the car on the way to therapy and I dreaded that happening because of how poorly her last session had gone. Instead, she talked 100 miles a minute all the way there. "Mommy! Look at those pink flowers! Oh, PURPLE flowers! Wow, look at all those birds! Wow, there's a spiky tree! Are those baby birds or grown-up birds? I think they're baby birds cuz they're small. MOMMY! Are you LISTENING to me?! Are those BABY BIRDS or are they GROWN-UP BIRDS?!" Allllllll the way to therapy. Oh, and I forgot to mention the mood swings. (Probably not helped any by periactin.) We got out of the car and again, she wouldn't let me hold her hand like I usually do. Again, she was running everywhere instead of walking, so she ran from the car to the sidewalk (about 10 feet) and then ran from there to the first bush she came to and stopped to shout, "OH, PURPLE FLOWERS! *tee hee hee*" Then she ran to the next bush about 3 feet away and did it again, and repeated the process at each bush between our car and the door of the clinic. She almost ran into a lady that was walking out as she was making a mad dash for the handicapped door button. It had taken us a couple minutes longer than usual to get there so her therapist was ready for us when we got there. She ran all the way to the feeding therapy room and only ran into a couple of things along the way. 

When we got into the room and she finished washing her hands & saw what I had brought for her to eat, she was not happy. I knew she wouldn't be but I brought it anyway. I had ground some pork and cooked it with a little salt & pepper and then made her some refried beans. Both of those things are things she's had within the past 2 weeks and liked, so I thought maybe she'd eat some. I also brought a banana and raisins. She didn't want ANY of it. She sat in her chair and pouted, and then demanded that we let her play a game on the iPad. Her therapist and I both told her that once she had a bite, she could start playing a game, and we gave her the choice between a bite of pork, a bite of beans, or a bite of both mixed together. She didn't want any of it. After about 10 minutes, she got out of her chair and came to get a hug from me. Then she climbed on my lap, so I pulled her plate over in front of me. We continued trying to get her to taste the food. It's been such a long time since she flat out refused to have a taste of something that it was kind of surprising to see how determined she was not to taste it. She decided that she wanted the bag of raisins, but we had to stand our ground on the beans & pork, so once she kissed the food that was on the fork, she got to have a raisin and start playing the game she wanted to play. When she asked for more raisins, she had to give the fork of food another kiss. {the purpose of that is 1. so that she is still doing what was asked of her, and 2. so that we are letting her come down a couple notches to where she is comfortable since the food we were presenting was a new texture for her. She still gets a taste but doesn't have to have it in her mouth if she's not ready to.}

It was by far one of the worst feeding therapy sessions she's had in a LONG time. She protested everything we did, sat on my lap the entire time (which has never happened in 3 1/2 years of feeding therapy), and ended up eating a grand total of about a tablespoon of raisins in the 45 minutes that we were there. On the bright side, she did drink a good amount of water (probably 2-3 ounces). Truth be told, my ulterior motive was to get her to try the raisins. I knew she wouldn't want the pork, so I thought maybe if it was a choice between pork and raisins, she might try the raisins and my little plan worked. The down side was that I think she still came out of it feeling like she had beaten me at her game, but oh well.

The whole time we were in feeding therapy, I was watching the clock and counting down the minutes until it was time for her to see her OT, who I hoped could help bring her down out of the clouds a bit. It's hard to even put into words how she was acting but she was just in constant motion and had zero attention span and was not nearly as cooperative as she is capable of being. She wore both of us out. When we were done and had cleaned up, she ran out of the room and to the front of the clinic because she thought she had seen & heard her OT go that way. We found her and started heading out to the room we do OT in. Raya, of course, was way ahead of us and wouldn't wait. When we walked outside, she was hanging from a bar on the little playground. She NEVER goes for the playground even though we go past it every time we go from FT to OT, but she was craving motion so she was swinging from the bar. Just as her therapist said, "Raya get down, you're going to hurt yourself." she fell off and ended up on the ground. Lucky for her, she wasn't very high off the ground and was fine. Then she RAN to the goat pen to pet the goat with the crooked neck, then she RAN back to the sidewalk, then she RAN to the door, then she RAN inside, climbed on the stool next to the ball pit, and flung herself into the ball pit. All of that took place in about 20 seconds. Although she was happy as could be all the way through her OT session, she continued to have zero attention span and gave her therapist a run for her money. 

On the way home from therapy, we FINALLY went to the pharmacy and picked up the medications I had been forgetting to pick up all week. By the time we got there (about 7 minutes later) Raya was out cold. I love that this pharmacy does a good job with her medications and that their employees are all MUCH nicer than the really rude pharmacist at the place we used to go, but I really hate their business hours and that they don't have a drive-thru. They do have really nice syringes though so I pretty much forgive them for having to drag Raya in with me every time I pick anything up there.

I had hoped that she'd stay asleep once we got home but she didn't, and she was nice & crabby. You know your kid has sleep issues when SHE asks for her nigh-night medicine. She was more than happy to swallow her dose and I was ready for her to take it by the time it was time for it. The interesting thing was that I expected her to be back to her normal self after getting the normal dose Friday night and having a full night's sleep, but she wasn't. It actually took a couple of days before she was really back to her usual self. Another lesson learned: don't forget to pick up refills at the pharmacy!

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