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**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**

Thursday, November 28, 2013

Happy Thanksgiving!

Happy Thanksgiving from 3 of my little turkeys!

Tuesday, November 26, 2013

Great deal on Blendtec!

If you need a good blender for blenderized diet or just to make awesome smoothies, soups, and all the other fabulous things a Blendtec can do, then you will want to check out the smokin' deal on Amazon right now. They have one model of the Blendtec on sale for 50% off, which makes it $299 instead of $599. Not sure how long the deal will last but I thought I'd share it anyway!

Click here for the $299 Blendtec deal on Amazon!

Friday, November 22, 2013

My girl is growing up ♥

Sometimes I look at pictures of Raya as a baby and I can't believe it's been 4 years already. (just like I can't believe it's been 10 years, 8 years, and 6 years since my other 3 were babies)

Since she's still the baby of the family and has required a whole other level of care than her brother & sisters, sometimes I forget that she is turning into a big kid. (even though she reminds me often) Every now and then, I catch a glimpse of her doing something or hear something that she says and can't believe how grown up she is lately.

On Wednesday I went to pick her up at school and the teacher from the classroom next door saw me and came out of her classroom. She asked me if I had seen the pictures on the bulletin board of the kids playing in the leaves and took me around the corner to show me. She had been in northern AZ and had brought back 9 garbage bags full of leaves for the kids to play in since there aren't really any fall leaves around here. She was so excited to show me the picture of Raya because she said Raya and one other little boy from her class were the first ones to jump in the pile of leaves and she loved how excited Raya was.
Future long jumper, perhaps? :)

She has finally gotten the hang of riding a tricycle. At OT today, she was an endless ball of energy so instead of relaxing the last 5 minutes of her session, she rode the tricycle around. She used to have a lot of trouble with pedaling because one leg would push harder than the other, so she went back & forth a lot. The only part she has trouble with now is pedaling while she's turning. She's still learning how to adjust how hard she pushes on each pedal while the handlebars aren't straight.

Her therapist and I watched her pedaling around and neither of us could help but comment about how big she's getting.

Other times it's the things she says that get me. All of a sudden in the past week, her R sounds are SO clear. She is making so much improvement in her speech articulation lately that sometimes when she and Kaida are in another room talking, I have a hard time telling who is who. My parents are having a harder time distinguishing between them on the phone too. It's pretty exciting to see progress like that.

She is a smart little cookie. We had a little incident with running out of her sleep medicine last week and apparently it made an impression on her. The day I picked up the refill from the pharmacy, she kept asking me all afternoon if it was time for her sleepy medicine yet. I kept telling her no but didn't really think much more of it. Then she kept asking around dinner time every night this week if it was time for it yet. I thought maybe she was just asking because she likes to take it by mouth, so tonight I asked her. I said, "Raya, do you like taking your sleepy medicine because it tastes good or do you like it because it helps you go to sleep?" She said, "Because it helps me go to sleep. I don't like it when I can't go to sleep." Smart little kid. I don't think she likes how out of control she starts to feel when she knows she's tired and wants to go to sleep but her body and mind won't let her. I still think part of the appeal for her is that she likes taking it in her mouth, but I wholeheartedly believe that she is starting to learn what these medicines are and how they make her feel. Another example that has really surprised me lately is that she does not like it when I give her periactin. She has never tasted it before and I would never make her taste it. Just the smell alone is enough to convince me that it would be mean to make her take it by mouth when she has a perfectly good G tube to put it through. That's why I was so surprised the first time she said, "I don't like that medicine!" as I was drawing it into the syringe one day. I thought she was just confusing it with one of the others that she asked to taste one day a few weeks ago that is black licorice flavored (whose brilliant idea was that, making a child's medicine black licorice flavored?!) and that that's why she said she didn't like it. I gave it to her through the tube with her other meds as always, despite the protests. The next day, she told me the same thing, and she has said it every day since then. It's still hard for me to believe that a 4 year old could deduce that a certain medication is responsible for making her feel a certain way that she finds unpleasant, but Periactin has not been very pleasant for any of us and I'm starting to be more and more convinced that she KNOWS it makes her crabby, tired and hungry and does not like feeling that way.

She also does not like having a yucky cold. She's been feeling a lot better today but is still pretty congested. Yesterday I let her veg out all day long and watch a lot of cartoons. She loves watching things on Netflix on the iPad. I think it's because she can control it herself and she's learned her way around the iPad pretty well.

I also do not like it when she has a yucky cold. I have been blown away by how quickly she completely lost interest in food this week. That is hard for me to deal with emotionally because it reminds me that being able to continue to eat while she's sick is just one more obstacle between where we are now and being able to get off of the feeding tube. 

Speaking of feeding tubes, I kind of wished I had one on Wednesday. Then I would have been able to avoid drinking this:
 I had my glucose tolerance test. The drink doesn't taste bad but it burns going down and you'd think it was carbonated but it's not, it just feels that way because it's so sugar-laden. Yuck. Thankfully I passed this time and I won't have to do the 3 hour one like I did when I was pregnant with Raya. :)

Tuesday, November 19, 2013

caught a cold. meh.

Hangin' out on the couch with a stuffy nosed girl tonight. I hate germs.

Monday, November 18, 2013

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!

Friday, November 15, 2013

A strange conversation

I've been stewing for a few days now over whether or not to post this but I decided that it may help someone so here it is. (and for the record, I have no ill feelings towards anyone involved and I'm not upset or emotionally scarred or anything.) Monday, the kids were out of school for Veterans' Day. I had several things planned for the day (including dragging the older 3 to the grocery store with me) but then changed plans suddenly when I found out that a friend from my childhood was in town for the day. She invited us to meet up with her and some other friends for lunch, so as soon as Raya's respite provider got here, the other kids and I loaded up and went out for tacos. She and I have been in contact quite a bit in the past couple years as her youngest son has struggled with some mysterious food allergies & GI issues. She has emailed & called me for suggestions & support and she has been a great support to me as well in the past couple of years. She is one of the most well-rounded and interesting people I know and I look up to her for many reasons, so I was excited to see her. (did I mention she lives clear across the country and that before meeting up with her once a summer or two ago, I hadn't seen her since I was in grade school?)

The kids & I got to the lunch place and said a quick hello before going in to order food. They had arrived before we did so they were already eating. After the food came, I got the kids squared away at one table and then sat down with my friend and the couple that had come to see her. Introductions were made and included a brief explanation of how we all knew her. Being that one of our connections was the health issues both of our youngest kids have had, that was one of the things that was brought up. This is where things went a little odd. As I always do when someone asks, I gave a brief summary of Raya's medical history, including being tube fed, having multiple food allergies, and an extremely limited oral intake of a very limited number of foods. More questions were asked and I answered them. My friend and I caught up on each other's kids' dietary issues a bit, and it was mentioned that Raya had been taken off of food completely and had been either solely or primarily on formula for the majority of this year. My friend's friend said, "Did you say she's been on formula for a year?" To which I replied, "No, she's been on formula since she was 2 months old but for the last year she's been on almost nothing BUT formula." Her reply was, "Oh. All those formulas are SO toxic."

Now I have had some interesting conversations in the past 4 years, and by interesting I mean conversations that stretched my ability to listen to someone else's opinion with an open mind without allowing myself to feel like I was being judged and without judging in return, but this was by far the most bizarre, probative, invasive, and judgmental conversation I have had with anyone since Raya was born. Her comment caught me completely off guard. It wasn't just the words she said, but the tone with which she said them. Authoritative, matter-of-fact, I'm right & you're wrong, and probably a few other adjectives that are escaping me right now. I had come to this little restaurant to have lunch with a friend that I've seen once in the past 15-20 years, not to discuss the merits of formula. I knew as soon as she said that all formulas are toxic that this topic was not going to be a positive one, so I shut it down as politely as I could. I paused to figuratively pick my jaw up off the floor and with all the politeness I could muster, I said, "You know what, we're not going to have this conversation because formula is the only thing that has kept my child alive for the last 4 years, so we're just not even going to discuss this."

I am so grateful for my level-headed friend, who was not shocked by her friend's comment and has also had the unfortunate experience of having a child who is older than the typical age at which kids no longer drink formula being dependent almost entirely on formula. She was kind enough to interject with her experience with formula, which gave me a chance to quietly eat my gordita and try to wrap my head around where the conversation had gone. I don't even remember how the entire conversation went from there, but it became very clear immediately that this person had very strong opinions about health and nutrition and absolutely no qualms about sharing them.

Of course everyone has their own opinions and is 100% entitled to their own opinions. The problem was the attitude and tone with which the sharing of her opinions was done. She kept asking me questions about different aspects of Raya's care, like why she's not on any grains right now, whether or not her dysmotility is due to lack of digestive enzymes or poor nutrition caused by the toxic formula I feed her, if I breastfed her (and I did, right up until my breast milk made her sick and we had to switch to that horrid toxic formula that saved her life...), why I don't feed her this or that, and so on. After each question came a statement about her personal philosophy on that subject, and each one was delivered with an air of authority and superiority, which was probably worse in my mind than it actually sounded (maybe...) due to the fact that the things we were talking about were all things that have been major, long-term struggles for us the past 4 years, and have been largely or completely out of my control. I have done the best that I could (and I daresay the best that anybody could have) with what Raya's body has been able to tolerate and with what the medical community (both mainstream and some alternative) has been able to offer her. I have lived every day of the last 4 years trying to manage what nobody has been able to fix, and having a complete stranger suddenly grill me with detailed and personal questions and then follow each of my answers with an opinion that nearly always contradicted what I had said was insulting. (she even criticized my gordita and said that the gorditas at that restaurant are delicious but that I shouldn't have ordered it crispy because they're too hard to chew. really?!?) Just one example, my friend and I had both mentioned that our kids are currently not able to eat any grains because of allergies, and I had also mentioned that Raya has delayed gastric emptying/gastric dysmotility. Her response to that was, "Well, what most people don't understand about grains is that they're difficult for EVERYONE to digest." Ok, so are you saying that we just don't know what we're talking about and we just haven't given grains enough of a chance? That my friend should ignore the blistering eczema and I should ignore the bleeding diaper rash that wheat causes our children because eventually their bodies will figure out how to digest it? I'm sorry but it has nothing to do with the fact that grains are difficult for everyone to digest, it's a matter of their immune systems reacting with miserably painful symptoms when they are exposed to wheat, and whatever other foods they're allergic to.

I've said it a couple times before but I was so caught off guard by what was happening that I probably just babbled like an idiot when I tried to respond to her questions. (questions which I was trying my best not to solicit) I also had no interest in arguing, especially since this person was my friend's friend and I didn't want to disrespect my friend or ruin anybody's visit. Once I realized how the conversation was going to go, I tried to say as little as possible about anything because it was quite clear that she was going to disagree with anything I said. (imagine the horror if I had ever mentioned any of the medications Raya takes. I'm sure they're all horrible and "toxic" too!) I had come to have lunch with my friend and ended up really just wanting to leave about 10 minutes into it, but I was there to see my friend so we stayed until everyone was ready to go. We said our goodbyes and the kids and I left to head to the grocery store with my head still spinning.

My point in sharing this story is not to be negative towards this person. Clearly she has some deeply rooted beliefs and I don't fault her for that one bit. The fact that she is friends with my friend tells me that she is probably a wonderful and interesting person, she just didn't show me the most positive side of herself. My point in sharing this story is so that hopefully, someone will learn from it.

To all of you families of children with medical issues, know that at some point, someone will question the decisions you have made (whether or not they really were choices you had the liberty to make or not, such as our "choice" to put Raya on formula through a feeding tube or let her starve to death). Someone will say things about your child's medical care that will make you feel 2 inches tall, like you are the stupidest person on the planet, like you have irreversibly screwed up your child, like you're overreacting, like you have not done your research as you thought you had, like you've been consulting the wrong people by trusting medical doctors, and make you feel like everything you've ever done for your child was wrong. Even if they've never met you before and know NOTHING about your child other than what they've been told in a 30 second introduction and your child isn't even there. They will judge you unfairly and give you the urge to judge and second-guess yourself. Don't let them. Don't give them that power. Have confidence in the care that you give your child and the decisions that you have made (or that have been made for you out of necessity) and listen to the people who are knowledgeable about what you're dealing with and support you, not the ones that try to tear you down. Assume that people mean well and learn to let unsolicited opinions and advice go in one ear and out the other. Be respectful even when you don't feel that you're being respected. One of the best things that came out of this conversation for me was the realization that although this woman would have made me absolutely livid, hurt my feelings deeply, and had me in tears with the comments she was making if this conversation had happened 2 or 3 years ago, I am OVER IT. I was over it much faster than I thought I'd be, actually. I went to the grocery store, and then went home and told a couple of my closest "medical mama" friends what had happened (who I knew would understand), and then I was over it. For real. I now find it utterly amusing, actually, and I kind of pity her a little because I'm not sure that she realizes how abrasively she comes across. After 4 years of struggling with Raya's health, it was nice to realize that my skin is thick enough to make it through a horrible conversation like this without getting upset, lashing out, becoming overly defensive, punching anybody in the face, or beating myself up after it was over because of all the things I should have said or done differently and I walked away from that situation and honestly did not care what that woman thought. That is a really empowering feeling. I have nothing to prove, and neither does any other medical family.

To anyone who has a friend or relative who is caring for a medically complex child or has a chronic medical issue themselves, or even just meets someone and strikes up a conversation, please don't be like that. Don't be the one that digs at emotional wounds that come with being thrown into the life of caring for a medically complex child. There is nothing wrong with asking questions, but be mindful of the way you do it. Ask questions in the spirit of learning about that person's child and becoming more educated about whatever condition they have, not so that you can criticize or question whatever decisions they've made. The reality is that no matter how much you think you know, you do not know the details of their child's medical history the way that they do or what has gone into every decision they've made the way that they do. You have not sat in those hundreds of doctor and therapy appointments. You have not felt your heart leap into your throat when they see the nurse's phone number pop up on their caller ID. You have not felt the pain of the helplessness that comes with seeing their child stuck in a hospital bed day after day, wondering if you'd make it home in time to spend the next holiday with your whole family instead of being on isolation at the hospital. You have not pinned their child down for countless IVs, blood draws, shots, feeding tube insertions, dressing changes, x-rays, tests, or any of the other things they've done to their child. You have not had the heavy burden of deciding whether or not to try a medication that MIGHT help alleviate the miserable symptoms that keep them and their child awake at night, despite the possible side effects it could have. You have not been forced to learn how to perform medical procedures on their child like they have. You haven't flown across the country with their child so he or she could have specialized medical testing done. You have not had the difficult conversations they've had, been given the heartbreaking or frustrating news they've been given, or been faced with the impossibly difficult decisions they've had to make. The bottom line is that they don't owe you an explanation so don't try to make them feel like they do, and don't try to make them feel bad or wrong or guilty if the care of their child does not align with your personal philosophies. Unless they are specifically asking for your input, what you think really does not matter, so just do them a favor and be a good listener. If you have a burning desire to share something that you know that you believe may be beneficial, ask them if they are interested in hearing about it and respect their feelings if they tell you no.

Monday, November 11, 2013

4th Birthday Photo Overload

Raya had a lovely birthday on Sunday. We went to church, which she LOVES, played all afternoon, watched a Charlie Brown movie about the Mayflower, and had a little family party in the evening. I followed her around with the camera all day. *sigh* my baby is growing up...

Doing one of the things she loves best: stuffing dirt into a cap from one of her feeding pump bags

I ♥ this face!
After I made her change out of her pretty church clothes, we went out front and took a few pictures. Her auntie gave her this silk scarf for Christmas last year and she has decided recently that it is her cape, and she MUST wear it at all times. She LOOOOOOVES her scarf!
Aaaaaand then she pulls one of these on me:

I was in the kitchen working on dinner & cupcakes and turned around to see this:
She loves her Bubba!
Topping off her tank all by herself and trying to learn not to push the syringe plunger too fast
Play time with Daddy. Always loud & rowdy but pretty much their favorite thing to do.
Since it was Raya's birthday, we had what she wanted for dinner: tater tots, corn (with non-dairy, allergen-free "butter"), and bacon. She was so happy! The rest of us put cheese, sour cream & chili on our tater tots, which was delicious, and we had some biscuits too. Pretty tasty dinner. :)

After we cleaned up dinner, it was time for the much-anticipated chocolate cupcakes and coconut milk ice cream. Raya couldn't wait for everybody to have her special cupcakes! I was pretty excited with how everything turned out.
So was the birthday girl!
Girlfriend still can't make up her mind which hand she wants to eat with. On her birthday, it was her left hand.
I made some coconut milk ice cream in the Vitamix using canned coconut milk, sugar, ice, and vanilla. It was good and went well with the chocolate cupcakes, which did not taste like coconut even though they were made with coconut flour. I wouldn't have cared what they tasted like as long as Raya liked them. For months now, she's been talking about wanting chocolate cake for her birthday and I was worried/sad/stressed over thinking that I may not be able to deliver on that because of not having any grains in her diet right now, but thank goodness it worked out!
Kaida liked the cupcake & ice cream too :)

After dessert, she got to open her presents. She was so happy and so excited about every single thing and that made it really fun for everybody. She kept yelling, "OH, THIS IS MY FAVORITE! I LOVE THIS!" no matter what it was. Even the package of socks. :)

SuperGirl shirt for my super girl!

Both of her grandmas got her some cute new clothes. She modeled some of them for us and was SO excited about her new skirts. She's kind of in a skirt phase right now.

The kids got jammies on and played with some of Raya's new toys & read her new Jake and the Neverland Pirates book. (I can't stand that show but she LOVES it!)

I sure do love this girl! Happy 4th birthday, stinker pot! :)

Sunday, November 10, 2013

Happy 4th birthday, Raya!

In honor of Raya's 4th birthday today, I decided to post a few of my favorite pictures from all her birthdays. :)
Day 1
This picture makes me laugh. I was pretending to feed her a cookie.

Ready to go home

First picture together

First picture with the 3 of us (the other kids weren't allowed at the hospital because of cold & flu season)

A few days old

A few days old

Love the newborn smiles!

One of my all-time favorites!

First birthday:
First birthday, just a week after getting out of the hospital

And thus began her love of bacon... :)

No desire whatsoever to have anything to do with that cupcake!

1 year old, favorite toys=feeding tube accessories

The whole crew

The "O" face

Birthday girl

Second birthday:
Experimenting with food

Eating her beloved sour cream

Playing with her big brother (and they don't look at all related, do they :) )

Tasting the cake

Playing at the corn maze with Daddy

Third birthday:

Seeing her AMAZING Backyardigans cake for the first time

Eating a little bit of chili for birthday dinner

Excited about opening presents

More in love with a food item than I ever thought she'd be

Blowing out her candles

Eating her birthday cake WILLINGLY, and enjoying it!

There are just no words for cuteness like this. :)

Fourth birthday pictures to come...

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