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Monday, April 29, 2013

Why I hate normal test results

There are all sorts of articles floating around that attempt to lump the sentiments of all special needs parents together on certain topics. I'm not going to pretend to speak for all parents of children with special needs, but I need to explain something. When it comes to medical testing, "normal" is not usually what I want to hear. Over the last 3 years, I've had a similar conversation play out more times than I can count. A friend or family member will hear that we're about to have a test done and will wish us luck and say they're hoping everything comes back normal. Or they'll ask me how the latest test went and when I tell them that the results came back normal, they'll congratulate me. I can't exactly blame them because admittedly, "normal" sounds like a positive thing. Sometimes it's a VERY good thing. We've ruled out some scary things in the past. Normal is not always positive though, and here's why.
Yes, that is a totally gross picture of my sweet girl vomiting her little guts out like she used to do every night between 10 and 11pm. But all the tests were normal, so that means she's fine, right?

A child who vomits 600 times in their first year of life has a problem. A child who gags when they see a spoon has a problem. A child who suddenly drops off the growth chart and refuses to eat has a problem. A child who depends on massive doses of stool softeners, laxatives, and enemas in order to produce even a minimal bowel movement has a problem. A child who asks for Maalox for breakfast has a problem. A child who can vomit 6 hour old food has a problem. A child who never progressed from breastmilk to solid food and survives off of formula, gluten-free crackers, and chocolate chips has a problem. A child who breaks out in rashes from touching certain foods has a problem. A child who has diarrhea 4 or 5 times a day has a problem. A child who wakes up in the middle of the night with a mouth full of refluxed stomach contents has a problem. (are we seeing a theme here? and no, these aren't all Raya)

Symptoms like these are problems, especially after a myriad of remedies have been employed with no relief. (or not enough relief) When your child is miserable, has an ongoing problem that you haven't been able to fix, or is not progressing as they should be developmentally, you need to know what is at the root of the problem.

I woke up this morning with a bit of anxiety about Raya's upcoming impedance study. (She's being admitted in the morning for a 24 hour "sleepover" so we can measure her acid and non-acid reflux.) As the day has gone on, my anxiety has built. (and so has the level of acidity in my stomach. I need some of Raya's Tums.) My anxiety is one part PTSD at the idea of being admitted after staying out of the hospital for 2+ years (ok, 2 years, 4 months, and 15 days but who's counting) and two parts paranoia that the test we're about to do will come back "WNL" (within normal limits, one of my least favorite medical acronyms).

Her last impedance study, complete with RIDICULOUS tape job and arm restraints.
Really, the first part is completely silly of me. This is one admission where there would be no reason at all to have to stay longer than the planned 24-ish hours, unlike the times when she was admitted and we were told it would probably only be 24-48 hours & ended up being there from 5-15 days. We'll be in tomorrow and out on Wednesday, and there will be no needles involved. We've actually done this test at home before but this time it's slightly different & we have to do it inpatient. It will be more like a little mini-vacation for the two of us. Cable TV, a nice cafeteria, a PRIVATE ROOM (which we NEVER HAD any of the other times we were in that hospital), and no other kids to worry about for 24 hours. Totally not a big deal, but it's still a hospital admission. The paranoia part is because I'm trying to find a balance between allowing myself to hope that we'll get useful information out of this test and not getting my hopes up too high since I have come to automatically assume that all test results will be normal since they usually are. (that really should have been 3 different sentances but whatever)
Why does a simple hospital admission for a test give me anxiety? Oh yeah, because it might be COMPLETELY MISERABLE and give us nothing new to work with.
The point I'm slowly trying to make is that when you KNOW there is something wrong, the LAST thing you want to hear from the doctor is that the test you were really hoping would shed some light on the situation and point you in the right direction for treating the problem has come back WNL. When we flew across the country for motility testing a couple years ago and the doctors there told me that her manometry and gastric emptying studies had been "WNL", I was floored. How in the world could her stomach and intestines be functioning within normal limits when she's VOMITING all the time and has to be fed directly into her intestine in order to minimize calorie loss from said vomiting?!? We KNEW that something wasn't normal, and we were POSITIVE that doing those tests that we couldn't do at our hospital here would tell us what it was. That did not happen. It told us what it wasn't, just like nearly every other test she's had done has told us. Then there's the mommy guilt over subjecting her to test after test after test because we're just SURE that the next test will give us something helpful to work with.
Manometry testing

 So while a part of me really wants to believe that this impedance study will give us an accurate picture of what I feel is persistant, problematic GERD, there's a nagging, gnawing fear and anxiety that it will be within normal limits and we will be exactly where we are now, which is STUCK. And nobody likes to be stuck and feel stagnant and hear things like, "Well, just keep doing what you're doing and maybe things will improve with time." or "Hmmm...I'm not really sure what to do next." or the dreaded, "Well maybe she'll just grow out of it." (I could write another whole blog post about why I hate that statement but I won't. Not right now, anyway.) Things HAVEN'T gotten better, and she HASN'T grown out of anything, which is why we're doing the impedance study. And if the results do turn out to be normal, I will probably cry and I might even swear a little. But maybe this will be the time that the test isn't normal...But what if it is...But what if it isn't...

*sigh* So there you have it. An anxiety-driven diatribe about why NORMAL doesn't necessarily equal GOOD. Hoping for the best, preparing mentally for "normal", and crossing my fingers that we'll land somewhere in between.

Friday, April 26, 2013

TGIFridayyyyyyy!!

Normally I don't care that much when it's Friday. Don't get me wrong, Fridays are lovely, but it's usually not that big of a deal. Today though, I'm SO glad it's Friday. Donny didn't have to work until 4pm so he didn't leave at 5:30 in the morning like he usually does and was here to help get the kids off to school. I didn't have to take Raya to school, and Donny took her to therapy so that I could go take my midterm, which I totally smoked. (go me!) Now it's quiet and the kids are at least pretending to be in bed, so I can relax and attempt to catch up on some projects & house cleaning that have gone by the wayside this week while I was studying.

Raya has had a better week this week than she did last week. Wednesday morning, I walked into the kitchen and she looked up at me with puffy chipmunk cheeks and a guilty look on her face. I asked her what was in her mouth and she just looked at me. I squeezed her cheeks so I could see into her mouth and a row of Honey Nut Cheerios smiled back at me. (really, they looked like holy teeth. it was weird.) I hurried and took her over to the garbage can and told her to spit them out. She hurried and swallowed them. (of course) Ugh. Remember how she's allergic to oats and nuts? I warned her teacher when I dropped her off that she had been impulsively eating things off of the floor at home and she promised to watch her closely. Thankfully she didn't seem to have any reactions to them. Stinker.

When I picked her up from school on Wednesday, she got upset with me because I didn't let her open the car door by herself. Never mind the fact that she can barely reach the handle, let alone exert enough force to actually open the door. She cried all the way home and then after I closed the car doors and went in the house, she stayed in the garage for 10 minutes trying to open the door.
Finally, I told her I was going to turn off the lights. That didn't help, so I turned off the lights and told her I was going to close the door. She said, "Hey! That would scare me!" To which I replied, "Then come in the house!" and she did but she was not happy about it.

About 5 minutes later, her sweet, wonderful respite provider (who will be leaving us soon) arrived. When Raya heard the doorbell ring, she perked up and said, "Is it MEGAN!?" Then she remembered she was supposed to be pouting and started pouting again. Playing with Megan always makes her happy though. They played outside in the nice weather for a while, read books on the back porch, and played with Legos.

The big kids got out of school early on Wednesday so they were home all afternoon to play with the girls after Megan left. I decided to be a super cool mom and let the kids play syringe water fight again. Then I was even more awesome and let them have popsicles while they dried off.
Raya's is a homemade Splash-sicle and she doesn't care that hers is different from theirs, she's just happy to have a popsicle. (whew!)

Thursday wasn't too exciting. We had OT with a different therapist since ours is still out of town. The girls LOVED it. She taught them some deep breathing exercises, stretching, and yoga.

 Excuse the blur, she was leaning over to blow bubbles.

The rest of the day, the girls rotted their minds in front of the TV while I studied for midterms. Sometimes you gotta do what you gotta do. On the bright side, I got an A. :)

After I got home from the testing center today, I let the kids play out in front of the house. They love riding their scooters & bikes out front so occasionally I let them. Today, they rode scooters. It's hard work for Raya but she likes it.


Then I was the mean mom that made the kids come in and clean their rooms. Of course as soon as I left the room, the goofing around started. One thing led to another and the next thing I know, someone's yelling, "Mommy, Raya's getting wet!" Aaaaand her extension tube had come unclamped while she was roughhousing with her brother.
She and the entire living room smelled like stomach and a lot of the formula she'd had & the Splash she'd been drinking at therapy came back out. I got her cleaned up, fed the big kids dinner, and then let them watch something on Netflix once they had jammies on. Raya fell asleep on the couch so I left her there and then had a nice little snuggle with her before I put her in bed. I love those little sleep snuggles!

Monday, April 22, 2013

busy busy busy

It's been a busy weekend and the rest of the week will be too. Mommy has midterms and little girls have to meet their daily mischief quotas. Nothing too exciting on Raya's schedule this week but hopefully we'll hear back from the hospital soon about scheduling our little sleepover. She seems to be feeling good again, thank goodness. Hopefully it will last longer than 3 days this time.

Wednesday, April 17, 2013

In like a lion, out like a lamb...then back to being a lion

The title of this post doesn't refer to the month of March, it refers to the day we've had. :)
Things started out just peachy. Ashtyn, being the amazing big sister that she is, decided to get Raya ready for school all by herself. She changed her diaper, got her dressed, brushed her hair & put it in a ponytail, and then she & Cole decided to get her feeding pump ready too. It was adorable, even if they haven't quite gotten the hang of filling the pump bag & getting the cap on tight. Raya was in a great mood and we were all set to get to school on time for the first time this week. 

Then I asked her what she wanted to take to school for a snack. She picked out a grape Splash, and I poured about 2 ounces into her new purple sippy cup. That's about all she will drink at a time, especially if she's getting a pump feed at the same time, and since the kids had overfilled her pump bag a little bit and I planned on putting the sippy cup in her pump backpack to keep it cold & keep it from spilling, I didn't want it to be too heavy. She saw that the cup wasn't even half full and was not happy with me. She started saying, "I want lots!" When I explained to her that she could have more when she got home from school, she started YELLING, "I want lots!" over. and over. and over. By then, it was 7:35 and the other 3 kids were in the car ready to go. I put her backpacks in the car (yes, there are 2) and then went back in to retrieve her since the attempt at reverse psychology had failed. I told her the big kids and I were leaving. She didn't care. I got her to the car and we commenced a 10 minute wrestling match. I was trying to buckle her into her carseat and she was resisting in every way she could. She's surprisingly strong. And loud. The garage door was open so I'm sure the whole neighborhood could hear her. The whole time, she kept yelling, "I WANT LOTS!" (referring to wanting more Splash in her sippy cup) The other kids were all plugging their ears.

Finally I got her buckled in and we listened to her cry and yell, "I WANT LOTS!" all the way to school. Then when we got to school at about 7:55, she wouldn't get OUT of the car. She kicked and cried all the way from the car to the gate, where her teacher was thankfully still waiting, which meant that I didn't have to go sign her in at the office for the 3rd day in a row. About halfway there, she had kicked off one shoe without me noticing so I put her down on the sidewalk and went to get it. When I was putting it back on her, I noticed that at some point between buckling her into her seat and getting her to the gate, her G tube had come out. The fully-inflated balloon was already dried off on the outside so it's possible that she may have pulled it out herself while we were driving but I have no idea. Thankfully her stomach was still empty at that point so there was no mess to clean up and her clothes didn't get wet.

Of course this was a day when I had just grabbed my wallet on the way out the door so I didn't have my emergency kit with me. I also hadn't bothered to put a bra on yet, which I should know by now means that I will inevitably have to be seen in public for longer than I intended. I was going to take her back home to put it in but then the teacher reminded me that I had an emergency kit in the health office. (duh) Since I thought that the likelihood of Raya letting me buckle her back into her car seat to drive all the way around to the other side of the building where the office is was next to nothing, I peeled her off (because she was angry but clinging to me at this point) and handed her over to her poor teacher. I got back in the car, at which point Cole not-so-happily informed me that they were now too late to eat breakfast in the school cafeteria since they close the doors at 8:00 and it was 7:59. I parked the car and let them out and then Kaida and I headed in to the health office. 

Her very sweet preschool teacher had her lying down on one of the bed things (and I had to force myself to not think about the fact that that's where they make all the sick kids lay down while they wait for their parents...) and she was talking softly to her and singing songs with her to help her calm down while they waited for me.  There was a substitute health aide there today but we were able to find Raya's emergency G tube kit in one of the cupboards. She has a whole basket with her name on it. I have to say, I did a pretty stinkin' good job on that emergency kit. It was PERFECT. I had an empty syringe to deflate the balloon with, a syringe filled with KY jelly, a Q-tip with the cotton torn off of one end to put in the tube to keep it straight (not recommended or necessary with a MicKey button but we use an AMT Mini One), and another syringe pre-filled with 5ml of water, which is what her balloon needs. The whole thing went pretty smoothly. She gets anxious now because we had a traumatic experience a few months ago with putting a tube back in but once I was done, she got over it pretty fast and was ready to go to class.

Whew. After that, I came home and did a few things (finished putting my underclothing on, for starters) and before we knew it, it was time to go pick Raya up. After Kaida had lunch, the girls wanted to do dishes again. I let them. The kitchen sink has been a FABULOUS babysitter the last couple days. 
 This time they only got to play in it for about an hour because Raya had an appointment with her allergist. Once again, she got upset with me on the way there because she dropped her Dum-Dum on the floor in the car and couldn't understand why I wasn't picking it up for her while I drove. She started repeating over and over again, "I want my Dum-Dum!" and then all of a sudden, she was quiet. I thought maybe she had just gotten tired of whining but when I parked the car and turned around to look at her, she was sound asleep. I thought she'd wake up at some point in the process but she slept through the ENTIRE appointment. 


I have to admit, it was pretty nice to be able to talk to the doctor without having to deal with kids. The visit itself wasn't really very productive but it was a good follow-up. At this point, there's really nothing that the allergist can do except for keep following what happens over the next few months. I filled him in on everything we've talked about since January, and apparently he got a letter from the GI in January telling him what our plan was. I was able to tell him what we had already done (sigmoidoscopy, removal of solid food from her diet, and switching back to elemental formula) and what we're still trying to do (solid food gastric emptying study). After emailing back & forth with the GI nurse yesterday & today, we are also going to be doing an impedance study sometime in the near future to measure her reflux & see how often she's actually refluxing when she tells me she has puke in her throat. 

The timing of the appointment was good because we were also able to talk about the seasonal allergy symptoms she's been having & what to do about it. What we really need is for the stinking air quality to improve so EVERYBODY in the whole metro area can feel better because the last few weeks have been awful, even for people who don't usually have seasonal allergies. I'm going to start giving her something for it but it will have to be through the G tube without her knowing about it because when I've let her have it by mouth, she gets upset that I won't let her have more of it. 

 Other than that, there wasn't really much to talk about. We have the best allergists and I kind of wish there was more they could do for her at this point because they're so wonderful to work with but until we start back up with food again, there's really not. We scheduled a follow-up for 6 months out and if there's any reason to come back before that, we'll call. As we were checking out, he stopped by the sample closet and gave us a few cans of flavored Neocate and some Splash, which was SO appreciated. She finally woke up when we were checking out, so he got the basket of Dum-Dums and let her pick 2. They also gave her a Tinkerbell sticker so she was a happy girl. 

The happiness wore off once we got home and I made her stop doing dishes so that the big kids could empty the dishwasher. That girl LOVES playing in soapy dish water.

This evening I got a hugely disappointing text message that I knew was coming but have still been dreading. Her sweet, wonderful respite provider is graduating from college in a couple weeks and will be taking a new job as soon as she graduates. We've known she would be leaving once she graduated but I've been living in denial. She's been with us for the last 18 months and the girls are absolutely in love with her. She saves my sanity 3 days a week and we will miss her dearly. That has also meant that she's been able to stay home from church every week to avoid exposure to germs, and even when we find a new provider, we plan on taking her to church so that will be a big change for all of us. The timing is not good. Raya's OT is gone until the first week in May. We're doing make-up sessions with a different OT but it's still a disruption from the norm. As soon as she gets back, we're losing our respite provider. Even if we have a new one a that point, there will still be an adjustment phase. Since we started getting respite, she's been able to stay home from church every week to avoid exposure to germs, and even when we find a new provider, we plan on taking her to church so that will be a big change for all of us. Throw on top of that the fact that we're trying to move forward with something to help Raya be more comfortable (whatever that ends up being), and I feel like we're heading into a big fat storm cloud. SO yeah, that was a little bit of a panic moment for me. I'm trying not to think too much about it because it stresses me out. I know we'll find someone who will be great, but I don't enjoy the process. 

 The final disappointment(s) of the night happened right at bedtime. First, she did not magically fall asleep like she's supposed to, although now that I think about it, it's quite possible that I forgot to give her medicine even though I've been thinking all evening that I did. But yeah, I'm pretty sure I forgot. She stayed awake until about 10:30, which meant that I didn't really get any studying in except that we did watch some YouTube videos about the immune system. Right when we were trying to get her to go to bed, she said something about her elbow hurting and her arm being red. I ignored it at first but then I looked over at her and from clear across the room, I could see that her arms were red. Upon further examination, it looks like she had an allergic reaction to the dish soap. The under sides of both forearms right up to her elbows were bright red.

It's kind of hard to see it in the picture but they were bright red, scaly looking, and parts of the red areas were hot to the touch. She complained that they hurt, which means they must have really hurt, so I felt bad. I told her that it was the dish soap that made her arms hurt and that means she can't do dishes anymore. It probably didn't help matters any that the girls have used about half a bottle of dish soap in the last 2 days, so I guess it shouldn't be surprising that her skin is irritated. 

So yeah, the day started out rough, got better, got rough again, and stayed a little rough. Then finally, she gave it up and went to sleep and I got my reward for a hard day's work:
Motherhood pays in intangibles, you know. :) (and yes, I am tired, which is why I look tired.)

Tuesday, April 16, 2013

Sleeping funny and staying busy

Trying to catch up on sleep is hard when you don't go to bed at night. Little missy has found that out the hard way. She was up much too late Sunday night (in spite of her medicine) and after she had finally gone to sleep and her pump had finished running for the night, I was able to get her back into her bed without waking her up. I don't know what time, but sometime between 1 and 5 am, she climbed into bed with us. What was even more shocking was the fact that she slept until 8:20. I sent the big kids to school on the bus and let her sleep until she woke up on her own. It was a beautiful thing.
She didn't want to go to school but I didn't want her to think that she can just tell me she wants to stay home and then get to stay home, so I made her go anyway. She was an hour and 15 minutes late to school (which is only 2 1/2 hours long anyway) but she was happy to be there.

Last night was another off night for her and she fell asleep on the couch again. I don't know how she can sleep like this:

This morning, she slept until 7:30. (school starts at 7:45) I had everything ready so that as soon as she woke up, all I'd have to do is get her dressed. Ha ha. That was easier said than done. She did NOT want to get dressed or go to school. I did get her ready though and she was only 20 minutes late to school today instead of 75. Tomorrow, maybe we'll be on time. 

She was in a great mood this afternoon. In spurts, anyway. We met up with some friends from church for a park day and I think she got overheated. It was a gorgeous day outside but she just seems to overheat easily. She was a little upset when we got home because I let the girls watch a movie and Kaida picked it out, but then they played with Legos for a while and were very sweet to each other. Then they started fighting so I offered to let them do dishes. :) They LOVE doing dishes and sometimes they even get some of the dishes clean. I needed to wash all of Raya's formula containers & the popsicle molds I've been using with Neocate Splash because it all gets an oily residue if it doesn't get scrubbed really well and the dishwasher doesn't get it clean. I threw all of it in the sinks (divided up evenly, of course) and let them have at it. They were so cute. I came in the kitchen to fix Raya's beeping feeding pump once and Raya said, "Mommy, I'm making Kaida some chicken nuggets!" and Kaida said, "Yeah, and I'm making her some pudding! It's a different flavor she never had before...like...Dum-Dum flavor." Food made out of dish soap bubbles. Melt my heart. :)


They played in the sink for a good solid 2 hours before I sent Kaida off to help clean her room and told Raya it was time to be done. When most of the water was out of her sink, she realized she wasn't going to be able to rinse the bubbles off of her arms. Here she is, very calmly saying, "Mommy, I need my arms clean. Mommy, I need my arms clean. Mommy, I need my arms clean. MOMMY, I NEED MY ARMS CLEAN." 
She's come a LOOOOOOOONG way when it comes to getting messy, but sometimes she still gets a little freaked out by certain things, especially when she doesn't feel like she's in control. I rinsed her arms off and then she started picking at her shriveled up little fingers.
 I thought she might get upset about them but she seemed to like it. She had to run and show everybody her wrinkly hands. 

She was such a chatterbox today. She kept popping out with funny questions and saying things that made everybody laugh. I was talking to one of the big kids and Raya walked in, said, "Mommy, I need to ask you something." (repeated several times until I acknowledged her) I asked what she needed to ask me and she said, "When I'm a grown-up, can I do stuff?" To which I replied, "Yes." She smiled and ran out of the room and said, "Kaida! Mommy said when I'm a grown-up I can DO STUFF!" Such a funny girl!

Sunday, April 14, 2013

Sunday.

Raya has had a really, really off week, and today was no different. She cried for about 40 minutes this morning and the whole time she was crying, she repeated over and over, "I want a purple Tum!" (referring to Tums, because her throat is bothering her) Then after she got over that, she cried for another 20 or 30 minutes because she wanted to play with squirt guns. Then after that was over with and everybody else had gone to church, she started crying because she asked if she could watch Lion King 2 and I told her she couldn't. (um, that's a creepy movie. A little dark for Disney.) We were waiting for her poor, sweet respite provider whose car blew a tire on her way to our house, so when she got here, I peeled a whining, crying Raya off my leg and left. Apparently the crying went on for a good 20 minutes after I left. Then this afternoon, she cried because she wanted Smarties and I said she had to wait until dinner. At dinner, she wanted pudding so I made her some. (Raya's "pudding"=vanilla Elecare+Simply Thick, just FYI) When I brought it to her, she got upset that it wasn't blue because I had put blue food coloring in her pudding on Easter just to make it special. After about 10 minutes of whining & crying about wanting her pudding blue, she laid her head down and fell asleep. It's been hard to be patient with her today. I know she doesn't feel good though, so we all just do our best to ignore it until she gets over whatever it is that she's upset about. Giving in never works, and there's no reasoning with her when she's in that frame of mind, so that's really all we can do. 
Days like today make me worry about sending her out into the world. I'm her mom, so I see her worth no matter how she happens to be behaving at the moment. I know that no matter what she's doing at any given moment, she's a sweet, determined, tough-as-nails, strong, smart, and just plain awesome little girl. The rest of the world doesn't see it that way though. People see a young child doing what she did for a greater portion of her day today and assume that the child is just a brat. They judge the child and they judge the parents who "let" the child act badly. I saw this exact thing play out with another child today, and as I saw it, I couldn't help but imagine Raya in that little child's shoes. It was hard to see the adults who were dealing with this child's outburst making faces to each other and whispering comments to each other, and other adults asking if they needed help dealing with this child, and not imagine how I would feel if it was Raya that they were dealing with in that way. Not that any of them did anything out of line, but the whole tone of the interaction made me want to keep her at home as long as we can. Of course that wouldn't do her any service, it's just another one of those things that's hard as a parent to know that when you send your child out into the world, nobody will ever love them as much as you do or see their value & worth the way that you do. You just hope and pray that the adults in their world will treat them kindly and look past the things they sometimes do while they're learning to cope, exist, and live in their world.
 
Every now and then, I get to have little moments that make up for some of the things we've missed out on with Raya. When my 2nd & 3rd kids were about her age & younger, they stopped taking naps. As a result, they were constantly falling asleep during dinner. I loved it. There is nothing cuter than a toddler that's been running around like a crazy wild animal because they refused to take a nap that they really needed who is suddenly totally passed out at the table. When you see how sweet and adorable they are with their face smashed on the table and partially eaten food everywhere (except Raya, she hadn't touched hers), you kind of forget about how they were acting all afternoon and just can't help but love them to pieces.


I can now add this picture to the treasury of pictures I have of the other kids sleeping during a meal. ♥ The best part was that when she woke up about 20 minutes later, she ate the whole 2 oz of pudding and asked for more and was in a great mood the rest of the evening.

 
Kaida, age 2 1/2, and yes she's eating in her sleep (looks a little bit like Raya, eh?)


Cole, age 2 1/2

Cole, age 2 (before we knew he was allergic to peanuts, hence the half-eaten peanut butter sandwich)

Cole, age 2

Kaida, age 20 mos




 

Saturday, April 13, 2013

My formal apology to Target and a 101st birthday

This morning, the girls and I were at the store picking out a birthday present for their cousin. Raya was in the big part of the cart and Kaida was walking. We went in and I parked the cart next to a rack of clothes while Kaida picked out what she wanted to get for her cousin. Once she had decided, we started walking towards another part of the store looking for some other things we needed. When I started walking, I took a step and felt my shoe slide a little bit. I looked down and saw that I had stepped in a small puddle of water. It seemed a little odd but I kept going. Then I stepped in another wet spot. I looked behind me and I could see the light shining off of a whole trail of water spots. I thought to myself, "Hmmm...looks like someone had something leaky in their cart." Just then, a Target employee was walking by so I mentioned to him that it looked like something had spilled on the floor, and we went on our way.

We found a giant bag of Dum-Dums, which Raya was excited about, and a bag of JUST Smarties. No other candy, just Smarties. I was pretty happy about that. After we were finished, we headed back up to the front of the store to pay. When we went past the clothing section, there were 3 guys standing there and big orange cones marking off the area with the spilled water. We paid and left the store. As I was picking Raya up out of the cart to put her in her carseat, I noticed that the leg of her jeans was soaked. About 3 seconds later, I realized that IIIIIIIIIIIIIIIIII was the one that left the trail of wetness all over Target. I was the one that was walking around with something leaky in my cart, and it was RAYA. Normally, she would have been plugged in to the pump at that time of day, but this morning she had actually finished almost all of a box of Splash, so I didn't plug her in since her stomach was full. Then we went to Target and somehow her extension tube came unclamped, and we EMPTIED her stomach all over the store. Oops. Oh yes, in a team effort, Raya and I effectively contaminated pretty much every main aisle of the store with whatever was in her stomach and didn't even realize we were doing it. Of course when I asked her if she knew that her pants were getting wet, she said yes. Could she tell me they were getting wet while we were still in the store?? No.

To the maintenance guys at Target, please forgive us for leaving a trail of partially digested tropical flavored Neocate Splash in all of the main walkways of your store. A special apology to the employee that I mentioned the puddles to, since I did not realize at the time that I was the one who had left them. Had she been drinking chocolate Neocate instead, I most definitely would have recognized the odor of the drippings immediately but apparently, tropical flavored Splash is not as strongly scented once it's been in the stomach for an hour or so. I hope it didn't eat the finish off of the linoleum.

Sincerely, me & Raya.


In other news, the kids had a lovely time this afternoon having a water fight in the back yard. Alternate use #273 for 60ml syringes: squirt guns!

They played for about half an hour and then I noticed that Raya was leaning on a chair on the porch instead of playing. I walked by several minutes later and she was still standing in the same awkward position with her knee on the chair and staring at her foot, so I asked her if she was done playing outside. Without even looking at me (since she was too focused in on staring at her foot), she said, "My foot is dirty. I can't move. I can't walk on it." So apparently girlfriend still has issues with grass sticking to her feet. (thank you, sensory processing disorder)
She didn't move a muscle until I had cleaned every bit of grass off of her foot and dried both feet off. After that, she was done and came inside to warm up. It was about 83 outside, which is nice, but they were playing with freezing cold hose water so she was freezing and her lips were blue. The other kids stayed outside for about 2 1/2 hours so they got totally fried (way to go, Mom, let the white kids fry) but they had a great time. Yay for syringes! :)

And last but certainly not least, tomorrow is Raya's great-grandpa's 101st birthday!
(She was not happy that I pulled her away from the toys to come have her picture taken.) There was a little family get-together at the wonderful home where he lives now. ("little" meaning that there were only about 45 members of the family there out of the 140-something) He got to have his favorite dessert (homemade lemon meringue pie) and Mexican food for dinner so he was pretty happy. In a roundabout way, Raya is named after him. Her daddy's middle name is Ray after his grandpa, and that's where we got her name from. :)

Raya was funny during dinner. She was sitting on her grandma's lap chattering away with her grandparents, and Grandpa started eating his pie & ice cream for dessert. He said something about ice cream and she said, "Well, I'm ALLERGIC to ice cream...but I can eat PUDDING!" One of her favorite things to do now is list things she's allergic to. Kind of funny to hear from the mouth of a 3 year old. :) Of course the real funny (but sad but funny) part was when we were all having a nice time eating dinner and talking to each other, and a sweet but not very lucid elderly gentleman at another table suddenly shouted a bit of profanity (bless his heart). Given the setting & circumstances, it was not something we were expecting to hear so it struck us all as pretty darn hilarious. Grandpa had been snoozing away in his recliner but that woke him up and then he was ready for the party. As funny as some of our feeding tube-related stories are, I can only imagine what stories the people who run this wonderful little retirement home could tell!

Aside from Raya waking up right when I wanted to go to bed and crying for half an hour with no acknowledgement of anything I was doing or saying to try and get her to stop, it was a pretty great day. :)
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