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Friday, November 30, 2012

Mixing textures and DGE

Good news: Raya ate really well at feeding therapy today. Apparently black beans and applesauce are a tasty combo. (blech) The reason this is so exciting is because for Raya, eating applesauce is huge due to her aversion to its texture, but what's even better is that she mixed the applesauce texture with the whole bean texture. A lot of kids with oral sensory issues and oral aversions have difficulty mixing foods of two different texture together. As gross as it was to sit and watch her eat black beans smothered in applesauce, I was very proud of her. Especially when she would make her yuck face and then kind of gag the beans forward in her mouth to keep from REALLY gagging. That showed a lot of self awareness. She still struggles to drink water without coughing but she really did have a great therapy session.
Bad news: The reason she was willing and able to eat so much at therapy (2T of applesauce and 1-2T of beans) was because just before we let her start eating, I drained her stomach. It had been 3 hours since her last feed (which I used a farrell bag with to allow her stomach to be vented while she got fed) but I still got this much out of her stomach:
It's about 145ml (almost 5 ounces) out of the 250ml (8.33 oz) that she'd been fed 3 hours prior. Definitely way too much. I hope we're not headed back to long continuous feeds but I'm not holding my breath.

Thursday, November 29, 2012

reflux and feed intolerance. blech.

Last night I decided to vent Raya's stomach before her dinnertime feed. Since it had been 4 hours since the end of her last feed and she hadn't eaten anything but 2 or 3 ice cubes, I expected it to be empty. Nope. 3 ounces of junk. Mostly partially digested formula and a little bit of water. She had nothing to eat yesterday by mouth other than ice, so it wasn't solid food. 3 ounces is a lot to have in a stomach 4 HOURS after the end of a feed, especially since everything she gets is liquid. The crappy thing is that there's really not much we can do other than slow down her feed rate more (which stinks) and use farrell bags to vent her during feeds, which stinks more. Then there's the part about not really knowing why things keep slowing down. That stinks too. Maybe (probably not but maybe) we'll be able to see something helpful during her endoscopy next week.

The increase in reflux has led to some interesting conversations lately. I hear a lot of sounds come from her that I'm pretty sure are the sound of her refluxing and then swallowing it. Sometimes her eyes water, and that makes me cringe because that can mean aspiration. Anyway, this afternoon she was laying on the couch while she was tethered to the IV pole and I heard a big reflux swallow and her eyes watered a little. Here's the conversation that followed:

Me: Raya, did you get puke in your throat?
Raya: No.
Me: Did you have formula in your throat?
Raya: No, it was just puke.
Me: Did you get puke in your mouth?
Raya: No, it was just formula.

Me: You got formula in your mouth?
Raya: Yeah. Formula puke.
Me: Did you swallow it?
Raya: No.
Me: Did you make it go back in your stomach?
Raya: Yeah.
Me: Um, that's called swallowing.
Raya: *confused look followed by hysterical laughter*

I do appreciate the fact that she's verbal and is getting better at communicating things with me, but oh my goodness it's like pulling teeth sometimes!

Wednesday, November 28, 2012

Things that are hard to hear

Raya saw a new specialist today. It was an appointment that I had put off for a year, mostly because I didn't really see the point in going but also because I felt like we already had enough doctors to see & didn't really want to add another one. In September when she had her annual CP screening clinic appointment, the very kind and wonderful NP that we saw suggested again that I make the appointment. After talking with a few of my friends whose kiddos have seen this same doctor, I decided to go ahead and do it.

The doctor we saw today was a neurodevelopmental pediatrician. The first thing she asked me was what my goals were for our visit. I must have had a blank, puzzled look on my face because she then said, "Or are you just here because someone told you to come?" Um, yep. That would be it. :) I told her I just would like to get any insights she could give me on why Raya is the way she is and what we can do to help her be as happy/successful/functional/productive as possible.

Right from the beginning, Raya was just as sweet and pleasant as could be. (Of course the doctor probably didn't hear her yelling at me to unbuckle her so she could get out of the stroller and play with puzzles in the waiting room.) As soon as the doctor came to the waiting room to get us, Raya turned on the charm. She even held the doctor's hand when she walked back to the exam room. She's never done that with ANY of her other doctors, even the ones she likes. She really does know when to show off and make Mommy look bad.

She asked me a lot of questions about Raya's medical history, which she had obviously already read up on. She asked a few questions about our other kids, Donny and me, and both of our families. Meanwhile, Raya and Kaida were playing with toys and Raya was climbing on everything and jumping off of things. Then she started stacking blocks about 10 high and totally showing off all her big girl skills that I didn't know she had. After we had finished going over Raya's history, the doctor got out a flip chart book and started asking Raya questions about all the pictures in the book. Things like "Raya, what is that girl doing?" "Find the pencil." "Which person is running?" etc. Raya did really well with all of that so she moved on to more abstract things like, "Find something you would use with a coloring book." (she pointed to a pair of glasses, not the box of crayons) She had pages with different sizes of circles on them and asked Raya to find the smallest and the largest, which she was able to do. I didn't think she'd know that. (apparently I underestimate my child. ask me how good that makes me feel.)
(the lady hiding behind the filing cabinet is the neonatologist that was observing, by the way)

A lot of the pages had letters and numbers, and Raya doesn't have a CLUE when it comes to any of that. This child has never sat still long enough to even care what the names of the letters or numbers are. However, when the doctor asked her to count the teddy bears on the page, she did it. She asked her to count the squirrels, and Raya accurately pointed to each squirrel and counted to 5. Another thing I didn't think she'd be able to do because she's not consistent with her counting. One page had a picture of a lamp on it and when the doctor asked Raya what it was, she was quiet for a while and then said, "I don't know WHAT it is!" I was laughing quietly on the inside because I'm pretty sure Raya really doesn't have a clue what a lamp is. We don't have any lamps, let alone any that look like the one in that picture. :) The doctor asked Raya if it was a car and Raya said yes. Then she asked her, "If that's a car, then where are the people going to sit?" Raya said with a little bit of sass, "In the car." The other funny one was when she was giving clues and trying to get Raya to say "milk". She said, "Raya, what's something that comes from cows, is white, and you drink it?" That made me laugh because Raya has never really been able to have milk and is now allergic to it. :)

There were a few times when Raya would say something and the doctor would repeat what she thought Raya had said, only it wasn't what she really said. Her speech has improved recently and I'm convinced it's directly related to her gut function. I know that sounds odd but they are both very closely tied to her sensory processing disorder and when one thing is off, so is everything else. When she got done with her assessment and scored it, she said, "Well, Raya is average on everything. I'm happy that she was able to get into preschool because she clearly has some sensory issues that need to be addressed, but she's doing very well." (cue insecurity over whether we should be doing everything we're doing...)

Anyway, back to the title of the post. I've long since lost track of the number of appointments I've taken Raya to but no matter how many we go to, I still get nervous before every single one. Especially when it's a new one that we haven't seen before, as was the case today. I think one reason for that is the fact that I never really know what to expect from the doctors and other health care professionals that we see. One of the hard things for me has always been that because Raya's never been diagnosed with any big unifying diagnosis or a syndrome that ties everything together, I have always felt pressure to demonstrate or prove that she really does have issues. Sometimes we go to appointments (like this one) and the tables are turned and I'm the one that's being told that she has issues. The medical things have always been easier for me to take. Chronic vomiting, ok. Visceral hyperalgesia, ok. Fed through a tube, ok. But throw "behavioral" anything into the equation and I'm not so okay.
One of the first things the doctor brought up when we started talking was dealing with behavioral issues. Then she brought it up again at the end of the appointment. She said (and I know) that Raya is a stubborn kid. (I drove 70 miles for her to be diagnosed as stubborn, ha ha) She then said (which I also realize) that being a stubborn child AND having complex ongoing medical issues is a bad combination. Couldn't agree more. She suggested that I contact the behavioral health department of the company that handles long term care patients and have Raya evaluated by a behavior coach. She said that a behavior coach could give me more insight into how to handle some of the emerging behaviors we're seeing and the things that have been ongoing for a long time. She also said that when a child has had feeding issues for as long as Raya has (and especially some of the traumatic experiences she's had), a lot of dynamics develop that can be difficult to work through, and that a behavior coach could help us learn some different techniques for that.

{gulp} This was where I had to blink a few extra times to keep any tears from squeaking out. The word "behavioral" is really hard to hear. I imagine I'm not the only mother who hears that their child has a behavioral problem and can't NOT take that to mean that she's done something wrong in order to create the behavioral problem. You start to replay everything in your mind and try to figure out where you went wrong, even if logically you know that you can't take the blame, or at least not all of it. She's had a lot of traumatic medical-related experiences in her life, and that's not over yet. Her brain doesn't process things the same way a "typical" child's brain processes things. She is VERY strong-willed and VERY stubborn. So yes, like any parent I've probably let a few things slide that I shouldn't have. I've probably screwed up because let's face it, every parent screws up. I've got 3 other kids who, so far, have turned out pretty darn good if I don't say so myself, so I know I'm a pretty decent mom. The hard part is that even though I've done the best I could to not treat her differently, not coddle her, not spoil her, and not allow "naughty" behavior in spite of HAVING to do things differently because of her medical needs, she is still tough to handle. She is not a naughty kid! She is a good girl who just doesn't always understand what's appropriate behavior and what's not. I feel like I've worked SO much harder with her than I had to with the other kids in every way. EVERYTHING is so much harder with Raya. I feel like NOTHING has ever come easily with her, and I hate that the word "behavioral" implies that I'm not a good mom and that she's not a good kid.

Moving on, she said that another benefit that could come from having a behavioral evaluation would be that Raya could get play therapy that would help her learn to express herself better and to work through some of the emotions she has that are a result of things she's been through. It's kind of hard to imagine a 3 year old having emotions to work through but having been with her in all but 2 of her traumatic medical experiences, I would be surprised if she DIDN'T have lasting emotional scars from some of it. Not to mention the emotional scars of having your own mother be the one to inflict a lot of the medical trauma on you. I think play therapy would be great for her so I hope we can make that happen.

The next thing that was hard to hear didn't really bother me until later. I don't remember her exact words, but it was something to the effect of, "You need to know that the feeding issues will take years to overcome." Ouch. It's not anything new to me. I know that. I've known that for a while now. It has sunk in little by little for 3 years now that the feeding tube is not going away anytime soon. When she said it though, I realized that it was the first time anyone has ever said it out loud to me. That stung. I almost let a few tears escape then too but I didn't. I told her that I know the tube is here to stay for a while, that I wish someone had told me from the beginning that I should plan on her having a tube for years (not weeks or months like I initially thought), and that I've made peace with the tube and I'm okay with her having it until she's ready to not have it anymore. Still though, having a doctor of her expertise and background tell me flat out that it will take years to overcome her feeding issues stung. But I'm over it because I already knew that, so I'm saying right now for my own benefit and for the benefit of anyone close to us, Raya will still have the feeding tube in kindergarten. She might even still have it in 2nd grade or 3rd grade or 4th grade, and you know what? THERE'S NOTHING WRONG WITH THAT.

You know what else there's nothing wrong with (according to the neurodevelopmental pediatrician)? Raya is not potty trained. We talked about that too. She did suggest that we incorporate sitting on the toilet into her mid-day and bedtime routine but that it's really not important whether or not she actually goes because she is not ready to potty train yet. Nor would pushing it on her be productive in any way, as is the case with eating. If you push a stubborn child, they will push right back. And children on liquid diets cannot be expected to poop in the potty. 'Nuff said.

The other big issue that we talked about was the difficulty that Raya has with going to sleep. I mentioned to her pediatrician recently that I was concerned about the fact that Raya is usually unable to fall asleep for a nap regardless of how exhausted she is, and that even at night it takes her a long time to fall asleep. She doesn't fight us on going to bed and seems to actually like being in her bed. It's quiet and dark, both of which she thrives in, but she just can't fall asleep. Sometimes she will lay in her bed for an hour or two before she finally falls asleep, and when that happens at naptime, she eventually gets tired of trying to take a nap and wants out. Or poops. Then we have to air the place out. :) Anyway, when I brought it up to the pediatrician, she told me that Raya probably just doesn't need that much sleep, that I shouldn't be letting her take a mid-day nap, and that she wouldn't prescribe a sleep medication if that's what I was asking. (we had already tried melatonin with no change) I wasn't, but her complete lack of support of any kind felt pretty lousy. She obviously wasn't listening to what the problem was either.

I brought it up today with the developmental pediatrician and she said that based on what we had talked about and based on what she'd observed & read in Raya's medical history, she feels like Raya is dealing with some anxiety. She said that with kids like Raya who have good days and bad days, sometimes it's a sensory issue and sometimes it's anxiety. She said the anxiety could definitely be making it difficult for Raya to calm herself and go to sleep. There was a medication mentioned but it's not an anti-anxiety medication or a sleep aid and has very few possible side effects. She said she couldn't prescribe it without checking with neurology and GI first to make sure it wouldn't interfere with anything she's taking now, but that it would be something to look into. It's supposed to help take the edge off on bad days, and I think that sounds like something she could benefit from in addition to the sensory protocols we use with her. I will be researching the medication and asking her other doctors about it ASAP. I'm hoping to make another weighted blanket or at least a lap pad for her to see if that would help too. She hated the blanket I made her when she was about 19 months old so we'll see if she's open to it now that she's a little older. If I get to it. :)

Overall, I felt like it was an informative appointment and it did give me some new directions to go in that I {humbly} think will be beneficial, even if it does involve allowing someone to come into my home and pick apart my parenting and tell me what I should be doing differently. I very much appreciated the way that she was able to explain things without coming across as me being responsible for Raya's problems. She told me that she would be more than happy to see us back again but that she would completely understand us not wanting to add another doctor to the mix. She gave me her email address and said I could email her with any questions, and that she'll get a detailed report written and send it to me so I can check for any corrections that need to be made.

In other news, and going right along with the "things that are hard to hear" theme, Raya's surgery is apparently scheduled for Tuesday. Nobody bothered to inform me of that though, nor did anyone bother to tell me that they had canceled the GI follow up we were scheduled for this morning. On a whim, I called GI yesterday because I hadn't gotten one of their automated reminder phone calls yet and wanted to make sure we were on the schedule. We were not, but evidently we are on the schedule for an endoscopy next Tuesday. In today's mail, there was a new surgery packet from the surgeon's office with our pre-op instructions. I could go on about how irritating this whole situation has been with the complete lack of communication and follow-through, but complaining never helps, even when you're complaining to the people who could have prevented or fixed the problems to begin with so I won't. I'm not looking forward to the procedures because the surgery is going to be painful for her. I'm also not looking forward to it because they were so kind as to schedule it during the week that I have to take my midterms and have all kinds of other things going on, and they didn't bother to call me to make sure that the date worked for me. Oh well, at least it's scheduled and I can start working on what I'm going to do with the other 3 kids that day and how I'm going to study and take midterms with a freshly post-op toddler. They'd better give her some good drugs, that's all I have to say.

So yeah. Today has been a little rough but on the bright side, the weather was absolutely beautiful and we spent some time at the park today in our short sleeve shirts with a nice warm breeze and sunshine. Lovely afternoon to help make up for a somewhat difficult morning.

Sunday, November 25, 2012

So much to be thankful for!

This Thanksgiving was SO much better than the last 3 have been. 3 years ago on Thanksgiving day, Raya was 2 weeks and 2 days old. I was not sleeping much back then and she was a constant stream of spit up and vomit.
The day after Thanksgiving that year, I dragged myself out of bed around 6:30 (I was probably already up anyway) and went shopping for a few minutes and then went home and probably took a nap. We decorated the Christmas tree that weekend too.
I don't think she really enjoyed it as much as the rest of us did. :)

The next year, her big sister woke up sick on Thanksgiving day. She puked all day. It was awesome cleaning up puke from 2 kids  and trying not to contaminate the non-ill puker all day long on Thanksgiving while Donny and the other 2 kids had the traditional Mexican food feast at his parents' house. (ha ha) I did get a lot of online Christmas shopping done that night though and had a peaceful, quiet evening to myself once they went to sleep.

Then there was last year's debacle. It started out nice enough. Great food, lots of family, amazing weather, and Raya actually ate some "dinner" on Thanksgiving. (sour cream and wheat thins, neither of which she can have now)
It was all fun and games until she fell off the bouncy horse and broke her radius & ulna in her right arm. We knew she had hurt her arm but due to her abnormally high pain tolerance, we didn't realize until the next day that she had probably broken it. Instead of standing in line Black Friday shopping, I was standing in line waiting for our favorite urgent care to open.

This year was lovely. We had an unbelievable amount of food (traditional food and Mexican food) and great company. I don't have any pictures of Raya eating because she only ate a few of her veggie chips & one of her special cookies that I made her (recipe coming soon) and that was it. She wasn't interested in corn or the whipped cream Donny's aunt had made out of coconut milk. Oh well. The girls had a great time playing with Grandpa's horses after dinner.

By the time we went home, the kids had all worn themselves out playing with cousins and having a good time. It was a great day!

Wednesday, November 21, 2012

Food: Friend and Foe

The unwanted theme of my life for the last 3 years has been patience. I had always thought of patience as just being one thing. You're either patient or you're not. I've learned, however, that there are countless forms of patience. In some situations you're only required to be patient for a few minutes, like when you're sitting in a doctor's office trying to keep yourself from getting angry about having to wait for a long time to be seen. In the grand scheme of things, it's over with pretty quickly. Other things require more long term patience, like waiting weeks to get test results (or waiting months for schedulers to coordinate a surgery/endoscopy...nope, not bitter about that at all...:) Then there are things that take YEARS of being patient hour after hour, day after day, week after week, month after month. Things like wondering if your child will ever be diagnosed with something that will explain all of the other diagnoses or knowing that you may never be free of dealing with insurance and home health company iterates month after month. Diagnosing possible food allergies has been one of those things that has required long term patience. Lots of it.

We've suspected food allergies since she was only a couple weeks old. When she was a month old and still had uncontrolled reflux even on Prevacid, I out myself on an elimination diet to remove all of the most common food allergens from my diet, and subsequently from hers. It didn't help, but rice was the only grain I was eating and we now know that she's allergic to it. When she first got the feeding tube, I vaguely remember discussing with her GI that she could possibly have an EGID (eosinophilic gastrointestinal disorder/disease). At the time, it wouldn't have done any good to test for it because she had already been switched to the elemental formula that she would have to be on if she did have an EGID. I specifically remember her doctor saying, ”It would be pointless to scope her right now because we're already treating her as if she has it so it probably wouldn't show up anyway.” As things have improved and she had started eating small amounts of food without any major reactions, I assumed we had been wrong about her having food allergies or an eosinophilic disease. Then she started having small reactions here and there. We did allergy skin testing and everything was negative, even the positive histamine control. One of her meds had thrown off the results, but we couldn't take her off of it to repeat the testing so we had to wait until she came off of it. For about 18 months we were left to speculate and wonder before we could finally do the testing again. By that time we could see definite reactions to milk and peanuts and iffy possible reactions to rice. 

When the tests were repeated this September, they were very mildly positive for several things. Low and behold, when we eliminated those things, we saw improvements in things that we hadn't even attributed to food allergies, and things we had been told were not related to food allergies, which I'll get to in a minute. So now here we are again, wondering if in addition to food allergies, she could possibly have an EGID. The endoscopy she was supposed to have this week (during the surgery that never got scheduled) was going to show us whether or not she has eosinophils in her digestive tract but since it didn't happen, it will be goodness knows how long before we get to do it.

Raya had a follow-up with the allergist this morning because we've seem it confirmed by elimination and reactions that she's allergic to the foods she tested positive for and to talk about where to go from here. I filled him in on the types of reactions she's had and he explained to me why her reactions are more severe now that she's been off of her allergens for almost 2 months. Something to the effect of now that her body isn't at a chronic level of allergic reaction, when she does eat something she's allergic to, her body has an acute reaction to it rather than a slow, chronic state of reaction like she was in before. Totally makes sense. We went over the foods that she's currently eating (marshmallows, Puffcorn, Fritos, whole pinto or black beans, banana, corn, potato, buckwheat pancakes, and a little bit of apple) and based on those things, he gave me 5 more foods that she can try. He said that if she does okay with those foods, then he'll give us more and if not, we'll just take it as it comes.

The new foods are pears, sweet potato, cooked carrots, and pork loin. He also suggested quinoa, which we've tried once or twice before and she ate it okay. He also agreed that it was best to avoid gluten entirely since we know that she's allergic to wheat but we don't know if she's also allergic to gluten, which is in more grains than just wheat. We'll follow up with him again in January and hopefully by then she will have had her EGD and maybe we'll have more information from the biopsies. I left the allergist's office feeling SO much better than last time we left there because I feel like we actually have a plan now. The NP that we saw the last 2 times had told me, "Well, her reactions were all really low, but if you want to you can take her off wheat for a couple weeks and see what happens. Come back in 3 months for a follow-up." And that was it. I left feeling like I was totally on my own with it and I don't like feeling like that about Raya's medical care. This visit was MUCH better and made me glad that I asked to only have her put on the allergist's schedule from now on instead of the NP.

Preschool Thanksgiving

Since Raya's surgery got canceled (or, rather, never got scheduled) yesterday, she was able to go to school and have her little preschool Thanksgiving party. It was a little Thanksgiving feast. Her teacher sent home a paper last week with assignments of who needed to bring what but the teacher had written a note asking me to circle anything that Raya was allowed to eat and then send something with her that she could eat. Knowing how much food was involved made me nervous so I gladly checked the "I will be able to attend" box. :) I really wanted to see what she's like in the classroom anyway and figured that a class party where all the other kids are eating would be a great time to work on all of our feeding therapy skilllllllz.

When I walked into the classroom, there were 10 or 11 toddlers sitting around a table wearing the most elaborate construction paper turkey hats I've ever seen. They (the kids and the hats) were ADORABLE!!
Is that not the most adorable construction paper hat ever?!? I don't know which was more impressive, the fact that all the kids had made these elaborate hats (with a lot of help from the teacher & aide, I'm sure) or the fact that they were ALL wearing them AND sitting in their chairs. Preschool is just stinkin' cute.

One by one, they all took off their hats because they were "poky" and "scratchy" and "itchy". Then it was time for their feast. A lot of what they had was food that Raya can't eat but we found her some things she could have. I didn't think she WOULD eat some of it, but we put some banana slices, apple chunks, corn, non-dairy whipped topping (aka Cool Whip), and a slice of turkey.
The only thing I expected her to eat was the bananas and Cool Whip. I knew she wouldn't want the turkey or corn and thought there might be a chance at getting her to eat apple. Turns out if you let her mix corn in Cool Whip, she likes it. Go figure. It also helped that I gave her a Smartie after every couple of bites of corn, banana, or apple. She ended up eating a little bit of banana, 2 or 3 small chunks of apple, and about 2 teaspoons of corn. And 2 teaspoons of Cool Whip. She took a couple of tastes of turkey but spit it out rather rudely, so before I took the turkey off of her plate, she had to kiss it goodbye. One of those funny feeding therapy things. There were a couple of times when I could tell that she needed to take a drink so she didn't gag on her corn but SHE didn't realize that she needed to take a drink so I had to tell her. Those are the kinds of things that make me feel a little hesitant to send snacks with her that take effort for her to eat. Marshmallows are a piece of cake for her. She can eat them without any problems. Other things are a little tougher and unless someone is sitting right there with her coaching her through it, she either doesn't eat it or she has trouble eating it. If I knew someone was going to be helping her eat, I'd send more challenging snacks with her but for now I'm keeping it simple.
All of her little classmates finished their food in about 15-20 minutes. Raya spent about 35 minutes on her food and ate a fraction of what everybody else ate. I'm okay with that because she's actually EATING something, but I hope that she'll be able to pick up the pace a little bit in the next few months. After she finished eating, she cleared her plate from the table, had a little drink of water, and went to play with her classmates. More like parallel play with her classmates. There's still pretty much zero actual interaction. She did do a good job helping to clean up when it was time to clean up though. Someone turned on a song about cleaning up and all the kids except for 2 started cleaning up. It was fun to watch them. :) Here's Raya & her little friend putting away blocks:
Love it!

I should mention that when I dropped Raya off at preschool yesterday morning, it wasn't pretty. She was having a rough morning. It all started when she realized as we were getting in the car that I hadn't put a baggie of marshmallows in her backpack. She didn't NEED marshmallows because she was having food at school. It didn't matter to her though, she was upset and once she got upset, she couldn't calm herself down. When I got her out of the car, she was crying and clinging to me so when I signed her in, I literally had to peel her off my leg and hand her off to her teacher. I knew she'd probably calm down after a few minutes so I left.

When I came back a while later for the party, I could tell that she had cried for a while because she had white crusty gunk below her nose but she seemed pretty happy. During the party, another mom was talking to the teacher about her little boy (who is the CUTEST little guy!) being like a baby koala and how you don't even have to hold on to him because he clings to you when you pick him up. I laughed and said Raya was the total opposite and that picking her up is like picking up a brick that wiggles. The teacher said she had learned that after I left because she'd had to hold Raya for a while since Raya kept freaking out when the teacher would try to put her on the ground. I know this sounds terrible but I was SO glad to hear that! Someone else is FINALLY seeing what she can be like!

During the party, she was pretty happy. When it was time to leave, she was still happy but she was really wound up. Since I had parked and come into the school, we had to walk back to the parking lot instead of just the driveway like we usually do, and that meant she needed to hold my hand or let me carry her. She didn't want to do either of those things. I couldn't help but laugh because while all of the other little preschool kids were calmly holding their parents' hands while walking to their cars, Raya was trying to get away from me and then kicking, screaming, and yelling at me while trying to wiggle out of my arms as I tried to walk as quickly as I could to the car so I didn't drop her. All I kept thinking was, yep, she definitely needs preschool. :)

Monday, November 19, 2012

Surgery postponed...unhappy momma

Back in September after our ugly accidental tube removal & multiple failed replacement attempt incident (more about the incident & frustrating phone calls that followed here and here), I decided it was time for Raya's big puffy scar tissue to be removed. Her GI and I had been talking about it for a year or so, but it didn't seem necessary until we had a problem. Here's how it looked in September:
Big puffy scar tissue. We had the surgery consult in September & scheduled it for November 19th, aka today. November 1st, the GI doctor and I decided that it would be better to move it from the outpatient surgery center to the main hospital so she could do an EGD (endoscopy) at the same time, so the GI scheduler was going to work on getting things coordinated with the surgeon's office to move the surgery to Tuesday the 20th, aka tomorrow.
Long, irritating story short, I'm not even sure to be mad at but somebody didn't do their job, everybody's passing the buck, and Raya won't be having surgery tomorrow. They have no idea when it will be happening. I was told that someone would call me when they get things figured out. I've heard that line before though so I'm not holding my breath. It just makes me angry thinking about it though. It shouldn't be this difficult for people from 2 different doctors' offices but within the same hospital to communicate with each other.
Not that I was thrilled about her having surgery 2 days before Thanksgiving, but it needs to be done and our calendar is only going to fill up more in the coming weeks. I just want to get it over with. It might be a "simple" outpatient procedure, but nothing about handing your kid over for surgery is EVER simple. This stuff is never simple for her either. The bottom line is that they had almost 3 weeks to coordinate their schedules and they dropped the ball. All the schedulers want to do is blame each other. Very very frustrating when you can't get people to do what they're supposed to be doing so your child can get what they need.

Just so I don't end on a sour note, I'm happy to report that Raya has once again eaten almost a whole 4 ounce container of applesauce. She's ready to eat when she gets home from preschool, and Kaida usually is too so they had lunch together today. Raya has decided that she might actually like applesauce, which is VERY exciting for me because she doesn't really eat any fruits or vegetables regularly. She won't really even eat much potato now, she just eats the butter. So thankful I have these sweet girls to remind me of all that is happy and positive in life!

Saturday, November 17, 2012

New feeding therapist and a reality check

After a 2 1/2 month hiatus, we have finally found a new feeding therapist. To be perfectly honest, the break has been nice. She started feeding therapy at 5 months old and we both just needed a break. I'm very excited about our new arrangements though. Our very hard working and dedicated OT is teaming up with one of the in-clinic feeding therapists on a few of their patients. We will be seeing both of them on Fridays. We'll start with OT and then go straight to the feeding therapy room. I think this will be a really good thing for Raya and I'm excited to get her back on track with feeding therapy. She's been feeling better GI-wise and I think she's ready to move ahead.

We had our first visit with Miss Heidi yesterday and it went pretty well. Most of the time was spent talking & going over Raya's medical history & feeding therapy history. It was nice to get the chance to start over fresh with a new therapist. We learned helpful things from both of the others we've worked with but it will be good to have a fresh set of eyes on the situation and have a more sensory-friendly approach to feeding. I think in-clinic will be just what Raya needs to get things going. I got Raya to eat some banana by letting her have bites of marshmallow in between bites of banana. She would only take the banana and marshmallow from a spoon, but she took it. We'll be skipping next week since it's the day after Thanksgiving but then we'll hit the ground running after that.

Her GI issues have calmed down quite a bit since we slowed her feed rate way down and have spaced the feeds out more. She's definitely happiest when there's nothing in her stomach. :/ Sometimes in the evening, we'll think, wow, she's really in a good mood tonight! And then realize that it's because we've forgotten to start her next feed so she's feeling good. I still wish I understood what caused the issues with not tolerating feeds or if there was more to it than just the stress of moving, but I'm pretty sure every mother of a tube fed kid has said that same thing at some point. Sometimes there just isn't a good reason or a way to fix it without letting their body work things out at its own pace.

That's part of the reality check I was referring to in the title. A part of me (the optimistic part) had the idea that once we got Raya onto bolus feeds at the maximum pump rate, she was out of the woods. I felt like we were past the worst of it. We're coming up on 2 years since her last hospitalization. She's never been given a unifying diagnosis to tie together all her many diagnoses. There's no syndrome for me to google search and know to be on the lookout for certain symptoms that may be lurking around the next corner. She's no longer underweight and has been surprisingly healthy as far as common illnesses go (knock on wood). As much as I HOPE that we are beyond the worst of it, I have been reminded lately that she is still a child with a delicate GI tract. She may have a healthy immune system, but so do some of our little friends who have gotten sick with colds and flu bugs recently that have landed them in the hospital. Seeing her motility slow down so much just from the stress of moving (or whatever did it to her) makes me cringe to think what could happen if she catches a stomach flu or something. We've already seen what happens when she gets a sinus infection and it was NOT pretty. We wrote into her school health plan that she is at risk for complications from common illnesses and that good handwashing (not JUST hand sanitizer) is very important. I hope that the 3 page medical history I typed out for them will drive that point home.

It's hard not to be paranoid sometimes. She's been a little more calm lately and instead of just being glad that she's having some calmer times, I look at her laying still on the floor in the middle of the afternoon and start going through the list in my mind of things that could possibly be wrong with her.

She doesn't really help the cause any. She drops her ice cubes on the floor and then eats them anyway. I have to not think about it because I'm not always right there to stop her. I believe this next picture was taken just after I said to her, "Raya, stop sucking water up off the floor with your mouth! Get a towel!"

Fingers crossed for a very uneventful flu season, especially now that she's going to school.

Friday, November 16, 2012

First day of PRESCHOOL!

All of the stress and frustration over getting little missy into preschool FINALLY ended this week. We have officially transitioned from early intervention services to preschool. Raya's first day was on Wednesday and she was less than thrilled to get ready for school that morning. She wakes up pretty early every morning so it's not like I had to wake her up or anything. The problem is that you just can't rush this kid. If she's not ready to get dressed, she's not ready to get dressed. If she's not ready for me to give her meds, she's not ready for me to give her meds. We were GOING to have plenty of time to get her to school a few minutes early, but between having to coax her to let me put clothes on her and formula in her belly and another child being slow as molasses to get ready, we barely made it in time.

She was sporting her "Preschool Rocks!" t-shirt and sparkly pink hairbows in her pigtails. (and a randomly placed hot pink teddy bear barrette that she saw on the counter and HAD to put in her hair) So flippin' cute! If only she would have held still long enough for a decent picture. :)

She was excited to hold her new fairy backpack but it may be a while before we can convince her to put it on. I found it amusing that a kid who started wearing a backpack when she was 7 months old made such a big deal about putting on a cute big kid backpack that she actually likes. :)

She starts school a few minutes earlier than the big kids so we all took her to her class and signed her in. All the other kids have been in school since August so they all knew where to go but Raya didn't so I walked her over to the wall where they were lining up. She was pretty excited by then but I don't think she really got what was happening.

She was seriously the cutest little thing ever. Looking at that picture just makes me want to squeeze her. I knew the best thing to do for her was to just say goodbye and walk away so I took a picture, smiled and said goodbye, and walked out the gate without looking back. I was hoping to see her walk into her classroom but I really didn't want her to see me looking at her and make things difficult and by the time I got to the car, they were gone. I didn't cry, by the way. :) Neither did Kaida. She had a permagrin from ear to ear for the next 2.5 hours. It was chilly that morning so after we had walked to the health office to take Raya's emergency kit & another pile of forms to the health aide, we went home and made hot chocolate and toast and watched Polar Express. It was lovely.  

Judging by how difficult it was to convince her to let me put socks on her that morning, I didn't expect her to be wearing them when I picked her up. She was, but they were the first thing to go when we walked in the door at home!

I'm happy for her that she has the opportunity to go to preschool. She was SO happy when we picked her up. She was pretty wound up the rest of the afternoon. I had hoped she'd wear herself out and be able to take a nap that afternoon but she was in a state of high alertness the rest of the day. Albeit happy. :)

The plus side of that was that she had a really good eating day. I had really not wanted to send her to school connected to the pump but couldn't make the drastic change in her schedule that it would take for that to happen. Instead of trying to shift her whole schedule though, I decided that it might work to split her morning feed in half and do half before school and half when she got home. It seemed to work out well for her. She didn't go to school with an empty belly and she came home ready to have a snack with Kaida. What she REALLY wanted was Pringles. I offered her a banana. She didn't say no, but she really wanted Pringles. (which, by the way, have wheat AND rice AND a very small amount of milk/dairy in them) I learned something interesting about my girl during that snack time. She likes bananas (or at least doesn't NOT like them) but she HATES to touch them. She doesn't like the sticky, slimy feel of the banana on her fingers. I can't say that I blame her, really. I used the technique we had been using with her last feeding therapist before she discontinued with us where she gets a bite of a motivator food after she takes a bite or two (ideally more) of the goal food. When all was said and done, she had eaten almost half of the banana and probably about 8 or 10 Pringles. I knew it was a little bit of a gamble to let her eat them but I didn't think it would bother her much. The aftermath wasn't terrible but now we know that she really shouldn't eat Pringles anymore either. She seems to be getting more and more sensitive now that we've eliminated things.
Later in the day, she wanted another snack so I offered her applesauce. Normally she refuses to eat it but she ended up eating about 2/3 of the container. Between the banana, applesauce, Pringles and marshmallows she had for her snack at school, she ended up around 200 calories for the day. Mostly sugar, but it was a good day for oral intake. Good day all around, really.

It's bittersweet for me to send her off to school at the very young age of 3. It's sad for me to already have her out of my sight and out of my direct care and to not be a part of her life for 2.5 hours a day, 4 days a week. I know it's the right thing for her and for all of us though, and I'm glad she's in a place where she's cared for. (as long as her tube never comes out while she's there, of course)

Wednesday, November 14, 2012

Things I hope the neighbors don't overhear while the windows are open...

"Raya get over here so I can plug you in!"
"Mommy, I want unplugged!"
"I don't want to be plugged! I don't LIKE formula!"

"I can't unplug you until you ask with nice manners and a happy face."
"I can't squeeze you until you let me plug you in."
"Eew, gross! It smells like Raya's stomach in here!"

"What was that sound?" Raya: "*giggle giggle* That was just my stomach."

"What's that stuff coming out of Raya?" (referring to syringe connected to G tube) "Oh, that's just chocolate, snot, bathwater, marshmallows, and a little bit of formula."

"Swallow that bite of potato or you are NOT getting anymore butter!"
"Hold still and let me put this back in your stomach or I'm going to have to sit on you. You don't want Mommy to have to sit on you, do you?"

"I don't WANT to go to THAT doctor, I want to go see Dr. S!"
"Raya, it's time to feed your tummy." followed by "NO! My tummy doesn't WANT to be feed!"
"Don't open my cap! I want to open my cap mySELF!"

"Your stomach is leaking, get off the carpet!"
"Put down that goldfish cracker right now and eat your Smarties."
"No, sweetheart, I'm sorry but you can't have a bite of Mommy's sandwich. It would make your tummy sick. Do you want an ice cube instead?"

"Raya burped! Good job, Raya!!" (repeated excitedly by all members of the family, whilst patting her on the back)

"Calm down and relax. If you puke, you're going to be in trouble."
"You'd better not puke!"
"I don't WANT formula! Feed my tummy SLOOOOOWWW, please."

"Mommy, there's puke in my mouth. It's okay, I swallowed it."
"Mommy, I spit up."
"Mommy, Raya spit up." (she's 3, by the way.)

"Guys, throwing wet diapers at each other and calling them stink bombs is NOT acceptable behavior."

"Okay everybody, we're going to have a race to see who can get their jammies on before Raya's pump starts beeping. Ready, set, GO!"

"Stop pulling on that, you're going to tip over your IV pole!"
"That IV pole is NOT a toy!"
"Raya, stop drinking out of your extension tube!"

"Mommy, Raya's beeping!"
"Look, Mommy, I making that stuff come out of my tummy!" (as she flexes her abs while I'm venting her stomach)
"Raya, get your finger out of your stomach."

"No, you may NOT share your crackers with your sister!"
"Mmmm. That was yummy dinner ice! Thank you for the dinner ice, Mommy."
"Raya, how many ice cubes do you want for dinner?"
"Can I have my ices wet please?"

I know there are lots more that I'm forgetting at the moment but you get the point.

The kids have some interesting words in their vocabularies too. Yesterday, Cole's homework was to draw a double bubble map about the respiratory and digestive systems. (he's 7 and in 2nd grade) He did it by himself from memory and did a GREAT job. He came to show it to me and was trying to remember some other digestive system words. After he described them to me and told me that one was part of the small intestine and one was part of the large intestine, I figured out that he was trying to think of jejunum and colon. JEJUNUM and COLON. What 7 year old knows THOSE words?? He makes his momma proud. :)

And last but not least... I was debating adding this story but what the heck, might as well. So yesterday afternoon, I was putting together the emergency G tube kit for the health office at Raya's school in case her tube ever comes out at school. One very important item in an emergency kit is water soluble lubricant to put on the stoma and the tube so that it will go back in without hurting as much. We don't have any surgi-lube laying around so the cheaper alternative is KY. I was filling a syringe with it and realized that the tube was getting a little low. For a second, I thought to myself, Oh, we're low on KY. Maybe Santa should put some in Raya's stocking...oh wait, that's probably not an appropriate gift for a 3 year old.

Sunday, November 11, 2012

The belated birthday post

I suppose since I did a whole blog post about the birthday cake, I should do one about the birthday girl too. I don't really even know where to start. How can a parent ever put into words or quantify the ways that their child has changed them? I had been a parent for 6 1/2 years when Raya was born. 3 times over, I had done the newborn/toddler thing and I naively thought that I had it all down. I was pretty sure Kaida had been my rough patch (wicked reflux, stress over 18 months of being off the bottom of the weight chart, weekly weight checks, etc.) and that Raya was going to be smooth sailing. (I will pause while you finish laughing at 3-years-ago Me...)
When she was born, everything seemed fine. At the time. Looking back, I can see now that there were little signs. I will never forget one thing that happened when a nurse had come into our hospital room the day after she was born. I was sitting in bed holding Raya on my lap and she was peacefully zonked out. The nurse accidentally dropped a clipboard on the counter, which was about 20 feet away from us, and it made a noise. Not too loud, but it clattered against the countertop. Raya jumped like I've never seen a less-than-24-hour-old infant jump before. The nurse saw it happen out of the corner of her eye from clear across the room and apologized for startling Raya. We both commented that we'd never seen a brand new baby jump like that before. It didn't seem like a big deal then but now that we've seen a greater extent to her sensory processing difficulties, I think that was just the beginning.

Then there was her immediately obvious torticollis and plagiocephaly. Girlfriend had been using one side of my pelvis as a pillow for at least 3 months and her neck & head paid the price for it. I crossed my fingers that it would correct itself once she had a chance to stretch out. (pausing for chuckles again...)

Then there was the spitting up. So. Much. Spitting. Up. It started as soon as the eating started. Some of it was funky. At 2 days old, she was spitting up mucus along with milk. At 4 days old, she lost her voice. I vaguely remember having to sit upright on the couch with her most of the night every night that first week. I think I only remember it because of the time that my mom heard Raya crying and took a shift so I could go back to sleep for a while. It's hard to remember all of those details when the ones I have pictures of are so nice and sweet. You can't use a camera at 3am when you're trying to keep a screaming baby from waking everybody else up though.

Once the spitting up turned into projectile vomiting, I decided the spitting up wasn't so bad after all. That blasted 20-20 hindsight... Looking back on the early days, it's probably good that I had no idea what was coming. There's a reason we don't know the whole story after the first page of a book. If the entire story was thrown at us on the first page, we might change our minds about reading it. I think if I had known in her first week what the first year was going to entail, my head would have exploded. (so eloquent, I know)
She was a few days old. I was still blissfully clueless.

The prophet Isaiah said, "For precept must be upon precept, precept upon precept; line upon line, line upon line; here a little, and there a little:" (Isaiah 28:10). And that is how this story has unfolded. A few tests here, another little diagnosis there, a trial of a new medication, rearrangement of a feeding schedule, lather, rinse, repeat. Little by little for the last 3 years, we have faced new challenges and dealt with them the best that we could. We've set modest goals that we had no idea if we'd meet. We've had many frustrations, disappointments, and exciting times. We've thought we were over the worst of it only to find that the mountain just keeps getting taller. The deepest recurring theme throughout all of it has been that I am not in control and I can't do this on my own. If it takes a village to raise a typical child, then it takes a whole freaking society to raise a child with complex medical issues.

Thankfully, she was born in a place where we have had ready access to a plethora of pediatric specialists with decades of experience and knowledge, but also with the humility to refer a baby that was out of their league to someone they thought could help. We've also been blessed with the help of loving friends and family when we've needed it, and the understanding and support of others who are walking similar paths. (because really, who ELSE would want to listen to stories about puke and your favorite new use for medical tape)

Because of the in-your-face nature of Raya's high-maintenance medical issues, it's been hard to focus on anything else for pretty much the last 3 years. Of course I would never want her to feel bad about that, it's just the way it is. Before Raya was born, I considered myself a fairly organized person. I liked for everything in life to be packaged up in nice, neat little bundles. As we added more and more specialists and appointments to the list, all of that went out the window and I felt completely out of control of anything and everything. Life had been fairly balanced and then it got completely and totally out of balance. I've spent a lot of time trying not to allow guilt and self-doubt to creep in as we've struggled to get things somewhat back in balance.

As Raya's birthday approached, I spent a lot of time thinking about how to put into words the ways that Raya has changed me as a person and as a mother. Some of that is impossible to put into words because there just are none. I was one of those people who never expected to have a child with out-of-the-ordinary medical problems. I had friends who had gone through really difficult trials with the health of their children but after having 3 kids with not a single broken bone, emergency room visit, hospitalization, or anything like that, I didn't see it coming with Raya. I assumed that since we'd made it through 3 with flying colors, the next one would be fine too. Even as we were in the thick of it, it still didn't really sink in that I had a child with special needs. I kept expecting things to be over once the medical mysteries had been solved and she started eating. I wondered how much of "Raya" was being overshadowed by the physical discomforts she was experiencing, the completely irregular schedule dictated by all her medical appointments, and the alternative route by which food enters her body. As it turns out, what we see is pretty much what we get. :) Raya is a little ball of spunk wrapped in pure energy and deep fried in personality.

The last 3 years have taught me that there are many, many, MANY different kinds of patience and I must need a lot of work developing all of them. I stopped praying for patience a long time ago because God kept giving me opportunities to develop it. I am much more mellow than I was 3 years ago. The things that I used to get worked up over and the drama that I used to find interesting and allow myself to get caught up in no longer have a place in my life. It's actually rather liberating to fully comprehend that what so-and-so said about what their best friend's ex-brother-in-law did last weekend has no importance in the grand scheme of things. On the day of Raya's preschool evaluation, (which was pretty much a horrible day for me) I had a little bit of an epiphany. At the time, there was a bit of drama going on with some people close to me and I had been rather caught up in it. Suddenly, when faced with the possibility of Raya not being approved for a program that I felt she desperately needed in order to be successful in her school years, I realized that I DID.NOT.CARE about the drama. I honestly didn't care because what was going on with my sweet girl was what REALLY mattered to me. The drama would come and go, but this was a pivotal moment that would affect her future, and THAT was worthy of my time, not the drama.

I have learned to look at other people with much softer eyes. I remember many times during the months that Raya had her plagiocephaly helmet on her head and an NG tube on her face, feeling like people were staring at her. Every time I noticed somebody looking at her, I couldn't help but wonder if they were looking at her thinking, "Oh, what a cute baby!" or "Hmmm I wonder what's wrong with that baby." I was asked the most ridiculous questions, like if she was wearing the helmet because she fell down a lot or because I had dropped her on her head. Kids would stare and loudly ask their parents what was wrong with that baby. I didn't mind that as much as I minded the parents shushing their kids and looking away awkwardly, as if Raya's conditions were something I should be ashamed of. I never felt like I was negative towards people who looked "different" before, but once I had my own little "different" person, I gained a whole new level of love and understanding. It's HARD to have people stare at your child that way. Not because you're embarrassed by the staring, but because you feel like the person is judging your child as being lesser than someone that looks "normal".

Now that Raya is getting older, I have found myself many times recently feeling humbled by the stares of people who don't understand that her meltdowns don't mean that she's just being a naughty kid and I'm a bad mother for raising a kid that would act that way. That has made me look at other parents with a lot less judgement. I KNOW that I am not seeing the whole picture and that it's really none of my business anyway, and that's how I hope that other people will look at me when my sweet girl is screaming in the aisles of the grocery store or I'm feeding her marshmallows and letting her drink water out of a giant syringe when we go out to dinner and the rest of us are eating real food. All of us parents have the same basic goal in life: raise our kids to be good people and not screw them up too badly in the process. The last thing we need is for other people to come along and criticize us when we're all so good at criticizing ourselves anyway.

I was 27 when Raya was born and I felt like a grown-up then, but I feel like in the last 3 years, I've really had to do some growing up. I've had to learn, sometimes the hard way, that it's okay to NOT always be nice and sometimes you DO have to get tough and be the squeaky wheel even if it's uncomfortable. I've also learned that it's OKAY to be mad and pout and stomp my feet a little bit and that I can do that without taking it out on anybody else, even the people (usually insurance companies/medical providers) who often inspire the pouting and stomping of feet. It's not okay to be mean to people or lash out while being mad and pouting and stomping feet, but it's perfectly okay to feel whatever feelings are evoked by what you're seeing and going through. This life is full of frustrating situations created by the uncertainties, general "busyness" of a full schedule of appointments, and much too frequent miscommunications between different entities involved in healthcare. Keeping all that frustration inside will eat you alive, so sometimes you just have to close your bedroom door and throw a big fat messy-face, crying, angry TANTRUM for a little while before you re-join society.

The last 3 years have taught me to be more appreciative of everything in life, including life itself. Like I think a lot of people are, I was blissfully oblivious to the magnitude of heartbreak that goes on within the walls of a children's hospital but once you've seen it, you can't forget it. Once you've seen a sobbing group of people walk out of the NICU for the last time, or stopped in the long hospital corridor to hug a sweet little mom with tears running down her cheeks and a NICU parent wristband on her arm just because she looks like she could use a hug, or overheard the words "we're just not sure what else we can do at this point," or heard a doctor explain to a 15 year old boy that he will be wearing a colostomy bag for the next 1-2 years, or looked around the surgery waiting room at the tired and worried faces of other parents, or seen a child sitting alone in their hospital room all day because their parents are working extra hours to help pay for medical bills, or even just seen a sweet little baby connected to dozens of wires and tubes, you can't forget that and it WILL change you. Fresh air, freedom, a comfortable bed, being the person in charge of my children, home-cooked food, carpet, my family, my own bathroom, my own couch, my own house, a washer & dryer, a schedule not dictated by appointments, control over the thermostat, peace and quiet (occasionally), and privacy are things that I thought I appreciated before but never completely valued until I realized how many parents spend days, weeks and months without them while their children are inpatient. Gratitude for each and every little thing in my life is something that I have gained in the last 3 years, and awareness that I can't even comprehend everything I am grateful for.

Seeing a baby reach developmental milestones like, oh, I don't know... EATING, is another thing that I've come to appreciate. Those milestones are so much sweeter when you realize just how much harder a child has to work for them than a typically developing child. I've also gained some humility. A lot of it, actually. At risk of sounding snobby and having this come out wrong, I'm saying it anyway. Growing up, school came really easy for me. The hardest subject for me was math but I was still in the accelerated math classes and pulled As & Bs in them. I was in the gifted program. I always assumed that my kids would be smart & school would be easy for them like it had been for me. It has been humbling to realize that there is nothing I can do to keep my kids from having struggles in their own areas. I definitely had areas that I struggled with as a kid, they just didn't happen to be academics. The part of this that has been really humbling in the last couple months is having professionals evaluate Raya and show me on paper where her greatest deficits are, and seeing that they are in areas that SHOULD just come naturally to everybody. They're areas that will make life in general a little more difficult for her. I can't help but wonder how the academics will fit in when she's struggling to even cope with being in a classroom or one day realizes she's the only kid in her class that still wears diapers. THAT is hard to take as a mother, and those are the feelings that I just have to turn over to God and trust that He will help me know how to best support her. I've had to learn to put my trust in Him on a whole new level since Raya was born and acknowledge that I really am nothing without His guidance and blessings.

To my sweet Raya on her 3rd birthday:
Raya, you are one of the most incredible things that has ever happened to me. Our family would be so incomplete without your energy and personality. You have made me learn to let go of control and let things be as they're going to be, and that's a lesson that took me 30 years to learn. I look at the world so differently than I did before you were born and better understand my own purpose in life because of what I have gone through with you and watched you go through. Many times, I've wished that I could make all of your medical struggles go away, but I know that neither one of us (none of us, really) would be the same without them, so instead I do my best to embrace them and learn what I can from them. My hope for you is that because of what you go through in your life, you will also learn to embrace your challenges and have the desire to be a stronger and better person because of them. I hope that you will grow up with a special compassion for others like you and teach your peers how to treat you and your friends who have special needs. Know that just because your needs are "special," that does not mean that there is anything wrong with you. God made you the way he did on purpose and FOR a purpose, and I wouldn't have you any other way. We are in this together, and no matter what, I will never "give up on us." I'm pretty sure Jason Mraz wrote that song just for me so that on the hard days, I can be reminded of the big picture and that you are SO worth every tear I've shed in the process these past 3 years. You are AMAZING, and anybody who ever tries to tell you otherwise is not worth listening to.
I'd be lying if I said I wasn't a little nervous about what the next year could bring, but I'm excited to face it with you and see you grow and develop in your 4th year.
4 months old
3 years old

Raya's Icing Smile

Just after Raya's birthday last year, I found out about a wonderful non-profit organization called Icing Smiles that involves a network of volunteer bakers who donate their time and talents to make birthday cakes for children with medical challenges and their siblings. After reading through the criteria on their website, I didn't think we'd be able to get one for Raya's next birthday so I just shared it with all of our friends instead and hoped that some of them would be able to benefit from it. Our sweet friend Whitney got to have a beautiful cake & cupcakes from an Icing Smiles volunteer baker for her birthday this summer. It was beautiful AND delicious, and I thought about how fun it would be to have a cake like that for Raya's birthday.

As it got closer to Raya's birthday, I kept seeing more and more pictures on facebook of Icing Smiles cakes and although I of course thought that it would be awesome to have one for Raya, I kept pushing the thought aside. I felt like she's doing so much better now than she was her first & second years that we needed to save the privilege for other kids who are worse off.

Sometime in September, Icing Smiles kept coming to my mind. I kept pushing it off as we were trying to get ready to move and didn't have time to think 2 months ahead. I don't remember exactly what changed my mind about applying for one, but I decided to do it and I am SO glad that I did. Even more so now that I'm up to my ears in school work and paperwork trying to get Raya cleared for preschool this week, so I just don't know how I would have had time to make her one. I was afraid at first that she wouldn't be accepted. (I seem to have acquired a little bit of doubt after spending the last 2+ years having to try and convince people that she really does have medical issues...) To my delight, I got an email shortly after applying letting me know that a cake would be made for Raya. I was able to choose flavors, colors, and a theme for the cake and was given the name of the baker who would be making it. Of course, I googled her. :) I found her flickr album with hundreds of the most adorable, beautiful, and clever cakes and that just added to my excitement. I saw a cake that she had made that I knew Raya would be totally in love with, so that was the theme I requested. This was around the same time frame that we found out for sure that Raya was allergic to wheat and a whole bunch of other things but we decided to go ahead with a traditional, allergen-laden cake anyway so the rest of us could enjoy it too. :)

Yesterday afternoon, Donny and I took Raya with us to pick up the cake. Kim, our super-talented baker, brought it out of her kitchen and set it on the coffee table in front of Raya. The look on Raya's face said it all. Her whole face just lit up and she wiggled. (wiggling means she's happy) She pointed to the characters on the cake and wiggled some more. It couldn't have been more perfect for her!

And what was the theme of this perfect, amazingly beautiful cake? Drumroll please...

See how AWESOME it is?!?!?! I was just beyond words. So was Raya. :) Here she is getting her first peek at it:
And here's Raya and her cake with the oh-so-talented Kim:
I hope that it made Kim's day to see how much Raya loved the cake because it totally made mine. :) She obviously put a lot of time and hard work into it. Here are a couple of pictures where you can see the detail a little better.
The little Uniqua popping out of the top of the cake was my favorite. :) So clever! :)
Here's what Raya having an Icing Smiles cake means to me. I spent the first year (and then some) of her life cleaning up constant puke, seeing her suffer through horrible episodes of vomiting and retching, holding her down for countless medical procedures and needle pokes, seeing her develop a complete disdain for anything edible, and wondering if ANY of it would ever get any better. I remember in the weeks leading up to her first birthday feeling sad knowing that even though I was planning to make the first birthday cupcakes that were a tradition in our family, she would want absolutely nothing to do with them. When the day came, she poked at it a little bit and fed a little of it to Mommy, but that was it. We were fortunate that she didn't vomit when we accidentally got frosting on her lip and put the cupcake on the tray in front of her. Although I was excited for her birthday that year, the happiness was greatly overshadowed for me by an increasing awareness that Raya's medical issues were scary, and they were not going away anytime soon. Her second birthday was MUCH better. She was just in a better place medically and actually took a couple nibbles of her cake. This year, the road ahead of us is still long and new bumps have recently surfaced (i.e. food allergies, difficult ones) but Raya is growing and thriving. Seeing her get as excited about something that was FOOD as she did about her cake yesterday was something that I never even allowed myself to imagine on her first birthday. Although we are still trying to find the missing pieces of the puzzle and the road ahead of us seems unending at times, moments like this give me hope that one day, we will be able to say our goodbyes to the feeding tube and see Raya grow and thrive as an oral eater.
To Icing Smiles and to our wonderful baker Kim, thank you is not enough to express how great this experience was for me as Raya's mother.
1st birthday
3rd birthday!
For information about Icing Smiles, go to or find them on facebook at

Thursday, November 8, 2012

Something fun

I feel like everything I've posted lately has been negative. I suppose a lot of what we've had going on has been less than positive, (like how Raya's medicine is STILL not here even though it was promised to me by last Friday or this Monday at the latest...) but we really do have fun sometimes and Raya is a sweet and delightful child. :)

Yesterday Raya's Aunt Holly got married. We waited for them in the bright sunlight & 89 degree weather outside of the temple. The kids were bored to tears but they were good. :)
I'm not sure where Ashtyn's other leg disappeared to. My sister-in-law must have snapped her picture at the same time as I did because Ashtyn was missing a leg in her picture too. :)

We didn't stay there long because once they came out, it was time to get ready for the reception. Obviously my kids were nowhere near ready since I had grabbed them from school & rushed over. I felt SO bad when we got home because Raya was having some issues. in a sensitive area. due to accidental ingestion of food she's allergic to. Well, she didn't ingest it on accident, she totally meant to. I just accidentally didn't catch her in time & prevent it from happening. I don't even know what she ate but whatever it was hit her hard. Thankfully she was feeling better by the time we left for the reception. I found out the hard way that Raya does not do tights with feet. The whole time I was putting them on her, she was telling me no and begging me to take them off. I made her wear them while I did her hair, thinking that maybe if she had them on for a few minutes she'd get used to them and leave them on. Instead, she sat there the whole time tugging at her toes and yelling, "I want these tights off!" As soon as I finished her hair and put her down, she ran out of the room and then came back with no tights on. I don't even know what happened to them. :)

The reception was really nice and the kids had the time of their lives out on the dance floor. :) Well, first Raya spent about 10 minutes lusting after the delicious pieces of wedding cake that were taunting her. She just stood and stared it. Every now and then she'd pick up her hand and reach out like she was going to touch it, and then put her hand back down. She'd look over at me and pop out the pouty lip. The big kids would try to pat her back and talk to her and she'd brush them off and frown. It was pitiful and made me sad for her.

She was really whiny the first 20-ish minutes that we were there and I finally realized it was because her shoes were bothering her. Someone is going to have to get used to wearing something other than flip flops! Once she got rid of the shoes, she saw that the big kids were all dancing so she forgot about the cake and her sore feet and joined them. She had the time of her life! We had a talk about being a big girl and leaving her backpack on and she did a great job with it. She never even asked me to take it off for her. I was proud of her and it gave me hope that she'll wear it to school without making a fuss.

Uncle Adam is a really good sport and spent a lot of time dancing with all of his new nieces. :) They loved it!

Raya and Kaida with one of their cousins. It was fun getting all the little girls dressed up. :)

Raya and Aunt Holly

The kids lasted a lot longer than I expected. They danced for a solid 2 hours and I could tell they were exhausted. We got home at 9, which is 2 hours later than they usually go to bed. Raya was out cold before we left the neighborhood where the reception was so I just plopped her on the couch when we got home. It was a shame that she needed a clean diaper or I would have left her there all night. :)
It was a fun evening!
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