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**Disclaimer**

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


Sunday, September 22, 2013

The 3 Princesses Reunite

Remember these darling little princesses?




It's hard to believe but it has been 18 months since we took those pictures. A lot of things have happened since then, both good and not so good, but these little girlies are working hard and growing up and still as adorable as ever! Now that one of them has moved out of the state instead of just WAY across town, it's even harder to get together with Raya's little friends, so when we heard that she was going to be in town and they were all healthy enough to be around each other, we jumped at the chance for a quick get-together.

Raya and I made the long trek across Phoenix at rush hour to meet up with the other two families. Some of Phoenix's freeways are more harrowing to drive on at rush hour than others, and we were on one of the bad stretches. It was a bit nerve wracking until my right contact lens popped out of my eye. Then it was a bit terrifying, especially after getting out of the bumper-to-bumper rush hour traffic onto the westbound surface street directly into the setting sun with one functioning eye and really bad depth perception, but we survived and made it there with just enough daylight left to snap a few pictures. I haven't had time to edit them yet so most of these are straight from the camera, but they're just so cute that I'm sharing them anyway. :) I sure do love these little girls!









 
I ♥ ♥ ♥ this picture!! I'm not even sure what they were
looking at but their facial expressions are priceless!
Can you believe how much they've grown up in 18 months?! They've all had bumps in the road medically in the last 18 months (one much more so than the others) but if you ask me, they all look amazing!

This last picture tugs at my heart strings every time I look at it. Last week, someone left comments on a couple of my YouTube videos that illustrated for me just how great the need for feeding tube awareness really is. Two of the videos were of me changing Raya's feeding tube, and the other was the video I made for Feeding Tube Awareness Week in 2012. The comments were to the effect that Raya shouldn't have a feeding tube because clearly, she's not disabled and that feeding tubes are only for the most disabled people. To this commenter and to anyone else who is under a similar understanding that feeding tubes are only for the severely disabled and dying, let this picture and these little girls be a lesson to you. For little children who can't or won't eat and for anyone who has lost the ability to swallow safely or eat enough to sustain life, feeding tubes are the giver of life!

In case you were wondering, Lily is pushing her TPN bag and feeding pump bag in a doll stroller. ADORABLE! It was so much fun to get the girls together for a little while and listen to them chatter, giggle, and play. We ♥ our friends and can't wait until next time!

Wednesday, September 18, 2013

Tah-MAY-doe chips

Try as she may, Raya gets tongue twisted when she tries to say potato, and it almost always comes out as tomato instead. I can't help but wonder what other people are thinking when they overhear Raya ask me for "tomato chips", or rather "tah-MAY-doe chips". This past week, we have come to suspect that in spite of her negative allergy tests (multiple) for corn, she has been having a very subtle allergic reaction to corn and/or Duocal (which is pretty much just a mixture of cornstarch and oils). We've subtly been cutting her off of corn products and replacing whatever we can with potato, so the tortilla chips have been traded in for potato chips. I don't love handing her potato chips, but with a kiddo like her, you do what you gotta do.

I mentioned before that she had dark circles under her eyes and just seemed to be getting more and more run down and just generally unhappy and seemed off. I forgot to put Duocal in her formula one day last week and then decided to leave it out again the next day and see what happened. Oddly enough, she was sweet, happy, pleasant, and just downright delightful the entire day for the 2nd, 3rd & 4th days that she was off of it. On Sunday, we put her back on it. By Monday, she was a little gremlin. She fought me tooth and nail to get ready for school that morning, although not quite as bad as the meltdown a couple weeks ago. She was about as stubborn and defiant as I've ever seen her about every single tiny detail of getting ready for school. Yesterday was pretty much the same except that she didn't have school so she was home with me the whole day. {it was a very, very loooooooong day...} She refused to wear normal clothes and it wasn't worth fighting with her so she wore the damp, smelly pajama pants she had slept in underneath a 3 sizes too big Snow White costume and her knock-off Croc shoes (on the wrong feet, of course). Whatever. That alone made me glad she didn't have school because that's what she would have worn. Instead, she insisted on helping me plant the rest of the garden in the aforementioned get-up. Here she is planting some cabbage seeds.

After the cabbage (which I didn't really care about because I usually end up ripping it out because of bugs before it even vaguely resembles cabbage), she insisted on helping me with the spinach and all of the herbs, which all had microscopically tiny seeds that I even had trouble picking up. Factoring in a girl with the fine motor skills of a 3 year old who is having ridiculous mood swings and it will be interesting to see what ends up growing where.

Given the way yesterday went, I discussed it with Donny and a couple of my very smart mommy friends, and made the executive decision to stop Duocal indefinitely and replace those 75 calories with extra formula or food. She is already in a better mood today. I have wondered during the last 7 days if not getting enough sleep had something to do with the crabbiness but she didn't get a great night's sleep last night either and she's in a great mood today. (She woke up at 1:00 because her stomach and throat hurt.) Her energy level seems closer to normal too. Obviously there are multiple factors involved in all of her symptoms but I think we've seen enough evidence this week to reasonably conclude that Duocal isn't doing her any favors. It may not have anything at all to do with corn. She's had lots of things with corn & cornstarch without any noticeable effects, so it could just be that Duocal makes her feel crappy. At 42 calories per tablespoon, I can imagine it might not sit too well. She's never really been able to verbalize her physical discomfort beyond telling me her stomach hurts & she has puke in her throat, so behavior is usually our indicator that something is off. We shall see how it goes.

We also made the adjustment with her gabapentin to 3 times a day rather than twice. I think it would be helping if it wasn't for the fact that her delayed gastric emptying/gastroparesis and reflux are making her feel yucky late at night. We just started her back on a PPI (proton pump inhibitor, aka stronger reflux med) so hopefully soon that will start to kick in and help her feel better at night. {on a side note, I saw that insurance was billed over $400 for just the one new reflux med. in-freaking-sane.}

Anyway, today has gone fairly well, especially considering how well Raya handled me telling her that her respite provider had to cancel for today so she could take her puppy to the vet. She had texted me shortly after I took Raya to school and I knew Raya would be mad. She asks me about 20 times a day what day it is and if her respite provider is coming, and she knows that she comes after school. Sure enough, on the way to the car, she said something about it and I had to tell her that she wouldn't be coming today. Raya stopped walking, put her head down, and pouted right there in the middle of the parking lot. Thankfully she was already in a pretty good mood or it would have been worse. I reminded her that we had talked yesterday about painting our nails, and then she started walking again and thought that sounded like fun. The second we walked in the door, she put her shoes away and headed for the basket of nail polish.
I painted her fingernails and toenails and thought we were done but then she got a sad/surprised look on her face and said, "Aren't you going to let me paint YOUR nails now?" I will admit that I can be a bit of a control freak, especially when it comes to things like nail polish that can potentially ruin anything and everything it touches, so the idea of letting my 3 year old paint my nails was not at all appealing, but I let her do it anyway.
We can always tell when she's concentrating on something because her torticollis tilt comes back. :) The pictures make it look nicer than it actually was but she did a surprisingly good job for a kid her age. Thanks to the deep crimson red color, some of my toes looked like they had been massacred by the time she was finished but she had a great time doing it and was pretty proud of herself.

I, on the other hand, was proud of myself for leaving it just how she did it (aside from cleaning up the excess polish that was dripping down the tips of my toes) and not fixing it. :)

Thursday, September 12, 2013

Neuro and GI follow-ups, part 2

After we got done with Raya's neuro appointment, we had an hour to kill before it was time to see her GI. We stopped at the nurse's station to get her sticker & Dum Dum (peach-mango, the only flavor she's interested in right now) and then went across the street to get lunch. I was starving. She was getting tired by then and had to touch everything in the sandwich place. Then she got upset because I said we were going to get in the car and go back across the street to the clinic and eat in the car instead of staying there to eat. They had said they'd call if the doctor got back from lunch early so I didn't want to be across the street if they called us. Then she got upset because the guy only gave me one water cup and their lids didn't fit it so I didn't let Raya carry it. Then she got upset because I grabbed her when she tried to run away in the parking lot. Then she got upset because I put her in her car seat instead of letting her climb in (sllooowwwwwwllyyyyyy) by herself. Then she got upset because I helped her buckle. (you get my point)

I knew it was not going to be a pleasant visit with her in that sort of mood. She perked up again in the waiting room when I let her play a game on my phone but then she only got to play for 2 minutes before the MA came to take us back. I didn't let her carry my phone so she got mad. Thankfully we had already done her weight & height because she wasn't feeling very cooperative by that time. I gave her my phone back when we got into the room and she showed me a happy face. Then the doctor came in a couple minutes later and I had to take the phone away from Raya again because she started dialing. For the next 10 minutes or so, she made it difficult for the doctor and I to carry on a conversation.

There was a lot to talk about at this appointment. Dysmotility was at the top of the list. Well, actually, the first thing we talked about was Raya's weight. The MA had mistakenly written down 14.06kg instead of 14.6, which made it look like she had lost a pound since July. Thankfully, I had also looked at the scale and written the weight down. We quickly re-weighed her with clothes on to see whether she was closer to 14.06 or 14.6 and with clothes, she was 14.7. Glad I caught that or we would have spent most of the appointment freaking out about her losing so much weight in 2 months. 14.6kg was still nothing to be excited about. She has weighed exactly the same at her last 3 visits, which means she hasn't gained an ounce since May. In all honesty, it's pretty much my fault for not being more vigilant about counting her calories so we'll be paying closer attention.

Other items on the list included:
-low energy levels recently
-"allergy shiners", aka the dark circles under her eyes that are typical of kiddos with allergies
-still complaining often of throat pain (from reflux)
-skin rashes that correlate with ingestion of food she's allergic/intolerant to have been showing up when she's not eating any of the problematic foods
-has been waking up at night more often
-has had more big meltdowns in the last week than she has in a long time, which we think is food/pain related
-and of course the delayed gastric emptying

For her reflux, we had weaned her off of Prilosec (a proton pump inhibitor, or PPI) to see how she would do off of it and put her on Zantac (an H2 blocker) instead. Both meds reduce stomach acid but by different mechanisms. H2 blockers would be like turning off the light switch, and PPIs would be more like removing the light bulb or disconnecting the electrical wiring. Or something like that. :) She's not necessarily horribly worse than she was with the PPI, but she's not better either. We decided it's time to put her back on a PPI even though it makes me sad to have to do that. We're going to try Nexium for a while (in combo with the Zantac she's already on) instead of Prilosec and see how she does with it.

**I have to interject something here. I've had people ask me if the fact that we're suppressing Raya's stomach acid production could be the reason for her delayed gastric emptying since it could be inhibiting the breakdown of food in her stomach. (I've questioned it before myself, actually, and discussed it with her doctor multiple times.) My answer to that is no. We've had her on varying levels of acid suppression in the past few months (and throughout her whole life), and even at the most minimal dose of the weaker medication (on which she has miserable reflux symptoms) her stomach still does not empty properly. It is not a matter of the level of mechanical & chemical digestion going on in her stomach, it is a motility problem, which can be either a neurological problem or a muscular problem, or a combination of neurological and muscular. As much as I wish she did not need acid suppression therapy, not giving her medication for it does 2 things. First, it makes her feel crappy and have poorer quality sleep from waking up choking on refluxed stomach contents. Second, it puts her esophagus at risk of long-term damage since esophageal tissue is not meant to be exposed to highly acidic stomach acid. Left untreated, acid reflux can cause things like esophageal strictures, ulcers, and histological changes that can eventually lead to cancer.**

We talked again about her current dosage of gabapentin, which is used to help control her visceral (gut) pain. She's been on the same exact dose for well over a year and has grown a decent amount in that time. (except for between May and now...) As I mentioned yesterday, the neurologist said that the half life of gabapentin is fairly short so it is common to give it 3 times a day instead of twice a day. (that reminds me, it's time for her mid-day dose...) We're going to increase her to 3x daily and see if it helps with the pain she's having.

The biggest issue we had to discuss was Raya's motility. To sum it up, there's not much left to try except for botox (which both of her insurances denied emphatically) and surgical intervention. We've been discussing for months now that it might be time to consider a fundoplication surgery for her persistent reflux as well as a pyloroplasty to deal with the delayed gastric emptying. The consensus is that a fundo would be too risky for Raya because of her history of retching & vomiting, so we definitely don't want to go there unless she has a drastic increase in reflux symptoms or complications from it.

As far as the delayed gastric emptying though, without being able to get insurance to approve trying botox, that option is probably off of the table. Her GI is going to talk to one of the motility specialists at Boston about it because she thinks there's a possibility that if it was done at a motility center, insurance may cover it. My personal feeling is that since botox is temporary, I don't see a point in flying across the country to do something that's going to wear off in a few weeks but I am interested to see what she has to say about Raya's case. Having already done motility studies, I don't see much of a point in going out of state for testing again unless they have an actual treatment option to offer.

We are now discussing more seriously the option of doing a pyloroplasty to help Raya's stomach empty more normally (but hopefully not too fast). For reasons I'm not going into, it would be better to do it sooner than later so we're going back for another visit in 6 weeks instead of 2-3 months. In the mean time, she's going to be talking with the motility doc in Boston and get back to me in the next week or two about what to do next.

Recently, I've caught myself saying things like, "Not that I want to rush into surgery..." and then thought, wait a second, we're not RUSHING into ANYTHING!! We've been patiently dealing with this for her entire life! We've tried darn near everything there is to try, including medications, natural remedies, diet changes, feed schedule changes, feeding her intestine instead of her stomach, and "movement therapy," and yet here we are.  Yesterday morning, I was about to give her the morning doses of her medications and she stopped me. She said her stomach was full of formula (her words, not mine) so I vented her. There was 7 1/2 hour old formula in her stomach, which is concerning enough in and of itself, but there were also tiny bits of peaches that she had eaten for breakfast the day before. That means the peaches had been in her stomach for no less than 19 hours. Suddenly, I understood why she (and subsequently I) had gotten such a crappy night's sleep. That is not normal and it's not okay! How can we ever expect her to eat 100% orally when that's how her stomach is functioning?

Anyway, overall it was a productive visit and I feel like we will be making decisions soon about moving forward with the pyloroplasty or not. Incidentally, we are in agreement that a pyloroplasty could significantly improve Raya's reflux by increasing her rate of gastric emptying. That would be awesome.

After her GI appointment, we stopped by the nurses' station again to get another Dum-Dum and sticker and then stopped on the way out to schedule her next appointment. The recurring theme the whole time we were at the clinic was, "Oh my goodness, she's getting so big! I remember when she first started coming here and she was just a tiny baby!" At least 4 people said it. It's crazy to think about how long we've been going there and how much time we've spent there in the last 3 years and 8 months.

She was super crabby by the time we got home and had another big meltdown. I just let her roll around on the floor and throw her fit and while she did that, I turned on one of her favorite Leap Frog videos. After a few minutes, she stopped moving and just laid there and watched it. Hopefully we won't have to do school + 2 specialist appointments in one day again anytime soon!

Wednesday, September 11, 2013

Neuro and GI follow-ups, part 1

It has been a long day. (So long, in fact, that this will be split into 2 posts because I have a lot to write about.) Actually, first it was a really long night. Raya woke up around 10 last night, which isn't unusual. She wandered out into the kitchen and said she needed a drink. Then she went back to bed. Then she reappeared 30 seconds later to tell me something and went back to bed. Then she reappeared about a minute later to get another drink. Then she came out about a minute after that with a blanket and no less than 5 stuffed animals and said that she just wanted to lay down with me. At that point, she was totally awake and in a pleasant mood so I didn't think it had anything to do with her not feeling good. She didn't show any signs of not feeling good.

When I was ready to go to bed, she was not ready to go back to her bed so she made herself a little spot on the floor next to my bed. That was fine with me because it meant that her pump was within arm's reach of my bed so I didn't have to get up and walk to her room to turn it off at midnight. I don't know at what point in the night she got in bed with us but holy smokes was she restless! She was tossing and turning, fussing, hitting me, pushing me with her foot, etc. Finally at 4:00, I got whacked across the face and enough was enough. I told her I was going to the couch and after a little bit of pouting and fussing, she came too. I figured at least that way Donny would get one good hour of sleep before he had to get up for work.

It was a lousy night's sleep followed by kids fighting over something incredibly stupid at 6:00, followed by the nastiest diarrhea poop-splosion Raya has had in a long time. It had that definite funky diarrhea odor to it, plus the very strong smell of the chocolate Neocate she had in her pump last night. She's had chocolate Neocate before, so I don't think that was the problem. Like I said before, she has no other symptoms or signs of an illness and her teacher said none of the kids in her class at school have been absent with stomach bugs, so I don't know (yet) where this came from.

After I cleaned her up and got her ready for school (with the help of her awesome big sister) we got the big kids off to the bus stop. I got her meds ready and when I was about to give them to her, she said that her stomach was full of formula. Because of the poop-splosion, I decided to vent her into a catheter bag and see what came out. Sure enough, it was formula. I got about 2 ounces out, along with some air, and stopped. Given that her last feed had stopped shortly after midnight and it was 7:30, that was a long time for formula to sit in her stomach. What's worse was that there were little orange floaties in it. After racking my brain to try and figure out what it was, I realized that it was little bits of the peaches she had eaten before noon yesterday. As in 19-ish hours before. Not great. If she does happen to have some kind of mild stomach virus, that would actually be better news than just having her motility be that crappy.

Speaking of crappy, just before I left to take her to school, I found a puddle of diarrhea on her bedroom floor. Dang poop-splosion. While she was at school I finished prepping my notes for our visits with the neurologist and GI doctor this afternoon. I don't like seeing more than one doctor in a day but our GI appointment got moved from Monday morning to this afternoon and I really just wanted to see GI so I didn't care.

I picked Raya up a few minutes early from school and we headed to the clinic. This may not seem blog-worthy but the parking lot was packed (it's usually pretty empty) and we still managed to snag the closest parking space to the front door. I was pretty happy about that.
being a kitty
showing me how she can snap & tie her gown all by herself
impatiently waiting for the doctor to come in and mad at me for
telling her not to play on the colored squares in front of the door

We had a great visit with her neurologist. I LOVE her!! I think the biggest reason I love her is because where everybody else involved in Raya's care likes to point out all the things that are normal about her that mean she couldn't possibly have CP or anything else wrong with her, her neuro points out all the things that show signs of a brain injury/CP. She is very reassuring that we're not all just making things up and Raya really does have some type of abnormality in her brain that has caused so many of the issues she has, even if the MRI didn't pick it up. To name a few, she has low muscle tone in her trunk, increased tone in her lower extremities, has difficulty doing things that require her to reach across her body, makes fists with the thumbs inside instead of outside (especially on the left, which is her weaker side), and is really clumsy. I also feel like her muscle tone issues affect her digestion & probably contribute to some of her GI problems, and also made it extremely difficult to resolve her congenital torticollis.

We discussed all the things on my list of concerns and I told her about all the things I've taken note of since we saw her in April, including the incident last week with her skin turning funky colors in the bath. (she was in a tub of lukewarm water that would have been too cold in about 5 minutes, and her skin was bright red like if the water was hot but she also had bright white patches on her cheeks and around her mouth & nose) Add in the excessive sweating and seeming lack of awareness of being too hot or too cold, and her neuro is convinced that she has some form of dysautonomia. It is fairly common to use beta blockers to help lessen the symptoms but neither of us feel like she is to a point where she needs that, so we'll continue to monitor her. If at any point she shows signs of cardiovascular involvement (like fainting or dizziness when going from laying/sitting to standing, etc.), then we'll talk about beta blockers. Again though, it's just nice to have a doctor validate what we believe is going on.

Another thing we went over is just how much of a difference the clonidine is making for her. I always hesitate to talk about it on the blog because a lot of people have very strong feelings about using medications to help kids go to sleep and using medications to help improve attention/focus and behavior. If you are one of those people, you are welcome to skip this part or else read it with a very open mind. I cannot say enough about the difference clonidine has made for her in both of those areas.

Before we started clonidine, she was not sleeping nearly enough for a child her age. She was having serious anxiety that was making it extremely difficult for her to be still long enough to fall asleep. She was still tired enough during the day that she genuinely needed to be taking a nap during the day, but even when she WANTED to, she couldn't go to sleep. At night, she would lay in her bed for hours without being able to fall asleep. She was catching virus after virus and taking longer than she should have to get over them because her body wasn't getting enough rest. I can't even describe what it felt like the very first time we gave it to her and watched her peacefully drift off to sleep. I was torn between being giddy that she was actually asleep before midnight and being relieved and happy for her that she was finally getting the rest that I knew she so badly needed. At times, comments have been made that implied that we were taking the easy way out by giving her a sleep aid or that we were doing her harm by not using a more natural sleep aid like melatonin (which did not work for her and doesn't do what most people believe it does but that's another topic for another day). I have bitten my tongue but honestly, I have no regrets and no guilt about using medication to help her go to sleep. We tried melatonin and it did nothing for her, and she was to the point where the lack of sleep was affecting her health and her ability to function during the day so it was and is absolutely the right thing for her.

We have also realized recently that clonidine has a very positive effect on her demeanor and ability to focus during the daytime. This was discovered kind of by mistake. On occasion, we've missed a dose because we've been out of the house late into the evening and we've noticed that she's kind of wild & crazy the next day but we always assumed it was because she stayed up too late. This past week it was time for a refill. I called with the same amount of advance notice that I always give since it has to be compounded, and they told me it would be ready in 1-2 weeks instead of 1-2 days because they had changed computer systems a month ago and hadn't moved it to the new system because I hadn't ordered it since they made the switch. They apparently couldn't bother to tell me in advance that it was going to take 2 weeks. Anyway, we ended up filling it at their other location that's 15 miles away but in the mean time, we had started rationing what we had left so we wouldn't run out. We cut her dose to 2/3 of what it normally is. It still made her go to sleep, but she was not the same during the day. She was all over the place and had a hard time staying focused on anything. Her demeanor was not the same, and that wasn't a good thing. After seeing that, we are again convinced that clonidine is benefiting her ability to stay focused on things longer and is likely helping her in school as well. I don't like the word "easier" but I think it makes her daily tasks less difficult for her. I don't know how long we will keep her on it but for the time being, it is serving her well and we know it's what she needs.

Moving on... Last but not least, we discussed the dosage of her gabapentin, which is for visceral hyperalgesia, aka hypersensitivity of the nerves in her digestive tract that causes pain. She has been on the same dose for longer than I can remember. I need to look it up and see how long it's actually been since we changed her dosage, but my guess is around a year. As it turns out, this med has a short half-life and is better given 3 times a day than 2, so we're going to bump her up to 3 times a day with a slightly higher dose and see how she does with that. They tell me this med can make kids sleepy but that has never been the case with her, so we shall see. :) An afternoon nap with her afternoon dose wouldn't be a horrible thing, especially on school days.

When we were all done talking about everything, the doctor said, "I'm so glad that her bigger problems are GI and not neuro." I told her I agreed. As difficult as Raya's GI stuff has been at times, I look at what some of our friends with serious neurological issues go through and count my blessings that Raya's problems are what they are because it could be so much worse. After we had our updated prescriptions in hand, we said goodbye to neuro for 6 months and headed out to wait until it was time for GI.

To be continued...

Tuesday, September 10, 2013

My blue-eyed ball of spunk

There really is no other way to describe this girl. She is just plain old spunk in the form of a 32-ish pound, red haired, blue eyed little girl. See what I mean?
(I know this looks like a sad puppy dog face but it's actually an angry face because I said no to something)

(this is probably an "I'm thinking about doing it anyway even though you said no" face)
The bargaining stage

And finally, playing the "I'm cute and you can't resist me" card

Oh, I just want to squeeze her! Actually, I've done that several times already today in between bouts of her being mad at me for various reasons.


We have had this exact conversation more than once today:
Raya: Is Courtney coming today? (respite provider)
Me: No, she's not coming today.
Raya: What day is it?
Me: Tuesday.
Raya: So Courtney doesn't come on Tuesday?

Me: No, just Monday & Wednesday.
Raya: *sigh* Well, that's not fun. Who's going to play with me today?
Me: I guess it's just Mommy playing with you today.
Raya: *bigger sigh* Well that's not fun either.

In spite of her disappointment at being stuck with boring old Mommy, we've had a pretty good day. We took advantage of the very nice, cool weather this morning (75 degrees felt AMAZING) and tore all the dead stuff out of the wet, muddy garden so we can start planting our fall garden. I had never heard those two words used in the same sentence until I moved to this state, where there are really only 2 seasons (summer and not summer), but we really can plant something just about every month out of the year. I was surprised to find that some of the pepper plants are still alive, along with the eggplant. Everything else was dead as a doornail and easy to pull out, especially after all the rain we've gotten the past few days. Hopefully we'll be able to do some planting this week. Raya was a pretty good helper and especially enjoyed telling me what to do and wearing grown-up gloves and using the little shovel.

You can't really tell in the picture but she was giving me instructions. She is the self-appointed foreman to most projects these days. Including doing her hair. This morning she requested 2 ponytails. I put one on the left side of her head and then she insisted that the other one had to be on the back, so she had one on the side and one on the back. Then and only then was she satisfied and ready to get to work. Such a silly girl! As frustrating as it can be at times, I love seeing her little personality come out and I love that she knows what she wants and is assertive about it.

Monday, September 9, 2013

Rainy days

It's not often that I get a chance to call a post "rainy day" and even less often that I get to call one "rainy dayS" but we've had some rainy days this weekend! The sky was pretty cloudy when the kids got home from school on Friday and by 4:00, it was almost dark outside (and inside). It started to get windy so I went out to the back yard to pull up the shade on the porch so it wouldn't get ruined and that's when it started raining. It was probably still about 85 degrees outside so it felt great! So great that I decided the kids needed to go out and play in the rain for a while. When we do get rain storms, it usually dumps rain for about 5 minutes and then stops. This was the usual heavy dumping rain but it lasted a LOT longer than normal. They were in HEAVEN!

They ran around until they were soaked to the skin and covered with grass. They were SO happy! As excited as they get about rain, I can only imagine what they'd think of snow. Only 3 of them have ever even seen snow and none of them actually remember it. Arizona kid problems. :) For now, the rain will do!

And here are some from my real camera, which I do still occasionally use. :)


When they were all done and dinner was ready, I met them at the door with towels and then sent them to the showers before they ate dinner. They had worked up quite the appetite and kept going on and on about how delicious dinner was.

Saturday was a pretty nice day weather-wise too. It was overcast all morning and didn't get hot until the sun came out in the afternoon. The girls and I went to an adoption party for some of our little tubie buddies. It was a sweet experience and I'm so grateful for all of the amazing people we have met because of Raya and her tube.

Sunday morning we woke up to a steady drizzle of rain, which is not something we get very often. It was a gorgeous day and our poor dying lawn is loving all this rain. Sunday night I remembered that I hadn't written down all my prep notes for Raya's Monday morning GI appointment so I wrote down everything I could think of and then had a crappy night's sleep because she had a crappy night's sleep. She's been off lately. It's hard to put a finger on it but something just isn't quite right with her. You can tell by looking at her. (or at least I can, Donny can, and a couple of my friends can)

I was really looking forward to her GI appointment today because we have a lot of big things to talk about. Her appointment time was 8:30 and I got a call at 8:05 that they were canceling because the doctor was out. As understanding as I am trying to be, having an appointment that you have to spend a lot of time mentally prepping for, emotionally prepping for, and writing out detailed lists of everything you need to discuss is very frustrating. It's like studying for a big exam, psyching yourself up to take it, emotionally preparing just in case it doesn't go well, mentally prepping to be tough when you need to be, and then showing up and finding out that it's been rescheduled and you'll have to do all the prepping over again on another day. Someone else called me back a few minutes later to reschedule and fortunately was able to get us in on Wednesday afternoon. It will make for an interesting day since she has school from 8-11, a neuro appointment at 11:30, and then GI at 1:00. She's going to be crabby. We probably both will be. At least we're getting in to both of them this week though. We've been waiting since July to see neuro and we're happy that she's finally back. There are a few things to talk to her about too.

We woke up to another steady drizzle of rain today. It was definitely raining harder today than yesterday. After her appointment got canceled we had to get her ready to go to school (since we had planned on either being really late or not going at all) and headed out in the rain. We got pretty wet walking from the parking lot to the school but not nearly as wet as we got when I picked her up. It was raining a lot harder by then. Raya giggled and laughed all the way to the car because she thought the rain was so funny. I was carrying her pump bag on my shoulder and carrying her, and I put her school backpack over her head to keep her from getting quite as wet. She thought that was pretty funny too.

The afternoon turned out to be about as disappointing as the morning. I had lunch plans with a friend during Raya's respite hours but that got canceled because of the rain, and then I didn't have enough time left to go grocery shopping before Raya's respite provider had to leave and hadn't gotten my other errands ready to run since I had planned on doing other things this afternoon so I've accomplished nothing today. Now the beautiful overcast, rainy skies have cleared and it's bright & sunny again, which I know sounds like a good thing but I was really enjoying the cooler weather. Hopefully the rest of the week will go better and the appointments will all go as scheduled and be productive.





Thursday, September 5, 2013

Allergy-friendly recipe: Black Bean Brownies

I admit, "black bean brownies" does not sound appetizing. Except for the "brownie" part when you ignore the "black bean" part. When you're working with as few ingredients as we are currently and you're a 3 year old girl that hasn't had anything resembling dessert in 10 months, you don't CARE what the brownies are made out of as long as they don't taste awful! (and they didn't)

My favorite part about this recipe (aside from how few ingredients it takes & that Raya isn't allergic to any of them) is how EASY it is. Since you're working with whole black beans, you have to use a blender to mix the batter. That means you throw everything in the blender so you only dirty the blender, a couple of measuring cups/spoons, a rubber spatula, and the pan you bake them in.
 
The batter might look a little scary but it smelled WONDERFUL and since it was something I was finally able to bake for Raya, it was the most beautiful batter ever.
 
{I ♥ my Vitamix!}

I had made some alternative-ish desserts before (like chocolate cake with beets in it and chocolate chip cookies with white beans in them) but had never made anything quite like these brownies so I didn't know how they would turn out. They smelled great in the oven!
 
 
While they didn't taste like or have the texture of a boxed brownie mix (who could expect them to though, right?!) they turned out great! They're extremely moist and don't have even a hint of bean flavor to them. I would imagine that if you ate too many, they would have the same effect as eating a lot of beans would have, if you catch my drift. They tasted good enough for me though, so I was pretty sure Raya would be happy with them too.
 

The reason I had hunted down a "Raya-safe" recipe was because we were having a birthday party for her big sister and I am so tired of handing her Smarties and expecting her to be happy with that and not wish she could eat the cake everybody else is eating. It's crappy. The smile on her face when I handed her a little purple plate with HER "brownie-cake" on it totally made my heart melt.
 
She LOVED sitting at the table with the other kids and eating her brownie while they ate their cake & ice cream and I loved seeing her so happy. (although I was a bit nervous watching the wheat-laden cake crumbs flying & crossed my fingers that she wouldn't accidentally eat any)
 
Unfortunately, she woke up with a stomachache later that night. We're not sure yet if it was because of the actual brownie or because she ate so late in the evening. (we usually don't let her eat solid food after about 5:30pm because it sits in her stomach for hours) Beans & legumes are not gastroparesis-friendly so we will limit her bean brownie intake to once in a great while and only early in the day. Last time she ate a little piece (at lunch time), it was coming out her stoma a little while later so yeah, stomach problems, but whatever. It made her happy. :)
 
Here's the recipe, which is adapted from this recipe:
  • 1 can of black beans (15.5 oz) drained and rinsed thoroughly
  • 3 eggs (or equivalent amount of a safe egg substitute)
  • 3T vegetable oil (we used canola but could have also used coconut)
  • 1/4C cocoa powder (I used a generous 1/4 C, so probably 1/4C + 1-2 T)
  • 1 pinch salt
  • 1 1/2 tsp vanilla extract
  • 3/4 C white sugar (I used slightly less)
  • 1tsp baking powder (if you're not able to use corn products, make sure it's a cornstarch-free baking powder)
  1. Preheat oven to 350 degrees F and lightly spray an 8x8 baking dish with cooking spray.
  2. Add black beans (drained & rinsed), eggs, oil, cocoa powder, salt, vanilla, and sugar to the blender pitcher and blend at high speed until well combined and smooth. (If using a Vitamix, blend for about 1 minute on high speed.)
  3. Pour batter into the baking dish and bake in preheated oven until the top of the brownies appears dry (about 30 minutes).
*Note: the baking powder was not in the original recipe but was added to give the brownies a little more of a cake-like texture, so it could be omitted if necessary
 
The other great thing about this recipe is that I was able to slide a fork under the edge of the brownies (because the pull away from the edges a little) and then lift the whole slab out of the pan. I wrapped it all in plastic wrap & put it in the fridge. It is VERY moist, so after being in the fridge for a while, it is even more fudgy now. I plan on cutting them into individual serving sizes and freezing them so we'll have treats for Raya when we need them.

Wednesday, September 4, 2013

Photo therapy

Today our morning started out like this:
Shoes off in the car on the way to school, refusing any attempts to help put shoes back on, refusing to get off the floor & get the feeding pump backpack on, crying, kicking, screaming, yelling at me, kicking my seat in the car all the way to school, trying to take off the pump backpack, and so on. No apparent reason for any of it. It was an ugly morning at preschool dropoff.

On mornings like this, I sometimes have to look at pictures that help me forget about the condition she was in when I left her at school. (Maybe I should send some to her teacher too.) Pictures like these help:

the "I was so tired I fell asleep with my backpack on" face
The post-op "they took my IV out too soon so I'm dehydrated & need more morphine" face
The "I had a major meltdown at church that was so bad Mommy had to bring me home early and then I wore myself out & fell asleep on the floor" face
The "Look, Mom! I'm eating pureed beans voluntarily and enjoying it!" face (haven't seen that face in a couple years)

The "I fell asleep sitting up" face
The "I have an ear infection so I'm just going to snuggle with the shampoo bottle" face
the "I'm cute even with this tube on my face" face
the "trying to say my own name but don't know what to do with my tongue" face
the "I'm gnawing on bacon and I LIKE it!" face
the "hospitals suck and I wore myself out fighting with nurses" face
the "no matter how hard I try, sometimes I accidentally snuggle with Mommy" face

And last but not least, who couldn't love this one:
The "Hey, you're a lot like me!" face

There. I feel better. Hopefully Raya has stopped throwing her fits and is having fun at school.
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